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Iron Overload

Iron Overload

You can now purchase Ironology™ Iron Panel to determine or confirm both your iron status and the adequacy of your natural antioxidant defenses by clicking above.

This section will focus on excess iron.

3331 comments (Add your own)

1. kim wrote:
How high are your Ferritin levels when diagnosed? What side effects did you have with high iron levels? Did you have other issues such as blood disorder or disease? What treatment have you received since your diagnosis? Any tips on holistic medicines? Any one tried them?

Thu, March 3, 2011 @ 5:36 PM

2. Dan wrote:
Ferritin 960 when diagnosed. Had no side effects with high iron. Had no other issues. Had several Phelbotomies,now on once every nine months remove 1 pint.

Thu, March 3, 2011 @ 7:01 PM

3. kim wrote:
That is good news. I was glad someone responded so quickly. I am wondering if there are many people like me.

Fri, March 4, 2011 @ 10:40 AM

4. TOM G. wrote:

Fri, March 4, 2011 @ 3:01 PM

5. rhonda wardell wrote:
My iron level has been over 300 the last two times I had it checked. When should I start to worry about my numbers?

Sun, March 20, 2011 @ 6:49 PM

6. Stacy wrote:
Normal for post menopausal women is 10-310. If you are postmenoapusal 300 is still within the normal range. Did your doctor talk to you about when to get re-tested?
Here are the norms:
Females less than 40 years old = 10-120
Females greater then 40 years old = 10-235
Females postmenopausal = 10-310
Males = 15-455
Hope this info helped.

Thu, March 31, 2011 @ 12:09 PM

7. Joe wrote:
I had been having abdominal pain for several months. My liver enzymes were high for 6-7 years, but doctors said it was from having a fatty liver. After having joint pain , primary ordered iron test and ferritin was around 900. I had the genetic test and found out I have one C282Y mutation. At 42, diagnosed with HH and started phlebotomy's.

Sun, April 10, 2011 @ 11:25 AM

8. Kathy wrote:
I have not had my ferritin tested but my saturation level is 84% and my TIBC is 230 and my total iron is 193. Do I still need to do the ferritin test to get a diagnosis?

Tue, April 12, 2011 @ 4:32 PM

9. Joe wrote:
I was wondering what everyone's nationality is. I'm a male white 43, Italian and Irish, HH is from the Irish side of the family. Single mutation (C282Y), phlebotomy's once a month for about 9 months and Ferritin levels down to about 350-400. However still experiencing joint pain: hands, knees, & ankle. Any one else have similiar pains?

Wed, April 13, 2011 @ 8:40 PM

10. Donna wrote:
Hi I am 47yr female, who going into the medical field 20yrs ago questioned my symptoms and iron levels back then. It was not until July 2010 that I was diagnosed with C282Y/C282Y. I have inherited a gene from both of my parents. I was the first of all family members to be genetically tested. Unfortunately my mother died 3yrs ago and after discussing now with her Dr. alot of her illness was most likely due to the Hemochromatosis. Also my maternal grandmother died at 40yrs from a so called heart attack. My paternal grandmother had phelbotomys but never really understood why, and was never geneticly tested. My brother also has a positive diagnosis. Through testing I was told I have iron deposits in my liver. My levels at the time of diagnosis were only in the upper 400's however I had severe joint pain, heavy chest, shortness of breath, and extreme fatigue. Headaches. I believe the symptoms vary from person to person. I was going for weekly phelbotomy's for quite sometime. Once my ferritin levels reached 50 I was able take a break.. I have just had a recheck today and will have a phelbotomy again next week. I am very interested in doing more reasearch on this disorder that is so misunderstood and silent to many. I have my treatments at the ONC/Hemo office however I must pay a co-payment each visit not to mention they dispose of good blood. I am very interested in anyway I can to help educate the public.,as well as the medial profession. I have been in the medical field for 20yrs. and am very much a patient advocate. I live in the Central Valley and am looking at starting a support goup. Also I am looking at any support goups/information/conferences related to hemochromatosis. If anyone out there can help me locate any updated information please let me know. I do highly recommend the Hemochromatosis cookbook as well as the other The Iron disorders Institute guide to Hemochromatosis book. Please feel free to e-mail me with an comments. ddasilvarn@yahoo.com

Fri, April 15, 2011 @ 12:25 AM

11. Donna wrote:
Yes Kathy, I would highly suggest you ask to have a serum ferritin test. This test varies by gender as well as age. For hemochromatosis Pts. recommendations maintaining serum ferritin levels usually from 25-75%. Check with my physcian. But this is a simple blood test. Persistance/peace of mind.

Fri, April 15, 2011 @ 12:40 AM

12. Donna wrote:
Rhonda, what part of your Iron level is high? TIBC? ferritin?

Fri, April 15, 2011 @ 12:43 AM

13. Donna wrote:
Joe, I have double mutations C282Y/ I inherited a gene from both parents. My mothers side of the family are Native American and from Oklahoma. My father side Black Dutch/Irish/German. Since bringing my ferrtin below 50- I have experienced less fatigue as well as less joint pain, My shortness of breath has also improved. I am careful with my diet/eat pretty much what I want. I have started cooking with coffee, and would highly recommend the Hemochromatosis Cookbook. It was really helpful for me especially to know the help inhibiting iron absorption include phenolic compounds, , eggs, calcium. Polyphenols are phenolic compounds, including chlorogenic acid, found in cocoa, coffee, and some teas and herbs. So having a cup of coffee/tea/milk with meals help inhibit iron absorbsption. Taking vitamin C will increase the iron. No raw shellfish. Something that totally surprised me if you like cereals just check out the iron content in a few of the boxes. I found one the other day 100% iron. Hope some of the info. helped.

Fri, April 15, 2011 @ 1:04 AM

14. Joe wrote:
Thanks for the info Donna. Very Good, info. I just made the stuffed chicken breasts from the cookbook last night and am in the process of reading the" Medifocus Guidebook" and the "Guide To Hemo". I'm in New York and Speading the word as well.
Information in these books say a person must have two mutations in order to develop iron overload. I am a C282Y Heterozygote, (One Mutation only) and I suffered for about ten months before they found out it was HH. Abdominal pain, high liver enzymes, excessive urination, and chest pains. The doctors even ordered an angiogram for me, and came back with no blockages. My brother has one C282Y mutation as well. When his children were checked, two of three were diagnosed as Homozygous( C282Y,C282Y) and the third was Heterozygous.His wife, who is all Irish, is carrying the single C282Y mutation.
Any one out there who only has one Mutation , please have your iron levels checked frequently.

Fri, April 15, 2011 @ 11:46 AM

15. Jacquie wrote:
I was diagnosed with HH 15 years ago. My ferritin levels have never been as high as most of the levels mentioned here by most of you. I went through the thrice weekly phlebotomies until my levels were in the normal range. I have not been to a doctor in 4 years for many reasons, however, I have been able to donate blood at common donation intervals but when my hematocrit levels appear a bit high, I find a second, non realted blood bank and donate again without waiting for the normal interval. This system has worked for me until recently. I went to donate blood but was rejected because my iron was too low!!!!!!! I tried again a few weeks later and again it was too low!!! I have been able to have blood work done and now it appears that my Iron is 20, Trans%Sat 8, Ferritin 7 and TIBC 257. My TSH is 2.79 I am a 56 year old, post menopausal woman.
What has happend. Should this be alarming?

Mon, April 18, 2011 @ 4:39 PM

16. mark wrote:
My iron level? was 1261 pretty high I think so have to give 1/2 bloody every 2 weeks. The liver is now shot to bits but consultant has given me 4 months off treatment as a rest. Should I question this decision. I am 55 yr old male and have lost 30 kilo since treatment began. Get knackered quickly but other than that I feel ok mind you 11yr old daughter keeps me busy.

Wed, April 20, 2011 @ 12:54 AM

17. Pat wrote:
I have had slowly increasing Ferritin levels since 2000. At that time the ferritin level was 375 then in 2001 it was 451. This year I had some health concerns and My family Dr. ran blood test in Jan 2011 and the ferritin was 876. I had another set of blood tests in MArch and ferritin was 1176. I came back negative on the c282y gene test.

Liver enzynmes have always been borderline high

I have not been diagnosed yet and am not being treated at all. How fast do you need to start treatment?

Wed, April 20, 2011 @ 6:44 PM

18. Terri wrote:
I recently change doctors and one of the first thing they do now is run a complete blood work and various other test. When I went back to my doctor for a follow up I was told that I had extremely high iron and it was affecting my kidneys. He told me that I had to go on a low GI diet.. Has anyone else received this kind of information? Im very confused Im not sure now what test this dr has done to come to this conclusion. He told me I was at 1265 and that I was suposed to be between 10-125. Im 46 and female. Ive been told to get second opinion.

Wed, May 4, 2011 @ 11:43 PM

19. cindy wrote:
My husband was diagnosed with H.H 3 years ago and his ferritin level was at 2124 . He has now had a total of 48 phlebotomies and is now in the normal iron range. By the time
he was diagnosed, he had already developed cirrhosis , skin discolor, and several other
symptoms. We live in the Dallas, Texas area and I cannot seem to locate a Doctor that
treats this specific disease. Any help would be greatly appreciated.

Thu, May 12, 2011 @ 3:29 PM

20. cindy wrote:

Thu, May 12, 2011 @ 3:59 PM

21. Donna wrote:

Many Doctors are still just starting to realize that HH is real. I was just diagnosed in July 2010, but was was pretty sure I had this back in 1990. Thank God I did not have any real problems until recently.

I work in the Medical field and am in the process of starting a support group in my area of the San Joquin valley of California. My mother died 3yrs. ago and I spoke with here Dr. after I was diagnosed. We know for sure that she had HH due to myself having both genes. I wish we would have know about this genetic disorder a few years ago. It is my hope to bring awarness to the public as well as medical professional that are now yet that familiar with the disorder...

In my experience Doctors that treat HH are usually Oncology/Hematology specialists

You also might try an Internal- specialist. Keep good records of medical history, ask lots of questions, most of all be assertive and persistant, with any Doctor that dose not appear to be good at listening to your concerns.

Fri, May 20, 2011 @ 1:14 AM

22. Valerie Rose wrote:
Hi Everyone!
I'm a 50 yr old female but had a hysterectomy at age 26; so when it comes to HC, perhaps think of me as a male!
I seem to have a "mild" case of HC--That is to say, my serum ferritin is only 650 (I've been told it has to get up to 1000 before they worry about it or before it can cause organ damage--Even though "normal" range ends around 150!).
My iron (transferrin) saturation is 63%.
So I guess my doctor is not concerned and sees no need for phlebotomy.
However I have extreme fatigue and premature joint problems/pain (especially hips, knees; also back. I'm about 25 pounds overweight--not enough to cause hip arthritis so soon!).

So my questions are twofold.
Primarily, should I be concerned? COULD my symptoms be a result of this "low grade/mild" HC?
Do you fellow HC sufferers find problems with fatigue IN BETWEEN phlebotomies? And do they allow you to get back up to 1000 again between maintenance phlebotomies? If so, and no one suffers fatigue in between, then it would seem my Doctor is right. But several of you here seem to state even lower Serum ferritin levels than me!
Related--does anyone know WHY Hemochromatosis causes fatigue? Does simply a high blood level of iron cause it? If so it would seem it IS effecting me...

Can anyone give me advice?

Thanks so much!!

Tue, May 24, 2011 @ 7:19 PM

23. Debbie wrote:
I am 52yrs skeleton lost 2 stone started losing weight in 2009 got a parasite as well l have gone through menopause from hell had a hysterectomy 20yrs ago but had my ovaries left. One gene H63D was bled at 425 last year, heaven on earth but don't have to much iron which affects my brain & gut but am finding medical people don't understand too much about it. l have turned into a hideous creature that is struggling to put on weight & pain from bones & organs playing up. Talked the doctor into putting me on hormones & it has caused things to pick up. I hope it works until l can get some answers.

Tue, May 31, 2011 @ 5:47 AM

24. Nicole wrote:
Valerie Rose, and anyone else with ferritin >500, please seek treatment now. Do not wait for ferritin to go above 1000 before treatment. Why wait for organ damage before starting treatment?? Your body is hording iron. It's not like it's suddenly going to change its mind and have a garage sale to get rid of it! See an Internist or Hematologist to prescribe phlebotomies to get it into normal range. Once normal, which may take a year or so to achieve, then do 2-5 donations per year as maintenance.

All, I was able to register with the local blood bank's HH donor program. (Carter Bloodcare in Dallas.) They do my phlebotomies for free, and they are able to use the blood for transfusions. Win-win! It took a couple months to get set up. I have to make an appointment ahead of time, and I have to go to certain donation centers during business hours.

I was diagnosed with HH a few months ago. Ferritin was 828. Saturation 66%. Rx is phlebotomy every 2 weeks. My veins aren't great. I do hydrate a lot for two days before, so when they get a vein, the blood flows. Any ideas to improve veins? Maybe exercise?

Best part is that treatment is FREE, and they can use my blood for transfusion.

Wed, June 15, 2011 @ 7:32 PM

25. vanessa perry wrote:
In regards to Nichole's question about how to improve veins?
It takes about 2-3 days only to notice softness of veins, when you take omegas and/or vitamin E.

Mon, July 4, 2011 @ 12:04 AM

26. Amy wrote:
I am a 38 year old female, recently diagnosed with, genetic hemochromatosis in January. At the time, my ferritin level was 497. If my hair hadn't started to fall out, my family doctor would have never thought to run the serum ferritin test on me...as topsy-turvy as my life has become, I will always be grateful for her thoughtfulness, and thankful that my hair started to fall out! I did two months of therapeutic phlebotomy and my level fell to 197, but I was told I had to stop the TP because my hemoglobin fell below 9. My last visit, in May, to my hemotologist showed my ferritn up to 297...I will know next Friday how high it is now. I can feel that it will be higher...my fatigue is out of control and my hip pain is going back to being annoying, even laying in bed. Although my hemotologist said to "limit" my consumption of meat, I have "eliminated" it and I feel a lot better after I eat. My hair has stopped falling out, and is now growing back. I know I am not the youngest female out there with this, but here, where I live, I feel as though I am. I have encouraged my sister to be tested and she is fine; other family members do not see too concerned and I feel isolated and treated like this is only my illness...I have a huge family, I know I am not the only one that has this...I very glad I stumbled on this blog. Hope you all are well, and are hopeful; I know, I need the hopefulness.

Sat, July 9, 2011 @ 12:39 AM

27. Ruthie wrote:
Listen guys...start to notice the nutition labels on all the food you buy. Just about all of it has iron added to it, and when you add up the combined servings each day it's scary. I have been really concerned for awhile, and now that my MD notes an elevated iron level..(I was high normal last time)..I wonder if this issue is contributng to this problem. I do believe a sick society is good for profits. take care

Sat, July 30, 2011 @ 6:23 PM

28. Diane wrote:
I had my ferritin serum tested for the first time ever in July2011 it was 437. I did not have any other iron levels checked at that time. I had a complete hysterctomy in 1996 I am 56 years young :) during this time have never had iron checked!! Which now amazes me. I have been taking vitamins with extra (much! extra) iron for quite some time. Quit taking the iron vitamins and felt better immediately. My symptoms were tired and felt "foggy". I have had a one phelbotomy and am now looking for an internist to go and have complete blood work done.

Fri, August 19, 2011 @ 2:43 PM

29. Jan wrote:
I was diagnosed with hemochromatosis 2 weeks ago. Ferritin level is 2380 and trans sat is 95%. and positive DNA test. I am scheduled for a liver biopsy next week and start phlebotomies in a few days. (liver enzymes slightly elevated). I am a 46yr old woman who works over 50 hours a week, used to love to golf, played the piano, and jogged as often as I could. I never smoked, watch what I ate and pretty much lead a healthy life style, never liked lying around on the couch. Approximately three years ago everything changed, I started have symptoms, pain in my hands, arms,neck. Extreme fatigue, heart flutters, hard time concentrating, confusion and many other symptoms. I was never one to go to the doctors, mostly because of my time restraints. But if I could go back in time I would demand these doctors take me seriously and run more tests. Because of these physicians not paying attention to my symptoms and only relying on routine type tests, my chance now of no organ damage is much less. And who knows how much time they took off my life. I know my body and I knew something was wrong. I kept telling my friends it felt like my body was being poisoned. (That is the best way to describe the way I feel). I live in Pittsburgh Pa and we are supposed to have some of the best doctors in the world and I can't believe how little the doctors I have seen know about this disease. If we had physicians who would treat their patients like people and not numbers, more people could be properly diagnosed. If any body has symptoms of hemochromatosis I would tell you to go to some kind of specialist gastronologist or hematologist. Primary care physicians seem to be clueless. I did a lot of research by getting copies of my blood results from the hospitals and researching over the internet. Knowing the results of the DNA tests have atleast giving me the reassurance that my symptoms are real.

Sun, August 21, 2011 @ 12:34 PM

30. Cheryl Mariscal wrote:
Jan it hit me hard at age 43, even though my ferritin was only 799 my saturation % was 87%, when they did the liver biopsy they were surprised to find the liver was full of iron. I to lived a health lifestyle, but had a hysterectomy in my early thirties, this didn't help with our condition, but I had quit menstrating at age 33, another symptom or clue to the puzzle..then the fatigue, so bad I couldn't function, and of course my GP said it was depression, I gained 80 pounds, the fatigue was even worse, turned out, I had no thyroid function at all, but the doctor I was seeing actually made fun of the fact of my high iron and said most women would love to have that problem. Six months later my husband changed jobs and I found myself in the emergency room of Kaiser in Fresno, my oxygen levels were 48%, I felt like I was dying.. The doctors called my family and said I wouldn't make it through the night, they can't figure out why my oxygen levels are so low, my heart was enlarged and I was dx with cardiomyopathy, but that wouldn't cause low o2 , then my ferritin levels came back along with my clotting time . We started phlebotomies every day. It was every day because the nurses were only getting between 50 & 125 ccs a day. My veins would collapse , the lines would clot, I would get poked anywhere between 9-20 times a day. After three months I had a liver biopsy it was still 100% saturated or a +4 and stage 2 cirrhosis of the liver. I still go for phlebotomies once a month, but I now have a fistula it took 3 1/2 years to get my iron levels down, but saturation levels are still at 56%.. ferritin is 30 we are going to take it down to 10, due to the fact I am symptomatic .

So as you can see the iron can iron do damage before it reaches 1000, listen to your body. Doctors still don't know a lot about this disease. And yes your symptoms are real. Good luck to you.

Mon, August 22, 2011 @ 8:07 AM

31. Jan wrote:

Thank you for your kind words. At 24, after my first son was born I was diagnosed with Graves disease (hyper thyroid) I had radiation treatment and now I take thyroid pills every day. I was wondering if that is why I'm not losing my hair so rapidly like other people. Although every week my fatigue gets worse, I can't make a fist in either hand, my joints hurt really bad and I'm noticing more symptoms of liver damage, unfortunately I'll have to talk to my boss about possibly part-time. I cant understand how people can work alot of hours with with disease. The other thing I can relate to is the doctors I have seen from family practitioner to orthopedic all said I must be depressed that is why Im so fatigued. Why are doctors so willing to prescribe anti depressants to females in their 40's. Maybe its just an easy fix and they figure woman are emotional. Needless to say i've turned down the anti-depressants and its amazing now that Ive been diagnosed (DNA test) how much the doctors pay attention to me. I wish you all the best, try to stay strong....I'm really nervous about the biopsy Thursday...I just want to feel better. Thank you so much for your response!!!!

Mon, August 22, 2011 @ 5:06 PM

32. Cheryl Mariscal wrote:
It is amazing how many woman who have HH actually have thyroid problems as one of their primary & first symptoms. And yes most doctors are quick to hand out anti depressants to women of any age, which aggravates me to no end! Like I told the doctor who thought it was great I had so much iron, that after putting up with doctors like him I could see why his patients need anti depressants, and never went back..I am with you, I get depressed occasionally, but not to where I need to take anything, and with doctors assuming it's all in our head, they make us depressed. When I got my DNA test back I actually took a copy to the doctor who thought I was depressed & told him how I spent 10 days in the hospital & almost died yet he thought it was great to have extra iron.

I am sure your biopsy will go fine, what is great is that you will know if there is any damage to the liver. I hope you feel better soon. Before you know it Thursday will be here & gone and this will just be another chapter in you HH life. My thoughts and prayers are with you. Keep posting to let me know how things go.

Or email me Cherylmariscal@yahoo.com

Mon, August 22, 2011 @ 6:37 PM

33. John wrote:
My wife was recenty diagnosed with HH. Her ferritin level is >1000.

Our first problem is that she is quite small (under 5 ft.) and has very small veins. This has been a long-standing problem for her; most nurses seem to have a hard time even getting a blood sample from her.

Hospital sent her two times to the blood donor room and were unable to draw enough blood. Her veins collapse and roll.

Hospital is "discussing what the next step should be." This has been going on for 3 weeks now.

Diagnosis was confirmed with a liver biopsy. She feels OK, and they say there is only minimal liver damage so far, but we are getting concerned that the treatment hasn't begun.

Should we be concerned ? Are there alternative treatments ? Surely she can't be the only one with this problem.


Tue, August 23, 2011 @ 5:26 PM

34. Janet Cummins wrote:
I need some answers. My doctor's are not able to figure me out. My name is Janet and I am 46 years old. I had a hysterectomy when I was 26. I was finally diagnosed with hemochromatosis C282Y/C282Y 3 years ago. My ferritin was at 641 and it took 9 months of weekly phlebs to get me to maintenance. About 6 months ago I started to feel fatigued and had body aches. They found out that I came down with Epstein Barr Virus EBV (mono) and that my T3 and T4 (thyroid) was low with a normal TSH level. I lost 40 lbs during this illness. After 6 months I still show that I have EBV. February 11th ferritin 81 then I donated February 25th and in early March my level was down to 56. Then I was tested 1st of August and my ferritin went down to 25. How can this happen? Since with hemochromatosis you are suppose to accumulate. Hematologist had no answer. Rheumatologist told me that I have fibromyalgia. My primary care seems to not care. Do I start having phlebs or do I just wait some more. I still have a lot of pain with my joints and muscles with fatigue and my sleeping pattern is off. Please if you can give me some answers that would be great. Or if you know of a good doctor in Colorado.

Tue, August 23, 2011 @ 11:33 PM

35. Cheryl wrote:
John & Janet,

I am not a doctor or a nurse and can only speak from my experience & living with HH since 1999.

I had similar problem John, my veins would clot up after taking out 10 ccs of blood, they were so small it would take between 5-9 tries before getting the IV started this would continue everyday for several months until the doctors put in a central line.. My first one clotted off in one week the second & third lasted a little longer but finally came out. My nurses in the infusion center along with my & infectious disease doctor since I kept having several infections, decided it was better to do a fistula like they use for dialysis patients. I have been using this since 2002. It is my third fistula the first two clotted off.. This is my own experience and I am not advising your wife to follow suit just for her to talk to her doctor. Best wishes to her. I know it is not fun.

Janet you mentioned you were dx with EBV, you got delt a double whammy, I am not sure about EBV, but I do know that when I have an infection or my arthritis is really acting up my or if there is some sort of trauma going on with my body, my ferritin levels always rise, then when the crisis is over the level recedes to pre crisis levels..sorry to hear about the fibromyalgia also.

Again I am not a doctor just my own life lessons.. Good luck to both of you and your wife. Hope this helps..

Wed, August 24, 2011 @ 5:58 PM

36. jan wrote:
Hi Cheryl,

I had the liver biopsy (ouch!!!) hopefully I'll never have to do that again and the next day I had my 1st phlebotomy, needless to say I was pretty wiped out.....I went to a hematologist today, he said my iron level was 4+ with inflammation, no signs of cirrhosis. Because of my high ferritin 2380 and iron level he wants me to go twice a week for phlebotomies. He also requested a saline line be ran at the same time. I also have more lab work to check for diabetes and heart tests, cardiac echo and 24hour holter to wear to monitor heart rate. But what I'm most concerned with is...I noticed my fingernails and toenails turning purple. I have this terrible sensation in my arms, hands and legs. It's almost like a surge of adrenalin right before my hands and feet go slightly numb. It affects me mostly at rest and I can not sleep more then 4 hours before it wakes me up and I have to move around to feel somewhat at rest. My hands and fingernails are very sensitive and when it bothers me the most the veins on top my hands get very large and its getting worse as time goes by. Maybe this is why he's doing all the heart tests? Have you ever experienced anything like this? If you have time any advice would be really appreciated... I hope you are feeling okay...Thanks Jan.....

Mon, August 29, 2011 @ 10:52 PM

37. Cheryl wrote:

Liver biopsy is no fun.. Glad that chapter is over for you & now you can find out where to go from here. Happy to hear no cirrhosis, that is good news.

Awe, all the cardiac tests, they are a bit annoying but are much needed. They will let your doctors know if there is any damage to the heart & if so it will give them the direction to go. And to answer your question yes my fingernails & toenails were constantly purple when I was first dx, my dr told me it was due to my low oxygen levels, but they are normal now. My left foot has some numbness but that has to do with a herniated disc. My hands & feet do get very cold though.

So when are you expected to start your phlebotomies ? Hopefully your numbers will go down quickly, and you will start to feel better. Let me know how your phlebotomies go & keep me posted as the results of your tests come in. Feel free to email me.

Your HH friend

Tue, August 30, 2011 @ 11:52 AM

38. Jennifer wrote:
Can anyone give me feedback on my sons test results. I have HH (Homo C282Y) and my husband is hetero for H63D.

My son is 4 years old:

Iron 146 (range 50-120)
Transferrin Saturation 38% (range 15-60)
Ferritin 12 (range 22-322)
Transferrin 271 (range 200-400)
AST 39 (range 10-40)

Should I be concerned? I already intend on monitoring his levels but should anything else be done at this time? Doctors say his iron is ok where it is at but it is already elevated so....

Tue, August 30, 2011 @ 12:16 PM

39. Jason wrote:
My genectic tes for hemochromatosis was negative. We (LIver Specialist & I) are checking for hepetitis and i'll have a CT on Sept. 9th, 2011. I partook in a blood test voluntarily in 2008, tested for all the biggies and my blood was negative to all of them, so I think testing for hep c is a waste of time. i had an extreme iron overload this past spring.

I am trying to find a chart that i might enter my ferritin levels that gives possible causes and risks att each level. I can't find any graph that goes high enough. Avg. norm for males is 100. Mine was nearly 4800 at it's worst. Insanely high. I was back down near 100 after 5-7 flebotomies. I was aneimic at the same time.

Do any of you out there have any insights into thise extreme.shift in iron levels?

Fri, September 2, 2011 @ 3:54 AM

40. Ken wrote:
Can high ferritin cause shortness of breath?

Fri, September 2, 2011 @ 4:53 PM

41. Linda wrote:
Hi, this blog is wonderful. I am 51 and was just dx by my doc with HH. I have compound hetero, meaning one mututation of each gene C282Y and H63D. She referred me to a hematologist who is taking a wait and see approach. My levels are VERY low compared to all of you, but I have been on the watch for it for the last 2 years (they thought my father might have it). I am at 58% sat with a ferriten of only 279. After reading everyone's comments, I think I will go for a second opinion with another hematologist. Some of his comments bothered me like"your skin isn't bronze" and "only a tiny percent of people get this disease" and "there is no special diet for this". I already have liver problems, diabetes, asthma, bone spurs in my neck, arthritis, bursitis and tendon and ligament problems and my hands are starting to bother me. I already eat kind of a low iron diet naturally. I wil be cutting out the fortified cereals!
Thanks to all of you willing to share your stories, people like me can get help early and try to minimize the damage to my body. Your blogs make a difference.

Sun, September 4, 2011 @ 7:28 AM

42. Linda wrote:
Oops, gave my stats wrong. Iron 279, 59% saturation, ferritin 302. Again, thanks to everyone, keep blogging. You are helping people like me as well as yourself.

Sun, September 4, 2011 @ 7:42 AM

43. Stephanie wrote:
Hello, my name is Stephanie. I am a 25 year old female and my serum iron has been slightly elevated the last couple times I had a blood tests done. I do not take any type of suppliments. The last one was high enough to really draw my attention. My last lab results were as followed:

Serum Iron: 281 (normal: 16-132)
TIBC: 408 mcg/dL (normal: 280-400 mcg/dL)
% transferrin saturation: 69% (normal: 15-50%)
Ferritin: 28.47 ng/mL (normal: 13-150ng/mL)

Would having an elevated serum iron/% transferrin saturation with a normal ferritin level be cause for concern? No one else in my family has any history (that I am aware of) of any type of iron overload.

Appreciate any feed back :) Thank you!

Tue, September 6, 2011 @ 2:51 PM

44. Mary wrote:
When diagnosed 3yrs ago my ferritin level was only 455 and saturation 70 % but I was so weak and in such pain in my joints I couldn't work. (have an active job,delivery driver) After phlebotomy treatments felt better and was able to go back to work, still achey and tired but much closer to being "normal" At the present am feeling worse, muscle weaknes and stiffer joints which I was sure meant I need to give blood. But my ferritin is only 44 and I haven't given blood since March of 2010. Is it possible my body is saturated when my ferritn is low? My Dr. just uses ferritin level to keep up on how I'm doing. I do watch my diet but am amazed I'm not storing hardly at all with HHC. Had an EKG this year that seems normal other than I have slow resting heart rate, 57. Dr. doesn't think there are any problems there. I'm 55 yrs old and have always been active and really feel that my problems stem from HHC not age, since that's when my issues started. Friends and family are always quick to remind me I'm not getting any younger, but I don't think I became old overnight. Any input from you all would be appreciated. Thanks much

Sat, September 10, 2011 @ 2:39 PM

45. Monica wrote:
I have been losing weight for a solid year now. I've had abdominal pains on the upper right side as well. I'm a 27 year old female and last week I had blood tests come back with my iron at 249, liver enzymes elevated and elevated glucose. My primary told me not to worry about it, but I feel like I should be worried since I was always small and now I weigh only 79 lbs. Something has got to be wrong. Should I find a new doctor? Do I need a specialist?

Sat, September 10, 2011 @ 8:42 PM

46. Mary wrote:
Monica, I would certainly find another Dr. to listen to you. We know ourselves better than anyone and you have to fight for yourself. I saw 6 or 7 doctors before I was diagnosed and a specialist even told me I had fibromyalgia. If I had listened to him my disorder would have eventially killed me. There are good doctors out there, maybe someone you know could suggest one. Good luck Mary

Sun, September 11, 2011 @ 1:43 PM

47. markem wrote:
After reading this blog for the first time, I'd
like to make a few comments.
Hemochromatosis affects everyone differently. Some folks start to develop "symptoms" at Ferritin levels as low as <500. Others don't notice anything and have a Ferritin level greater than 1000. The numbers and guidelines are just what they are - "guidelines, not rules.
The key thing to remember is to "Get The Iron Out". It doesn't matter if you are homozygous or heterozygous or not anything at all, if your iron levels are high you should give blood and lower those levels. It is the high iron concentrations in your body and organs(Ferritin) and your blood(Transferrin Saturation) that give you the iron overload symptoms.
Regarding discussions about having a liver biopsy. After i learned from the gene test that I was homozygous C282Y, my doctor said i should get a liver biopsy. By that time I had read up on this disease and asked why we needed that. He said it was to see if there was any damage to the liver. I asked what will we do if there is damage and he said give blood. So I asked what if there is no damage and he said give blood since my iron levels are high. I determined that doing a biopsy was a waste of time and money because the course of action was the same. They used to do it before they had the gene test to determine whether you had Hemochromatosis. Now you don't need it for that so if your doctor tells you you need one I would question that decision. I think that it implies that your doctor is not as up to speed on this disease as he should be.
Mary, I would request that they test your Transferrin Saturation in addition to Ferritin. It took me a while to figure this out but my Ferritin could be low and if I didn' give blood for a while my TS% would increase and I would begin to experience the same iron overload symptoms.
To all, remember that your doctor is looking after many patients. You are the one most concerned about you. Be proactive, ask questions, read as much as you can. The internet is loaded with information. There is a good forum on the Canadien Hemochromatosis Society site as well. Keep good records so you can help your doctor and make informed decisions. Hope this helps and good luck to all of you! You are not alone in this fight. There are many of us out there fighting the same battles! Thanks for the your time, Markem

Sun, September 11, 2011 @ 11:16 PM

48. Rachel wrote:
Hi there,
Well I'm getting more and more scared reading all your blogs. I have just celebrated the one year mark of remission from Leukaemia. However, since a few months after coming out of hospital I have had a very high ferritin level. The specialists for quite a while were saying that there was nothing to worry about, and it was related to the amount of blood transfusions I had had whilst in hospital for 4 months. It was already then as high as 8, 230. Now it has increased to 8,600. I see a liver specialist on Tuesday, and having read your messages, feel a bit more clued up about what I need to ask. I'm also feeling angry that the situation wasn't deemed more important earlier. My veins caused me a lot of problems during my hospital stay, and I feel apprehensive about what lies ahead of me.

Fri, September 16, 2011 @ 6:18 AM

49. Michelle wrote:
My 18 year old son was found to have elevated liver enzymes when getting baseline labs to start an acne medication.
Mult other tests... enlarged liver found on exam and liver ultrasound.
Ferritin = 1598,
total biliruben = 2.2,
white blood count = 12.4.
Negative ANA and mitochondrial antibody - I understand this makes acquired less likely, and hereditery more likely?
Symptoms of fatigue only.
Just got genetic tests and further iron studies drawn today. Sees Internal Medicine MD again in 2 weeks.
MD says may still be hereditary or acquired Hemochromatosis.
No family HX, but some male relatives on my and my husband's side of family that seem to have had heart and Diabetes issues early in life...
Would my son have the juvenile type since his Ferritin is so high at such a young age?
This is all incredibly frightening.
I am worried that we should not be waiting for 2 weeks to start phlebotomies...

Fri, September 23, 2011 @ 9:52 PM

50. Ngaire wrote:
61 year old female in what I thought was really good health. Proper weight, good diet and a very happy life. Checking for a hair loss issue with a blood test found Iron saturation at 93% and Ferritin at 1025. No other symptoms of any kind.

Found two hermatogists in my town that seem to be excellent on "Best Doctors Lists" I will get an opinion from them both. The question I have is does anyone know how quickly liver damage can develop from an iron overload. It is rapid or slowly developing . I looked at my last blood test 5 years ago and my Ferritum was only 100. I am about to go on an extended vacation for a month does delaying treatment of blood letting add additional risks?

Been researching ALL day the medical sites as I am sure you have also done but this BLOG has more down to earth answers than most of the information I read. I will add any information I can to assist others as things progress.

I agree you must take charge of your own situaiton, learn as much as you can, find a specialist and if you do not like the treatment change doctors.

Sun, September 25, 2011 @ 1:58 PM

51. Joe wrote:
Michelle. don't wait, have your som give blood right away an d recheck numbers. My son is now ten and gets checked once a year. When he is eighteen I;m going to make sure he is tested often. He has the single C282Y like I have. However, I don't want him to suffer like I did. Remember, we all need to see our doctors frequently and pass the word about HH.

Mon, September 26, 2011 @ 7:11 PM

52. Michellle wrote:
Joe, Thanks for the advise regarding my 18 year old son...
We have an appointment with a Gastroenterologist coming up in 2 weeks. and they have had him get blood drawn to help rule out secondary causes.
Do not want to do phlebotomies till all tests are back, as they say some secondary causes can elevate Ferritin but not actual Iron?
Dr is stating that he may indeed have Hereditary Hemochromatosis, but since so young, prob also has a secondary cause such as a viral infection or autoimmune disease, otherwise he would not have such high Ferritin at such a young age. He is actually still growing, and I guess Ferritin/Iron usually does not build up very rapidly till after kids stop growing?
I am so glad that the high levels were found "accidently" and hope he does not have too much liver damage yet - Dr's have already said since it is enlarged, there is some damage...
This is so very frustrating. I wish it were me instead of my son. I hate that he has liver damage at such a young age.
Of course, if he does have HH, my husband, daughter, and I will all have to get checked as well as our siblings.

I am so glad this site is here. I have learned so much! Thanks!

Thu, September 29, 2011 @ 7:08 AM

53. Jackie wrote:
My 27 yr old daughter has been suffering with extreme fatigue, severe knee pain, sporadic hip pain and regularly looks 'wiped out'. She is a certified personal trainer and has been health and diet conscious, if not fanatic, for several years now. She went back to the dr last week due to fatigue and he ordered blood tests. Her iron serum is 245, hemoglobin 15.4, hematocrit 45.7, and another surprise was total cholesterol of 214. I don't see anything on the test results that look like ferritin results,but maybe we do not know what we are looking at? We haven't talked to the dr yet and am wondering if the 245 iron serum is seriously high and does elevated iron go hand-in-hand with her other high test results? Any sharing of information and experiences will be greatly appreciated. Thank you, all.

Sun, October 2, 2011 @ 9:02 PM

54. Natasha wrote:
My husband was diagnosed with hemochromatosis about 10 years ago and then diabetes from the results of the iron damage. At times he is frustrated with the care he receives from physicians. Unfortunately, neither he nor I believe he is seeing the right doctor. There is something about having to explain what hemochromatosis is when calling the doctor's office that makes you wonder. My husband become irrated with his doctor and has not been during the last six months. I know he probably is in desparate need of having a phlebotomy done as his ferratin is normally high. We are currently searching for a new doctor. I am not looking for a doctor recommendation, but what types of questions can we ask future doctors to make sure we are getting a doctor that knows hemochromatosis? Does anyone know of a website that list doctors that treat this disease that we would be able to interview before making our next selection? Unfortunately, we are located in a small town in the Midwest. But several big cities are available within a 2-3 hour drive for us.

Tue, October 4, 2011 @ 2:02 PM

55. Linda wrote:
Natasha, I also live in the midwest and had bad luck with the first specialist I saw. My primary had suggested him. When I saw him, he said there was no diet, and I should wait a year, he could do a liver biopsy then, he didn't even look at my saturation level. He obviously wasn't knowledgeable on current practices. Anyhow, I suggest contacting the hematology department of a teaching hospital or reviewing the IDI's list of hospitals that have received a variance for collection/use of blood from hemocromatosis patients. I don't think there is any sure fire way to know about the doctor's knowlege until you speak with him/her. I think most who find a good doc for this condition/disease/disorder find them by recommendation. I am in the St. Louis area if I can help. Sorry I didn't have the answers you were looking for.

Tue, October 4, 2011 @ 8:42 PM

56. Cheryl M wrote:
Welcome to the world of HH. My suggestion is to look for a hematologist or a gastroentriolgist, either one should be knowledgeable in HH. Here are a few questions I asked when I was looking for a new hematologist. Plus questions I ask all my doctors.
1: Do you know what hemochromatosis is ? Do you you keep up on new developments on HH?
2: How many HH patients do the currently treat?
3: What are the guidelines they use to treat HH ? What blood tests do they order to check for phlebotomy ?
4: Can I get copies of all test results?
5: I ask how he/she feels about pro active patients.

For all other doctors my very first question is:

1: Have they ever heard of hemochromatosis ? If not, I just say thank you for meeting with me, and explain I need someone familiar with HH, & off to the next doctor.
2: I ask if they mind working with my HH doctor ?
( everything gets sent to my HH doctor)
3: Ask what kind of response time they have on phone calls?
(sometimes a fever is just a fever, other times it's a staph infection)

Hope this helps a little.

Fri, October 14, 2011 @ 12:28 AM

57. Cheryl M wrote:
Hello Everyone,
Well HH has struck again, since April I have had a "sore" back. It has now gotten that when I walk, stand, lay down or sit on hard a surface, I get horrible pain in my hips and feet. To make a long story short, it turns out the hip & pain in feet is actually caused by spinal stenosis, which was caused by arthritis. I knew I had arthritis in the hands & feet, but not the back..so much for the phlebotomies helping with arthritis.

The neurosurgeon says we will try shots & therapy, if the legs go numb I will need emergency surgery..it is just a matter of time, but the longer I can put it off the better.

Thanks for letting me vent...Cheryl

Fri, October 14, 2011 @ 1:04 AM

58. Lindsey wrote:
I'm 19, and already have liver damage from my hemochromatosis, i was wondering if there was anyone else out there my age and has problems with this dieases. I started having phlebotomies once every two weeks, then my iron levels got better......but i'm back to doing them every 3 months, and my liver feels like its bloating out...help??

Fri, October 14, 2011 @ 1:19 PM

59. Joseph Lee wrote:
I was diagnosed 10 years ago with HH and have had phlebotomies ever since, at first weekly, but in recent years only once every 6 months. My ferritin level has been declining consistently from the original level of nearly 500. But I recently began
having symptoms of weakness, restless legs, and poor memory. These began following a phlebotomy which resulted in a ferretin level of just 9. And while the blood was being tested, another phlebotomy was done. So the level wenrt even lower.. I learned from the nurse that the previous levels were 23 and 15. So I am now at the anemic level.

I have expressed my concern to my hematologist regarding symptoms, but he is unresponsive. I have not been given advice on raising my level or an explanation of why my levels were allowed to go so low. So I am very confused. I don't know if my symptoms are due to iron deficiency. And I don't know how long it will take to return to the low norm. I have only been told they won't do a phlebotomy at the next 6 month interval. I am posting this message to find out if others have gone from iron overload to anemia. Do doctors normally continue to reduce the ferretin level, even when it is below the low norm?

Mon, October 17, 2011 @ 5:55 PM

60. Tess wrote:
Does anyone knoe if high iron levels can lead to stroke. I have been diagnosed and have had a stroke 5 years ago. i had a hysterctomy about 6 months prior to the stroke and wonder if my iron had reached levels were too high causing it. My gene mutation wasn't discovered till well after this. Irish heretage, am now 55, continuing with venesections 3monthly to maintain low levels.

Tue, October 25, 2011 @ 4:49 AM

61. Cheryl M wrote:

I am learning that with HH anything is possible! If one really thinks about it, HH can cause the blood to become thick & depending on what else you have going on it can be possible for more clots to form. Good question to ask your doctor. Do they check how well your blood clots? What were your levels when you were diagnosed?

Wed, October 26, 2011 @ 2:37 PM

62. Missy wrote:
I just recently had lab work completed for my work wellness program and my TIBC level is 392, my iron level is 70 but my iron saturation is 1,800% and my white cell count is 0.0. Could the 1,800% be a mistake. I wll say for the past two years I have had major joint pain that after many test could not be explained and I have had fatigue. Any suggestions?

Thu, October 27, 2011 @ 11:45 PM

63. denise wrote:
Hello I am 41 years old and have Hemochromatosis.Over the last 14 months I have had 3 miscarriages. Does anyone know if the Hemochromatosis can have any cause with this.It seams most of my Doctors don't know much about Hemochromatosis.Any help would be appreciated.

Thu, November 3, 2011 @ 5:21 PM

64. Mary wrote:
I was diagnosed with Hemochromatosis approximately 1 year ago. My ferritin at that time was 1099. Now after 23 phelebotomies it is now 157 but I still have the extreme fatigue and arthritic pains that are no better. I was hoping that at this time I would be feeling less fatigued. Is there any material or tip available that helds manage the fatigue? Is there a list of supports available?

Mon, November 7, 2011 @ 5:34 AM

65. Lynn wrote:
I have been reading through this blog and it is really interesting! I would really like some advice. I am a 25 year old women and from South Africa. I went for a full blood count in september this year, my S-Ferritin levels were 154 ng/ml is this very high? The doctors say I must not worry. Should I worry? Must I go for a second opinion? Please help!



Sun, November 13, 2011 @ 11:03 AM

66. marion wrote:
i found out today .that i have very high iron//i have been reading the blog..i have to go for more blood work tomorrow ..hope all is fin4

Tue, November 15, 2011 @ 4:13 PM

67. tom wrote:
recently had bloodwork done and doctor called and said my iron level was high, total reading of 3.34, no idea what this means, cannot find any reference to a chart that shows normal readings
anyone have any idea what 3.34 reading is, and is it high for a man, 50 years old
doc says he wants to test me for genetic disorder since im from celtic background

Thu, November 17, 2011 @ 3:43 PM

68. peggy wrote:
I was told I hv hemo. little over a yr ago was wondering what prople thought about my #s the iron sat. is 63 TIBCis 215 and ferritin is 84 should i hv blood taken at this point or wait it out .

Sun, November 20, 2011 @ 12:05 PM

69. Liz wrote:
Wow! This site is AMAZING!!

Does anyone know if newborn babies can suffer from too much iron? Perhaps if the mother has this HH?

I have a 2 year old who could not tolerate any of the infant formulas now available. (Minnesota has banned ALL low-iron formulas, resulting in many different kinds of formula with all the same HIGH level of iron --- the daily dose now provides as much if not more, than the RDA of an adult woman!) My 10 year old had the same problem, so I knew immediatly once his temperament changed, he needed the low-iron formula. To my surprise, it had been banned. I did try all the formulas available before finally, against all doctors' wishes, found low-iron formula on-line. My son, who had begun crying for up to 12 hours a day, (blood-curdling screaming is more like it, not crying) was a completely different baby within 3 days of low-iron formula. I have been on a mission since to get the doctors and the state to acknowledge some newborns may still need this low-iron option with no support.

Please let me know if anyone has any knowledge of infants unable to tolerate the new levels of iron being forced upon them by the government's mandated standards of infant formula.


Wed, November 23, 2011 @ 7:44 PM

70. robert wrote:
sigh...just wanna vent.

Never heard of Hemochromatosis in my life nor in any news/magazines until my last blood work for routine yearly exam. I have been complaining about fatigue for about a year and everyone (friends, family and primary physician alike...) tells me i'm under stress. I believed them since I know stress can do many weird things in our body. But when I moved to another city/state for a job and with a new primary doctor, I found out that I have a high RBC (5.47 MIL/uLF), Hemoglobin (16.7 g/dL) and Hematocrit (48.9%) which prompted my doctor to test for Ferritin (699 ng/ML). I was happy and sad because, happy: there is a name that correlates with my symptoms and not just "stress"; sad: this seems like a lifetime illness.

I'm very alarmed to my current readings but after reading all the posts, my numbers are not as bad as I thought they were ( I hope and pray since i don't know much about it). In fact I have an appointment with a hematologist next week and is very anxious to what he has to say. Haven't been dx with hemochromatosis but my primary doctor is thinking that. Hence the recommendation to see a hematologist. Never been so scared in my life until after I found out that the same doctor works in a cancer center. sigh...but from asking around I heard that the same doctors who deals with blood disorder also works with cancer patients.

After doing a little research (about four days thus far) I am afraid that my son and/or daughter might have it. Aside from trying to learn what I should do to make my life normal, I'm also trying to find out if there is a mathematical way to figure out the chances my kids will have Hemochromatosis (HH? HC? heard it called many ways).

Another information i found is that this mostly affect Caucasian/European descent...i'm asian. Sigh...more reason to feel alone with this disease.

Just venting out. Don't mean to take up the space but better here than social networks (which some may think that this is that site but at least most have similar concerns as I do).


Thu, December 1, 2011 @ 7:29 AM

71. Brenda wrote:
Robert, from what I have read, if the parent has two copies of the gene, then the child would have at least one copy of the gene. The child could end up with two copies of the gene if the other parent has at least one copy of the gene. If both parents carry two HH genes then their children would have a 100% chanc of having two HH genes. If one parent has two HH genes and the other has just one gene, then each of their children would have a 50% chance of inheriting two genes and a 50% chance of inheriting one gene. People with one gene are considered carriers who are capable of passing on the gene to the next generation. Go to this site:

Nothing is more precious to us than our own children. It is painful to think of anything that has the potential to harm them.

Thu, December 1, 2011 @ 10:09 PM

72. Ken wrote:
Hello I’m a 53 year old male in the past six months I’ve gone from feeling pretty healthy to feeling like an old man I recently got back lab results that the serum iron level of 275 ug/dl I have had high iron results in the past Not sure what they were. Could this be the cause fatigue brain fog achy knees and back and in general just feeling like crap

Sat, December 3, 2011 @ 9:08 AM

73. Sam wrote:
before I start I want to say, please email me your comments if that is in anyway possible..
I am a 15 year old (ill be 16 on the 20th of December) female. I have had an increased amount of iron in my blood since I was 11. I always have sharp pains in the right lower abdomen. I am always very tired. and I have to get my blood checked every couple days to monitor my levels. on Monday my levels were high then they dropped to a normal range.,this morning my levels are back up....
my transferrin saturation: 48%
my iron levels: 380
please help me the doctor is trying to convimcee this is normal. these are my levels 4 days after the end of my 5 day period ..

Thu, December 15, 2011 @ 5:00 AM

74. Sam wrote:
my email is sgandee3@gmail.com

Thu, December 15, 2011 @ 5:01 AM

75. Pat wrote:
Does anyone have any experience with using chelation instead of phlobotomies?
I go to an alternative doctor and he recommendeds chelation for hemochromatosis.
I've also had serious joint/muscle issues and I wondered if they will go away once I get my levels down. He is giving me IV vitamins/minerals for the joint pain and to replace what may be lost through the chelation. My ferritin level is 927, Iron saturation 72, iron serum 208 & UIBC 80 (lower than normal).


Mon, December 19, 2011 @ 9:20 PM

76. amie wrote:
i keep getting low iron 2010 i was animic after i gave birth..dec 2011 ive been told my iron levil is 9 and that my liver isnt storing iron what dose that mean do i nned a liver tansplant ? im 26 pls help

Tue, January 3, 2012 @ 4:55 AM

77. Nina wrote:
Hi,I'm 46 year old female who had iron-deficiency anemia on/off for the past 6 years due to heavy menstrual bleedins. My ferritin was as low as 2. Now my ferritin level is 24 hemoglobn is 13 so, I don't have anemia but what I'm worried abou is that my iron level was 182 and transferrin 49 % in 2009, iron 165 and transferrin level 38% in 2011 and yesterday's fasting iron level is 206 with transferrin saturaion on 54%. This is well above the normal range for iron 3-150 and transferrin normal is below 40. I'm scared to death as to what damagin effct this iron overload can have on my body! How can I reduce my iron and transferrin saturation % without causing ferritin levels to go down? I don't take iron supplements every day.When I do it is not that much 27 mg of Ferrochel Iron Chelate or 10-20 mg liquid iron. Please, help me!

Thu, January 19, 2012 @ 2:46 PM

78. Dana wrote:
I did my second Phlebotomy at a local blood bank. They check my Hemoglobin with a finger prick first to make sure I'm not to anemic to blood let.... They said my Hemo was a 12 the first time, and after two weeks jumped to 16. Is this also an indicator that my iron had gone up in 2 weeks, and should I really sweat this?

Sun, January 22, 2012 @ 2:48 AM

79. Leslie wrote:
I was told yesterday that My B12, vitamin D and Iron levels are Low. My Iron TIBC was 279, UIBC 98 LOW, Iron serum 181 HIGH, Iron saturation 65 HIGH. Ferritin level was 68. My doctor suggested I eat low iron foods. I am trying to understand what all of this means. I have been quite tired for some time, do not sleep well and have started having frequent headaches. Any suggestions?

Tue, January 24, 2012 @ 2:49 PM

80. S Gibson wrote:
I was diagnosed with IOD 2 weeks ago, as part of a routine ‘Wellmans’ check up.
My ferritin level were >2000 and not recordable.
I have started Blood letting, twice weekly. 500ml per session. I have given 1.5ltrs to date. I feel terrible, and now worry about how it is going to affect me going forward? How long will it take to get my levels back to normal? I don’t understand how my Body can continue while letting so much Blood. I have zero energy, my concentration is poor and I become very dizzy.

Is this all normal ?

Wed, February 8, 2012 @ 8:57 AM

81. Christina wrote:
I have found great solice reading everyones blogs here. It has really helped me tonight.I have had hepc for many years and recently started experiencing many of the symptoms outlined in the blogs from iron overload. My ferritin is below 500 , saturation 85%. I have always done everything using nutraceutical products and have spent the last few days researching what to do naturally to help with this. I am going to drastically change what I eat and go raw for a month as well as add some live nutrition using products that have research behind them . I am going to have my labs done again on March 6th and I will let you know if I see change in just a week of doing this. I started the raw diet yesterday. I have read reports of numerous people that have helped their bodies heal themselves from all kinds of problems.
I noticed that many writing in the Blog complained of stiff veins and I do know what can help. If you have interest in following my results or have questions feel free to email me. I never realized this disease existed and I am grateful to find informative information. The Blog has been most helpful and I thank you all for posting. verythankful@gmail.com

Fri, March 2, 2012 @ 5:45 AM

82. Melissa wrote:
I was diagnosed with hemochromatosis two years ago (finally explains my issues at 17) and as it turns out, I married a man with the same. Both of our children are positive and our son does phlebotomies with me roughly three times a year. Feel very blessed that my children have a handle on it at 21 and 20, as knowledge is power. I'm a breast cancer survivor as well and have begun researching the correlations between HH, cancer, and autism.

My question ~ what is an acceptable amount or percentage of iron in a breakfast shake or protein bar? My ferritin level is 35, but my saturation and iron levels are above normal. I've been on a diet (Ideal Protein) and I'm wondering if the shakes (6%) and the bars (7%) are a contributing factor. And/or, I've switched from red wine to vodka, if I have a drink. Is it the alcohol? All my numbers were great, but something has changed this last go around. What is it? I'd appreciate any feedback. Thanks!

Mon, March 5, 2012 @ 9:41 AM

83. Barbara wrote:
I am a 61 year old female. I have been diagnosed with CLL...12 years ago. It was necessary to treat over the last two years. Unfortunately, with the chemo treatments it became necessary to have blood transfusions. Over the last 2 years I have had approximately 25-30 transfusions. Now my ferritin level is 3265!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The only thing I've been offered to bring the iron overload down is Exjade. Does anyone know of anything else that can be done that isn't yet another drug? If not, has anyone had sucess with Exjade without the terrible side effects it carries?

I am very anxious about this ... my leukemia (CLL) is still there but knocked down and we are again "watching and waiting" for more treatment to be necessary, so I am desperate to get the iron overload down...I have read that inflamation in the body can also make the iron levels rise.

Thanks for any advice.

Sat, March 17, 2012 @ 10:07 AM

84. carla makinen wrote:
hi i am 46 female and very tired. my ferritin is 660 which was found when i complained of upper right quad pain, elevated alt, ast, amylase of three times the normal levels, malabsorbtion problems, grand mother died of liver cancer. this is all new to me. i am conccerned that my liver is more damaged than first thought. i feel like a baby when i see how elevated some of the blood levels can climb to but i am so wiped out with a majority of all of the symptoms that i cant imagine how difficult this must be for everyone. will i ever get my strength back? i guess my potassium is dropping, my vitamin D level is 12, do u feel like crud too?

Sat, March 17, 2012 @ 8:52 PM

85. Tom Dumas wrote:
My liver was loaded with iron . Could L-Arginine supplement damage my liver? My iron levels are now down after a year of Phlebotomy. I am concerned with a decline of seminal fluid during intercourse and believe that the cause is iron damage to my pitutary gland. The supplement L-Arginine is supposed to restore the amino acid.

Tue, March 20, 2012 @ 4:22 PM

86. fiona wrote:
Hi I have been tested for Hemochromotosis and told i have it. My iron level has been high for some time now but the thing that i can not understand is that my Ferritin level is fine. How can this be. Can anyone explaine please.? Thanks

Sat, March 24, 2012 @ 3:47 AM

87. Bonnie wrote:
I had low ferritin (10 in December, and then down to 9 on Feb. 1) (I've had "low" iron most of my life - not sure how low), so my doctor put me iron supplements. In December, my thyroid (3.16) was fine and my cholestrol was normal. On March 24, my ferritin was 35 (normal - due to the iron supplements), my bad cholestrol wassuddenly up, and my iron was high (31). My thyroid was suddenly up to 4.64, indicating hypothyroidism. Everything else tested seemed to be in the normal ranges.
Did the iron supplements cause the sudden high cholestrol (suprised me) and the sudden hypothyroidism? My doctor said there is no connection, but the Internet seems to say there may be.
My doctor prescribed something for my hypothyroidism. Should I take it, or stop taking iron supplements and hope my ferritin goes down, helping with the hypothyroidism? My doctor said I should just take the iron every other day, but I have had ringing in my ears for 10 days, extreme fatigue, out of breathe, hearting pounding, headaches, etc. I think maybe I should stop the iron supplements altogether.
I am confused. Can anybody help me? It would be very much appreciated.

Sun, March 25, 2012 @ 8:10 PM

88. Maddi wrote:
On Wednesday I was just diagnosed with iron overload/hemochromatosis. I am 19 years old and currently a freshman in college. I have never heard of this disease until now and now it is all that I think about. I read that it isn't common for women to get it til their 50's. That really scares me. I have realized not many people understand what is going on and don't find it as serious as I do. Should I be as worried as I am? Also, I was wondering if someone could please give me any advice that you have. I am feeling pretty lost with the whole thing and its extremely overwhelming. Thank you!

Sun, April 1, 2012 @ 12:45 AM

89. Pats wrote:
Hi, I recently did a health screening test in work and the results came back last Thursday advising me to visit my doctor regarding high iron and transferin levels.
(My levels were - iron was 37.4 umol/L, transferrin 2.06 g/l and transferrin satuation 81%.)
My doctor suspects Haemochromotosis and I had further blood tests today. I am a 48 year old female and in general good health, over the past year I have been feeling very fatigued and aches in my neck, shoulders, mid back, hips and hands but I put it down to the long hours and streeful nature of my job. I am not very knowledgeable about test results and my question is that I cannot understand the units used in my test results as they don't seem the same as the levels or units some of the previous posts mention. Just wondering if there has been a mistake?

Mon, April 2, 2012 @ 5:02 PM

90. gill wrote:
my partner is a 48 year old male who last October 2011 was diaganosed with
Diabetes. Since then he has lost 6 stone in weight within 3 months. He looks like a walking skeleton. His blood sugars
were extremely high and his doctor had his blood tested because of this and his rapid weight loss.
His results came back with an extreme iron overload and his doctor is confident that
this could be Haemochromotosis and has referred him to see a specialist for which he
are still waiting for an appointment.
From reading this blog site it has been very helpful, he does seem to have lots of the
systems Haemochromotosis for example extreme fatigue/tiredness.
I would like help and advice in what foods and drink could help gain weight and help his fatigue until he his appointment with the specialist.
thanks gill

Tue, April 10, 2012 @ 6:55 AM

91. Paul wrote:
I have the single mutations C282Y so I guess this means I am unlikely to have Haemochromotosis, my symptoms are fatigue and lethargy, afternoons I often fall asleep. I have a ‘high’ iron level (not sure which or how high) which is why I was referred to Hepatology so it must be a concern.

Hepatology gave me the gene test above. I have had a fibro scan on my liver, scan stiffness 8.2? and KPA 2.9? Not sure what that exactly means?

I have had had an ultra sound which has shown cysts on my liver (I believe about 1cm) is this bad?

No biopsy.

I am 50, over weight - BMI about 30ish I have lost a stone in the last three months, but seem to be finding it harder now to lose anything.

The hospital I think will say I have a fatty liver, to shift weight and they will monitor.

Any advice or questions I should ask would be great, do I need a biopsy? Should something be done about my iron? What do the readings mean?

Thanks for any help, feeling very ‘low’ at the moment!


Thu, April 12, 2012 @ 4:40 AM

92. Paul wrote:
Perhaps I should add I am male, the fibro scan 8.2 stiffness and interquartile range 2.9 KPA?

born in England with an Irish Grandmother who died at 72 of heart failure.

Thanks again for any response,


Thu, April 12, 2012 @ 8:50 AM

93. faith wrote:
My very healthy (except cholestral) active 59 year old husband has just found out he has hemochromatosis (c282Y). He had no symptoms. Found by accident during blood tests he gets for being on Lipitor. Liver biopsy shows no fibrosis but severe iron deposits. TIBC 180 ug/dl iron saturation 91% serum 164 ug/dl. His Hemotologist has started him on phlebotomy once a month. Everything we read tells us he should be having it done much more often. Any advice?

Thu, April 12, 2012 @ 9:24 AM

94. Paul wrote:
Re Paul above, Just got my ferritin levels = 527 and Saturation 57.8%
Thanks for any help/views/questions I should ask,

Fri, April 13, 2012 @ 5:42 AM

95. Sheryl wrote:
I just had blood work done and my iron levels are off the chart. This has me very worred and upset. I need to find a drug or herb or food that will lower my iron as quickly as possible. My chlorestal level is also high and I now have medication for that. I think that they may be linked but I'm not sure.

Can someone suggest how I can effectly lower my iron level quickly?

Thank you,

Sat, April 14, 2012 @ 2:00 PM

96. Sheryl wrote:
Also I had a histerectomy 19 years ago so there is no monthly cycle. I am turning 50 yrs old this year. I was reading that calcium can impair the absorbtion of iron and I have to be more diligent on taking my calcium for my osterioporosis.

Are there any other suggestions?

Maybe have the newest blogs on the top of the page, it would be helpful in finding answers for the newer questions.

Thank you,

Sat, April 14, 2012 @ 2:58 PM

97. Chris wrote:
In regards to alternatives to blood removal, there are a few drugs out there. They are approved for thalassemia, those with heamochromotosis have to pay full price. I take tablets called ferriprox (Or Kelfer is the generic) kelfer is around 150USD 50 and ferriprox 500USD for 100 tablets from international pharmacies online.
I find 10-15 tablets a month taken over a day or two can knock down my serum iron from 35 -20. Possibly using it with small venesections if needed 50-100mls month., to reduce cost in using more pills. My serium iron has stayed around 30 with this routine. The serium iron starts to creep up so next month knock it down again.
There is another drug called Xjade. Its is also approved for thalassemia and the generic is slightly more expensive than Kelfer. The brand names are way to expensive.
There are side effects so best to do own research.There s also another drug called desferal, but this drug requires it injected under the skin for periods of hours.

I am 45 tears old diagnosed when i was 25. with ferrium level of 1500 and serium iron 42. I did the usual 1 pint removals, but found i was still unwell unless i keep my level low. at 30 for ferritin and 15-20 for serum iron. This does not make alot of sence to doctors but they accept im not well at normal levels. After being overloaded for 5 years undiagnosed, perhaps i have now a sensitivity to iron as well.

I started feeling unwell after 1 pint removals, sweating, rosacea, muscle aches etc. I have overactive thyroid so that could be interfering, so i try to use pills and only blood removal (smaller amounts) if im not happy with the final result

Everyone need to tailor what works best for them and always monitor your iron studies and FBC., LFTS. If you experience other symptoms its a good idea to get everything checked.Sometimes doctors put everything you have in the one basket and dont do further investigations.

Best Wishs to all

Mon, April 23, 2012 @ 9:47 AM

98. Kathy wrote:
I am a 52-years young female who has been going through tests for nearly a year to figure out abdominal pain. All the gi tests have come back normal, until last week when a new gi doc ordered some additional blood tests that show I have low TIBC 245) and UIBC (127) and high serum ferritin (425). GI doc has ordered blood test for Hemochromotosis. I have a few questions -- if those test results are negative, should I still see a hematologist about the iron readings? Is the blood test definitive for hemochromotosis? Any other kind of test I should be having done to figure this out? Thanks!

Mon, April 30, 2012 @ 12:14 PM

99. Nicole wrote:
Kathy, high ferritin (>300) usually means HH, unless you have some other far more obvious health issue, like cancer or rheumatoid arthritis (inflammation), which makes ferritin read high.

Don't feel bad that you have HH -- Be happy they found it, and that they found it early ( 500, I would not advise "self-medicating" every 8 weeks. I was >800, so needed an Rx for phlebotomy every two weeks, to take it down faster. It took me 14 donations to reduce ferritin 700 points, donating every 2 weeks.

Of course, stop taking iron supplements. And don't take Vitamin C, because it increases iron absorption. Take extra Calcium, because it blocks iron absorption. Cut down on red meat, alcohol, and sugar. If you smoke, stop, because tobacco is high in iron. (Isn't that interesting?)

HH will be with you for the rest of your life, so even when your ferritin returns to normal, continue giving blood, just less frequently, and keep checking your ferritin every year.

Continue to work with your doctor, of course, with whatever lab tests he recommends. Giving blood won't hurt, so you can get started right away without waiting for a diagnosis. If you want to know for sure whether you have HH, ask for the genetic test. Excess iron can be deposited in liver, pancreas, brain, heart, joints, skin -- any organ. Your doctor may order an abdominal ultrasound to see liver, pancreas, spleen, etc. If the pain is due to iron deposits in organs, it is important to do phlebotomies (give blood) to get rid of the excess iron to prevent more damage. Good luck to you!

Mon, April 30, 2012 @ 8:31 PM

100. Nicole wrote:
Paul and Sheryl, and anyone else with high ferritin: Go donate blood. Now, while you're waiting for your doctor to diagnose. It does not hurt to give blood. Without a prescription, you can give blood every 8 weeks. Do it. Iron is a heavy metal. High ferritin means your body has already stored excessive iron -- in your organs, which causes damage. Best way to get rid of iron is by giving blood. Also modify your diet to reduce iron absorption. (See my comment to Kathy above.)

BTW, HH blood is not "bad". It is approved by the FDA for transfusion. So, it's a total win-win: the blood banks need our blood, and we need to get rid of it. They say one pint of blood can save three lives. I say it can save four: including yours.

Mon, April 30, 2012 @ 8:48 PM

101. Sue wrote:
May 1, 2012 - Has anyone tried a liver/gallbladder flush? I just found out my serum iron is 245, indicating hemochromatosis, while it was normal (72) last year. I have not yet had the other tests run for total iron binding capacity, transferrin saturation or serum ferritin but will do so. I just completed my first liver/GB flush (passed 23 gallstones & a parasite!) & will do a 2nd in June to include a parasite cleanse. I'm 46 yrs old, have been a vegetarian for 25 years, a vegan for 10 years, and a raw foodist the past 5 years, but I was previously a 'junk food' vegetarian for many years and was on birth control pills for 23 years. My thyroid TSH was 4.3 both last year and this year, so hypothyroid / low thyroid function. My calcium was low last year but was normal this year. My copper was totally depleted a few years ago - need to retest minerals. I will let you all know if the liver cleansing makes any difference in my numbers. I don't feel any symptoms at all - I feel great - have run 6 marathons, fight in martial arts, dance, lift weights - so I will wait to retest after my next liver cleanse before I just start giving blood - cause I would prefer to get to the root of the problem - why am I not metabolizing iron properly - let me clean out my system to see if that will help. Of course it's good to know there is a 'fix' if the detoxes don't help.

Tue, May 1, 2012 @ 9:55 PM

102. Val wrote:
Hi, my name is Val. I am 61, I live in Ireland. I was told I have Hemochromotosis 4months ago. After reading many of these comments I realize I know nothing about the disease. I am white African; parents Dutch/English. This disease has been called the Plight of the Irish. I noticed a number of people in the above blogg have Irish in some part of the family. I wonder if this is a European base disease?
I was told by the doctor I need not worry about the bloods at the moment, and should come back in a year for more tests as I am boarder line at the moment, However 2years back I was in Hospital for Diverticulitis and had a scan which showed I had a "fatty liver". Can anyone tell me; Was this the start of my problems? Will this end in Liver cancer? Should I be having blood letting at the moment. I don't even have as much information on the subject as the above comments. But after reading the above I realize I have many of the symptoms, the one that alerted me to the fact that there might be something wrong was the hair lose. I had thin hair but now have bald patches and very fine hair almost like a baby! Pains in the groin, and wrists which I notice more as I pick up the grandchildren. I feel very ignorant of this disease.

Tue, May 29, 2012 @ 4:25 AM

103. Nicole wrote:
Val, it seems to me that doctors ignore this problem. As if, until you have cancer, they don't see a reason to treat it. Makes no sense to me. If you have high ferritin, your body has excess iron stored. Iron is a heavy metal and excess iron is poisonous. Yes, it can end in liver cancer. Why not remove blood to remove the iron? It'll only make you feel better. If giving blood is legal in Ireland, go ahead and do it. In the U.S., they have blood drives all the time. You don't need a prescription to give blood. We accept these pains and other symptoms as "getting older", but for us with HH, it's more. It can cause premature death, from liver cancer or other types of cancer, and plenty of pain and discomfort before death. Fibromyalgia, that "everything hurts" disease -- the root cause for some people is HH. Why in the world do doctors think that HH with high ferritin does not need to be treated? "Oh, you have liver disease, but it's not cancer yet, so don't worry about it." What the heck?? Go ahead and give blood to get your ferritin into normal range. It won't hurt. It will only help -- both you and the recipients who need the blood transfusion.

Wed, June 6, 2012 @ 11:35 AM

104. lynn martin wrote:
Could anyone tell me if Phlebotomy therapy helps with Hyperferrinenmia cataract syndrome.
I think Beth said no. If so what can I do for this weakness and muscle pain?
Thanks, Lynn

Mon, June 11, 2012 @ 5:08 PM

105. Paula Gardner wrote:
I just had my physical a couple of weeks ago and found out this afternoon my blood work cam back abnormal for my Iron. The nurse asked me if I've been taking Iron and I told her no. So I'm assuming I have to much Iron. I asked her if I was anemic and she said no. About 7 years ago I had a miscarriage and lost a lot of blood. I had to have 4 blood transfusions. I had a quick a responsive recovery. I can no longer give blood so How will I get my numbers lower? The nurse said it was 180. I'm not to sure what that means. I just know now I have to wait to talk to my actual doctor. I'm 33 years old and about 50 pounds over weight. Could that have something to do with it? I'm confused.

Tue, June 12, 2012 @ 8:28 PM

106. Nicole wrote:
Paula, good idea to to talk with your doctor and not ignore it. She will probably order more tests. The chart on http://labtestsonline.org/understanding/analytes/serum-iron/tab/test helped me. If your transferrin saturation % is high, then your body absorbs too much iron, and probably always will, so yeah, blood donation would be in your future. If you do end up needing phlebotomy, you may still be able to do so for free, even if they can't use your blood. In my area -- it may be an FDA rule, not sure -- if a blood donation center accepts HH blood, then they also have to do *therapeutic* donations for free. "Allogeneic" donation means it can be used for transfusion. "Therapeutic" donation means it cannot. But you can't just walk in and ask to make a therapeutic donation. You have to have a prescription and get registered in their HH program. You can contact them to find out more. It took me a couple months to get registered. You can also ask them about deferral reasons. You may be surprised; they may be able to keep your blood. Regardless, if you need phlebotomy, be assured that your doctor will know a way to accomplish it. Good luck to you!

Tue, June 12, 2012 @ 8:55 PM

107. Daniel Lister wrote:
I am a 42 yr old White Male. I was diagnosed in December of last year and started on what my Doctor called "aggressive phlebotomies". I've had joint pain most of my adult life which I considered par for the course, since I'm 6'6" tall. I've been through the Depression mis-diagnoses, the fatty liver thing, I'm grateful to finally know what is going on. Is there anything that dose work for the joint pain and the fatigue? If you've had any luck with these things and wouldn't mind sharing your results please e-mail me at listerdl@yahoo.com Thank You

Fri, June 29, 2012 @ 6:29 PM

108. Sue Rushford wrote:
Ok, I just got my follow-up blood tests back for my Iron Panel, and I am thrilled to report that - all numbers are NORMAL!!!!!!! YES!!!!!!! Unless there were lab errors on the initial test, I healed hemochromatosis without blood-letting or therapeutic phlebotomies - even before making an appointment to see any doctor (tho I already pre-paid 1 consultation for later this week, so that will be for my digestive issues)!!!!!! And my plantar fasciitis is totally gone as a bonus!!!!! My iron serum tested at 248 (reference interval is 35 - 155) back on March 31st - just last week (June 29th) down to 106!!!!! And all other Iron Panel numbers are within normal range. Here are the protocol items I used:

Liver/Gallbladder Cleanse/Flush (2-week protocol created by Cynthia Dodick - produced 23 gall/liver stones)
- Coffee enemas
- Caster oil packs
- Malic Acid, Epsom Salts, Grapefruit Juice & Olive Oil
- Various Premier Research Labs products that support & stimulate the Liver and Gallbladder
- - Gallbladder Nano liquid, Liver Nano liquid, BiliVen (Gallbladder Complex) capsules, Reishi Mushrooms, Turmeric
Earthing/Grounding (touching feet/body to the earth or tree every day if possible)
A week R&R in Sedona, Arizona (no exercise at all besides hiking)
Aura Reading & Healing (at a psychic healing shop)
Salt Water Jaccuzi at the gym (warm water)
Mineral Salt Water Baths at home (with essential oils)
Swimming (only did this once, but my clairvoyant insisted that my animal spirit guide was telling her animal spirit guide that I need to swim)
Nidra (sleep) Yoga (1 meditation workshop)
Dahn Yoga - 10 classes focusing on:
- Vibration Exercises (punching your gut, vibrating, jumping around, shaking)
- Meridian Tapping (along the acupuncture meridians)
- Breath-work (belly breathing)
- Meditation (relaxation & focus)
Chakra Balancing with the 5 Tibetan Rites daily (a series of yoga-type exercises to activate all your chakras)
Far Infrared Sauna for 5-15 minutes 2-3 times a week (I now have a Momentum portable far infrared sauna at home)
Chelating with PectaSol Modified Citrus Pectin (just don't like the magnesium stearate!)
Green juices with celery & cucumber base
Remineralizing with food-based and ionic minerals
The Ultimate Zapper (ok, so I haven't tried this yet cause the instructions are 9 pages long, but this is for parasites anyway)

Mon, July 2, 2012 @ 2:22 PM

109. Steve Rimart wrote:
Hello everyone,

This is my first post having just been told my iron levels are higher than normal. I'm in my late 40's, 6'7" 230lbs with the following blood panel results that were out of the normal range;

1st test by primary doctor


2nd test by GI (one month later)

AST 42 H
ALT 73 H

Clearly those are out of the norm, but how far out compared with some of you here?

I have voluntarily donated blood after the 2nd test was done, so I have no idea how much that may have helped. I am more than happy to donate more, and from what little research I've done, I expect the doctor to put me on a regular donation schedule.
Needless to say I'd like to get rid of the excess iron as quickly as is safely possible, so is there a chart for aggressive blood donation that is safe?
I do not see it on this website, but I imagine there is a chart/recommendation somewhere that I can take to my GI doctor to let him review.

Wed, July 4, 2012 @ 12:18 PM

110. Pam wrote:
If you have not already explored this web-site, I encourage you to do so ASAP. There are multiple helpful forms and charts available that you can take to your doctor. You need to be scheduled for regular phlebotomy treatment to get de-ironed as soon as possible that is safe for your particular situation, at a minimum. Once per month "blood donation" may NOT be sufficient. Your tests are in the danger zone. Best wishes.

Sun, July 8, 2012 @ 7:20 AM

111. Heidi wrote:
I first heard about hemochromatosis from another blog today. It made me get concerned about my bloodwork. Here are my iron labs:
TIBC 235 range 250-450
UIBC 88 range 150-375
Iron, serum 147 range 35-155
Iron Saturation 63% range 15-55%
Ferritin, Serum 92 range 13-150

I don't have all my bloodwork with me right now, but I'm pretty sure I had a high value for a test that relates to my kidneys (or maybe liver). I do already have Hashimotos Thyroiditis that was diagnosed in 2005 (but I had it for at least 5 years prior). The only thing that is throwing me off about diagnosing myself is the fact that my ferritin is still normal. Should I be concerned enough about these results to get the HFE gene test? I guess it wasn't such a bad thing to donate blood regularly when I was a teen. Thanks for all of your help.

Wed, July 11, 2012 @ 4:41 PM

112. Terry wrote:
My brother was diagnosed a few years ago. I hadn't been tested all these years but have all the symptoms and have been misdiagnosed with other conditions, or not dignosed at all for other symptoms.

I was recently tested for ferritin and transferrin, and doctor said within normal range. What next? I am having so many issues, still in much pain and my overall health is now not good, conditions in several other organs. I just feel it is the hemachromatosis like my brother.

Thu, July 12, 2012 @ 4:33 PM

113. Pam wrote:
To Terry: Get a copy of your results and compare the numbers with those provided in the "helpful forms and charts" section provided on this web-site. Because it was diagnosed in a sibling, there is a good chance of you having it too and the "normal range" in the general (unaffected population) can exceed the "normal" for those who have the disorder. If your numbers exceed the numbers provided in the iron disorders chart, you probably have it too. Take the charts with you to the doctor and ask for a referral to a hematologist. All labs have their own "normal's" which may differ from those for people with HH. Think of things like this: just like the rest of us, doctors are human, too and because of the sheer number of medical maladies that exist, it is virtually impossible for all doctors to know all. That's probably why there are so many medical specialties these days. Add to that, that because HH is NOT treated with drugs, there is little support and backing into educating the doctors about it. That's why it's important for everyone to take charge of our own health and then sometimes we have teach the doctor's a thing or two. You can also go to pubmed and search for HH and whatever other medical issues you are having. The abstracts may provide you with additional ammo to take to your doctor. Good luck!

Fri, July 13, 2012 @ 8:21 AM

114. Terry wrote:
Thank you Pam. I had a recent colonscopy and the Gastro Dr. has since ordered a genetic test and a TIBC test. This is in addition to the ferritin and transferrin I mentioned before. I hope this will provide what is needed for a diagnosis. If it does not I don't know where to go from here. My brother was diagnosed thru a biopsy. I dont' see that as a feasible next step unless there are some signs that point to a diagnosis.

Sat, July 14, 2012 @ 10:37 PM

115. Terry wrote:
Ferritin 58
Transferrin 305

Awaiting TIBC test and gene test results. As mentioned my brother was diagnosed. The ferritin is actually on the low side and tansferrin not very high compared to others.

So many of the symptoms, and the issues with the other organs. If this is not HH then I don't know what it is!

Mon, July 16, 2012 @ 10:00 PM

116. Pam wrote:
Terry, it sounds like your doctor is not up to speed on the disorder and is running tests sporadically as opposed to a complete iron panel at one time. The gene tests will certainly be helpful, but the genes alone don't tell you if you are loading iron and when you are having these tests done, they should be taken in a fasting state and all at one time. The Transferrin Saturation % is a mathematical calculation that includes a serum iron which you do not list above. Please refer to the "helpful forms and charts". Early disease is typically found with a Transferrin Saturation % greater than 35 as opposed to a high ferritin and your ferritin looks good so far as you've listed it. It's possible that it's too early to tell, as well. When you go back to get your results, take the charts with you and go over them together.

Tue, July 17, 2012 @ 1:50 PM

117. Terry wrote:
A list of my symptoms and results over the last 7-10 years - still with no findings.

Pain started in hands and feet - felt like they were broken - saw Rheum, said no RA
I now have joint pain everywhere, feel like 100 and only 47. Hard to get up out of a chair and need to stand a minute to get going. Hips,knees and shoulders the worst, and a great deal of back pain, Not sleeping well due to the pain. Wrist pain and elbows too.

Been in the ER at least 4 times with chest pain, pressure, elevated pulse, squeezing. Cardiologist said all is well. I told the OBGYN and Cardiologist the pains and issues were synced with my period. Pain with heart would start a week prior to my period and would go away when my cycle started and I began to bleed. They never gave it any credence and told me it didn't sound connected. Echo and EKG always came back normal for me.

More recently in the last 3-4 years I 've had kidney stones, UTI, enlarged and fatty liver, a tumor on my adrenal gland and now chronic diarrhea with pain in the abdomen for over a year.

Two years ago I had a total hysterectomy and also have a small umbilical hernia.

I have abdomen pain and chronic diarrhea and recently had an episode of not being able to catch my breath, felt like I couldn't breath, closest to a panic attach if I ever had one.

One month ago felt pain where the pancreas is, painful to the touch. Also lwer pain in right abdomen lower area.

Few weeks ago bowel movement was green and then went for blood work and had a colonscopy. Waiting for biopsy results but Dr. said all looked go. No celiac, and she thinks no crohn's. SED ratehigh at 31 and CRP high 6x higher than normal range. Viamin d low, leukocytes moderate, cloudy urine

As mentioned in earlier posts, brother is confirmed hemachromatosis and I am awaiting furher genetic tests and TIBC.

Tue, July 17, 2012 @ 8:03 PM

118. Pam wrote:
You mention a tumor of your adrenal gland. That could be a significant factor in your symptoms and hope you are being monitored closely for that. And again, in regards to the HH--the complete iron panel needs to be done all at one time, with the patient in a fasting state. Early HH will show up in a Transferrin Saturation % greater than 35% before it will show up in an elevated Ferritin. The high sed rate and CRP indicate acute infection and/or inflammation somewhere in your body from what I can tell. Did they do a blood or urine culture???? Sounds like that may be in order. There are specific antibiotics for specific types of bacteria from what I understand. If you have been having diahrrhea all this time, I am thinking dehydration with infection. Doctors should be checking for all of this. I am not a medical professional but just have a lot of self-taught knowledge. A good internist should be able to interpret all of this. Keep pushing for answers. Best of luck.

Wed, July 18, 2012 @ 5:41 AM

119. Terry wrote:
Yes, blood an urine culture were completed. There isn't anything done for tumor on the adrenal gland, every few years they take a CT scan to see if any growth. Not one of the doctors putting this all together. Hopeful this gastroenterologist who is doing the genetic test and who is a liver specialist does. The first tests for ferritin and transferrin were doen by my primary and at my request, and their reluctance. The results so far did not indicate HH and I think they were a bit smug when the results came back. they dont seem to want to do anything. The gastro who performed the colonoscopy has ordered the additonal tests which is why they were not all performed at one time, but within a week of each other, and all during fasting. None of these tests so far have a % to them so not sure whhy not. I have to keep on because I feel lousy most days. However these symptoms have been on going for years and I am not sure they will ever find out what I have. I failed to mention to that in my 20's I was daignosed with epstein barr, and really should have those levels tested again too.

Wed, July 18, 2012 @ 7:17 AM

120. Pam wrote:
The % is a MANUAL Calculation. Look at the charts. If you had all these tests done at one time (serum iron, serum ferrittin, total iron binding capacity in a fasting state) the transferrin saturation % is calculated from those results. I don't see how a diagnosis can be ruled in or out without the complete panel being completed at one time. You have the choice of going back to that primary doctor with charts in hand and giving them one more chance or find a new one. Or, the GI doctor can order. Epstein Barr is not really a huge deal, as according to the CDC about 99% of the overall general population has it. The GI doctor is only concentrated on the GI issues. The adrenal problem is something that should probably be followed by an endocrinologist and they should be monitoring those particular hormone levels besides any tumor growth. If hormones are out of wack that can cause alot of problems from what I understand. Just because your brother has it, does not necessarily mean YOU do, but the chances are good. All depends upon the genes and like many, people don't know what they were for prior generations. Here's a link I found about the adrenals:
I know it's frustrating---so many others have had similar experiences. In my loved one's case, we actually printed out information about the CDC's (then FREE) CE credit course for learning about the disorder. Kinda put him in his place. Sometimes the dr's have to be shown a thing or two.

Fri, July 20, 2012 @ 9:10 AM

121. Terry wrote:
Ok, so test resutls came back via a voice mail fromt he doctor, saying I do not have HH, iron is onthe low side and I have only one marker for HH, and you need two to be diagnosed. So where do I go from here? I will await the written report so i can see the results of the tests in print. Still have all the same symptoms, no help in sight - again.

Tue, July 24, 2012 @ 3:19 PM

122. Steve wrote:

I had to encourage my MD to be aggressive with the bloodletting, and am now doing it once a week. However I am willing to go twice a week as that seems to be more appropriate for my dangerous levels. Assuming proper health and all other things being equal, wouldn't that be appropriate?Have you or others on this site seen much higher figures than mine?

I also read where I can go as low as 33% hemacrit or hemoglobin above 10 to put me in a state of mild anemia to get rid of the iron more quickly. Is that correct?

A final question is what do you all do as far as taking the blood from the same arm, vs rotating them? I've taken all three from the same arm, but am wondering if that will cause a problem in the long run.


Tue, July 24, 2012 @ 4:09 PM

123. Pam wrote:
To Terry: If this were me, and I'd been through the ringer already with multiple dr's and medical problems like you state you have gone through this is what I would do at this point: If I had the resources, I would order a full iron panel through HealthCheck USA, or, do the other one here the FEGGT. It sounds like your tests have been done piecemeal and therefore insufficient for an accurate diagnosis of an iron disorder. The genetic tests more than likely only looked for the two major genes: C282Y/H63D, but there is another, less well known gene S56? (I think), plus there are many more that have yet to be discovered. Then YOU get those results and YOU compare to the reference charts on this web-site. I don't recall if these labs actually calculate the TS% or not, but with all the tests done at one time, you would be able to do your own calculation and then you can determine it. Then, if anything seems out of range I might consider a consult with a hematologist. I would also find an endocrinologist NOW with good experience under their belt and have all your hormone levels checked...adrenal, thyroid, pituitary, etc. Remember I AM NOT A MEDICAL PROFESSIONAL..

Wed, July 25, 2012 @ 9:57 AM

124. Pam wrote:
For Steve: I think what you are looking for can be found at the Iron Library-Resources link on this web-site. Look for the Physician Reference Charts in the center column and then click on Phlebotomy Detail. Print this out and take it to your doctor and ask him if he thinks you can tolerate two per week vs. one and if so, ask him to change the orders accordingly. He should be checking a ferritin every so often (at least monthly) during the initial de-ironing phase, monitoring so that you do NOT become anemic. Be sure to hydrate well before your treatments and you may want to ask your doctor if he thinks adding a baby asprin or two may help to keep the blood flowing (assuming you are NOT on blood thinner to begin with). Excess iron can thicken the blood and make treatments difficult. In regard to switching arms and such. I think that is a personal decision between you and the nurse who is getting to know your veins. In my loved one's case, there is only one vein that is easily accessible so that is the one that's been used for years. Scar tissue is building, but it still works so we go with it. With the test results you previously posted, it would seem that you have liver involvement (like my loved one). If you drink alcohol---stop. If you smoke--stop. Both of these habits encourage iron storage. You need an evaluation of your liver (ultrasound) and need monitoring with that and Alpha Feto Protein tumor marker (blood test) semi-annually to watch for liver cancer. Please do explore this web-site more. I am sure you will find everything you need here. Also, I am passing along a good tip someone else recommended: It seems it's a good idea to wear a med-alert ID--with all the needle marks you end up getting, well, you know what EMS personnel would immediately think, unless you had the med-alert ID showing your medical condition that marks you up. You may also wish to consider the genetic tests, and the impact this could have on your blood relatives. Best wishes.

Wed, July 25, 2012 @ 10:34 AM

125. Mary Lou wrote:
Hello Everyone,

I ran across a problem this morning when going in for my blood test.
They told me they haven't been able to obtain the equipment for the
phlebotomy as they were previously purchased in Japan and the plant
that produced them was wiped out do to the Tsaunami. Have any of
you gotten this message from your Hemotologist?
Thanks for your replies,
Mary L.

Tue, July 31, 2012 @ 11:28 AM

126. Ed wrote:
They must be using a machine that takes stuff from your blood and puts the rest back into you. My phlebotomies are done with a big needle on a plastic bag, no machine.

Wed, August 1, 2012 @ 6:22 PM

127. Jamie wrote:
I hope someone can help.
About two weeks ago I woke up with stomach cramps/pains. After a few days I went and saw the doctor and they did all the usual bloods/ stool samples. Over the next week I became increasingly fatigued and am starting to get sore muscles. I have started to get a sore chest (feels like heart burn on both sides) and two nights ago spent the night in hospital. They did a few ECGs and said everything was in order ( I am a 29 yo male PE Teacher), however they told me my iron levels were high Ferritin 456 and Saturation 83.
I have never felt like this before but am increasingly anxious, have no energy and am worried about the pain in my chest ( I have been told it is reflux). The doctors have referred me to a gastroncologist and they mentioned they think it may be haemochromatosis. I am terrified it is something like Chrones disease.
Any ideas?

Sat, August 4, 2012 @ 10:37 PM

128. Pam wrote:
Jamie: Please explore this web site more. Your Ferritin and Sat % would suggest HH. There are many helpful forms and charts here and you can print these off here and take them with you the the GI doctor to be sure this doesn't get overlooked. It would seem that you may need to begin treatment for HH soon---but it may be early which would be a GOOD thing. Some people are more sensitive than others and may explain how you are feeling. If it is HH, it is easily treatable and that's a good thing too.
Try to take one day at a time and learn to advocate for yourself.

Tue, August 7, 2012 @ 5:46 AM

129. Sheila wrote:
Same reply for Jamie: he is young and must find someone who knows about HH. I am going to Doctors in boston and am not happy. I m going to accupunctuer,and reflexology and have an appt. to see a holistic nutritionist. I was just diagnosed and my feritin is out of control. My hemotologist wants me to see a lliver Dr and I know he will want to do a liver biopsy. NOT going to happen, I already had an MRI of the organs and they are fine. Dr.s do not know alot about this conditon. Use your head and go with your gut.
Jamie, if you have HH, go get the phlebotomy and you will be fine, you are young and as a PE teacher must be in good shape. I will help as much as I can, Where do you live?


Mon, August 13, 2012 @ 8:53 PM

130. Jamie wrote:
Pam and Sheila, Thank you for your time in responding. I am from New Zealand and am currently home from my job in the Middle East where I teach. I needed to use this forum as there was little I could find regarding this condition in NZ. Last week I had a colonoscopy and all the results were fine, no evidence of Chrones disease (thankfully). I am now waiting on the results of my genetic test for HH. My symptoms have not changed over the last few weeks, i am extremely fatigued and my iron saturation is now at 93% so I am really hoping for a positive result in order to start the phlebotomy process in order to r to my normal, active self !
Thanks again

Tue, August 14, 2012 @ 12:34 AM

131. Pam wrote:
To Jaimie: While you are waiting for your results had you though about trying to donate blood? Don't know how they look at foreign travel. But it won't hurt to try. Your sat% is really high. If you are truly overloaded, your fatigue would be explained. I'd ask for a referral to a hematologist pronto so that by the time you get your other tests back, you will have your appt. Keep on pushing for answers. You are welcome and best of luck.

Tue, August 14, 2012 @ 7:30 AM

132. Jamie wrote:
Thanks for all the help. I have just received my genetic test results and they were positive for the HFE (C282Y) mutation homozygous. Now onto the phlebotomy process to get this under control!

Thu, August 23, 2012 @ 9:32 PM

133. Pam wrote:
Jaimie, you are welcome! The diagnosis is bittersweet, but it would seem it is EARLY, and that is FANTASTIC! Hope your treatments go well and you should be de-ironed readily.

Fri, August 24, 2012 @ 8:11 AM

134. Amy wrote:
Hi My name is Amy and My husband 53, was diagnosed with heredity hemochromatosis..For almost a year he has been having a variety of medical problems/symptoms and no clear diagnosis..he had been having vertigo like symptoms for over a year, elevated sugar levels (pre-diabetic), high blood sugar, and most recently elevated liver profiles. He family doc referred him to a gastroenterologist who did more tests and discovered HH as well as Here was the HH report:


INTERPRETATION: DNA testing indicates that this
individual is positive for one copy each of the C282Y
and H63D mutations in HFE gene. Approximately 3%-8%
of individuals with a biochemical diagnosis of
hereditary hemochromatosis (HH) have this genotype.
Therefore, this result is consistent with a diagnosis
of HH for an individual with clinical evidence of HH.
However, this genotype does not predict a diagnosis of
HH in an asymptomatic individual, as only 0.5%-2% of
individuals with this genotype will develop symptoms
or clinical evidence of this disorder.

FERRITIN 555.6 30 - 400 ng/mL H
WBC 5.31 4.00 - 10.80 K/uL
RBC 4.80 4.50 - 5.25 M/uL
HGB 15.7 14.0 - 16.5 g/dL
HCT 42.3 40.0 - 47.0 %
MCV 88.1 82.0 - 99.5 fL
MCH 32.7 27.0 - 34.0 pg
MCHC 37.1 32.0 - 36.0 g/dL H
RDW 12.9 11.5 - 15.5 %
PLATELET COUNT 178 140 - 400 K/uL
MPV 11.3 6.6 - 11.1 fL H
IRON 121 45 - 176 ug/dL
IRON BINDING CAP 273 228 - 428 ug/dL
TRANSFERRIN SAT % 44 15 - 55 %
Component Your Value Standard Range Units Flag (First Test)
ALBUMIN 4.0 3.8 - 5.0 g/dL
AST 42 10 - 50 U/L
ALT 76 10 - 50 U/L H
BILIRUBIN, TOTAL 1.1 0.3 - 1.3 mg/dL
BILIRUBIN, DIRECT 0.2 0.0 - 0.3 mg/dL
PROTEIN 6.8 6.0 - 8.3 g/dL\

Component Your Value Standard Range Units Flag (2nd test)
BUN 14 6 - 20 mg/dL
CREATININE 0.8 0.6 - 1.3 mg/dL
GFR should be used to assess renal function. Plasma/Serum creatinine may not
be able to properly reflect renal function in some cases.
GFR ESTIMATED >60.0 >60 mL/min
SODIUM 138 135 - 146 mmol/L
POTASSIUM 4.1 3.5 - 5.1 mmol/L
CHLORIDE 99 98 - 111 mmol/L
CO2 28 22 - 32 mmol/L
ANION GAP 11 7 - 15 mmol/L
GLUCOSE 143 70 - 120 mg/dL H
ALBUMIN 4.2 3.8 - 5.0 g/dL
AST 51 10 - 50 U/L H
BILIRUBIN, TOTAL 1.2 0.3 - 1.3 mg/dL
CALCIUM 9.5 8.3 - 10.5 mg/dL
PROTEIN 7.4 6.0 - 8.3 g/dL
ALT 84 10 - 50 U/L H

Component Your Value Standard Range Units Flag
SERUM PROTEIN 6.7 6.0 - 8.3 g/dL
ALBUMIN 3.32 3.3 - 4.4 g/dL
ALPHA 1 0.20 0.1 - 0.3 g/dL
ALPHA 2 0.84 0.6 - 1.0 g/dL
BETA 1.15 0.8 - 1.3 g/dL
GAMMA 1.20 0.7 - 1.7 g/dL
M SPIKE IgM KAPPA=0.14 g/dL IgG KAPPA=0.65 g/dL


His test were referred to a hematologist because of the paraprotein ..This health care system did not recommend followup with a hemotologist but to have a liver biopsy..

We decided to go to Penn State's Hematology Dept where the doctor did NOT want to do a liver biopsy but set up more tests for a special MRI to measure the liver, an echocardiogram and referral to a cardiologist..

This all happened last week and we were faced with decisions doctors the diagnosis...I just want to stop take it all in and make the best decisions..These are some of the questions I had:

1..From what I gather from online reading the type of HH he has is not quite as serious as double same mutation

2. What type of physician should be directing the diagnosis / treatment? Hematologist, Gastroenterologist, Hepatologist

3. I have listed the main results of his tests..what are the main tests and values that one should be watching for with HH..His ferritin is in the 500s which is high but I have seen 1000 as when swift action should be taken..will he have to start phlebotomy

4. I just purchased the HH cookbook and know drastic changes will need to be made in diet..it has been difficult for my husband to exercise this past year because of his constant balance issues.he is 5ft 7.5 inch and 210...

5. Has anyone with HH had vertigo/balance issues? (He has been through every test for menieres, brain tumor etc)

6. What about the liver biopsy? I have read more and more not to use this as a tool..I am however worried about liver cancer.

thank you for any help advice you can offer..I am a mess over this and now we probably need to test our daughters and we have talked to his sisters..My husband has a lot of Irish ancestry. I have some Irish background/northern europe but have never been tested.

thank you..Amy

Sat, September 8, 2012 @ 5:01 PM

135. Pam wrote:
Wow, that is a lot of information, Amy! I will address what I can (I am NOT a medical professional). Generally speaking, it is unusual for compound hetero's to load iron, but not out of the question. Usually from what I have gathered, there is ANOTHER reason (besides the C282y/H63D) that causes iron loading. Based on your husbands levels that you reported for TS% and SF levels, it would seem he is somewhat overloaded on iron and that it may have been caught early. It would seem that phlebotomy treatment should begin NOW. Waiting until SF is over 1000 is asking for trouble which undereducated physicians sometimes do. Refer to the helpful forms and charts available on this web-site. It is recommended that patients keep track of their own numbers to help guide undereducated dr's, but most hematologists are up on it. Liver biopsies are no longer considered required for HH diagnosis, but for liver status alone and generally not until SF has reached 1000 level or more. Certain medications and other medical conditions like hyperlipidemia (elevated cholesterol/triglycerides) can cause elevations in the ALT and AST, as can alcohol consumption. There is good information concerning NASH (non-alchoholic steato hepatitis) here: www.aasld.org. They also offer a great guideline on HH with liver involvement. Hematologists/Oncologists are generally a good start for phlebotomy treatment and considering the finding of Paraprotein, it would seem that Hematology is right place to start. In regard to the liver tests and as you will find in the AASLD HH guide, your husband may be best followed for this with a Gastroenterologist. it is generally recommended that liver imaging studies be done every six months (usually Ultrasound is preferred over CT due to excessive radiation) for regular monitoring along with a blood test for AFP (Alpha-feto protein) which is considered an early liver cancer marker. It may also be helpful to have a blood Ammonia level checked in regard to the liver and the vertigo issues. Some HH patients are more sensitive than others and it's not out of the question that the elevated iron could be playing a role, but I do not know anything about the paraprotein and whether or not that could also be playing a role. Since my loved one has blood work completed regularly by hematology to guide his HH maintenance therapy, we try to get lab orders from the other doctors, to piggyback to avoid having to get extra blood draws. Breathe deep and take one step at a time and be thankful that the SF is under 1000 and best of luck with your journey. Learn everything you can to help your loved ones and to help ease your minds. Since your husb. has one copy of each of the known gene's your children will be at least carriers of one of them and getting YOURSELF tested first will help determine your children's risk's. There is a lot of support out here in cyberspace and it helps to know you are not alone. Hope this info helps!

Sun, September 9, 2012 @ 7:57 AM

136. Amy wrote:
thank you thank you thank Pam for your wonderful information...it is so overwhelming and scary and nice to know that we are not alone..sorry for the info overload as I am not sure what is the information that is important ..again thank you for taking the time to respond.

Sun, September 9, 2012 @ 8:47 AM

137. Anna wrote:
Hi I'm at 22 year old woman, I was told about 4 months ago that i have hemachromatosis . I had my ferritin levels checked about 3 months ago and my sister who is a nurse told me that it was normal. I'm just wondering can you guys help me with a few questions i have- how often should i get my ferritin levels checked ? Also i was told i would not have any problems until i was pregnant or hit menopause? Is this true ? And should I stop eating foods that contain high levels of iron now? Thanks

Tue, September 11, 2012 @ 5:03 AM

138. Nelly H. wrote:
Hi i have a question. Is it possible for blood levels to be at 4.3? This is what i was told about my blood levels a few weeks before i had my daughter. Mind you I’m 20

Tue, September 11, 2012 @ 2:04 PM

139. Pam wrote:
To Amy and all, glad to help where I can. It can seem very overwhelming at first but it gets better along the way the more we learn. Anna, take a look at the helpful forms and charts on this web-site, get a copy of your lab results and compare your numbers to those on the chart. There is a section on here for "Iron out of balance in women" and I strongly encourage you to read that. Ferritin levels for a person with HH can APPEAR ok assuming you don't have HH. It all depends. It is one thing to have the gene's for HH and it is another to actually load iron because of it. Just because you have the gene's doesn't always mean you WILL load iron, just that your chances of it are greater. If you explore all the info available on this web-site, you will see that in early iron loading, it will typically show up in an elevated Transferrin Saturation % as opposed to an increased Ferritin. I am personally not real familiar how it all works in women as I am in men, except for the fact that in women it usually isn't being picked up on until after menopause, when periods stop. You are VERY LUCKY to know so early so you can be monitored. I would recommend being followed by a hematologist to help determine the best schedule for monitoring that works for you. For example, a hematologist may want to check you say every three months for the first year and based on that maybe more or less frequently based on your particular numbers. Since there are so many things that can play a role in iron loading, there isn't a standard that applies to everyone. There are great resources available here. Be sure to check them all out.

Tue, September 11, 2012 @ 4:17 PM

140. Anna wrote:
Pam thanks so much for the comment. i'll defo do that ..

Wed, September 12, 2012 @ 4:36 AM

141. Pam wrote:
Anna, you are welcome. Hope you find what you need. To Nelly, I do not understand what you mean by "blood levels". Blood is made up of several different components. Perhaps you had a particular component of 4.3 but without knowing which component you are referring to, I don't think anyone could answer your question. Perhaps if you read all there is that is offered on this web-site, you may answer your own question. Good luck.

Wed, September 12, 2012 @ 6:53 AM

142. Ralph wrote:
My Ferritin level was a whopping 2700 when I was first diagnosed with 2 copies of c282y mutation. A pint of blood taken every week for about 6 months, then every 2 weeks for 6 months, now once a month, At the last count my level dropped down to 86. Thankfully, no symptoms. An alert V.A. doctor noticed the iron level on a routine blood test, had me retested, then sent me to the specialist for a third test that discover the mutation. Praise God for good doctors!!!

Wed, September 12, 2012 @ 10:05 PM

143. Pam wrote:
Ralph, you say "no symptoms". We would expect there to be some liver involvement with that level of Ferritn. Suggest you get a copy of your labs (if you don't already) and look for: AST, ALT, GGTP that relate to your liver. You need to be VERY CAUTIOUS of medications that impact your liver. Good Luck and, Thank You for your service!

Thu, September 13, 2012 @ 9:34 AM

144. Meg wrote:
I have been diagnosed with Superficial Siderosis (SS) a neurological degenerative disease. To much iron - it is very rare and only just coming to light - but one of the symptoms is unsteadyness of gait. Most Drs. haven't even heard of it, but my Neurologist picked it up. Good luck and thanks for this website.

Thu, September 13, 2012 @ 6:31 PM

145. Pam wrote:
Meg, that condition is something new to me. I am curious if they actually ran an iron panel and/or the genetic testing for HH and whether this could actually be one of the disorders associated with HH? Maybe the medical community hasn't associated it? Thank you for sharing that information. I will second the THANKS FOR THE WEB-SITE! It surely is an excellent resource!

Fri, September 14, 2012 @ 7:27 AM

146. Joanne wrote:
My question is to Pam and I understand your not in the medical field; but you are very knowledgeable . I recently had blood test done the results are below. My doctor ordered a repeat of the same blood test to see if it is the same as this one or more normal. My doctor (she) said that if the 2nd blood test comes back pretty much the same as the first. (waiting on the result)
My doctor is suggesting that I go for a liver biopsy no treatment options were offered about the high ferritin. Have you or anyone here had to have a liver biopsy before your treatment options? I have not read about it in any of these blogs.

Ferritin 1217
Iron, Total 96 (which is within range)
Iron binding capacity 265 (within range)
% Saturation 36 (within range)
AST 38 (normal range between 10-35 U/L
ALT 40 (normal range between 6-40 U/L
The interpretation indicates I tested positive for one copy each of C282Y and H63D = Hereditary Hemochromatosis

Thu, September 20, 2012 @ 5:45 PM

147. Pam wrote:
Hi, Joanne and welcome to the blog! While a ferritin in excess of 1000 and an elevated AST can be indicative of liver dz., a liver biopsy IS NOT REQUIRED to diagnose HH, but rather to assess the status of the liver. If it were me, I would get an appointment with a hematologist ASAP and take a copy of all of your lab results considering that you are Compound Hetero. (one copy of each) and your ferritin is elevated (over the danger mark). Ferritin, being an acute phase reactant can be indicative of inflammation. The experts haven't quite yet determined why Compound Hetero's overload, they don't think it's because of the Compound Hetero gene combo, but for some other unknown reason, but it does happen from time to time. A liver bx at this time, with an AST only 3 pts above the norm. range and a norm. ALT, I don't know that I would proceed with a liver bx., as it is quite invasive and there are risks. But that is something best left up to you, the patient. I would think that a hematologist may recommend phlebotomy treatment NOW and I bet that you will see a positive change in the AST/ALT. However, the AST/ALT blood tests can appear normal even if the liver is diseased and you are de-ironed. Monitoring of liver dz. with a Gastroenterologist (best) would include: AFP blood test (alpha feto protein, an early liver cancer marker), and liver ultrasound (non-invasive), every six months (ref. hemochromatosis practice guideline at www.asld.org.) I would consider following the dietary guidelines as offered on this web-site in regard to limiting consumption of red meats (high in heme iron), limiting (avoiding all together is best) alcohol consumption, Vit-C intake and hepatotoxic medications (tylenol and other meds and even some herbal supplements and vitamins with iron (avoid) and smoking, The other information on this web-site is very helpful. Best of luck!

Fri, September 21, 2012 @ 4:47 AM

148. Joanne wrote:
Thanks Pam, I did forget to mention in my first post that 2 yrs ago was diagnoised of having a fatty liver (detected by ultrasound ordered by Gastro doctor).
Yes, the doctor who suggested liver biopsy is a Gastroenterologist she didn't suggest another ultrasound nor did she address any treatment for the iron overload at this time. I rarely drink, quit smoking May 2011. As far as diet I'm not very good at which I should be, I crave carbs. My glucose this month is all over the map daily average to date is 149 :( currently waiting on the blood test results of my A1C done earlier this week)
Again, thank you so much Pam for your input. I'll call today to get an appointment with a hematologist before having a liver biopsy, I need a 2nd opinion on that, when I do I'll be back with an update.

Fri, September 21, 2012 @ 8:56 AM

149. Pam wrote:
You are most welcome. A fatty liver can indeed show up in an elevated AST. Stored iron can damage the pancreas as well, hence DMII which may be indicated in your glucose tests, all possibly due to iron overload. However, there are many other things that could cause these, too and I think that's part of the reason why many dr.'s don't think to check iron panels. From what I have learned, once you get de-ironed (SF maintained below 50 for those with HH), watch your diet et al., semi-annual ultrasounds and AFP blood tests, would be prudent protocol and you may/may not notice some reversal of the high glucose and AST. Everyone is SO different. During phlebotomy treatment, most physicians from what I understand, will monitor your SF periodically along with a CBC to help determine your hemoglobin and tolerance to present phlebotomy treatment. This will help dictate a maintenance phlebotomy schedule customized to you. Keep track of YOUR numbers and compare to the "helpful forms and charts" on this web-site. If you want to r/o cirrhosis (again, YOUR NUMBERS are not too bad as reported above), I understand biopsy (risky) is the only way, but it wouldn't change the recommendations on diet/lifestyle et al and monitoring. Try to see that hematologist ASAP! Good luck!

Fri, September 21, 2012 @ 10:35 AM

150. John G. wrote:
It's been great reading this blog, so much useful insight. I (31 year old male) was recently diagnosed with HH after convincing my doctor that my fatigue and joint pain could be due to HH which I knew my grandfather had. Genetic tests came back positive and total iron at 187 and TS% at 70. I'm awaiting the ferritin levels, the Gastro doc I was referred to ordered more tests including ferritin. Gastro doc says I will definitely start phlebotomy treatment once he has the ferritin level to determine the frequency. My immediate concern has been increased chest pain directly in the heart area. It seems like heartburn but more consistent. I am scheduled for an upper endoscopy this week along with a colonoscopy (family history). I just wanted to put my info out there to see if others have had similar tests/symptoms. Again, thanks to everyone that has put their info on this blog and responded to help others.

Mon, September 24, 2012 @ 2:39 PM

151. Mike Gendreau wrote:
My name is Mike Gendreau, age 59, living in Port Charlotte, Fl. For the last 16 years, originally from Massachusetts. About 2 years ago, because my liver counts were high, my doctor decided to order a Ferretin test, and found that I had a count of 1100, with a Saturation of 35%. He sent me to a hematologist, and we redid the test, along with testing for hemochromatosis. The test came back with the same 1100, and I did have the c282y, but negative on the other gene. I deal with Psoriasis on a regular basis, taking 40 mg of Humira weekly, and also have a hypothyroid condition that I have been taking medicine for 30 years. Recently, I have noticed a rash on my upper body that was different from the psoriasis that I had been experiencing, and read somewhere that the high iron could cause skin irritation and itchiness. This led me to start questioning the iron situation and consult the doctor. Had blood work last week and iron is still at 997. I know that it has been this way for at least 2 years, and has probably been that way for who knows how long. My Doctor and Dermatologist and Hemotologist had conferred 2 years ago after the testing and concluded that because the saturation level was only at 35%, and the elevated iron was probably a result of inflammation from psoriatic arthritis, they decided to not do anything at the time.

After my Doctors visit last week, I questioned my doctor as to why we wouldn’t start phlebotomy, and see what happens…he agreed and I’m going back to the hematologist Wednesday to see what he thinks.

I would certainly be interested on what your thoughts would be on this matter.

Mon, September 24, 2012 @ 4:17 PM

152. Pam wrote:
To John and Mike: In order to calculate that TS% there was a ferriitn level. Based on the HH Diagnostic Algorithm (ref. helpful forms and charts on this web-site) and that early iron loading first shows up in the TS% before it does in the ferritin, a COMPLETE IRON PANEL SHOULD BE REPEATED based on the HH Diagnositic Algorithm (NOT JUST THE FERRITIN) in order to obtain a most accurate state of your iron status and to make an official HH diagnosis. Just because one may have the genes, does not always mean that they WILL load iron, just that they MAY. If repeat COMPLETE PANEL reflects TS% in excess of 45% or SF in excess of 300 (men), phlebotomy treatment is warranted. Because there are many factors (many unknowns) that contribute to iron loading and because everyone is so different, frequency of treatment is not the same for everyone. Some people load iron quicker than others. The bottom line is that liver damage is suspected if SF is in excess of 1000 and with numbers near, at or above this level is indicative of AGGRESSIVE treatment with the ultimate goal of reducing SF and keeping those levels within the range for HH patients which is different than for non-HH patients.
For Mike, you didn't mention if you had one or two copies of that gene and if just one, it may be that you are just a carrier. It is a known fact that high SF can indeed just reflect inflammation somewhere in the body and because too much iron, regardless of the cause can induce "oxidative stress" to the body, it would make sense to de-iron with phlebotomy. You may also want to ask for some liver tests, (blood tests to include GGT, AST, ALT and an AFP) and maybe an ultrasound. If you are having any liver involvement, this will affect the types of medications you can take for any other medical conditions. Try searching Pubmed for your skin condition and iron. Best of luck!

Tue, September 25, 2012 @ 9:55 AM

153. Steve wrote:
70year old male of Asian and northern european descent. Stroke one year ago. Ferritin levels at +800 while hemoglobin is low. Have alpha zero thalassemia from mothers side. Developed joint pains six months ago and wonder if anyone else has these symptoms. Don't know if I have c282y. Help

Sat, October 13, 2012 @ 10:55 AM

154. Alfredo wrote:
I've been taking multivitamin pills with 18 mg of iron content for about 8 days and I've noticed trouble going to the bathroom. I'm concern about this and I wonder If I stop now taking these pills then my body habits would return to normal again? Should I take a blood iron content test? Thanks.

Sun, October 14, 2012 @ 9:54 PM

155. Pam wrote:
Steve, most of us using this blog ARE NOT medical professionals (including myself). Seeing as the basic lab tests for both HH and Thalasemia are the same (increases in SI, SF, TS) (according to the helpful forms and charts available on this web-site), that would be too hard to say. Most people that overload on iron due to HH have 2 copies of the C282y. If you are concerned, you may wish to print off the "helpful forms and charts" that reflect the similarities between the two disorders. Not familiar with the treatment for Thal., but considering your hb is low (anemic?), perhaps your doctor may want to consider an iron chelator. It is my understanding that iron in excess of the norms for HH patients regardless of the reason, and in consideration of joint pain, would warrant reduction in iron load. A high ferritin can also be indicative of some sort of inflammation in the body. A doctor educated in both disorders would probably be your best bet on this one.
Alfredo, why don't you stop the supplements and see, unless you were medically advised to take the vitamins, in which case you may want to consult your dr. Generally speaking multi-vitamins containing iron are not usually recommended for men. If you are concerned that your body may be storing too much iron, it couldn't hurt to get a screening but that might not have anything to do with your present problem. Good luck!

Mon, October 15, 2012 @ 4:14 PM

156. Mike wrote:
I was diagnosed with a level of 4500. This was about a year and a half ago. I tried to do the phelbotomys but they made me too weak to work. Plus the levels were barely dropping. After 8 phelbotomys my level only dropped to 3900. I have severe cramping in my hands, arms and legs. Is anyone else this high? The doctor told me I have about 4 years left to live. Is he right in this?

Mon, October 15, 2012 @ 8:13 PM

157. Joanne wrote:
Hey PAM, just to give you an update. Well I had the liver biopsy last week. Got the results from the doctor today, she again suggested to donate blood, said the liver showed fine except being fatty liver. I asked her when I go to donate blood do I need a doctor note............she said no. Well, I did a search on the internet for blood banks in Fort Worth, Tx. I called a blood bank and decided to let the lady know that I was diagnosed with HH. She said well you need a note from the doctor as to how much blood to donate, and the frequency. She then told me that it would cost me $75 a visit to donate blood. However, she did suggest that I enroll in the HH Program and they provide you with some type of card, then there is no charge to donate the blood. Gastro doctor that told me I didn't need the Rx to donate blood. I don't feel comfortable with some of the things she's told me. I don't think the Gastro doctor knows what the he** she's talkin about. Well needless to say I didn't tell her yet that I have an appointment with a hemotologist next Thursday, I'll be taking the blood test results that was already done and a copy of the biopsy report with me. I again thank you for your suggestions....your more knowledgeable than my Gastro Doctor :( Will give you another update after next week.
I'm a little confused about what you can eat and what not to eat......I've read no grain breads in one article, no eggs, then in another article it said yes you can eat those things. I'm sure the doc I see next week with help clairify.

Wed, October 17, 2012 @ 1:55 AM

158. Pam wrote:
Mike, from what I understand anything over the thresholds for HH patients is dangerous. You stopped Phleb. due to the (unfortunate side effect) of tiredness (pretty normal reaction) and therefore not tolerated well, so maybe you should attempt to find another doctor, preferably one who is better educated about it, like a hematologist. If I were you I'd go give a blood donation IMMEDIATELY at your local blood bank. If you don't address this NOW, you are definately cutting your life short. That excess iron is destroying your organs. There is a procedure called "Red Cell Apherisis" that may be better suited for you, in light of your pretty high numbers and your tolerance for regular phleb.. It's described in the DVD offered on this web-site that features a physican and his family. It's basically a blood donation, but they use a machine that filters the blood and returns the other components back to you. Don't know much about it though other than that. I'm thinking that you maybe since it returns the other blood components back to you, maybe you won't be so fatigued? If I were you, I'd get RIGHT BACK ON IT. DON'T IGNORE THIS.

Wed, October 17, 2012 @ 1:48 PM

159. Pam wrote:
Hi, Joanne, glad to hear you got your biopsy back and not too serious and that you got the appt. with the Hematologist soon. From what I understand alot of blood banks won't even accept/won't use blood from a "known" HH patient at all, so I can see why they would want a prescription. The thing with donation is that they only permit you to "donate" every eight or so weeks ,I believe. So, since I don't recall your specifics, once every eight weeks may not be frequent enough, but once you see the Hematologist, he will write your prescription, or at least re-test depending on how high your numbers were.. It seems that Hematologists know much more about it than Gastro's do, hence why I recommended that. They will probably do at least one (if over 1000) or maybe two phlebs a week (depending on how high your numbers are) until you get down to the "de-ironed" level. If alot less, may need less aggressive frequency. It can take a year or more for some people (again everyone is different and also depends on their numbers). Dr. will probably be checking repeat labs after a month or so to help better guide your treatment amount and frequency of phleb's. In re diet, I would recommend the diet guides also on this web-site. Glad to be of some help. Good luck!

Wed, October 17, 2012 @ 2:07 PM

160. Wendy wrote:
I'm so glad I found this blog! I developed full blown hypo-adrenia and hypothyroidism about 4-1/2 years ago (after menopause). No matter what Rx meds I used, the conditions have slowly deteriorated. In these past 4 years, my weight shot up and now I have signs of Type 2 diabetes also. I've been too exhausted to exercise regularly.

My blood tests show what appears to be early stage iron overload:
TIBC 252 (range 250-450)
iron 103 (range 35-155)
transferrin saturation 41%
ferritin 104 (normal post menopausal ferritin is range 25-75)
UIBC 149 (range 150-375)

And over the past 5 years my hemoglobin and hematocrit have been increasing steadily.
hemoglobin 15.4 (range 11.5-15.0)
hematocrit 46.5 (range 34-44)
Fatigue, brain fog, poor sleep, and ever-worsening hypothyroidism that resists medication baffle me. I think I may have HH and it is causing these adrenal and thyroid issues.

My grandfather died at age 58 of lots of health issues that the doctors were unable to fix. He had that bronze diabetes problem. His brother died at age 35---having been ill since his teens/20's. This makes me think there is HH in my genetic background.

Should I get a genetic test? Would it be advisable to start giving blood before more iron builds up---I want to avoid organ damage.
Thank you for any advice or input.

Mon, October 22, 2012 @ 5:05 AM

161. Pam wrote:
Getting genetically tested is a very personal decision. Based on your results and the fam. history, and personal history it is certainly possible. If you have children or living siblings, grandparents, parents, aunts uncles, cousins, I would take that into account in making your decision on the genetic tests. If you think the genetic tests would give you peace of mind, then you may want to consider that. Your present levels do not seem extremely high (but are somewhat elevated) and hopefully you do see an endocrinologist for the other issues. Since you do not have the HH diagnosis at this time, it wouldn't hurt to go give a blood donation, but you can only do that every 8 weeks or so. It might not hurt to consult with a hematologist also. Be sure to keep an eye on those iron levels.

Mon, October 22, 2012 @ 11:16 AM

162. AmyC wrote:
Just found out about my iron overload recently. Ferretin leve lwas 813 when first discovered. Had genetic test done for hemachromatosis and thankfully it came back negative, but the ferretin level had climbed to 1,000 in the week or so in between testing...just had TIBC done on friday and am waiting for results which will probably be delayed by Hurricane Sandy.

I am a 53 year old post-menapausal white woman...had been anemic for many years after a bout with mononeucleosis (?) as a teenager...weird that I now have iron overload. I am scared and confused and my gastro doctor was "not very concerned" about my levels...after I get these recent test results, I think I might be seeking other medical advice.

Any input on what to expect would be helpful, feeling very "out there" - only comfort is that I can now attribute alot of my symptoms to something real - achy joints - terrible fatigue - general malaise.

Looking forward to responses....thanks in advance.

Sun, October 28, 2012 @ 8:00 PM

163. Pam wrote:
Ferritin in and of itself is also considered an "acute phase reactant". It would seem that you may have something inflammatory going on, in light of neg. on the dna for HH. I invite you to explore everything on this web-site to include the helpful forms and charts, which will show that there are OTHER kinds of iron disorders with similar results. These charts can be printed off and presented to your physician. If your phys. shows little interest, then maybe they're not the right one for you; get a new one. To get an ACCURATE picture of your iron status, the serum iron, serum ferritin and a TIBC should be done all at once. From these numbers a TS% can be calculated. Compare all YOUR numbers to those on the charts. Since HH has been ruled out, then you may need to explore the other possibilities. Many people have found Hematologists to be better educated on iron disorders as opposed to GI's. There is also a section on this web site labeled "For Medical Professionals" and although many of us are NOT MP's, they are available to us to read., Read the section concerning "Anemia of Chronic Disease" to learn more about that. Most people in the general population assume that Anemia means "low iron" which is NOT necessarily true. Learn everything you can about the other disorders of iron metabolism and from there and with the help of a caring physician, you will be able to determine what is what via process of elimination. Good luck on your journey and never give up!

Mon, October 29, 2012 @ 9:23 AM

164. Kim wrote:
wow - I am praying for each and every one of you. And thank you Pam for sharing your knowledge. If it wasn't for test results I would be a hypochondriac. (I'm female 53 and oh so close to being post menopausal)
I've been in remission for graves disease for 5 years. Last year my platelets got really high, Then my ferritin dropped to 37 (it had bee 12 years before that and no one was concerned) Oncologist did iron infusion, and 3 months later,last August, they did another - I found out after the fact that my ferritin was 87 before the infusion.
Now I'm hypothyroid and ferritin at 250. I feel like crap, I always do, and have for years. I figured all my aches and pains and soreness was just me whining, and this last year am now feeling crippled when I get out of bed or even a chair. My numbers don't even come close to anyone on this board but on top of this, I have sleep apnea, narcolepsy and bi-polar 2. The oncologist starting talking bone marrow biopsy on our first visit !!! And has another infusion scheduled (another NO from me) the only thing that has changed is I started Well Butrin, do you know if that would cause high ferritin / hypo ?

Thu, November 1, 2012 @ 8:12 PM

165. Pam wrote:
No, I do not think the Wellbutrin could cause the ferritin to rise. Ferritin can rise due to iron infusions and/or some other inflammation in the body also. Unless you have the actual HH diagnosis, I'm thinking your rise in Ferritin may be representative of something else. Could your hypothyroid condition possibly be related to the Graves disease coming out of remission? I have heard that some medications used to treat bi-polar can affect blood cells (not Wellbutrin specifically, but there are others). As I recommend to everyone, if you are concerned about an iron loading disorder, read everything available on this web-site. Before I'd do a bone marrow biopsy (very invasive and risky), I'd look up the FDA prescribing information on all the med's you take to see if there is a link with platelet disorders and if you are concerned about HH, consider requesting a complete iron panel and if still elevated and no more transfusions then maybe genetic testing. HH is just one of many iron disorders. My prayers are with you. Good luck on your journey. Try to take one day at a time and keep positive.

Fri, November 2, 2012 @ 4:43 AM

166. Anne Marie wrote:
I am female - in my early 60's. I live in Canada. My elevated iron was discovered quite by accident - my blood pressure had become quite low and I was feeling very fatigued. My doctor thought that I might have low iron and ran an iron test. Surprise, it was in the mid 500 range. So I had more tests and they showed elevated liver enzymes and a CT scan showed a Fatty liver. A few months later my iron had dropped (without any treatment) to the lower 300 range. I pushed for genetic testing and discovered I have one gene - heterozygous C282Y. Do I have HH even though I only have the one gene?
My symptoms include:
significant hair loss
Fatigue - extreme fatigue
Muscle weakness in arms and legs
Rapid heart beat upon exertion
Pai in upper right quadrant of abdomen
Greyish skin colour
Joint pain - fingers, wrists, hips, knees, ankles and sometimes toes - pain seems to wander sporadically
My gastroenterologist said that since I only have the single C282Y gene I don't have the disease. So why do I feel so horrible?
My oldest child was genetically tested and has C282Y/C282Y - so I guess both my husband and I are carriers.
I have an appointment - not for several months to see a specialist in hemochromatosis. Perhaps then I will get more answers.

Fri, November 2, 2012 @ 2:41 PM

167. Gordon wrote:
Hi, I am 60 yrs old and have a family history of HH. My father died in 1979 at 57 yrs old of liver cancer. He was never tested for HH. One of his brothers has HH and my first cousin also has HH. Both did phIebotomy and now give blood every couple of months or so and have their iron overloads under control. I recently had a physical and blood tests done and asked again (1st time 6 yrs ago) for them to test me for hemochromatosis. The first time they acted as if they weren't concerned but I found out after this last test that my Ferritin level was 600 back then. I wish I had know more as I trusted them when they told me everything was ok but my iron was a little high. I didn't and still don't have a lot of symptoms other than lots of lower back pain. I have had rotator cuff tendenitis/frozen shoulder in both shoulders. Also, I have some joint/tendon pain at the groin area but that's about it. My recent test results came back as follows.

Ferritin level = 1009 ng/mL
Iron = 161 ug/dL
Transferrin = 227 mg/dL
Tot Fe Bind Cap = 284 ug/dL
Transferrin Saturation = 57%

My had my doctor run a genetic test (now I know it was only for the most common types) for HH and it came back showing that I am heterozygous for the gene HFE C282Y allele. I have a doctors appointment set up for early next month with Gastroenterology. How concerned should I be? I really don't want to wait another month to see another doctor. I haven't been able to find much about the chance/possibility of having HH when only being heterozygous for C282Y. Can someone tell me more about that possibility? From what I've written here does it sound like I have HH?

Sat, November 3, 2012 @ 7:36 AM

168. Pam wrote:
Here is a fairly recent article discussing the C282y hetero state for the last two bloggers: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069226/?report=abstract. As I recommend to all, read everything on this web site. Since there is liver involvement and excess iron I understand the standard for monitoring the condition of the liver is having alpha-feto protein blood test and liver ultrasounds (no radiation) to watch for liver cancer, at least semi-annually along with routine iron panels to determine frequency of phlebotomy treatment. Some medications, personal habits and diet can play a role in iron loading. Regardless of the genetic tests, you both appear to be overloaded on iron, and phlebotomy treatment seems warranted regardless of the cause. Hematologists are the best bet In my opinion to oversee the phlebotomies.

Sat, November 3, 2012 @ 6:44 PM

169. Gordon wrote:
Pam, thanks for the link to the info and for your input. From what I've read here and other sites I believe as you state that phlebotomy treatment is probably what will be recomended when I have the Gastroenterology appointment. I'm trying to get in sooner that the 1 month wait but will waiting another month at this point make a difference?

Sat, November 3, 2012 @ 8:24 PM

170. Pam wrote:
You're welcome. The longer too much iron is in your body the more damage it can do. I understand everyone is different and people load at different rates. I would actually try to get in with a hematologist ASAP while waiting to see the GI and take a copy of your labs with you. The GI will assess your liver status; the hematologist will direct phleb. treatment. And in the meantime, look into the dietary guidelines to assist with ways in which you can slow the loading down yourself...like limiting red meats & Vit C supplements and drinking tea, if you smoke-stop, if you use alcohol-stop, etc. Here's another link for you from the CDC about treatment: http://www.cdc.gov/ncbddd/hemochromatosis/treatment.html, of course I rate the guidelines of the IDI an A+.

Sat, November 3, 2012 @ 9:54 PM

171. ChrisC wrote:
I was diagnosed with HH last year but had been having various symptoms for around 5 or so years. Unfortunately even though I have been having phlebotomy for a few months and levels are down I suffer some very painful and tiresome side effects and they haven't improved, so much so that I have started a blog to highlight the fact that this is both worthy of encouraging screening and the debilitating effects it has caused me. Take a look if you would ironoverloaded@blogspot.com or tweet me at http://twitter.com/ironoverload I am just trying to create awareness of this and also encourage others to get screened.

Sun, November 4, 2012 @ 7:23 AM

172. Sarah wrote:
Hi . I have a year and a half old nephew who has been diagnosed with severe iron deficiency . very recent report that i got his ferritin level dropped to 1 . He is taking iron supplements . there is no blood loss from any where . his stool test is negative too ! He is not storing iron . He has been diagnosed with alpha thalasemia , which is not a disease just a character the heamatologist says . What should be done , please help !

Mon, November 5, 2012 @ 10:37 PM

173. Gordon wrote:
Pam, I tried to get in to see a Hematologistbut but very difficult with my health care and the best I could do was Feb. I did manage to move up my appointment with the Gastroenterology and saw someone yesterday. Didn't really learn much but the doctor doesn't think I have liver disease as the enzymes that were done recently don't show that. He wants to have a conference and discuss with another specialist in their office before setting up any treatment plan. I should know early next week. I was suprised when he didn't think that the combo of my ferritin (1009) and Transferrin Saturation (57%) was siginificant enough to be relativey sure that I do have iron overload already. He said with others it is usually much higher but he couldn't really explain my situation. At least I'm moving forward rapidly to determine what's going on. Thanks, again for all your help.

Thu, November 8, 2012 @ 8:31 AM

174. Gordon wrote:

Thu, November 8, 2012 @ 9:46 AM

175. Pam wrote:
Gordon, the GI should be consulting a hematologist and someone with a special interest in liver disease (sometimes they are difficult to find, but the GI should know one). He is treading in unfamiliar territory it would seem. Everybody is different and the symptoms elusive and sometimes non-existent except in the labs. You could still be having liver damage without it being reflected in the liver blood tests. Obviously the GI is one of those UNDER EDUCATED about Iron Overload. He should make the recommendation to get you in ASAP (hematology). Your goal is to get the iron out ASAP. Excessive levels of iron (more than 150) thickens the blood which can lead to stroke. In the meantime, you don't have the diagnosis, so go donate blood at your local blood bank----they will take it as often as eight or so weeks I believe, but that isn't going to be enough for you. The blood bank won't be running a ferritin (storage iron) or an "iron panel" for that matter. They may check a serum iron and hemoglobin and hematocrit and they may comment, but it still won't tell them you have HH. The longer it stays in your body at excessive levels, the more damage is being done. Pester them if you have too. Print out the Helpful Forms and Charts regarding HH/iron overload from this web-site or give his nursing staff the links to them. Also refer them to the American Association for the Study of Liver Disease HH guideline at: http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Hemochromatosis%202011.pdf. Obviously the GI isn't aware of the thresholds. Sometimes it takes the patient to educate the doctor. They are human too and can't retain 100% of the information that's in the book. If he is an M.D., refer him to Harrison's Textbook of Internal Medicine Chapter 41 of the 18th Edition. He should be familiar with this publication. Don't ask me how I know, as I'm NOT a medical professional or even a student, but I have a loved one once in a similar predicament and researched EXTENSIVELY.

The GI you are seeking should have a special interest in liver disease aka "hepatology". This is one of the examples of UNDER DIAGNOSIS. This is YOUR LIFE and YOUR BODY. No one cares about you more than you. So keep pushing. The clock is running and it's up to YOU to point these things out to THEM. You are NOT ALONE in this....so many are still going through these issues because of lack of education. YOU are your best advocate. Push them and push them hard and NEVER GIVE UP. Hope you get a quick resolution to your predicament.

Thu, November 8, 2012 @ 11:29 AM

176. Gordon wrote:
Pam, I appreciate you responses and concern. I am too very concerned as you can tell and something must/will happen by Wednesday of next week. I will give them a few days but that's it and I'll do as you say and go on to the blood bank and give a unit of blood. The link you provided to the PDF file (http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Hemochromatosis%202011.pdf) contailns a wealth of information. I would suggest that everyone in the forum read this guideline. I have already sent two links to articles and one other PDF file to both the doctor and PA that I was with on Tuesday. I'll send this one also.

Fri, November 9, 2012 @ 11:19 AM

177. Pam wrote:
Great going, Gordon! Keep up the good work! It will pay off in the end! You are welcome. All the best!

Fri, November 9, 2012 @ 2:39 PM

178. Gordon wrote:
Pam, I read something on the Iron Out Of Balance blog that I am curious about. I think I told you that I have/had two shoulder problems over the years. In the right shoulder I currently have rotator cuff tendenitis. In my left shoulder about 10 years ago I developed a frozen shoulder from either a rotator cuff tear or tendenitis. Does iron overload make you more susceptible to that kind of problem with tendons? In the other blog someone referred to that type of issue with iron overload as a cause.

Fri, November 9, 2012 @ 3:41 PM

179. Gordon wrote:
Pam, I know I'm probably driving you nuts but I just found something else on the other blog (Iron Out Of Balance) that I'm also curious about. There is a person reporting this:

"I too had a sudden physical change from age 50 to 52, with fatigue, extreme joint pain, restlessness, crazy loose tendons so that I am continually injuring myself. Does anyone have sudden acute muscle/tendon/bone pain that can bring you to your knees if you're standing? The pain can happen anywhere in my body, crazy places like a single metatarsal, or the side of my hip, or center of humerus, just about anywhere, anytime and not related to exercise."

I have been having now for at least 6 months an extreme pain in my left shin that comes and goes. It is at times as this person describes so intense that it brings you to your knees. Several months ago it came on and would not stop and I had to go to the emergency room as I was scared that it was going to continue. It kept coming on approximately every 5 minutes lasting for more than an hour. It finaly did stop at the ER. I went to the doctor and I've had an MRI, Necular Bone Scan and an ultrasound. Everything turned up negative. It has been in hiding for some time (about 2 months) but came on again last night but not as extreme as usual. Have you ever heard of anyone else having something like this? I am so thankful that I found this blog.

Fri, November 9, 2012 @ 7:55 PM

180. Irene wrote:
Hello Everyone:

I want to share my experience on how to lower serum ferritin via herbal treatment. Hope some of you will find it helpful.

I was diagnosed with high iron loading in 2000 when I was switched to a new internist. She ordered baseline tests to find out my general state of health. It was discovered that Serum Ferritin > 1100, TS% > 32%. I had no symptoms. Recommended to donate blood in order to lower the iron level. Try that once. Felt extremely cold afterwards, It was in the middle of June! MD suggested that since I had no symptoms, I could forgo treatment for the time being.

Last December I started feeling extreme fatigue, stomach ache, joint pains and extreme sensitivity to cold. Finally saw my MD in March. She ordered several tests to figure what was going on. The results indicated that everything was normal except Ferritin > 1000. Retested 3 days later, Ferritin > 1300. Then I noticed that my skin color had turned grayish.

A friend suggested I tried herbal medicine. A Google search for "iron chelating agent" came up with the following article: http://www.healthdiaries.com/eatthis/cilantro-chelation-therapy-heavy-metal-detox.html.

I figured I had nothing to lose by trying to use cilantro as an iron chelating agent. It is something I can buy in a super market. What harm can it do?

Had cilantro soup for supper for 5 nights. Re-tested. Ferritin ~ 780. Stayed with cilantro soup for supper. Retested 2 weeks later. Ferritin ~ 520.

Stayed with cilantro soup for almost every night for 2 months. 10 weeks later, I recognized that my brain was finally working again. It felt as if I was coming out of a long dark tunnel. A week after that, my brain was back to normal. Could not even associate myself with the person who could not understand things in the previous months.

Have been staying with cilantro soup for supper for 3-4 nights a week. Last test 3 weeks ago: Ferritin ~ 450.

The lowest level on my record is 398. TS% ranges from 20% to 40%.

Plan to stay with cilantro soup for supper 3-4 night a week in order to keep the Ferritin level down. To me, cilantro soup is not food. It is my medicine.

Hope some of you will find this information helpful.

Good health to all.

Fri, November 9, 2012 @ 10:25 PM

181. Pam wrote:
Gordon, no, you're not driving me nuts. These are all good questions and it's great that you are asking questions. The more questions are asked, the more information people gain. Personally not aware of iron overload causing tendon problems, although arthritis is quite common. Also not familiar with the shin problems the other blogger wrote about. The person with the shin problems might ought to consider requesting an iron panel from her physician and to follow the guidelines of the IDI. Again, because iron overload affects different people in different ways, I would think a physician who is up on iron disorders would the best party on that. I also think the science on iron disorders is still in development. There doesn't seem to be alot of money to back the research, not to mention all the gene's they are finding. In regard to Cilantro soup? Never heard of it and don't know much about it. Can't really say I'd recommend it because it is different than the standard treatment. But seeing as Ferritin in and of itself is also considered an "acute phase reactant", perhaps the cilantro has some sort of anti-inflammatory properties to it? This would be my (unprofessional) guess. For someone who has an iron loading problem, I would still recommend the standard treatment of phlebotomy.

Sat, November 10, 2012 @ 5:39 AM

182. neil wrote:
39 yr old male .awful fatigue for about 14 years.recently had blood tests and here is some results.,tranferrin sat 93% normal range 16-50
iron 48.6 normal range 14-31
alt 50 normal range 10-45. serum ferritin 161.8 normal range 20-300
i questioned these results and my gp actually laughed and said oh they mean nothing
i would like some advice ie should i ask more questions .i would be grateful for any advice thanks neil

Mon, November 12, 2012 @ 2:24 PM

183. Pam wrote:
Here is a link to a good description of the Trans Sat.: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1466640/. From what I gather, TS % shows your propensity to load. So since serum iron is circulating and serum ferritin is what's stored it wouldn't seem that you are overloaded at the moment, but definately something you want to re-visit. I'd ask for a new lab order in about six months and compare the two to give you an idea of the rate you load and then perhaps your doctor can come up with a monitoring schedule from that, assuming they have the tools (helpful forms and charts and such). Keep track of your numbers, too. Perhaps there are other labs you had done that might shed a clue on the fatigue. Follow healthy diet recommendations for HH patients (elsewhere on this site) and restrict or eliminate any smoking, alcohol consumption, Vit C., etc. Make sure you fast for 12 hours before having a blood test and hydrate before. I don't think the labs you listed would explain your extreme fatigue (non-prof. opinion). Read all the info on this site including the Anemias. Just be sure to keep an eye on your levels. That's a shame that some doc's think they know it all or brush something off like that. . In an earlier post, I listed links to the the AASLD HH guidelines that will help describe liver issues that can come up because of iron overload. Suggest you read those too.

Mon, November 12, 2012 @ 5:04 PM

184. Gordon wrote:

Since I've been writing you and you have been gracious to answer my questions I thought I'd give you an update. The GI dr called yesterday and after discussion with a specialist in their group (it's a clinic) they had me go to the lab and give another blood sample. They want to run further tests to make sure I didn't/don't have some type of infection that caused the iron numbers to spike up. They're telling me that infection can cause the ferritin number to be much greater than normal. Also, I'm going to have an ultrasound of my liver next week as well and then we will discuss a plan of action. Last week even before I saw the GI I had scheduled an appointment with a Hematologist (you suggested) but couldn't get in to see him until Feb. Yesterday I was able to move that appointment up to Friday, November 30. Looks like things are moving forward (fairly rapidly) and we'll get to the bottom of the problem and start a treatment soon.

Fri, November 16, 2012 @ 8:23 AM

185. Pam wrote:
Good going, Gordon! That sounds like a good plan and you should have answers soon.

Fri, November 16, 2012 @ 3:25 PM

186. Mary wrote:
What an interesting blog! I wonder if there is a British one? I seem to have had an easier time than many of you, mainly because the of the way the NHS is structured and the info available to my doctors. I am a 63 year old woman who was diagnosed 3 years ago due to extreme itching. Ironically (ouch) I have often been anaemic, and my good General Practitioner (Primary Care doctor) did a battery of test in case I was again, and to rule out liver disease (which can cause itching). We stumbled onto HH and I didn't believe her, I went along for genetic testing thinking 'Whatever, I'll humour them' and was really shocked to learn I was monozygote and all my relatives should be tested. I'd never heard of HH and since my diagnosis I have been on a steep learning curve. I discovered an acquaintance had died of HH complications. I think both my grandfathers may havve been HH - both were 'thin' late onset diabetics, both had amputations (poor old souls). Regularly bleeding took my ferritin from a not-too-serious 600 to 20, and I have just succeeded in jumping some hoops to give my lovely O Rh -ve blood to the donor service and my current ferritin levels are 11.
Hard to know about symptoms - the nurse I see has heard of itching before, I itched unbelievably on my trunk. Am I less tired? Hard to tell, with all life's slings and arrows. I do notice that I can have two glasses of wine now and feel OK, whereas one would make me feel terrible before.
I don't like the phlebotomy, I have a brilliant specialist nurse but I hate the big needle but worse things happen. Luckily I have a very prominent vein which the nurse cossets, pointing out I will need it all my life, my poor brother really struggles to give blood. I have been surprised at some relatives who have refused to be tested, it is something they have never heard of and they dismiss it.

Wed, November 21, 2012 @ 11:24 AM

187. Pam wrote:
There are way too many "family" members of patients that do the very same thing---ignore it and deny it and then when they get sick they expect sympathy. Too bad for them, but that is THEIR CHOICE. YOUR CHOICE is to take care of YOU and that is the best thing for anyone to do. Maybe if they got a phone call from the doctor they might pay attention---or maybe not. Remember that they are the ones who will be sorry. Keep on taking care of you.

Wed, November 21, 2012 @ 2:12 PM

188. Barbara Ryan wrote:
I just learned that my iron level is over 1100. I am seeing a hematologist next week for the first time but I had Leukemia almost 17 yrs ago, was cured. Can it have returned? I'm at work and trippin pretty bad. The only symptom I've had is fatigue, but its been ongoing for many months. I'm really worried since I read that Leukemia can cause this.... anyone have any input?

Wed, November 28, 2012 @ 10:11 PM

189. Gordon wrote:

I saw the hematologist today. Basically it was "If it looks like a duck, walks like a duck... He's goinging to run more tests to try and determine what other gene I have besides the C282Y they already found. I'm scheduled for my first phlebotomy on Tuesday. Thanks again for all your help.

Fri, November 30, 2012 @ 10:56 PM

190. Pam wrote:
To Barbara-from what I have learned Leukemia is cancer of the blood and medical literature indicates that iron feeds cancer so it would seem reasonable to get rid of the iron and a hematologist is your best bet and hopefully it is only iron that is causing your symptoms. The hematologist would be the best person to discuss this with. When you say your iron, I asssume this means storage iron aka ferritin. It would seem you are in good hands. Try to take one day at a time....

To Gordon: Great going! Seems as if you are on track now. Happy to share my knowledge if it means a good thing! Stay focused and may you return to good health!

Sat, December 1, 2012 @ 10:10 AM

191. C.A. Bouthillier wrote:
Iron is NOT a nutrient, it is a poison. Iron replaces copper in the blood and tissue proteins and accumulates in multiple locations of the body, causing destruction and accelerating aging. Bio-available copper must be replenished to restore health and longevity – to repair the DNA damage.

I encourage you to read: http://www.themessageofhiskingdom.com/PoisoningOfMankindCopperDeficiency.htm

(Those who continue to uphold & defend the fraud are in defiance.)

C.A. Bouthillier

Tue, December 4, 2012 @ 7:39 AM

192. T. Nieblas wrote:
I just had some blood work done and my Total Iron level was 197 (normal range 45-170). Is this considered high enough to be concerned about? I have had some of the symptoms I keep reading about that are associated with High Iron levels (fatigue, joint pain, impotence). I had my testosterone levels checked over a year ago and they were found to be low and I was put on testosterone replacement therapy. This helped a great deal with my energy level and performance issues but now I am worried that it is just masking the symptoms associated with high Iron levels.

I asked my doctor about hemochromatosis and he said that it was the 'boutique' diagnosis these days and that I most likely didn't have it as I would be having these other symptoms as well. I'm starting to think this guy is a quack (recently moved. new doctor). I had high liver enzymes back in the late 1990's that was diagnosed as 'fatty liver'. That went away eventually and my current tests are normal. I also had high copper levels around the same time which have also gone back to normal.

I am a little scared and confused as I feel like I shouldn't be feeling this 'old' at the age of 46. There was nothing else in my blood work (I don't know how to tell if my ferritin or iron saturation levels were checked what codes would those have?) that was out of the normal range. Are there specific tests I should ask to have performed.

Mon, December 10, 2012 @ 11:29 AM

193. Pam wrote:
The idea is to catch it BEFORE the symptoms are severe...NOT AFTER it has done IRREVERSIBLE DAMAGE. I invite you to READ and EXPLORE everything this web-site has to offer. If you are that concerned, print off the helpful forms and charts that are available to show your doctor. If there is ANY QUESTION at all on your part, you have the right to DEMAND your dr. order the special/non-routine and inexpensive tests which will determine if your body is storing too much iron. Let him/her know that you're not playing and that you'll take your business elsewhere if they won't help you to rule this out as a cause of your symptoms. Your best defense is to learn everything about it yourself and be your own advocate. It would be MY guess that this doctor is not very educated about it---maybe YOU can be that person to show him/her the way. I can tell you that the tests already run, are NOT the correct tests to make that determination. You could also obtain the tests without a doctors order via HealthcheckUSA.com or the OTHER lab IDI has partnered with. Then go from there. There are many things that can cause iron elevations but only the specialized tests referenced on the charts will determine if you are storing it. You are not alone and you have come to a good place for support. In regard to the copper, I understand there is another disorder of copper metabolism, called Wilson's Disease. I do not know much more about it then that, but you also may wish to learn about that and ask for those tests as well. This web-site is Iron specific, you will need to look elsewhere for the copper. Good luck!

Tue, December 11, 2012 @ 4:46 AM

194. Joanne wrote:
Hey Pam, thought I'd give an update. Went to hematologist in Oct wanted me to donate blood then 2 weeks later have ferritin and CBC checked. Well it took almost a month to get the HH card to get into a HH program so I don't have to pay the have blood drawn. So I went for my 1st donation 11/27/12 had a blood test done on 12/4/12 ferritin was 928. So I put a call into the hematologist office on Monday to find out what my next steps are and so far the nurse hasn't gotten back to me yet. Will be calling again tomorrow I find that this nurse isn't very efficent. I do want to ask a few questions I've been having trouble with memory/concentration/brain fog (now affecting my job) and hair loss. Is this some side effects of HH? Does anyone else have these symptons? If so, does it get better? Thanks!

Thu, December 13, 2012 @ 1:00 AM

195. Pam wrote:
Hi, Joanne, glad to hear back from you. With initial Ferritin over 1000, I would think that weekly phleb. would be in order. until such time as your Ferritin is at or below 50 *but not too much). If you haven't already printed off the Diagnostic/Treatment Algorithyms from IDI, I would highly recommend you do and ask the Hema. to follow those guidelines. You may need an RX that states: " Therepeutic Phleb. weekly until Ferriitn at 50" and in between those times they should be checking a CBC and Ferritin to be sure you can tolerate that frequency. Then once you have reached that point, a new "maintenance" schedule will be set up for you. In regard to the brain fog and hair loss issues, yes these could be symptoms of too much iron, but they could also be due to other things like thyroid and such. Make sure you get that tested too. It may be possible that things will improve in those areas once you are de-ironed. Stay on top of it and don't let anyone blow you off. Your welcome! :)

Thu, December 13, 2012 @ 8:28 AM

196. Karen wrote:
I am a frustrated mother! My son who is 21yrs old was diagnosed 2 yrs ago with HH - receiving a gene from both my husband and I. It took 3yrs for the diagnosis and our son just isn't the same person he used to be before HH. Earlier this year my husband was after me to "let go" of monitoring my son's HH and let him take ownership of his lab draws and phlebotomies. Well - it has been 6 months now since his last phlebotomy, and I have been hounding him for 2 months to go in for his monthly lab draw to check his levels. I talked with him last night again - he said he would go in this week if I would call in and have his Adderal (for ADD) refilled. Our Internist is great, but I have a couple of issues with giving my son an anti-depressant and the medication for ADD! I also mentioned 6 months ago to our Dr about having a liver scan so we can have a benchmark for the future - he didn't see the need. He feels doing the phlebotomies is enough. I am seeing my son going in a cycle of feeling good after a phlebotomy and then begin the downward spiral of becoming more fatigued, withdrawn, sleeping more, and having no interest in life. He is making NO PLANS for the future - not going to school, or thinking about a career path. He does work a nearly full-time job at a local Pizza place and is currently living at home and is committed to his work schedule even when he is dragging. He is no trouble to have at home, but I am perplexed as to what direction to take. I am finding he is not capable of MANAGING his own medical care because he doesn't have the energy to do it. I talked with him about making an appointment at Mayo Clinic to have an overall check-up and tests to see if there is any organ damage. (My main worry!) He is willing to go, but I am second guessing myself and wondering if we should switch Doctors and go to a Hematologist instead. HELP!

Wed, December 19, 2012 @ 4:39 PM

197. Pam wrote:
I can totally relate to your dilemma-only in my case it involves about a dozen or so individual family members of my loved one,,,In a pinch, perhaps you can get him to a blood bank to donate and just not mention his prior diagnosis, then get an appointment with a hematologist. From what I understand on the med's your son takes, these are NOT something that are safe to discontinue COLD TURKEY.-but rather to be weaned from on the advice of the prescribing dr's. It's entirely possible that the iron is building and therefore the meds not working also. If worse comes to worse and you find he is NOT managing this on his own, there may be legal remedies you can take to assure that that happens. You may want to consult with a probate attorney for guidance. In regard to your concern about damage and monitoring, please refer to the American Assn. for the study of Liver disease and the Hemochromatosis guidelines. Full link to the site is provided elsewhere on this site. The hematologist is definately a better bet----they seem to have a better handle on this disorder than pcp's and even some gastroenterologists. If there is liver involvement, you'd want to look for a gastroenterologist with a special interest in hepatology. Good luck!

Wed, December 26, 2012 @ 5:35 AM

198. Michael wrote:
Hi there, I'm 25 and recently had blood work done. My dad found out he has high iron, so I needed to have mine checked. My results came back fairly high. My ferritin was over 1100, iron 209, and saturation is 87%. I'm usually tired and seem to be dragging but just figured it was because I wasn't sleeping well. I have an appointment set in a couple weeks but was just wondering how my numbers compared to others for my age. And any advice you might have. Thanks

Sat, December 29, 2012 @ 9:23 AM

199. Pam wrote:
If I were you (non-professionally speaking), while waiting for your appt., I would go to your local bloodbank and donate blood---you don't have a diagnosis as of yet, but your numbers are DEFINATELY HIGH for someone so young. If you use alcohol or tobacco products--STOP NOW and limit you're Vit. C intake and foods high in iron (red meats and MANY CEREALS...some as high as 90%--read the labels.. You're fatigue may very well be related to the high iron. You didn't say what kind of a doctor you are seeing, but I'll assume it's a primary care doctor. Ask for a referral to a Hematologist PRONTO and a gastroenterologist. The hematologist is a blood doctor and is usually fairly well trained on the treatment protocols, whereas pcps as a general rule aren't. It would help you to find a gastroenterologist with a special interest in hepatology (study of the liver) which is a common target of iron overload. Whatever the cause, you need to get de-ironed as soon as possible. The strange thing about HH is that it affects different people in different ways, which can mislead an unsuspecting dr. not to look for it----so YOU are VERY LUCKY and SMART to have taken your dad seriously to get screened when you did. Educate yourself as much as possible----there is a great deal of information available on this web-site and keep up with the schedule the hematologist orders for you. Best of luck to you!

Sat, December 29, 2012 @ 9:15 PM

200. Irene wrote:
Hi Pam:

I came across this site in October. I shared my experience in Comment 180.

I think you are providing a wonderfully helpful service to those who ask for help on this site.

Just want to say thank you and have a Happy, Healthy New Year.


Sun, December 30, 2012 @ 12:36 PM

201. Pam wrote:
You and everyone else is very welcome! But you may be surprised....I am NOT AT ALL affiliated with the IDI or ANY organization whatsoever! I have, however, PERSONALLY WITNESSED the detrimental effects of this disorder going undiagnosed in many individuals, or diagnosed AFTER irreversible organ damage has already occurred and see the challenges patients are still facing, in not only getting the proper tests done, but also in getting the tests properly interpreted and the proper treatment and monitoring schedules set up. I am NOT a medical professional either, but someone who has a special interest in medical things and once worked in a medically affiliated career for decades. I found this blog to be a great place to help others and I am glad I found it and that others are benefitting from the information and help I can offer. I think the information the IDI provides is FABULOUS!

May all (including you, Irene), find the New Year to be good to all and to everyone's good health! Wouldn't it be great if the new year brought a celebrity who also suffer's HH to come forth, one who might find this site and become a partner with the IDI to provide public service announcements! Now, that's what I would call a "Good Year! Be safe everyone!


Mon, December 31, 2012 @ 2:58 AM

202. wrote:
Have been having problems with bruises just showing up all over. A burning sensation inside my body like i was on fire, finally went to dr and did blood work.Found that both wbc/rbc were both way low, was sent toanother dr for more tests.Same results execpt this time my iron count was 1000 and is supposed to be around 50.again more tests and now wait two more weeks for results so here I set and wait.???

Tue, January 1, 2013 @ 11:52 PM

203. Pam wrote:
Call the nurse at the dr's office a couple days after your blood draw to see if your results are in yet and tell the nurse that you are concerned this may be more urgent than the dr. may be aware of based on the 1000 number. Then check back every day and keep on them until you get answers. If you have not already printed out the helpful forms and charts for anemia with iron overload offered elsewhere on this web-site, do so and get them to the nurse for the dr. You are your best advocate. Best wishes!

Wed, January 2, 2013 @ 3:49 PM

204. Henry wrote:
Thank you Pam. Called Dr today to see if I could start giving blood to start process and she said no, and too wait till next results come back.I'm guessing just incase the have to do a liver biopsy. Just my guess?

Wed, January 2, 2013 @ 6:32 PM

205. Pam wrote:
It's not unusual for them to repeat the test to confirm the results. Lab errors, or other factors can influence the results, so to be sure they do the proper thing, they need to confirm. Ferritin can rise for many reasons. If the repeat testing confirms a ferritin over 1000, they need to determine why, could there be some inflammation somewhere (as opposed to iron overload)??? They are looking for a reason for your low blood counts. Is DNA testing in order??? If your blood counts remain low, they may order additional tests to determine why. DNA tests are required to determine HH; iron tests are used to determine iron overload. Low blood counts can be something else. If HH is confirmed, a hematologist would be the best to determine treatment for that in light of your other issues. Try to be a little patient and wait for the repeat test results and go from there. Take one step at a time. Hope you get answers soon.

Thu, January 3, 2013 @ 4:50 AM

206. Henry wrote:
my spleen is enlarged by 3mm not sure what that means

Thu, January 3, 2013 @ 7:31 PM

207. Pam wrote:
Me neither--NOT a medical professional. But it sounds like your GI is investigating right now and the GI needs these other blood tests to either rule in or out whatever he/she is suspecting. In light of these issues you present, just try to be patient until you go back and review with the dr. Of course, if in the meantime you experience any emergent complication, don't ignore it. Again, unless you have an actual diagnosis of HH, the high iron could be from something ELSE. Try to take one day at a time and try to have a little patience until you see the dr. again. Hang in there.

Fri, January 4, 2013 @ 10:58 AM

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Fri, January 4, 2013 @ 9:41 PM

209. chanti wrote:
verry good

Wed, January 9, 2013 @ 10:49 PM

210. Kellie Gordon wrote:
I'm concerned because my iron Lvl is 244 mcg/dL, Iron binding Cap. 314 & Iron Saturation is 78%...& my doc. is not concerned, he said they are normal..I'm 37 yr. old female. I"m I understanding that these are above normal range?

Mon, January 14, 2013 @ 8:09 PM

211. Pam wrote:
Your iron sat% IS elevated and this will typically happen in EARLY loading. Print out the helpful forms and charts available elsewhere on this web-site and point out the part that references the TS% elevations, to your doctor. Tell your doctor of your concern and that you want to RE-VISIT in the NEAR future with REPEAT testing and that you want the Dr. to use these charts as his/her guideline. Ask the dr. to write a prescription to do the re-checks. Make sure you are fasting when you have the blood draws and follow the other suggestions on the charts. When you say iron Lvl, are you talking about SERUM IRON or SERUM FERRITIN??? Serum iron is what is in the blood (ie NOT stored in organs), whereas FERRITIN can represent what is STORED or be an indication of inflammation (acute phase reactant). If you have any blood relatives that were already diagnosed or who have had health problems that could have been caused by this, then just be sure to follow it up and don't let it fall through a crack. Hematologists seem to have more knowledge about iron issues than primary care but a primary care doctor, once provided with the charts, can certainly help you get the diagnosis and then refer to a Hematologist for treatment if so indicated by the charts and your own results. Best wishes!

Tue, January 15, 2013 @ 6:02 AM

212. Joanne wrote:
Has anyone tried iron chelation drug??

Sat, January 19, 2013 @ 6:11 PM

213. Sam wrote:
My partner has kidney failure and is on dialysis he takes iron injections fortnightly . He has been un well for at least 2 months vomiting lethargic muscles ache so much can hardly move , recently been informed his iron levels are to high . My concern is his dialysis nurse said there is nothing they can do and eventually his levels will drop back down . He is very weak is getting no nutrition what so ever he looks and feels awfull and it really starting to have huge impact on his life .

Sun, January 20, 2013 @ 2:24 AM

214. Pam wrote:
So sorry to hear of your troubles, but those of us here on this blog are NOT medical professionals. Do you know if the professionals actually ran iron panels or based their injection treatment on OTHER LAB RESULTS? While it's possible your partner COULD HAVE HH, which COULD BE the underlying cause of the need for Dialysis, the ONLY WAY to determine that is via IRON PANELS and subsequent DNA, if so warranted.. You COULD print off the "helpful forms and charts" on this web-site as they relate to HH and the Anemias and discuss with the medical professionals. Sorry can't be of much more helps than that. Best wishes...

Sun, January 20, 2013 @ 7:57 AM

215. Xos&#233; wrote:
I took my blood analysis last thursday, and I ve 192 iron level in blood, and Ferritin 329. The doctor ask for repeat the analysis in 3months. I am 47 years old male, and my liver enzimes are normal.Should I be worrie about or are my levels normal.?

Thu, January 24, 2013 @ 4:30 AM

216. Pam wrote:
Please refer to the helpful forms and charts available elsewhere on this web-site and use that as your guide. You can even give a copy to the dr. Early loading will typically show up in an elevated TS% which was not listed in your post. The BEST time to catch this is BEFORE it shows up in elevated liver enzymes, so it doesn't sound worrysome per se, at this point, but something you definately want to keep an eye on. Be sure to follow the guidelines printed on the charts for things to avoid prior to testing and always be sure to be in a fasting state for the most accurate results. Sounds like you may have found a doctor in-the-know and that's a good thing!

Thu, January 24, 2013 @ 5:13 AM

217. Liz wrote:
My dad has HH (not sure of gene type) and now Primary Liver cancer. This is v. disappointing as advanced and not picked up despite being diagnosed and under a consultant for years. I have established, after complaining of joint ache in hands, wrists, feet and ankles for some time and now knee swelling, that my SF is 273. I also have chronic fatigue which has now got to a level that is impacting of daily life. Doctor not concerned but I think I may also have HH. I've got to the stage that I hope I have as I feel so tired! Could a SF level of my level, which I know is relatively low compared to others on this site, be causing my symptoms. My Dr. doesn't. Thx

Mon, January 28, 2013 @ 9:54 PM

218. Pam wrote:
Your SF COULD be up because of the knee swelling ie inflammation in the body, but a SF IS NOT ENOUGH to diagnose HH. As stated in last post, please refer to the helpful forms and charts. Special IRON TESTS are required to diagnose Iron Overload and GENETIC TESTS to prove HH. HH affects everybody differently- which is why the dots aren't always being connected. Could your SF Level be indicative?--the only answer is "POSSIBLY". There are many reasons for iron loading--refer to the charts. If your father has two gene's, one would pass to you and if your mom has the gene's, one would pass to you from her, which would place you and any siblings at risk of loading. You're SF level at this point in regard to possible HH is not way high, but suggest you re-visit very soon and insist your dr. run ALL the proper tests (per the charts), following the guidelines on what to/to NOT do before the test, and YOU compare YOUR numbers to the charts. You can also print off a copy to provide to your doctor. Very sorry to hear of your fathers news. You've come to a great place for information and support. Educate YOURSELF and anyone who will listen. The more that know, the more WE CAN ALL educate the Dr's. Best wishes.

Tue, January 29, 2013 @ 5:26 AM

219. Jean wrote:
Hi Folks

My brothers both have HH; one is basically without symptoms and the other is really suffering from joint pain. I am a heterozygote who checks this site for updates from time to time.

Could anyone with HH and joint pain as their main symptom please share? I'll be glad to write back w/ my brother's experiences. Thanks!

1) Pam is a fantastic resource, including support, but please read and respect her mention that she is not a medical practitioner. Please don't expect her to be your diagnostician or therapist. :-)
2) If you have ANY suspicions that you may have HH...
a) Don't assume your/any doctor is knowlegable, current, and/or really excited to help you get to the bottom of things. Unfortunately, HH symptoms aren't really obvious nor do they sound like they need immediate attention. Sorry, but it's true, so you should start the attitude shift needed to take control over your own medical progress TODAY.
b) Unload blood by any means necessary (e.g., the Red Cross) TODAY.
c) Download all forms on this site and find a doctor who has heard of HH, can run the tests and get the results back to you quickly. Use the phone so you don't waste time with drs who want to do things s-l-o-w-l-y. Do this TOMORROW.
d) Decide before the lab results come back whether you are going for genetic testing if you have iron overload. Personally, my brother had to really push me hard to get genetic testing; I just had/have probs w/ my DNA being "out there". Do this the DAY AFTER TOMORROW and if you decide you will get genetically tested, get the name of a geneticist willing to do this.
3) I've noticed much younger people posting here. While I hate to hear teenagers have to worry about HH along with everything else on their plate, it's great news that you're getting diagnosed early.

Good luck and good health to everyone and their loved ones!

Wed, February 6, 2013 @ 6:07 PM

220. Pam wrote:
Jean, thank you for your comments---well said!

Thu, February 7, 2013 @ 6:38 AM

221. Irene wrote:
Hi Joanne:

Please see Comment 180 for my experience with iron chelating agent.

Wish you good health.


Thu, February 7, 2013 @ 9:02 PM

222. Gordon wrote:

I was at the hematologist on Friday for a follow up. I've had 6 phlebotomies now and my ferritin is down to 400 from 1078 beginning. Looks like things are working and I'm on the right path. Thanks for your help.

Mon, February 11, 2013 @ 11:40 AM

223. Pam wrote:
Great Going! Success stories are always good to hear! Keep on your treatment and don't let anything slip on by!

All the best and to good health!

Mon, February 11, 2013 @ 5:21 PM

224. sarah wrote:
I have been undergoing by weekly phlebotomy, but my ferritin levels have only reduced 40 (now 3320) and my iron has reduced to 30. They are concerned as this isn't working. Any suggestions? I don't have all the symptoms of haemachromatosis.

Wed, February 27, 2013 @ 11:01 AM

225. Pam wrote:
Some people have NO symptoms and others, lots of symptoms and anywhere in between and this is why many physicians don't even think to look for it. With STORAGE IRON that high, I would think (non-professionally) that twice weekly, assuming that can be tolerated. is warranted until you get under 1000, then adjust accordingly. With each 500ml unit of blood there is only 25-30ml's of stored iron that is removed. It would seem that you are not getting treatment often enough for your situation. I recommend you print off the helpful forms and charts available on this web-site--give one to your doc and keep one for you and use these for your guides. With a Ferritin level that high one would expect some liver involvement. I do not know how your health care system works but here in the U.S. most patients try to be followed by a hematologist for the phlebotomy treatment and a gastroenterologist with a special interest in the liver, called Hepatology/Hepatologist. Elsewhere on this web-site there is a link to the American Association for the Study of Liver Disease guidelines for HH which I highly recommend your/your physician consult. These resources will help guide you and your doctor accordingly. Here's hoping you get the treatment you need readily.

Thu, February 28, 2013 @ 5:10 AM

226. Diane R wrote:
I have been wondering what's going on with my iron and my doctor is not interested in explaining my numbers to me (although I have given him blood test reports I ordered myself). I'm a nutrition student, visited a nutritionist who was an instructor, and she was also baffled. My red blood cells are midrange (4.60, range 3.77-5.28), my TIBC is 237, below range (250-450), my serum iron is 52, on the low side (35-155), saturation is 22, also low side (15-55). My Serum Ferritin is 312. I am post menopausal and also have type II diabetes.
Any light shed on these numbers would be greatly appreciated!

Thu, February 28, 2013 @ 1:28 PM

227. Diane R wrote:
I should also add: my diabetes is very well controlled, I have consistent muscle pain, some joint pain.

Thu, February 28, 2013 @ 1:36 PM

228. Pam wrote:
Serum Ferritin can represent some type of inflammation in the body. Not being a medical professional myself, I think I would look at all the helpful forms and charts and compare your numbers there and review with your doctor. Maybe a re-check is in order?

Fri, March 1, 2013 @ 3:50 AM

229. Diane R wrote:
I have had two ferritin measurements taken in the past few months, both very similar. My family doctor has all the information, but shows no concern or interest in pursuing. Wondering if I should consult a hematologist? Or a naturopath?

Fri, March 1, 2013 @ 12:09 PM

230. Pam wrote:
Again, not being a medical professional I cannot diagnose you. However, if you look at the Iron overload with Anemia reference charts, this may possibly be representative of a Vit. B12 deficiency or again some type of inflammation. Some of the tests that are used to determine inflammation in the body as referenced here: http://www.webmd.com/rheumatoid-arthritis/guide/blood-tests, include an ESR, CRP, anti-CCP, ANA. Most pcp;s can order these tests to include a B-12 level. You may wish to consider printing off the Iron Overload with Anemia reference charts and show to your doctor. It does NOT look like you might have HH based on the reported results, but you could always rule that out with the genetic tests. With the muscle and joint pain, you definately want to get to the bottom of that and I would think that by printing off the referenced chart and showing the ref. ranges to your doctor, they may be more inclined to run the added tests. Good luck! Hope you get to the bottom of your problem.

Sat, March 2, 2013 @ 8:54 AM

231. John wrote:
After systemic joint pain a rhuematologist ran up bloodwork and diagnosed me with hemochromatosis just this week. My iron is 204 and ferritin a whopping 4544. I see a hematologist in one month. I just turned forty and am a McDonald. I assume I should give blood in the next month. I've drank light beer daily for years. Avoid vitamin c. Drink milk with food. Take milk thistle. Any other advice or feedback for me?

Sun, March 10, 2013 @ 3:43 AM

232. Pam wrote:
Yes--STOP USING ALCOHOL NOW-go to the nearest blood bank on MONDAY, and donate a pint. I understand that most do not specifically ask about HH and if they don't know and you qualify otherwise, that will help you get started. Call the rheumatologists office and point out to them that you need to get in to the hematologist NOW-not in a month-and ask them to see about making that happen. Then you ought look into finding a gastroenterologist with a special interest in hepatology and follow their advice. READ everything available on this web-site to include the provided links, one of which is the American Association for the Study of Liver Dz. guidelines on Hemochromatosis and the liver.. If you also smoke STOP NOW. Until you see a liver specialist, limit any over the counter medications, and be sure to discuss medication management with them and it's role in the liver. Your ferritin is way too high. Best of luck.

Sun, March 10, 2013 @ 4:29 AM

233. John wrote:
Thanks Pam. I gave blood today and will see the hematologist more quickly. I will do all that I need to but I'm not going to get panicky. I won't let this decrease my quality of life any more than necessary. Again thank you for the informative feedback.

Mon, March 11, 2013 @ 10:06 AM

234. Pam wrote:
Keeping a positive attitude is always a good thing, however based on your reported results you are severely overloaded and the longer that stays in the body the more havoc it can wreak. Non-professionally speaking, I would think that twice weekly phlebotomy, assuming your body's tolerance, would be in order until you get below 1000. That one unit you had pulled only had 25-50ml's of storage iron/ferritin in it, but it was something to help you get started. Once below 1000, protocol may be switching to once/week thereafter until you reach goal of approx. 50 on the ferritin. Your personal tolerance will be the deciding factor and will help the physician determine a maintenance schedule tailored just for you. If you have children, you may wish to seek out the genetic studies to help determine their risk and you may wish to inform other first degree relatives to get an iron panel as well to get screened. It used to be thought that iron overload didn't become a problem until middle age. However, time has shown that damage is occurring earlier in life, undetected in most cases. Your liver can be damaged but not necessarily be reflective of that in blood work, as an example. Teens are now getting diagnosed. Seeing as the genes are something we are born with, the iron accumulation begins at birth, just to put things into perspective for you. Some have no symptoms while others have multiple symptoms, most times not being connected to this. Therein lies the key. Here's wishing you an uncomplicated journey in getting de-ironed. I have personally witnessed the detrimental effects of this disorder not being diagnosed or treated in several individuals who are related to one another, or getting a late diagnosis-after alot of irreversible damage has already occurred. The pain, the debilitation, reduced quality of life and premature deaths that I have witnessed were not pleasant to say the least. One of these individuals, a female was born with two kidneys (entirely normal) and later in life was told they only had one kidney. What happened to the missing kidney? Iron overload from HH is the most likely cause. It is hoped that early awareness can lead to early diagnosis and PREVENT the devastation. Again, all the best and to your restored state of health hopefully leading to a normal life expectancy.

Wed, March 13, 2013 @ 6:14 AM

235. John wrote:
I see the hematologist in a few hours. Going to talk to him about all the above and deferoxamine as well. Thanks for the well wishes. I'll keep you posted.

Wed, March 13, 2013 @ 12:18 PM

236. Pam wrote:
John, that's good news! Hope your appt. went well!

Thu, March 14, 2013 @ 7:04 AM

237. John wrote:
So two phlebs a week for a while. MRI and echo scheduled. Got the diet book. Will talk about Exjade next appt. Anyone have experience with that? Thanks all.

Fri, March 15, 2013 @ 11:14 PM

238. Pam wrote:
John, so glad you got in and you have found a hematologist that is on the ball! That is such great news! Remember to also look for that gastroenterologist with the specialty in hepatology, Best wishes for clear results on the MRI and Echo and for the treatment regiment to be tolerable for you. No experience whatsoever on the chelators. Another option to take to the hema. may be about a procedure called "double red cell apherisis". It is mentioned in the "Iron Man" DVD/documentary of a physician and his family available via the IDI. Basically from what I understand is that it is similar to dialysis; It basically removes double the amount of red blood cells which are what carry the iron molecules and then returns the plasma, wbc's and everything else back to the body. Some may find that more tolerable to twice weekly phleb. From what I have learned about it, is that for those whose ferritin is above 1000 (or there could be a different/higher number they would need to see) in order to get this treatment with some ins. co's., some people
find DRCA to be more tolerable and a quicker way to "de-iron". I would bet the cost is more than regular phleb. and it may not necessarily be covered under everyone's health insurance. It's possible there are other qualifications to get DRCA that I don't know about, but just wanted to put it out there to you. So glad you are on your way to de-ironing! Keep up the protocol that is recommended for you and don't EVER let time slide by without a recommended treatment or follow up.

Sat, March 16, 2013 @ 4:24 AM

239. mary ellen wrote:
Is it normal for the ferrin number to go up and down from month to month.

I started with 3,000 down to 500 all most 2 yr

Sat, March 16, 2013 @ 8:01 PM

240. Pam wrote:
I have heard that yes, some people do experience that. As iron is being pulled out, the gut is pulling it back in from what we consume and everybody responds to this disorder in a different way.

Sun, March 17, 2013 @ 7:24 AM

241. John wrote:
Thanks Pam. I'll talk to him about looking into that. Whatever speeds this up, I'm all for it. I'll keep you posted.

Sun, March 17, 2013 @ 2:58 PM

242. Pam wrote:
To John: Very welcome!

Sun, March 17, 2013 @ 9:12 PM

243. John wrote:
Apheresis: ran it passed the hema. Who then in turn said he didn't think my situation warrented that..... ??? Seems odd to me.

Mon, March 18, 2013 @ 3:46 PM

244. Pam wrote:
Like I said, I didn't know a lot about it myself and it's very possible it is reserved for those who are more than double of what you are or some other high number. But it was definately worth the asking---that's how we learn. So maybe next time you see the hema. you might get a better explanation as to why not for you and maybe you can share it with the rest of us on the blog. It may be reserved for those having other problems on top of everything else; I just really don't know, but wanted to throw it out there. It would seem that you are so far tolerating the twice weekly phleb. and that is a really good thing. Phleb. is a simple and inexpensive method for treating this disorder and if it works-go with it. I've seen where other people's ferritin got up to over 10,0000---or off the charts. I wish the Iron Man DVD covered a better explanation than it does, about the DRCA, but it certainly gives a great overview of what all who have it and don't know it are up against.. I'd personally like to thank Dr. Carpenter and his family for sharing and creating that documentary to help educate the public. Stay up on your treatment Jonh and try to take one day at a time. Thanks for sharing.

Tue, March 19, 2013 @ 3:11 AM

245. John wrote:
Thanks for your feedback. After one 500ml phleb and a handful of lab draws, my ferritin has gone from 4544 to 4138. So that is encouraging. Apparently the Exjade has some pretty nasty side effects, so look like we're sticking with the phlebs weekly for now. I am being told that I will become anemic prior to meeting healthy fertitin levels, so I'm sure that will be a point of discussion. I meet with him on the 8th, hopefully I'll have some good info to relay then. Thanks!

Tue, March 19, 2013 @ 9:30 PM

246. Sam wrote:
Pam I am 56 and have HH. I also have fatigue, mental confusion and joint pains.I am seeing a homotologist and have given 1 pint of blood once a month for 3 months. However my ferritin count has actually resin from 1405 to 1489 on the most recent sample. Should I ask the doctor to do the blood with draws more often?


Wed, March 20, 2013 @ 12:11 AM

247. Pam wrote:
Sam, YES. If you were to print off the helpful forms and charts available from the IDI website here (see links above) and provide a copy to your doctor and ask him to follow that protocol, you would need TWICE WEEKLY (if tolerable) phlebotomy's until such time as your ferritin gets below 1000 then once weekly until such time as your ferritn gets between 20-50. Along the way, your ferritin levels ought be checked and your personal history will help the dr. best determine a maintenance schedule just for you. I presume you have read my prior posts and therefore are also aware that the longer too much iron is present in your body, the more damage is done. Some damage may be reversible, some not and that is the bottom line and what patients try to PREVENT. So, call the DOC TODAY---anything over the 1000 mark is worrisome and warrants WAY MORE FREQUENT treatment than what you have been afforded. Again, I am NOT a medical professional, but this is the information that I have learned about this disorder. I would also recommend you consult a gastroenterologist who specializes in hepatology and read about the connection with HH and the liver at AASLD, per THOSE guidelines as well considering your ferritin level. All the best.

Wed, March 20, 2013 @ 12:56 PM

248. bernie wrote:
I have just been told my iron level is 666 should I be worried ? D2

Thu, March 21, 2013 @ 8:42 AM

249. Pam wrote:
If I were you, I would get a copy of your labs and compare YOUR numbers to those on the charts published by the IDI. The three key tests for determining iron overload are: Serum Iron, Serum Ferritin and Total Iron Binding capacity. From those numbers a Transferrin Saturation % is determined. If when you get your tests and you do not see these three KEY tests, ask your doctor to REPEAT the test with the others included and follow the recommended guidelines of the IDI for what to and not to do before you have the blood draw. It would seem that yes, what you have reported seems high and deserves a re-look in the very near future.

Thu, March 21, 2013 @ 6:06 PM

250. Pam wrote:
This is a clarification for Bernie: I would recommend you do this within the next week, if not today to get re-checked. You may be able to get the numbers you need with a simple phone call to your doctor. Did the doctor make any recommendations to you? Whatever the case, delaying this much longer could pose trouble and that's what you want to PREVENT. Best wishes...

Fri, March 22, 2013 @ 10:43 AM

251. Brian wrote:
I am a 63 yr old white male and have been HH symptomatic since about 40 but was always discounted as nothing to worry about. Until I was diagnosed with HH and under treatment from about 4+ years ago. I am now on a maintenance schedule for the phlebotomy's for 1 1/2 years and only get a draw 2 or 3 times a year. For the last 3 years I have been treated for heart arythmias and tachycardia. The cardiologists have done every test invented and have ruled out all other possible causes for the malfunctioning heart, They have always been unwilling to accept HH as the cause until recently. There has been no other explanation and I think HH has been the last possible explanation. I have done extensive reading on HH and how iron effects the heart. I have given the cardiologist printed material from Major institutions such as this site and Harvard University. They now acknowledge the HH possibility but still reject any documented connection between HH and heart arythmias. WHY? Is anyone one else having this problem. Myself as well as several family members with HH have experienced this denial with virtually the entire medical community. GP's Hemotologists, and cardiologists alike. I know HH has been undiagnosed and thought to be rare for many years. I believe the information is getting out however my cardiologist seem to still be in the dark ages. As far as my heart is concerned the damage has already been done and it is irrelevant as to the cause.(heart disease or iron overload) the treatment now at this stage is the same. I will soon have a defibrillator (ICD) put in. My daughter at 38 had the same heart symptoms as I did at her age but Thank God she has found out she has HH at a much younger age and hopefully the damage to her heart is limited. Anyone else have this problem?

Sun, March 24, 2013 @ 11:35 PM

252. Pam wrote:
It is unfortunate, but many people go through the exact same thing. Some dr's get it in their heads that they know it all, when in fact, they don't. Because of the lack of education about it, they may be skeptical of patients that seem to know more than they do and others are glad to learn what we can teach them. Dr's are people too and with the sheer number of medical disease that exists, makes it utterly impossible for all dr's to know all, which is a sad fact, but true, nevertheless. Share your knowledge with everyone that you know to help educate others. Eventually, it will be WELL KNOWN....it's just gonna take time. Thank you for sharing your experience here. All the best.

Mon, March 25, 2013 @ 5:03 AM

253. Marco wrote:
I am a 38 year old male with ferritin level that is 1027. 6 months ago I was at 1287. I had an ultrasound done and it shows a fatty liver. I have noticed that when I eat red meat the right side of my face from my forehead to my cheek and around my eye it gets numb and tingles. My body gets hot and my temper seems to get short to the point that I stay alone in my room. I also get light headed and lost weight around 12 lbs.. I have gone to see my family doctor and all he says is that I need to diet. Anyone out there experiencing this? Any recommendations?

Sat, March 30, 2013 @ 3:52 AM

254. Pam wrote:
I do not know anything about the red meat-face swelling, never heard of anything like that, however, with a ferritin at that level (danger zone), have you had a complete iron panel done? Do you have a diagnosis? It would seem that if you do have HH with that level, you ought be getting twice weekly phlebotomies (if tolerable) until ferritin under 1000,, and once weekly thereafter to get to goal of 50 and maintain at that level. HH affects everyone differently and with the level you report, who knows if it could do that. My advice would be to print off the helpful forms and charts, take to your doctor and insist proper tests are done and insist on the proper treatment for your high ferritin condition. Ferritin can rise for reasons other than iron overload as well, so this is why you need to find out why your ferritin is so high. Good luck.

Mon, April 1, 2013 @ 4:30 AM

255. John wrote:
After 5 phlebs ferritin has dropped from 4544 to 3646 :)

Thu, April 4, 2013 @ 12:51 PM

256. Pam wrote:
After only 5 phleb's that seems like an awful large drop. I would make sure there isn't some other problem. Each unit only removes 25-30 ml's of iron, so with that large of a reduction in such a short period of time, I would think there may be another problem. Be sure to get the DNA tests to prove HH and a consult with a GI and be sure to discuss with the dr., you see next. Good luck...

Fri, April 5, 2013 @ 10:34 AM

257. Kc wrote:
I have so much pain. Diagnosed with HH at 18, Both parents, I hated giving blood, so I didn't really start until 4 years ago, when I got insurance from a decent job. My transferrin saturation was @ 97% after 3-6 months of phlebotomies. So, at one time I was fully saturated. I feel the damage to my body every morning. It is really hard to get up and get going without pain management (of which I am lacking). When I tell a doctor that my feet or backs of my legs/knees or back pain, they look at me and see me in the absolute opposite light of which I am. Just because I am in my 30's and now after years of monthly 500cc phlebotomies, my hematocrit is ok (with quarterly phlebotomies), doesn't mean I am ok. I have so much fatigue and joint pain on a daily basis, it is ridiculous. I also get sharp shooting pains in my guts from time to time, old sports injuries and I can't get a damn thing past an aspirin or a pez for that matter... Ugh, FmyLIfe....~!

Fri, April 5, 2013 @ 5:23 PM

258. Pam wrote:
Thank you for sharing your story. I hope you are also followed by a gastroenterologist with a special interest in the liver (hepatologist) and have consulted a cardiologist, too. There are others that are in the same boat and unfortunately, we can't turn back time. Hopefully, your story will be an inspiration to those who have been procrastinating to get screened and treated before all the damage is done. Be sure to keep up your treatments and followups and maybe, god willing, you will find something to alleviate your pain that is tolerable. Best wishes.

Sat, April 6, 2013 @ 5:41 AM

259. Ashley wrote:
It was confirmed yesterday that I have Hemochromatosis. Ive had issues with my abnormal liver test dating back to 2010 and have already been diagnosed with Thyroid Cancer. My doctor thinks its all linked together that Ive had issues for years that had never been addressed by other doctors. Im very scared for myself im only 32.

Wed, April 10, 2013 @ 2:59 PM

260. Pam wrote:
Gosh, that is scary! But what you CAN DO for you, is to keep a positive attitude and follow all the treatment protocols that your new doctors prescribe for you. Keep up on your phlebotomies and keep sharing your story with others because that is helpful and will give you good purpose to try to prevent the same from happening to others. In spite of your diagnosis, you ARE lucky that you got diagnosed when you finally did, as so many others continue to go undiagnosed until their 40's or 50's and sometimes never at all and end up being treated for all the associated conditions, but never the underlying one. Don't ever let ANYTHING destroy your spirit. You have come to a great place for support and information and thank you for sharing your story here. All the best in your treatment and may you have a full recovery.

Thu, April 11, 2013 @ 5:25 AM

261. marygarito wrote:
Hi Everyone. A knowledgeable friend suggested that I look into whether I have an iron overload issue based on my recent labs. And I was wondering what you guys thought. My results are:

iron, total 138 (40 - 175 mcg/dL)
iron binding capacity 246 L (250 - 450 mcg/dL)
% saturation 56 H (15-50 % calc)
ferritin 55 (10-232 ng/mL)

I also had a genetic test through 23and me and do not have any of the MTHFR genes. I used to have low iron and supplemented with heme iron. I suspect I simply overdid it but I guess I better be sure and do a little more research...Thank you!

Wed, April 17, 2013 @ 2:42 PM

262. Pam wrote:
To summarize, TS% is elevated and TIBC is low, the other tests appear normal and you know you don't have the HH genes. Have not seen anything like this before, but because your numbers are not that far off of the norm, you may want to re-visit these tests/repeat them in three to six month's time. Lab errors do occur from time-time and there are OTHER iron disorders besides HH. I would encourage you to visit the "Helpful forms and charts" available here at the IDI web-site. Do you have any symptoms of an iron disorder? Sorry, not much more help.

Fri, April 19, 2013 @ 11:29 AM

263. Kenn wrote:
I just got my lab report. My ferritin was 565, the transferrin saturation was 44% and the Serum Iron was 118. I was 23 years old, I was so scared my lived had suffered serious damage. I want do some bloodletting but my PLT was only 100 something. (In my country, PLT range is 100-300, but in usa is 150-450)Do i allow to go Phlebotomy ? Thank you

Sat, April 20, 2013 @ 4:13 PM

264. GUS wrote:
First time on this I have high iron last test ferritin level 2207 have been getting 700 ml of blood removed every week for last 6 months doesn't seem to be dropping any suggestions

Sat, April 20, 2013 @ 5:48 PM

265. Kenn wrote:
I just got my lab report. My ferritin was 565, the transferrin saturation was 44% and the Serum Iron was 118. I was 23 years old, I was so scared my lived had suffered serious damage. I want do some bloodletting but my PLT was only 100 something. (In my country, PLT range is 100-300, but in usa is 150-450)Do i allow to go Phlebotomy ? Thank you.

Btw, I had take pill includes multivitamin and 18mg iron per day for 4 months. Does it cause my high ferritin lv and Ts? any suggestion? Thank you.

Sat, April 20, 2013 @ 5:57 PM

266. James wrote:
I am confused at what I have been reading. I am a 57 year old, fit, healthy male with no major health problems and no symptoms. My ferritin is 350 and has been in this range for several years. I was checked for genetic issues but there is no problem. I did use eatracker.ca to track my food for a few weeks and was surprised that my iron intake was way above the recommended limit daily. There is iron in so many foods!

I read some articles that say normal range for ferritin is well below 350. I read other articles that say ferritin levels of 350- 400 are perfectly normal and not to worry. My doctor suggested donating blood to bring those numbers down. My preference though would be to first fully understand if my levels are safe and normal and if not make dietary changes if necessary. Better to deal with a problem by changing lifestyle than shielding yourself from the wrong dietary habits by artificially lowering your levels and maintaining the bad habits. So is 350 normal or not? Should I be aggressively lowering this or is 350 ok? Thanks.

Mon, April 22, 2013 @ 10:41 PM

267. Pam wrote:
Sorry folks-having technical difficulties--this is a test post.

Tue, April 23, 2013 @ 5:54 AM

268. Jim Anderson wrote:
Searching on Internet for "irony smell in blood" turns up useless almost hurmous results so I came here. I have a noticably higher iron smell (yes I know that is iron oxide but you can't have iron oxide without iron) when I bleed from even a small cut. This is much more pronounced than as recently as three years ago

Should this in and of itself indicate a concern about iron -- even to get the tests? I'm 61 with no history or other high iron indication but of course have a few other health concerns that -- if I had high iron -- could matter...


Wed, April 24, 2013 @ 11:32 AM

269. Pam wrote:
This is another test post. Have tried numerous times to post and it won't. I'll keep trying.

Thu, April 25, 2013 @ 10:38 AM

270. Pam wrote:
Test worked. Trying again here. Non-professionally speaking, I think Kenn ought consult a hematologist to have the iron panel repeated and a determination of why your platelet count is low. Print-off the helpful forms and charts here at the IDI and take to your doctor. Follow the recommendations for pre-testing things to and not to do. Your ferritin and TS% do indicate iron loading but your platelets say something else and a hematologist being a doctor of the blood would be your best bet here. Do not delay. Could there be a lab error???? or is there something else going on???? Those are the questions you need to ask a medical professional. Best of luck in getting to the bottom of things.

Thu, April 25, 2013 @ 10:45 AM

271. Pam wrote:
For Gus: 700ml once/week seems excessive. At your ferritin level, protocol is twice weekly (500ml each) until your ferritin is below 1000, then to switch to once/weekly (500ml) thereafter assuming tolerable as measured by your HCT until you reach maintenence level of 50. The goal is to maintain somewhere between 20-50 for optimal health. Your current treatment does NOT seem appropriate to your present situation and seems to answer why you keep rising instead of lowering. Also recommend following the dietary guidelines also published by the IDI and that you consult a gastroenterologist with a special interest in the liver, called a "hepatologist" and perhaps a cardiologist (heart) for an evaluation. Read everything available here at the IDI to educate yourself.

Thu, April 25, 2013 @ 10:56 AM

272. Pam wrote:
James, ferritin besides reflecting iron storage, can also indicate some type of infection or inflammation in the body. Since you indicate you do not have the major genes that are tested for in HH and your ferritin level has not been rising, but holding steady for years, you are probably ok to use the general guidelines for someone NOT having HH. However a blood donation from you from time-time may be of benefit to both you and someone in need of blood. Considering there is no natural way for ridding the body of excess iron, I would watch your iron intake from the items in your diet and lifestyle and perhaps ask that you be checked on an annual basis. Any sharp rises in your ferritin level is what would be something that may signal a problem and would clue in an astute physician to search for the culprit.

Thu, April 25, 2013 @ 11:08 AM

273. Matt wrote:
A couple questions about fatigue related to Hemocromatosis, perhaps others who have had this can comment.
Basically I'm trying to figure out if my debilitating fatigue is related to my Hemocromatosis or something else?

They are giving me phlebs and my ferratin is down to about 300.
1) Would I still feel fatigue on some days?
2) Would it be normal to feel great/fine some days and extremely fatigued on others?
3) What does this type of fatigue feel like? Mine feels like a kind of heavyness/tingling in the arms and legs. When I wake up each morning I immediately know if I will have an awful day or great day. It's rarely in the middle. Also seems to run in streaks, 3 or 4 bad days, 10 or 11 good ones in a row

Thanks so much for any help anyone can provide!

Thu, April 25, 2013 @ 3:14 PM

274. Oscar wrote:
I am 28 male and in healthy shape.

My iron level was high at 233

the range said 40 to 155 is normal

I heard donating blood was useful?

Then just common sense diet stuff.
What should I do??

Sun, April 28, 2013 @ 10:17 PM

275. Pam wrote:
Matt, it IS NOT uncommon for HH patients to feel the fatigue, however everyone is different and experiences symptoms differently. It IS POSSIBLE that once you reach the maintenence level (20-50 Ferritin) that it may improve, but also possible that it doesn't. During the intial de-ironing stage, iron is being pulled from the organs and I think that is what creates the fatigue. Hopefully, you will be one of the lucky ones that recovers from that once you are done with the initial de-ironing phase.

Tue, April 30, 2013 @ 5:01 AM

276. Pam wrote:
Oscar, you do not mention whether the iron you report is a Serum Iron or a Serum Ferritin. It is the FERRITIN aka/STORAGE IRON, that is what is watched for STORAGE. One caveat however is that Ferritin can also represent infection or some other type of inflammation in the body. That is why it is recommended that those who are concerned they may have an iron disorder, have a COMPLETE IRON PANEL run. This would include a Serum Iron, Serum Ferritn and a Total Iron Binding Capacity. From these numbers a Transferrin Saturation % is calculated and anything over roughly 35% may indicate EARLY LOADING. I would suggest you REPEAT testing-having the COMPLETE Panel run. Serum iron is what is "circulating" in the blood and not yet being STORED in the organs. The IDI offers helpful suggestions of what to and not to consume for a period of time BEFORE you test. I recommend you print out the helpful forms and charts available here, follow those guidelines for pre-testing and take them to your doctor asking him/her to follow those guidelines. Assuming everything on the repeat testing is normal, I would recommend at least an annual screening to watch for it. Good luck!

Wed, May 1, 2013 @ 5:38 AM

277. Jim wrote:
Hi Matt I live in Ireland and was diagnosed with HH in 1999 with a level 0f 700 I was feeling exhausted with severe fatigue, heart palpitations and joint pain. Thankfully I suffered no liver damage and had 2 years of phlebotamies my levels are now 50 to 70 with several years and I hav'nt had blood taken for 4 years . My Palpitations have gone but my exhaustion/fatigue and joint pain still continues,my fatigue is very bad somedays. My doctor is specialising in Haemachromatosis and gives lectures on the subject she has said very little is known about the disease yet but they have now noticed that once the levels are brought below 100 for some reason it doesn't go back up. She told me I would continue to have fatigue and joint pain indefinately even though my levels are normal and they still have to figure out why this is happening. Incidentally my Mother who suffered terrible fatigue died suddenly in 2000 from a Clot we now feel she had HH but doctors were not testing for it then

Fri, May 17, 2013 @ 2:30 PM

278. Tomos wrote:
Hi everyone,
I would like an opinion if you don't mind.

My dad had HH and died of Liver Ca in 1998. I'm C282Y carrier. I had iron tests in the early 1990's when Dad was diagnosed and they told me they were a bit high, but nothing to worry about. Then about 5 years ago I lost nearly half a head of hair, but the doctor just said it was stress (I have a fairly high demand corporate job) and did not do iron tests. Anyway, for many years I have a lot of joint and back pain since my mid 30's.

I'm now 50 yo female (not yet menopausal) and over the past year I have felt terribly fatigued and no amount of rest gets rid of it. In March this year I got shingles and a couple of weeks later the doctor did an iron test and it came back ferritin of 350 and saturation of 50%. I thought I might have post viral fatigue, but the doctor said it was the iron making me fatigued.

I've had two phlebotomy's a week apart and blood reading now a couple of weeks later 45% and ferritin 250. I feel a little better, but still terribly fatigued and sometimes get a bit breathless. I am (was) reasonably fit, healthy weight range but do have Polycystic Ovary Syndrome. Does anyone with experience of iron disorders think I should be asking to continue with the phlebotomy until it gets into the normal range.

Thanks - Tomos

Tue, May 21, 2013 @ 5:54 AM

279. Tomos wrote:
Sorry, forgot to mention I have hemangioma liver and blood test last year showed some elevated proteins (only got told about this today)

I know in the scheme of things I have very little to be concerned about with excess iron after reading many of the stories here and after seeing my Dad live with it, the levels he had and the ongoing phlebs; but this fatigue is awful and I am hoping that a normal reading of iron may help fix that, asides from lessening the risk of doing any damage to my organs. Appreciate your thoughts. Anyone?

Tue, May 21, 2013 @ 7:10 AM

280. Pam wrote:
Storage Iron at your level is in excess of normal, so, yes, in answer to your question, you should continue with phlebotomy weekly, as tolerable to get your ferritin down to between 20 and 50 and keep it there. Once you get to maintenence, you need to be monitored frequently to keep it down. There was a report with the National Library of Medicine that they are finding carriers of just one copy of the C282y can still load iron and that it is possible that there are OTHER genes not presently being tested for that play a role in the iron loading. Remember that too much iron is toxic and can wreac havoc on any part of your body, from the inside out. Your level is not TOO bad, but the sooner you get the excess out and keep it out, the better you will be.

Tue, May 21, 2013 @ 7:31 AM

281. Tomos wrote:
Thank you Pam, I thought that I should insist on getting it out. I was diagnosed with osteoarthritis in my early 30's but no one at the time was interested in finding out why. By 45 I needed total knee replacements and now I have lots of pain in my back and shoulders and now my hands are getting weak. I am determined to stay active, but this fatigue is making that hard at the moment.

Because of the PCOS, I only started menstruating in my mid 40's and suspect that in the past my fe levels have been much higher, but anyway I'm one of the lucky ones.

Reading this forum has taught me much and it puts things in perspective for me. I appreciate your answer to my question. Tomosina

Tue, May 21, 2013 @ 8:23 AM

282. Bill wrote:
This is in reply to Chris # 97. You dont have hemochromatosis, you have low iron stores and low saturation. If your Doc is really that stupid to drain your blood at this level. Get a new DOC!!

Tue, May 21, 2013 @ 2:16 PM

283. Trudy Cuffe wrote:
I have Polycythemia Vera Primary and was wondering what REALLY WORKS to eat or drink to help reduce the iron I eat from entering my system thanks and is there a cereal with no IRON

Tue, May 21, 2013 @ 5:26 PM

284. Pam wrote:
To the best of my knowledge, there is really nothing per se that PREVENTS the body from loading iron, but there are other dietary measures that can be taken to REDUCE what the body loads and I recommend the Dietary Guidelines of the IDI, found elsewhere on this website. Not aware of any cereals NOT containing iron, but I would recommend you READ labels and opt for those with lower amounts of iron.

Wed, May 22, 2013 @ 4:22 AM

285. Cory wrote:
Just curious...I am 30 now, I was diagnosed with HemoC. when I was 29, which is a little under the average. I am a college wrestling coach so I feel like I was in great physical condition, yet I was really starting to hit "a wall" with my daily workouts as I couldn't go longer than 20-30 minutes. Long story short my ferritin levels were around 1600 as a 29 year old. While the Dr. wouldn't come out and say it, from what I've read this is beyond dangerously high. Does anyone know exactly how bad that number was and what could have happened to me. I read somewhere that - that number was closing to having a stroke or heart attack, but have not been able to locate that since.

Sat, June 8, 2013 @ 8:17 AM

286. Liz wrote:
Thanks for this blog! I'm a 52 year old female diagnosed three years ago. Waited to start phlebotomies for two years due to extreme needle phobia. Excuse the pun, but how "ironic". A hypnotist and strong motivation got me to the blood bank. I'm now anemic with a ferritin level of 7. My question is, though I feel better(less joint pain and fatigue), Is still have symptoms. With high iron under control, why do I still feel "off". Even when I'm not anemic, I still feel pain in joints! Should I expect to have symptoms forever??

After reading comments I would like to tell those looking for a good doctor to call an oncology office. For some reason, blood disorders are handled by cancer doctors. Also, I'm a Mayo Clinic patient. My ferratin was only 205 and they wanted me to start treatment right away. DON'T WAIT!! I also skipped a liver biopsy and opted for MRI's of my liver. Iron will show up on an MRI and can be monitored that way.

Thanks everyone!

Sun, June 9, 2013 @ 9:59 PM

287. Pam wrote:
Cory, anything over 1000 on the ferritin is DANGER. This can affect ANY PART of your body...any organs, glands, bones, joints. Since everyone is different it affects everyone differently. So, in answer to your question, ANYTHING could have happened. The good thing is you are on top of it now and as long as you stay on top of it, you can PREVENT any FURTHER complications that can arise if your ferritin is too high. Liz, you may still feel "off", because your ferritin is still off balance. For those with HHC, it is recommended that ferritin levels are maintained somewhere between 20 and 50 and it sounds as if you were OVER BLED. The goal is to maintain between the 20 and 50 mark. Since this does affect everyone differently, it's possible that the arthritis that may have accumulated does NOT improve. Hold off on the phlebs until you reach 50 on the ferritin. Some people report feeling best at 20 on the ferritin and others at the 50 mark. Each unit of blood contains 20-30ml's of iron. So, if your ferritin reaches the 50 mark, a treatment will put you at the 20-30 mark which is a good balance for someone with HHC. Before your next scheduled phleb., your hematologist ought be checking a ferritin level. Your dr. should have gotten a feel for how fast you load, by the treatments you have already received. Of course, diet does play a role, so this could be a hit or miss. I would think re-checking you on a monthly basis may be warranted until you reach the 50 mark, to help get a better feel on a maintenance sched. specific to you. Just be sure to keep track of your numbers and ask your dr. to follow the recommendations of the IDI.

Mon, June 10, 2013 @ 8:54 AM

288. Cory wrote:
Not that it matters, I know my 2 doctors I saw and the ladies at the blood bank said they have never seen numbers before as high as mine, especially as young as mine.

Does anyone know is there an official symbol or logo for hemochromatosis?

Wed, June 12, 2013 @ 12:54 PM

289. Pam wrote:
Not that I'm aware of. Anybody????

Thu, June 13, 2013 @ 5:01 AM

290. Jorge wrote:
Dear Reader. Last week I did a test of blood and I got a level of ferritin of 509,2 ng/ml. However, transaminases are good. Since I eat few fruit, my level of folic acid is on 4,6 ng/ml which is lower than >5,38 ng/ml. In my case I use to eat a lot of fast food and red meat (cow) so that I don´t know if my level of ferritin could be caused by liver disease or poor nutrition. Is this worrying?. Anyway I have to do an ultrasound to discard a liver disease but I am very worried about it since I am only 28 years old.

Mon, June 17, 2013 @ 4:11 PM

291. Pam wrote:
A full and complete evaluation of iron storage includes the following tests:
Serum Iron, Serum Ferritin, and a Total Iron Binding Capacity. From these numbers a Transferrin Saturation % is calculated. These tests are explained more fully on the helpful forms and charts available on this website. I recommend you print them off, review with your doctor and make note of YOUR levels and compare to the charts. If your levels compared to the charts are outside of the norms, you MAY have an iron storage disorder, requiring treatment. An evaluation WITHOUT all these number is INCOMPLETE. Ferritin at the level you reported is excessive, but it could also indicate inflammation or infection, that is why ALL the other tests referenced are necessary to make a determination. Good luck!

Tue, June 18, 2013 @ 7:14 AM

292. Jorge wrote:
Thank you very much Pam. I have talk with my doctor and after ultrasound I will repeat the test of blood to measure transferrin and other things I couldn´t understand well. At the time I took the test of blood, I had an inflammation in uvula but I don´t know if you mean a generic inflammation in any part of the body or must be specifically located in the liver to give an explanation to the high levels of ferritin. If you could explain me if an inflammation in the mouth could raise ferritin levels I would appreciate it to much (to calm down a bit because I feel I am very worried about it). In any case, my doctor will perform a full evaluation of iron storage. Thank you very much for your help, I feel nervous.

Tue, June 18, 2013 @ 9:02 AM

293. Pam wrote:
You're welcome. From what I understand as a lay person, the inflammation, if that is the cause of an increased ferritin, could be anywhere in the body. As long as you get a complete iron panel completed, not just the tests that were not previously included, a full evaluation should give you a better answer. Try to take it one day at a time. If the high ferritin is indeed due to an iron loading/storage disorder like HH, you are in an area where any potential damage may be reversible. So, just keep on top of it and learn all that you can in the meantime. ...Think positive.

Fri, June 21, 2013 @ 3:36 AM

294. Ezra wrote:
Im a 25 year old man, i recently took blood tests at my gp who told me i mite have haeomchromatosis, i just took another blood test and am waiting on genetic tests or something along those lines. i have stopped taking multivitamines with iron in them although from what i'v read your diet plays only a small role. I am a bodybuilder and take creatine and it has occurred to me that creatine comes from red meat. seeing as red meat is high in iron i am wondering if taking creatine might have an effect on blood test results etc or have a direct influence on something like haemochromatosis. I have tried to look for info on the issue but no such luck as of yet. Could anybody shed any light on the issue for me?

Fri, June 21, 2013 @ 5:21 PM

295. Chuck wrote:
I recently had a blood test and everything was in order except my Ferritin - it was 1300. Now I am scared to death. Going back to last years blood tests I see that it was high last year as well. What can I do?

Sat, June 22, 2013 @ 9:26 PM

296. Dan wrote:
My wife found this site and I'm happy she did. I'm a 65 year old male who had been in very good health. In one year I lost 38 lbs, from 158 to 120. The doctors kept check for cancer.
Finally, they sent me to a neurologist who found strange masses in my spinal column. The blood work he ordered came back at Ferritin 2,963. My primary Dr. freaked out and had me do a liver biopsy, heart and brain MRs, with nothing found.,

I've been doing monthly phlebotomy s at University Med Center in Vegas. After one year, I'm down to 730 ferritin. I did a 20 session Physical Therapy and have begun to walk daily. I do have a Handicapped sticker, but I'm planning to trash it.....soon!

My golf clubs are dusty but I hope to clean them up and use them again. Always hope. The phlebotomy process works. My only issue was my low blood pressure, 90 over 60; so they have to use IVFs before and after.

Still kicking~!

Sun, June 23, 2013 @ 5:51 PM

297. Pam wrote:
Chuck, when you say all the other tests, does this mean you had a complete iron panel? If your blood tests did NOT incorporate ALL the necessary components that make up that iron panel, then you need to return to your doc pronto and take a copy of the forms/charts with you avail on this website and get a complete eval. Since ferritin can elevate in the face of inflammation or infection anywhere in the body it is important to rule that out. As a general rule anything over 1000 is danger and warrants a visit with a hematologist for phlebotomy treatment. In the meantime, if not precluded for some other health reason for giving blood, go make a donation TODAY. Dan, I would think more frequent phlebotomy would be warranted of course assuming your bp maintains and hematocrit/hgb are within range. It is always beneficial to hydrate well before a phlebotomy. All the best.

Mon, June 24, 2013 @ 4:02 AM

298. Chuck wrote:
Thanks Pam. I did not do a complete iron panel. I meant that all of my other tests were in line - heboglobin, Some of the tests were in the iron panel but not all (saturation was not). I gave blood yesterday and felt pretty good today. I will go back to my doctor and keep checking. Thanks for the positive words Dan. I walked twice this past weekend. Tired and soar but I'm out there!

Mon, June 24, 2013 @ 4:00 PM

299. Pam wrote:
TS% is a MANUAL calculation. If you have a serum iron, a serum ferritin and a total iron binding capacity, you can do the calc yourself. Here's the reference:
http://www.irondisorders.org/Websites/idi/files/Content/854256/IOA%20ALL%202011.pdf. These charts are fabulous and professional to give to a physician. If your TS% is above the norm and the ferritin is above the norm then phlebotomy treatment would seem warranted on a regular basis according to the protocols published here, to reach a goal of 20-50 on the ferritin, assuming infection and inflammation have been ruled out. Good luck!

Mon, June 24, 2013 @ 6:59 PM

300. Liz wrote:
My father died earlier this year 3 mths after being diagnosed with liver cancer (we're in the UK). He had HH and as it went undiagnosed for many years; he also had cirrhosis. Although he went for regular phlebs and was under a consultant, they did not check his alpha ferritin protein levels or periodically complete ultrasounds. At time of diagnosis his AFP was 2000 (should be 10) and he had a 9cm tumour - all too late when it was found (which we identified because we paid for a private ultrasound as we couldn't get the consultant to accept what we were telling them I.e. Dad was unwell). Dad was badly let down.

Having learnt so much about HH in the past few months, I have tried to explore the possibility of HH as a possible diagnosis for me to little avail. I've had significant chronic fatigue and severe joint pain in hands and feet part way up arms and legs now too) for the past few years. I spend a lot of my weekend in bed trying resting to try and help me get through the working week. Armed with information I managed to get the doc to send for SF and ST. SF 273 (which I know isn't bad - I'm 48) but the lab wldnt do ST as it wasn't necessary as my SF was below 300. I was referred to a rheumatologist - tests fine for this but he diagnosed me with fibromyalgia with chronic fatigue. I tried to discuss HH but he forcefully told me that wasn't my problem. I felt he wasn't interested and was determined to diagnose fibro.

I've an identical twin who has a range of other symptoms and she's just had a genetic test (her consultant listened!) which has confirmed we are compound heterozygous (one 282 gene and one 63). I know there is a lesser risk of iron overload with this mutation.

Does anyone know if my symptoms could be caused by HH and if they'd agree to take blood if my symptoms would reduce please? (I realise any opinion is non professional). Any help would be appreciated as my quality of life is poor. Thanks

Sun, July 7, 2013 @ 2:31 AM

301. Pam wrote:
Is it possible your sister's consultant could/would consult yours? The genetic tests only show if the genes are present; not if one is/is not loaded on iron. Just because your twin is C/H does NOT mean you are too, but the possibility is there. The Serum Ferritin can be an early indicator of loading, but it can ALSO reflect infection or inflammation in the body. If I were you, I would get myself a copy of all the labs that both your general doctor and the rheumatologist ran to be sure they ruled these other things out, then I would ask the general doctor to go back to the lab due to family history. If your SF is indicative of iron loading, it appears early, could you not go to a local blood bank and donate a pint (your ferritin will only go down 20-30 mls with each donation or phlebotomy)? See if the doctor's will accept the guidelines of the IDI (even though US based). The Trans. Sat. % is a manual calculation taking the serum iron, serum ferritin and TIBC into account. It doesn't sound like your doctor ran the FULL iron panel and that may explain why they wouldn't do the TS% because they didn't have all they needed with what the dr. ordered. Good luck!

Sun, July 7, 2013 @ 1:17 PM

302. wrote:
I am a 61 year old Irish male and I live in the UK. I was diagnosed with type 1 diabetes in May 2012. I am now insulin dependent and inject myself 5 times a day. In December 2012 I was diagnosed with hemochromatosis. I am homozygous for the C282Y mutation in the HFE gene.

I have been having weekly phlebotomies since January 2013. My transferrin saturation is at 88% and Ferritin is 5430. It was 7,120 when I was first diagnosed. I had a liver biopsy a few weeks ago. There are many warnings on the Internet that this procedure hurts. One person described it as "like being kicked in the ribs by a horse" but I only experienced a very mild discomfort. The doctor used sonar to find the site for the biopsy. Perhaps that made a difference. The biopsy revealed "a marked iron deposition at grade 4" and cirrhosis.

The symptoms of hemochromatosis are usually listed as:

1. Chronic fatigue.
2. Loss of drive (libido) or impotence.
3. Abdominal pain.
4. Arthritis.
5. Depression, disorientation, or memory problems.
6. Early menopause.
7. Abnormal pigmentation of the skin, making it look bronze.
8. Thyroid deficiency.
9. Damage to the adrenal gland.
10. Liver disease, including an enlarged liver, cirrhosis, cancer, and liver failure.
11. Damage to the pancreas, possibly causing diabetes.

I suffer from 1, 10 and 11 but I'm not affected by the other symptoms listed. Despite my cirrhosis, on the whole I feel healthy and have continued to work as normal. I am on a self-imposed low carbohydrate diet and gave up drinking alcohol a few years ago, although it has never caused me any problems I am aware of. My family and friends have remarked on how well I look. Only my wife knows how tired I am all the time. I try to maintain a positive attitude and I believe this works. I have been told that cirrhosis will shorten my life but I am hoping to buck the trend. I want to see my granddaughter go to university and as she is only 9 years old I need to live for at least another 9 or 10 years. I will be happy with another 20 years!

I like to understand how my body works but have been unable to find out how hemochromatosis causes fatigue. I would like to know what the mechanism for this is. I am going to ask the hepatologist when I see her next month but if anyone has any information on this in the meantime I would be very grateful.

I've had my share of doctors who are ignorant of hemochromatosis and had to wait until I was 60 before I was diagnosed. One doctor referred me to psychotherapy but after an assessment session I was told it wasn't suitable for me. How rare is that! The psychotherapist had dealt with others with my condition and knew enough to realise that I needed phlebotomy instead. My current GP is very good and I am now being treated very well.

I wish all my fellow sufferers the best of luck. Don't despair. Life is too good to waste on negative thoughts.

Wed, July 24, 2013 @ 7:42 PM

303. Liz wrote:
Dear 302 - I wish you well and at least you have a diagnosis now so things should improve. My Father (alao in the UK) had Cirrhosis as he went undiagnosed for many years. Just ensure that they do periodic ultra sounds to check for any growths on your liver and that your alpha ferritin protein is checked (yearly would be wise). This would pick up anything more sinister and if picked up early they can hopefully sort. Although you have Cirrhosis this doesn't mean you will get anything more sinister but you have an increased risk.

Best wishes

Mon, July 29, 2013 @ 7:25 PM

304. Christine wrote:
I was diagnosed with HH last fall. The treatment they gave me was infusions of Desferal. I went once a week for 6 weeks, Then another 6 weeks after that to get my ferriten levels down. My Ferriten levels were low compared to what I have read here.
I am 47 yrs old. female, not menopausal yet.
My recent ferriten level is 217. My Iron saturation is at 87%. Insurance no longer covers the infusions and I will be getting my 1st flobotomy in less than 2 days. Then I am scheduled for 2 more, then bloodwork to see how the levels are.
Dr. said the flobotomy will take out the iron quicker. I only weigh about 100 lbs and am 5ft tall. So I am a little nervous about it. I gave blood years ago and didn't do so well and they said I probably shouldn't donate. It took long to get the blood out. Plus You have to weigh at least 110 lbs to donate, which I was more than that at that time. I think that is why I am nervous because of my low weight. I can't seem to gain much weight. I get up to 104 then back down to 99 lbs.
But from the levels I read here I don't feel too worried about the Iron levels I have, But my saturation level is high.
Do you think I have anything to worry about?

Wed, August 7, 2013 @ 1:32 AM

305. Christine wrote:
Forget the Flobotomy I was supposed to get today. My hematologist was arrested Tuesday...

Thu, August 8, 2013 @ 6:29 PM

306. Pam wrote:
Sorry to hear that! Your sat level, the way I understand it (non-professionally), is indicative of your PROPENSITY to load, which IS quite high, but your Ferritin is NOT that bad per what you've stated. So, call the Dr. that referred you to this one, and ask for another referral right away! Or, seek it out on your own! Hope you find a new doctor quickly. All the best!

Fri, August 9, 2013 @ 4:37 AM

307. Christine wrote:
thanks for the response. I am going to do that right away.

Sat, August 10, 2013 @ 2:59 AM

308. Pam wrote:
You're welcome!

Mon, August 12, 2013 @ 3:58 AM

309. Paul wrote:
I found out about two years ago that I have HH. My ferratin levels are >3000 and I have extreme fatigue and muscle weakness. I was getting weekly phlebotomies, but got a new job and there was no way I could keep it up every week. The phlebotomies just added to my fatigue and doctors offered no relief. Is there anyone that has had a doctor prescribe anything to help with this. I feel like sleeping all day, can't focus at work, even have fallen asleep there. I don't know what to do and depression is really setting in.

Mon, August 12, 2013 @ 8:04 PM

310. Pam wrote:
Unfortunately, none that I am aware of (non-professionally). The ONLY WAY OUT of this, as I understand it, is to get the EXTRA iron out ASAP. Considering YOUR level, ask YOUR HEMATOLOGIST if YOU qualify for Double Red Cell Apherisis treatment (DO A SEARCH OF IT HERE). It is similar to a phlebotomy, but it removes TWICE the amount of red blood cells (compared to a regular phlebotomy=just ONE unit of blood that the iron attaches to), and returns the OTHER components (plasma and white cells) back to your body. Maybe a few of these treatments will get you out of the danger zone quicker AND get you to feeling better sooner. If not already done, I would also consult a cardiologist and a gastroenterologist with a special interest in Hepatology (Study of the liver). Best wishes for feeling better soon.

Wed, August 14, 2013 @ 8:05 AM

311. John G. wrote:
I just wanted to add a comment about the center I go to for phlebotomies. For anyone looking in Virginia, Virginia Blood Services has a great program for people needing theraputic phlebotomies. Very nice people and convenient to the central VA area. I drive 60 miles each way but its worth it. I have been going every two weeks (14 times), ferritin down to 55 from 900 and TS% down to 13% from 78%.

Thu, August 15, 2013 @ 2:09 PM

312. Carrie wrote:
I had my iron levels tested and it was 297. My ferritin was 50. I'm a 34 year old female. My dr said there is no need to do phlebotomies at this point since my ferritin levels are normal. Genetic testing results were that I am a carrier meaning I have one gene. The only symptom I'm having is hair loss. I had my gallbladder removed about 2 months ago due to low function since then i e lost 20 pounds which worries me. It makes me wonder if losing my gallbladder has something to do with it. I'm also on thyroid medication but my thyroid levels are stable. Should I be concerned and be doing phlebotomies even though my dr told me it wasn't necessary? I don't want damage done where its too late to fix it! Anybody have a similar experience?

Fri, August 16, 2013 @ 7:43 PM

313. Kevin wrote:
I was diagnosed with RA a year and a half ago, the doctor told me he would be the last doctor I would have to see to take care of my problem. He prescribed biologic injectable drugs,methotrexate ,prednisone ,we tried several different kinds of biologic drugs, none worked he just kept upping my prednisone dose, 60 mg daily. Went to see a gastroenterologist due to elevated liver function numbers, the Gastro did a couple of blood tests and diagnosed me with HH, C282Y x2. Ferritin serum 3980. February 2013 I was struggling just to walk, my joints all ached, were swollen and inflamed. I started phlebotomies in March 2013, 500 ml weekly, ferritin has gone down to 1580. Just started phlebotomies twice weekly , 500mlx2 weekly. I am hopeful we can get the ferritin level under 1000 shortly. I got rid of the first rheumatologist and found one who understands hemochromatosis . I still have swelling and pain in my joints, I cannot work like I used to, we'll wait and see If I get well enough to work. I have filled for social security disability, at 60 years old I'm hopeful they will give me my benefits . This has been a long fight to try and get better.

Sat, August 17, 2013 @ 7:01 PM

314. Kevin wrote:
I was diagnosed with RA a year and a half ago, the doctor told me he would be the last doctor I would have to see to take care of my problem. He prescribed biologic injectable drugs,methotrexate ,prednisone ,we tried several different kinds of biologic drugs, none worked he just kept upping my prednisone dose, 60 mg daily. Went to see a gastroenterologist due to elevated liver function numbers, the Gastro did a couple of blood tests and diagnosed me with HH, C282Y x2. Ferritin serum 3980. February 2013 I was struggling just to walk, my joints all ached, were swollen and inflamed. I started phlebotomies in March 2013, 500 ml weekly, ferritin has gone down to 1580. Just started phlebotomies twice weekly , 500mlx2 weekly. I am hopeful we can get the ferritin level under 1000 shortly. I got rid of the first rheumatologist and found one who understands hemochromatosis . I still have swelling and pain in my joints, I cannot work like I used to, we'll wait and see If I get well enough to work. I have filled for social security disability, at 60 years old I'm hopeful they will give me my benefits . This has been a long fight to try and get better.

Sat, August 17, 2013 @ 7:04 PM

315. cc wrote:
Hi recently found out my iron level was 255 they said was high.I am 26 years old and have been battleing thyroid and stohmic problems for years now.The doc said iron was high but didn't tell me anything about why or whay I could do to lower it.I have also been having pain in my rib cage like something is stuck and I tell my doc and she seems to brusb me off any advice?

Fri, August 30, 2013 @ 1:27 AM

316. Pam wrote:
You do not mention whether your "iron level" is a "Serum" aka "circulating iron in the blood" vs. "Ferritin" aka "storage iron." I would recommend (non-professionally) that you obtain a complete iron panel, for a clear picture of your iron status. If your "storage iron" aka Ferritin is elevated, it COULD be indicative of an Iron Loading Disorder, but NOT necessarily so. Ask your Dr. to follow the guidelines of the IDI in making their determination. I recommend you familiarize yourself with all the different iron disorders and go from there. All the best.

Mon, September 2, 2013 @ 5:43 AM

317. Nicole wrote:
Hi! I have HH; it is under control now. Just wanted to share a tip for successful blood donation: drink a lot of water/sports drinks/juice the day before and the day of. Avoid alcohol, because it dehydrates. At first, it was almost impossible to hit my veins, the flow was slow, and the blood would clot. Now I drink 6-7 quarts of hydrating fluids the day before and the day of donating, and it's successful almost every time. All the fluid seems to raise my blood pressure. They say BP has no bearing on whether the phlebotomy is successful. Success depends on the volume of blood, which is why hydrating helps so much. Do be careful though. I over-did it and drank too much fluid a couple times and got a whopper of a headache and tunnel vision. Don't go that far! Kidneys can process up to one liter per hour; do not go over that. No alcohol for 4 days before + lots of fluids day before and day of = successful blood donating.

Tue, September 3, 2013 @ 9:25 PM

318. Eric wrote:
Hi my name is Eric. I was diagnosed 2 years with Hemochromatosis. My Ferritin level was 1126. After 1 year of phlebotomies my Ferritin level was 158. I stopped my phlebotomies and 3 months later I was 108 and then dropped to 46. It is like my body is now regulating my iron. Im stage 4 fibrosis and am on a transplant list. I have been tapped one time and have been hospitalized 3 times with infections. I cant drive or work do to my fatigue. I have sleep apnea, diabetes, DJD (degenerative joint disorder) , my finger nails look like I have been hitting them with a hammer My joint pain is to the point of effecting quality life. My libido is dead, my ability to perform is gone. Im on 2 narcotic pain meds Opana (that is a oxy morphine) and Oxycodone. They help some but the only thing that work good is Medical Marijuana. I would gladly give up my opiates for MMJ. The problem is if the transplant center finds out they will kick me off the the list. Checking with Unos the chances of getting a liver and not experience immediate rejection are 1 in 4. Right now my meld score is very low 9 at the high point was 14. I have taken a very active roll in my treatment. I just feel so hopeless. Like Im waiting around to get sicker or get Liver cancer which would move me to the top of the list. The only thing keeping me here is my Relationship with my Lord and God and my amazing wife of 28 years. Any Ideas on how to improve my situation would great. Thank you.

Wed, September 11, 2013 @ 4:35 PM

319. Eric wrote:
This comment is for the person who wrote 315cc. I don't know your condition, but right now I'm having pain in my ribcage do to ascites. Fluid fills my low abdomen and pushes up on my diaphragm causing me to look like I'm pregnant. This in turn pushes on my lower ribs or floating ribs. This is causing me trouble breathing and pain in my rib cage. Try to lay on your back and see if this helps. If does diuretics or parenthesis (tap to remove extra fluid) If you juice try celery this is a natural diuretic. Most important is go to a good doctor. If your not getting answers go to a different doctor. The person who cares most about your life is YOU

Wed, September 11, 2013 @ 5:30 PM

320. John wrote:
Paul- I'm not sure on your situation, but have you tried a B-Complex? Anemia can still happen in the face of high iron, due to a lack of B6, B12 or folate. Your body needs all of those to make hemoglobin, so maybe it's low hemoglobin that is making you so tired. YOu maybe want to have other vitamins and minerals tested (like zinc), I'm sure phlebotomy could deplete nutrients other than iron as well.

As for getting iron out quicker, Double Red Cell Apherisis does double the amount taken out. You may also want to look into IP6. There is debate as to whether it chelates iron from the body, but it does impair absorption, so whatever mechanism, it can help you get your ferritin down quicker.

Fri, September 13, 2013 @ 9:57 AM

321. brandi wrote:
I am sitting in hospital with a 23 year old who is having heart failure. Said to have a heqrt of a 76 year old man right now and i cant seemto get a dictor till morning to perform this test for iron overload. Im at montclair doctors hospital 12:55 am help.please

Thu, September 19, 2013 @ 2:54 AM

322. brandi wrote:
I am completely discusted with the willingness of staff to even look at his chart being told tbey have not had time to even see why he is here however has administered medication which made his breathing much worse and he cannot sleep without periods of not breathing. I believe they need to see if he has excessive iron levels how do i get a doctor to come into his room to order the test

Thu, September 19, 2013 @ 2:58 AM

323. Anne wrote:
My daughter has severe aplastic anemia (bone marrow failure) and had iron overload from red blood transfusions every 14 days. She has had success with fresh wheatgrass juice:
1 oz wheatgrass daily for 6 months was more effective than prescription drug for iron chelation:
Posting for those who cannot blood let or want to add another iron reduction method.

Sat, September 21, 2013 @ 12:18 AM

324. John wrote:
Hello Everyone,

I just wanted to mention that Chris Kresser gave an excellent presentation about Iron Overload in 2012, and just recently posted it online in video form. I don't know the policy of posting direct links in this forum, so you can search for Chris Kresser's Iron Behaving Badly and you find the presentation. I will post the link in a seperate comment, in case it gets moderated out for some reason. It's a little over 35 minutes long.

Mon, September 23, 2013 @ 9:54 AM

325. John wrote:
Here is the direct link to Chris Kresser's Iron Behaving Badly-


Mon, September 23, 2013 @ 9:55 AM

326. Kathleen wrote:
I have been struggling to find answers to my ongoing health issues. I am 42 and am a carrier for C282Y and have Hemoglobin Olympia. I have had these two diseases in my life since I was 8 years old , when my father was diagnosed, and am well aware of the symptoms, treatment, and damage they can create. I also have Multiple Sclerosi and had a hysterectomy in 2007. I have had 2 phlebotomies- March 12th and March 26th. I had my gallbladder removed on August 16th. My gastroenterologist and my hemotologist have far differnt view points on phlebotomies....GI wants me to and the Hematologist does not feel I need to because my Ferritin is fine.

My current bloodwork: (prior to phlebotomy)
Serum Iron 211
TIBC 208
TS % 101
Ferritin 73.

My level on March 27, 2013 (after phlebotomy)
Serum Iron 176
TIBC 213
TS% 83
Ferritin 111

My levels on March 7, 2013: (prior to phlebotomy)
Serum Iron 143
TIBC 199
TS% 72
Ferritin 130

My levels are starting to really concern me, especially since i am getting conflicting medical advice. I would appreciate advice. I'm beginning to think that maybe i am having differnt iron issues that I am not aware of. Is that a possibility, as well? If so, what tests should i be having?

Thank you for your insight!

Wed, October 9, 2013 @ 1:08 PM

327. John wrote:
I certainly think you are right to be concerned. Couple of things-

Did you fast for 10-12 hours before your iron panel? Eating doesn't really affect ferritin, but it does affect serum iron and therefore TS%, kinda like how blood glucose goes up and then returns to normal in the hours after eating carbs, and least in the non-diabetic population. If you had just eaten, you might just be seeing a normal TS% spike that would have normalized in a few hours.

Second, your recent panel has TS% at 101 percent. That doesn't make sense. It could be that the lab screwed up, and mistook UIBC for TIBC. TS% is a calulation, not a direct test. If it is right, however, that means that iron is floating around in your body unbound to carrier protiens. That's not good! Iron is highly reactive, and unbound iron in the body can be very damaging!

I certainly think you should get re-tested, and use a different lab if possible. Make sure you fast before your panel. Make sure your iron panel is right first.

A high TS% is still a problem that you need to address, even if your ferritin is realatively low or normal, such as yours is. Phlebotomy can still be used, but you may also want to look into treatment with lactoferrin or transferin. The fact that your TSAT is going up while ferritin is going down either suggests lab error, or some other issue at play. You probably want to dig deeper on this.

Thu, October 10, 2013 @ 10:14 AM

328. Kathleen wrote:
Thank you for your response. Yes, I had my labs done after fasting. My hemotologist had me redo my labs on Wednesday, as he felt it could be a lab error, as well. The results should be posted on my echart later this week. I made sure that I went to my appointment having fasted, because I figured he'd run more tests. All of this is freightening me, because he just doesn't seem to be concerned that my TS is high. He feels that it is "impressive", though. He's only looks at the fact that my ferritin is ok. I just feel so ill. I asked him to forget about the fact that I have been diagnosed with hemochromatosis & hemoglobin olympia....look at my results and what would you think & what would you do if someone walked into your office with these levels? I think he heard me. I don't have many options for providers in my area, so I need to get somewhere else for help. I went online and found a Hemotologist that specializes in Hemochromatosis at the university a few hours away. I've been researching my lab results and trying to see if there is any information i can find that may point me in the right direction. I'm leaning towards a couple disorders that it looks like.....I just want someone to listen before it's too late.

Thu, October 10, 2013 @ 5:42 PM

329. John wrote:
One other thing... having the gene mutation doesn't disqualify you from simply donating at a blood bank. Don't know about Hemoglobin Olympia or MS. If they don't, you could simply try donating at the Red Cross or a local hospital. Blood Donation is exactly the same as a phlebotomy, at least for the donor.

Lactoferrin can be purchased at a health food store such as GNC. As can IP6, which seems to help in lowering ferritin, so could help you out as well.

The Hemotologist who specializes in Hemochromatosis is probably your best bet, since your case seems unique. The fact that tsat went up after phlebotomy while ferritin went down seems especially troubling, if accurate. Maybe your body is having problems making transferrin?

Thu, October 10, 2013 @ 9:11 PM

330. Kathleen wrote:
Thanks for taking the time to respond, John. I appreciate your kindness. I'm not allowed to donate blood in our State. I have decided to wait to see what my new lab results are and go from there. He also checked my hormone levels to see if anything I'm feeling can be attributed to low levels. I told him to go ahead and check....doesn't change the fact that my bloodwork is bad. Have a wonderful weekend.

Fri, October 11, 2013 @ 6:34 AM

331. sabra niles wrote:
hair loss on my head has been a big problem. i have read about other women that have had loss as well.... The question is, will my hair grow back after my iron level is lower/normal?

Thu, October 24, 2013 @ 12:04 PM

332. Martina wrote:
I would like to ask you question referring to iron level in the blood.
My mother has had recently big problems with very strong migraines, so she underwent some comprehensive tests including blood screening with subsequent results:
- iron bounded - 8,2
- iron free - 74,4
- hemoglobin 116
- transferin saturation - 0,1
She has enough of iron in the body, but it is not able to bind neither to hemoglobin nor to transferin. And since the hemoglobin is responsible for oxygen transfer across the body, the lack of oxygen in brain may cause the migraine. She is taking regularly only digestixe enzymes because of pancreatic disorder. I read somewhere, that the enzymes may cause megaloblastic anemia because they decrease folic acid level. I suspect these two facts are somehow connected. Have you experienced similar situation? Or could you advice us something?
Thank you very much for any answers.

Sat, November 23, 2013 @ 12:34 PM

333. nancy wrote:
Feeling bad lately and last week got a blood test done and showed iron slightly high at 197 saturation 51% alt 29 everything else was normal. been eating alot of spinach lately daily for lunch should I be concerned?

Tue, November 26, 2013 @ 8:52 PM

334. Jenny wrote:
Hi all,

I was lucky enough to stumble across this blog... thank you to everyone that has shared their stories, I'm learning a lot from them :-)

I'm 35 and have had a series of blood tests recently. The results so far show high ferritin and high iron, but normal haemoglobin. My liver enzymes are slightly raised. I'm afraid I don't yet have the figures to share as I completely forgot to ask for them! Talking of forgetfulness, my memory and concentration levels have been awful over the last 5 weeks or so. I was diagnosed with Attention Deficit Disorder a few years back so the further decline in my cognitive abilities has made life much more difficult. I noticed my recent deterioration in health around 5 weeks ago which began with a day of extreme forgetfulness and mental confusion. I went out on my usual bike ride and had to turn back after a few miles as I was exhausted (I'd previously built up my fitness to cycle 30 miles fairly easily). I've been exhausted ever since and my mental cognition difficulties have continued. I've had slowly worsening joint problems for the past few years and have started waking up feeling a bit stiff and my joints get stiff and painful if I'm in the same position for too long. If I'm standing for a while, like when I'm cooking, my knees get stiff and painful and sometimes swell up. I've recently developed a rash across my face (nose and cheeks) which got quite sore but just looks blotchy and red now and my face looks quite flushed - not a good look ;-) This could be completely unrelated to my test results and may just be a result of the recent weather change (it's turned quite cold here in the UK). Other symptoms include tinnitus, occasional night sweats and mood swings.

Could this be Hemochromotosis? Or does anyone think this could be something else? I'd be very grateful to here any opinions. My doctor hasn't received all of my test results back yet, so she was unable to offer much detail about the underlying cause of my high iron and ferritin, so I might have a better idea when we get those back. I will also get a copy of the test results so I know what I'm working with. She was however, happy to refer me to see a specialist at this stage even though the other test results aren't back yet, so my ferritin and iron levels must be pretty high. I've probably missed a few things as my head is fuzzy, but think I've covered the majority.

Thanks and best wishes everyone :-)


Thu, November 28, 2013 @ 2:03 PM

335. Nicole wrote:
Hi Jen,

You don't have the have HH to give blood. Go ahead and donate every 8 weeks or whatever frequency is allowed in the UK. Mark the calendar, since you'll want to let the specialist know how many times you've donated and when, as it will affect your levels.

The sudden onset of accute symptoms you mention sounds like something else to me. HH usually has slow onset of symptoms, sometimes imperceptible. I'd suspect allergies. What changed in your diet 5-6 weeks ago? Soy/Lecithin makes my joints hurt. A friend of mine had brain fog from the sweetener Stevia. Try to think of what changed in your diet. (Ask a friend to help remind you if you have trouble remembering.) Remove the new things, and see if symptoms go away. Be patient, it may take a week to get it out of your system.

Feel free to go ahead and donate blood anyway. It will help to reduce high iron.

Best Regards and Hope you feel better soon,

Mon, December 2, 2013 @ 10:59 AM

336. Diane Pollak wrote:
I have one gene of HH being considered a carrier. But, I too have ferritin levels between 200-400. All other iron tests were fine. I was just diagnosed with Fibromyalgia because of the joint pain, etc. I have an enlarged liver and med high liver enzyme counts. Oh, am also diabetic. Which brings me to my question. I read the "Hemochromatosis Cookbook". Most of the recipes use coffee or tea because of the "tannins". But, I read only one sentence referring to the fact that Diabetics should not use or overload on tannins. Does anyone know why this is? The book did not explain this comment.

Also, my rheumatologist told me to start to eat like my grandmother did. Organic and natural foods. As packaged foods contain fortified iron.

My hematologist/oncologist tole me to basically only eat beans and vegetables. Nothing white, NO Bananas & Pineapple (because they are high fructose fruits) No potatoes, pasta, and of course beef. Limit or avoid chicken and fish. But, I can occassionally have brown rice.
P.S. - SUGAR promotes Iron absorption. Also to donate blood.

Anyway, on another note: Anyone with Fibromyalgia should avoid these 7 foods: Aspertame (Nutrasweet: It overdrives the nervous system), Soy protein (But, CAN HAVE: Soy Lecitan), dairy (cassein) Get: Ghee (clarified butter), Sugar fructuse & simple carbs, MSG (Found in Chinese Food, and is a flavor enhancer in products off the shelf, Ex: Doritos, potato chips, etc.), Gluten (Found in wheat, barley, and rye products - Can have oat products) and last is Caffein.

I tried this: It is not east. I cound not sustain this for long. But, when I did, my joint pain did lesson and at times subside for awhile. Good Luck to all, wishing all well, and considering the season, Wishing all a wonderful holiday season

Sincerely, Diane

Sun, December 8, 2013 @ 9:57 AM

337. Diane Pollak wrote:
To Continue:

P.S. - I wish to explain the correlation between HH and my fibromyalgia.

I was diagnosed with Fibro and not HH as of yet. But probably will be.

I have the joiint pain with the (FM). But after reading others comments, maybe I do not have FM, but HH (since many of you with HH do have the joint pain) The symptoms are similar.
But, I could be wrong.

Any input on this. Thanks for your help.

Sun, December 8, 2013 @ 10:06 AM

338. Diane Pollak wrote:
Hello Nancy,

Sorry you are not feeling well. About eating alot of spinach.
My hematologist/oncologist told me that spinach does have iron, but it is the Non-Heme kind, and your body doesn't really absorb the iron in vegetables. Do some research on Heme and Non-Heme iron.

Also, Vitamin C (ascorbic acid) promotes iron absorption. I was also told not to have an orange withing 2 hours before or after consuming salads, etc. This is confusing because I also read that only the vitamin C is the problem, but not the C from fruit or veggies.

Can anyone out there clarify this?

Take care,

Sun, December 8, 2013 @ 11:14 AM

339. Terry wrote:
Hello.. I'm brand new to this website.. I am a male 40 yrs old 6'2" 155Lbs.. have been so tired and dropped off the social map for the last 3 years.. have hashimotos, low testosterone and recently got iron tested.. 72% saturation, with ferritin of 334. iron serum 187 (high) and UIBC 73 (low).. also liver not lookin too good - AST 41 (just a little high?) and ALT 77 (seems a lot high).. Took HHC test and tested negative for HHC - tested C282Y, H63D & S65C mutations and no mutation was identified.. so does that mean it's not HHC? Do I still need phlebotomies? I have no idea where to go from here.. no idea what to eat or drink either because of conflicting info.. I see we don't eat seafood or drink alcohol, but everything else I have not figured out.. one website says coffee helps block iron.. another says no coffee.. ugh. If someone can point me in the right direction I would be very thankful.


Tue, December 10, 2013 @ 7:44 PM

340. gull wrote:
i am 25 years old my iron 216ug/dl i want to know about it .

Mon, December 16, 2013 @ 4:06 AM

341. Dave wrote:
Hi Terry,

I would recommend that you ask your primary care doctor to try out a a couple of rounds of blood donation by prescription and a referral to a liver specialist. You dont have to test positive for the genetic markers to have the symptoms. The blood donation should have an immediate impact on your general well being. It is a process. Keep with it and be insistent No one knows your health better than you do.

Sat, December 28, 2013 @ 11:08 PM

342. John wrote:

Looks like you have a fair amount going on. Here's what I would do if I were you-

Hashimotos is probably the first thing. I would fix that first. You're probably gonna want to find a good thyroid doc. From what I hear, you want to avoid endocronologists. Check out a site like stop the thyroid madness. Lots of patients swear by Natural Dessicated Thyroid (which I do think is better in general), but for hashimotos, the synthetics might be better. If you go with the synthetics, ask about getting T3 (like cytomel) along with T4. Also, look into removing gluten from your diet.

Low Testosterone also sucks. FIrst, if you carry your cell phone in your pocket, stop that IMMEDIATELY. The radio signals that cell phones use has been shown to kill sperm in vitro, so that can't be helping your testosterone. Avoid both soy and beer, as both have phytochemicals that mimic estrogen (and soy is no good for the thyroid, either). Look into foods that boost testosterone, things like meat, eggs, avocados, brocolli and cheese (although dairy could be problematic for you as well). The Art of Maniliness did a great series on testosterone, and boosting it thru diet and exercise. You also might wanna check out zinc and Tribulus. You could also try Testosterone replacement and HCG, but those are prescriptions, and come with their own set of problems.

Lastly is your iron. It's certainly high, and I think you wanna lower it, but it's not the main problem. If you are eligible to donate blood, start doing that. Three or Four donations will get it to a better level. If you can't, also ask about presciption plebotomies. Other than that, I would just do some diet tweaks- avoid using cast iron cookware, avoid iron supplements and iron fortified foods (like cereals and breads, which tend to have gluten anyway), don't take vitamin C with meals (away from meals is fine), use tannin rich olive oil (also good for testosterone), and drink tannin rich bevarges like coffee, tea, or red wine with meat meals(to inhibit iron absobtion). Personally, I think meat is too nutrient dense and important for testosterone to drastically limit or eliminate.

I acutally had a ferritin of 440, and am keeping it between 50-100 now with blood donation (took about 6 donations to get it down). I am doing some Dessicated Thyroid to boost my thyroid function, and am working at boosting testosterone through the things I described, so I do understand some of the things you're dealing with.

Fri, January 24, 2014 @ 10:06 AM

343. kym wrote:
I just received word from my GP that my lab results Camden back with a ferritin level of 350 and a positive genetic test for H63D. My rather passed away from HH three years ago. I was tested at that time and I recall my levels were fine and I thought I was in the clear.
I have an appointment with a hematologist in three weeks. I have struggled with upper right quadrant pain for several years and have been in Ghent ER for gallbladder scan and liver scan. Liver enzymes have been off in past labs.
I'm wondering if they will address ferritin level of just 350. I am a 44 year old female. I had an endometrial ablation seven years ago so no longer have menses. I am anxious to have this addressed and I am still in shock. I watched my father struggle with liver damage and can cancer from HH so I want to be proactive. Thank you.

Sat, January 25, 2014 @ 10:11 PM

344. Deb wrote:
My husband, 57, was recently diagnosed with hemochromatosis. When tested for the hereditary hemochromatosis (HH) mutations, C282Y, H63D & S65C, no mutations were identified. Due to an earlier anemic reaction to a sulfa drug, his hematologist also tested him for G6PD Deficiency - which he does have.

We purchased the book " The Hemochromatosis Cookbook" by Cheryl Garrison. In the back of the book there are testimonials. The one submitted by Art Callahan said that he was diagnosed with an inherited iron-loading condition called G6PD deficiency. I have not found any link yet between G6PD and iron overload, if there is one, we'd like to know if there are different things we should be doing or not doing.

A little more information about his initial tests- his iron levels were normal, his transferrin was normal & his serum ferritin was very high - 2100.

He is modifying his diet and undergoing phlebotomies weekly right now.

If anyone is aware of a link between hemochromatosis & G6PDD, we'd like to learn more.

Sun, January 26, 2014 @ 1:38 PM

345. Katherine wrote:
My iron,serum was 200, yet my doc did not seem to think it was a big deal. I have the disease and need phlebotomy. It is very frustrating when the doctors do not understand the disease and my concerns. I am hoping to find a knowledgeable doctor concerning this issue.

Mon, January 27, 2014 @ 4:19 PM

346. Tony wrote:
Hi ,

I have ferritin levels of over 1200 (tests don't measure higher than 1200) but all of my other iron levels are fine. I was tested for the gene for hemochromatosis but it was negative which ruled out hemochromatosis. An MRI showed Iron Overload which started this whole process. My hematologist. has dismissed the MRI as being misread and believes it is caused by my gall bladder which has to come out.

I am not feeling good about the process. I will be having a liver biopsy but the ferritin levels have been over 1200 for a while now.

Any ideas? comments?

Tue, February 18, 2014 @ 9:31 AM

347. hemoglobin low wrote:
I am 53 male with ferritin 580 sat 61% hemoglobin went from 137 to 132 after 2 phleboyomues in 2 weeks. They did not take more blood because of the 132. How can my Hemoglobin be low when I appear to have high iron. And if phlebotomies are not otion what is your opinion on chlate

Tue, February 18, 2014 @ 7:58 PM

348. Nicole wrote:
Re #347, it takes a little while for your body to remove iron stores and turn them into hemoglobin. 2 phlebs in 2 weeks is fast. I did 1 phleb every 2 weeks. Be patient, give your body time to do what it needs to do.

Sun, March 2, 2014 @ 5:09 PM

349. Nicole wrote:
Hi Kym (343), that is a common problem. Doc runs a test, it's OK, so makes you think you don't have it. But, it's like your cholesterol test coming back OK -- it doesn't mean you'll never get heart disease! That's why the DNA test is important. Your DNA doesn't change. BTW, once you get your iron levels down to normal, you can control somewhat with diet. Vitamin C boosts iron absorbtion; Calcium blocks it. Beef and shellfish are high in heme iron. Breakfast cereals are fortified with extra iron. Maybe do chicken, freshwater fish, and veg instead. Best of luck!

Sun, March 2, 2014 @ 5:23 PM

350. Ryan Brockmeier wrote:
I have had elevated liver enzymes for at least the past 6 years (this was the first time I had ever had them checked) and this year they were the highest they had ever been. My GI recommended that I get a liver biopsy and the results of that show that I have a 3+ out of 4 for iron content. My GI then ran some more blood work to check my total iron, iron binding capacity, % saturation, ferritin, and a DNA test to see if I have hemachromatosis. All the results came back normal and the DNA test was negative for the genetic mutations for hemachromatosis. Does anyone know what should be the next step in determining what I could have? I also have no symptoms and seem to be healthy other than the elevated levels and iron. Thanks for your help!

Wed, March 5, 2014 @ 10:57 AM

351. Brad wrote:
I had high liver enzymes and non specific upper right abdominal pain and waited 18 months on a liver specialist referal with no call back. Finally a locum doctor looked at my file and ordered a bunch of blood tests and a liver ultrasound. My feratin was 3600. Had the genetic tests and came back HH homozygote. I started phlebotomies on a fairly aggressive bi weekly schedule but my hemoglobin dropped to 124 so they would not give me the third, I had it a few days later when I was over 130. I finally saw the heptologist and he saw my low hemoglobin level after two back to back phlebotomies and laughed and said I must be a asymptomatic C282Y/C282Y and not have hemachromatosis as no "high ironer" could drop that low that fast. I pointed out my iron knuckles, low energy, shortness of breath, low libido and the fact that hemoglobin count is more related to how well your body is rebuilding the red blood cells not total iron content. He would not back down and told me to go home and eat a steak! Beware the quack specialist with little knowledge! I have cut my phlebotomies back to once/week and am coming in at around 135 each week and have got an appointment with a hematologist instead.

Mon, March 10, 2014 @ 11:52 PM

352. hemoglobin low wrote:
what is the difference between h63d and C282Y

Wed, March 12, 2014 @ 5:52 PM

353. Pam wrote:
They are just different genes that seem to sometimes play a role in iron loading in Hemochromatosis The C282y mutation is the one thought to be most troublesome especially when one carries two defective copies of it.

Thu, March 13, 2014 @ 11:53 AM

354. Colin wrote:
I was diagnosed as a carrier & had levels around 700.Previous to diagnosis I had 3 attacks that mimicked a heart attack approx. 18 months apart. After diagnosis & lower iron I have not had an attack since, does anyone know if there is any correlation?

Fri, March 21, 2014 @ 1:43 AM

355. Ray wrote:
Hi everyone,

This is, without a doubt, the most informative and supportive ferritin/Iron overload site I have found.

I am a 39 year old male...
While studying for the BAR exam, I was experiencing mid day fatigue, joint pain, heart palpitations. I figured it was anxiety about the exam. My doc did a panel of blood work just in case and noticed my ferritin was at 443. He said not to worry too much and keep studying. 6 weeks later, after the exam, I had it tested two more times: 381, and now 412. We are still waiting for the hemochromatosis test results.

My sister has lupus; my mother has Graves; my father died of a heart attack at 41. Needless to say, with my family history, it feels like the wagons are circling. I have felt so "off" the last 3 or 4 years. So, of course I am now wondering if this has been it all along. Whatever "this" means. I'm very confused. I want to know what an elevated ferritin level but a negative hemochromatosis test would mean. Would that indicate a possible malignancy? Or perhaps autoimmune, like my mom and sister?

Are my iron levels extremely worrisome or only slightly worrisome? Can a ferritin level of 443 cause organ damage? What if it was at that +400 level for several years? Is 1,000 really the line of demarcation between the safe zone and organ damage? I have been having a week long episode of severe heart palpitations. Last night, I went to the gym after work, picked up a dumbell, was stricken with an intense heart flutter, and left.

If anyone has any feedback, I'd be very grateful. I am in such a panic, I can't concentrate at work.

Thank you so very much.


Tue, April 1, 2014 @ 3:08 PM

356. Stacy Lundblad wrote:
Anyone have burning mouth issues with iron overload. I have suffered with hot and burning on the roof of my mouth as well as the tongue. I have had awful tastes and lots of flem and stickiness. I have felt like I am being poisoned. I react more right after eating foods than ever and have whiteness on tongue as well. I also have fissures in tongue and sometimes it feels like something is inside my tongue and ozzing out. I was just diagnosed with genetic hemochromatosis and am trying to find out what to do for this and will it ever improve> I have begun to take carnitine which has helped alot.
Anyone with mouth issues please respond to me.


Sun, April 6, 2014 @ 7:43 PM

357. Bill wrote:
I started with a ferritin level of about 2700. After nine weekly phlebotomies it dropped to an average of 1275 and has stayed at that level through another nine weekly draws. Serum iron has remained at about 250 throughout the entire time.

Has anyone had a similar experience? Any other comment? Bill

Wed, April 16, 2014 @ 7:54 PM

358. Ray wrote:
Seems like the site has been abandoned... Pam, are you there?

After one blood donation to the Red Cross, my Ferritin dropped from 430 to 314. My doc still can't tell me what this indicates. Autoimmune runs in the family. Does a 100 point drop mean NOT hemochromatosis? I was DNA tested. Positive only for the H63D--homozygote. My joints are killing me and the heart palps continue...

Help! I am so confused!


Fri, April 18, 2014 @ 10:02 AM

359. Bill wrote:

Can't say! I can say that I dropped 1000 points after 3 Phlebotomies. That is 300+ points per draw. Perhaps the drop in ferritin depends on the initial level. (See #357)

For several years I had what I thought was random A-fib. In June 2013 a specialist decided it was A-flutter. I had an ablation and the flutter was stopped. I can't say it was due to high iron. However, in December 2013 they found my ferritin at 2700.

You might visit a heart doctor in addition to the doc you now have. Bill

Sat, April 19, 2014 @ 10:41 PM

360. Pam wrote:
I am NOT affiliated with the IDI and I am NOT a medical professional, but have a background in medical underwriting for the insurance industry. I will share what I know: Ferritin in and of itself while it can be indicative of Hemochromatosis, it can also be representative of an "Acute Phase Reactant". In layman terms, this means that there could be an infection or some type of inflammation in the body. Furthermore, there are many OTHER gene's for HH that are not part of the routine testing and there are also OTHER genes that may play a role in iron loading. I found this board not to be very active, but I re-visit from time-time. There are several Facebook groups you may find of benefit to you and I encourage readers to seek them out. I also encourage readers to READ everything available on this web-site. Take a look at the Physician's Reference Chart. The IDI makes it available for patients to print out and provide to their physicians. Personal experience with a loved one tells me that PRIMARY CARE PHYSICIANS are under educated about this disorder and these charts can help to educate the "under-educated". The chart tells you all about the tests along with OTHER possibilities for OTHER iron disorders. From what I understand, excess Ferritin Levels are harmful, regardless of the cause. I recommend patients ask their doctors to follow the guidelines of the IDI for optimum health. Know your own numbers. The IDI has a partner site at www.hemochromatosis.org and has up-dated charts there. Most doctors do NOT include Iron Panels in their laboratory evaluations and it is felt that FULL iron PANELS are necessary to make proper evaluations. My PERSONAL feelings are that a Ferritin level of between 20-50 for most people is beneficial. With Cardiac involvement, I recommend a cardio consult. For Hemochromatosis or other iron disorders, I recommend consults with Hematology, Diabetes or liver involvement-gastroenterolgy and endocrinology. I don't think there is medical consensus as to what level your organs are damaged, but with the lower ferritin levels and if caught in time, it is possible that damage may be temporary and potentially reversed. All the best.

Sun, April 27, 2014 @ 6:35 AM

361. Graham wrote:
I'm 49 male with celtic ancestry. Did sports all my life and had tons of energy until I reached 45. Since 20 years Ferritin has been above the norm (between 400 and 500). The past 4 years I have had to stop with sports activities, as I had little energy and the regeneration phase leaves me with joint/muscle pain and feeling nauseous for days. I constantly have aching muscles and joints, neck and lower back pain, horrible headaches, memory loss, stomach issues, mostly nausea and digestion problems.
Two years ago they diagnosed high blood pressure, I take meds and have it under control. The past 4 years I had all types of tests (ECG, endoscopy, ultrasound, ENT, etc) and nothing came out except the docs telling me that I was suffering from a psychosomatic problem. I was lost and felt hopeless.
Then a month ago I was diagnosed with HH, ferritin 900, saturation 60%, liver enzymes slightly increased. I have begun phlebs at a two week interval.
However before my symptoms started I decided to do a colon cleanse with a natural product and since this moment it all began.
Has anyone experienced effects of a colon cleanse?
How about any HH sportsmen or women, when you got your HH levels down, could you do your sport thing again like before?
I'm trying to read more about it and diet better but my main fear is that I never get back to sports and enjoying my young family.
I would appreciate any thoughts or advice.

Wed, April 30, 2014 @ 8:17 AM

362. Neen wrote:
Just was diagnosed, should have read this before eating crawfish!!!! Oh my god!!!! No shellfish, I'm from bayou country!!!

Thu, May 1, 2014 @ 1:18 AM

363. Pam wrote:
COOKED shellfish usually is NOT a problem; it is the RAW or undercooked shellfish that can carry a bacteria that can impact the liver; cooking the shellfish properly usually kills that bacteria from what I understand.

Thu, May 1, 2014 @ 5:47 AM

364. Bill wrote:
Pam, there is a cookbook titled "The Hemochromatosis Cookbook". The author may have some connection to the IDI. I changed my diet a lot after reading it.

Graham, face it man. You are now 49 years old. The joints and muscles just aren't like they use to be, even without hemochromatosis. My doc says you can get some of the excess iron out of organs, but not the joints. At 74 my joints hurt a lot.

All, I am still looking for comments on the ferritin decrease rate versus the number of phlebotomies. See #357. Anyone willing to share test results over time?

Thu, May 1, 2014 @ 2:16 PM

365. Bill wrote:
Neen, Read the cookbook mentioned in # 364.

Fri, May 2, 2014 @ 8:50 PM

366. Lee wrote:
This is an informative site. Thanks.
My son is in his late twenties and has been dealing with extreme tiredness and joint pain since he was 19. We have recently been considering the possibility of HH. Since age 22 this has been compounded by neurological challenges (concentration, confusion, etc.)
Recent lab results (sorry, Cdn):
hB - hemoglobin 137 g/L (low)
RBC 4.12 / L (low)
hct - hematocrit 0.392 L/L (low)
MCH 33.3 pg (high)
RDW 10.5 %CV (low)
Bilirubin 53 umol / L (high)
Ferritin 411 ug/L (high)
Iron total 23 umol / L
Iron transferrin 1.1 g/L (low)
iron saturation 0.86 (high)

In 2011 his free testosterone went to a very low level of 9.1 pmol / L -- since corrected to low end of normal (40.5)

He recently had DNA testing that showed one mutant H63D gene.
Can't find a doctor that takes it seriously for iron overload. Or even one that will prescribe and track impact of phlebotomy or other possible treatment. They comment on the high ferritin but keep saying "oh there's people that have it over 1000!"

Thoughts? Suggestions? Is there a problem?

Sun, May 4, 2014 @ 11:35 PM

367. Sue Morris wrote:
Hi everyone I am 57years old, October last year I was told my ferritin levels were over 700, I was referred to a liver specialist & he organised 12 lots of blood to be taken one lot was a gene test to see if I had Haemochromatosis, I waited for the results which took two months to come back, they came back negative, then I have had blood test after blood test, January my levels went up to 1200 now 1600, I have had one ultra scan & a fibro scan and tomorrow I am having a liver biopsy, I am so nervous, if I haven't got haemochromatosis what's wrong with me, I could cope if I knew what was wrong but the not knowing is scaring me, I have other problems, which are osteoarthritis, osteoporosis, a damaged kidney and precancerous cells in my right breast. Has anyone else got high ferritin but not haemochromatosis
very best wishes Sue

Mon, May 5, 2014 @ 1:32 AM

368. Bill wrote:

Good luck with the biopsy results. I hope they are negative.

Are you visiting a hematology/oncology doc? I hear they usually at least know about hemochromatosis. Also, you might reread #360. Bill

Mon, May 5, 2014 @ 5:56 PM

369. Jackie wrote:
I was diagnosed in July 2012. I had gastric by-pass surgery in June 2010. that was when I was first told that I had high Ferritin levels, at that time they were 585. I was told that it was because of my weight and that I had a "fatty" liver. I was also told that it would go down once I lost my weight.

For two years I went through the "fatty liver" diagnosis. Finally in 2012 I was told to talk to my PCP and have him start running other tests. This was when they ran the Genetic test. I have both the C282Y and H63D, I forget what everyone calls this. In the beginning I had to get a pint every week, then after 3 months it was a pint every two weeks, 3 months later once a month for another 3 months.

My last blood draw was on March 29, 2013. My Oncologist does not understand why I have not had to have a blood draw for over a year. My Ferritin level was 11 yesterday, I have been below 20 since March 2013.

I have been doing research lately to figure this out, the only thing that I can come up with is because of my surgery I have had to take 2300 mg of calcium every day and I like coffee. Both are inhibitors of Iron storage.

Tue, May 6, 2014 @ 6:24 PM

370. Pam wrote:
Jackie, you are absolutely correct. Someone having the C282y and H63D mutuations are called "compound heterozygotes". Some load iron and some do not. The calcium is a definate inhibitor to iron storage. I have seen this in my loves labs. I was expecting a large jump in his ferritin the last time he tested as he had been consuming larger than normal amounts of red meats, but we believe the addition of the calcium supplement that has been added to his regiment, actually helped to keep it lower!

Thu, May 8, 2014 @ 9:54 AM

371. alicia wrote:
I am 52, post menopausal and my Ferritin is 247. I was told thats okay ? I am also, type 2 diabetic. My liver enzymes are great. Worries ?

Sat, May 10, 2014 @ 3:43 PM

372. Pam wrote:
Alicia, if you are concerned about your ferritin, consider 1) printing off the physicians reference chart offered here at the IDI and 2) providing a copy of it to your dr. 3) ask the dr. to run a FULL iron panel as referenced on the chart, after having followed the pre-testing recommendations. If your ferritin remains elevated, ask to be re-checked again in three months. Based on the Physicians reference chart, Diabetes type II can indeed be a symptom of HH. However, ferritin in and of itself, is also known as what they call an "acute phase reactant" and can also signify an infection or inflammation somewhere in the body and this is why it is so important to run the FULL iron panel. If you are found to be considered iron loaded, your current number is not too bad, but you don't want it to get to high, as that is when the damage can begin to wreak havoc, silently on your body. If they rule out infection and inflammation, you may wish to get de-ironed with phlebotomy treatment. Genetic tests will tell you whether you have the gene's or not and the iron tests tell you if you have too much iron. Not everyone that has the genes loads iron and not all those that are iron loaded have the gene's. A very puzzling disorder for sure. Good thing to be on top of things. Nobody cares more about you than you, so be sure to keep on top of things. Hematologists are the best trained to treat this disoder. Good luck!

Mon, May 12, 2014 @ 10:14 AM

373. Bill wrote:
How is Hemochromatosis and Sleep Apnea related? Diagnosed first with HH and eventually
Sleep apnea..I've been taking L arginine because of the sleep apnea recently and found it
to help with the apnea....I've been taking L arginine before being diagnosed....I have not discussed taking arginine with the Dr.'s..Anyone taking L Arginine for HH.

Thanks guys...

Tue, May 20, 2014 @ 11:45 AM

374. wrote:
Hi. I am new here. My dad was just diagnosed with a ferritin level of 6300 and his hemoglobin is 10. He just went to his first hematologist visit and his doctor is doing a bone marrow biopsy. it will take 2 weeks to come back. This doc is focused on a diagnosis of cancer and says he will not treat my dad's high ferritin level. he said that my dad cannot do a phlebotomy as his hemoglobin is too low and he is too anemic. What can we do?! I fear this guy doesn't know what he is doing and wasting my dads precious time...if he has any left to spare. I was thinking that he needed an emergency phlebotomy to get the levels lower as fast as possible.

Thank you for any advice.

Sat, May 24, 2014 @ 3:00 AM

375. Pam wrote:
Bill, I have no information about your supplement mentioned in post #373. Angela (post 374), the reason your dad's dr. will NOT treat the high ferritin at this time is because his hemoglobin is too low and would create even FURTHER problems. Give the doc some time to figure out why things are the way they are. Unless your dad actually has a HH diagnosis, there could be OTHER reasons for the high ferritin. I encourage you to review ALL the helpful forms and charts offered by the IDI to include those about anemias. Most people in the general population think that "Anemia" always means "low iron", but that appears to not always be the case. Hopefully, they can figure out what is really going on and prescribe appropriate treatment. Try to stay positive and give your dad lots of support---he needs that. All the best!

Thu, May 29, 2014 @ 5:46 AM

376. Lisa wrote:
To everyone out there: I am truly empathetic to your stories. I was diagnosed homozygous HH about 4 years ago thanks to a bright and attentive NP. I had been feeling "crappy" in general for several years and had been told by 3 different MDs that I was depressed and had allergies. When I felt that they weren't listening and just blowing me off, I changed doctors. I then found Jill an NP at my new MDs office. I had contracted a sinus infection that was treated but came back 2 weeks later. It was then treated with the same antibiotic and steroids. I felt amazing. After treatment, the infection came back. Jill at that time, did her research and ordered a battery of tests to include the iron profile and ferritin. I was then diagnosed and have my therapeutic phlebotomies as necessary by a wonderful hematologists office here in Tucson. I knew my ferritin had been climbing (no phlebotomies for over a year b/c I was living outside the country) b/c I now am experiencing increased fatigue and increasing joint pain but the joints are arthritic. I am also experiencing thinning hair and nails-don't know if that is related. I guess my point to this is don't give up. Find someone who will listen and do what is best for you. They are out there, just keep looking.

Sun, June 1, 2014 @ 10:40 AM

377. rick wrote:
hello, im a newbie looking for info on my next step. my ferratin is 318. tranferrin 217.
hemoglobin 17.2.saturation 49.tibc 240. uibc 122. serum iron 167. i feel like im
dieing! please help. tyvm

Mon, June 2, 2014 @ 12:00 AM

378. Lisa wrote:
All I can tell you is to find a reputable Hematologist which are often oncologists. They are the experts at blood disorders. My doctor is only concerned with my ferritin levels b/c now the remaining results are often within normal range. My ferritin currently is also 318 which I know is not that high but I'm becoming symptomatic and it has only been getting worse. I am now getting scheduled for 3 phlebotomies over the next 6 weeks. Based on my past experience, at least for me, this works. When I addressed dietary changes, my MD said it wouldn't work b/c most iron is held in the red blood cell and so to get rid of the iron, they have to remove the red blood-thus phlebotomy. Next, make sure you have had the genetic testing done which will be ordered by the hematologist just to confirm your diagnosis. Hope this helps.

Mon, June 2, 2014 @ 7:53 AM

379. Sherri Hopkins wrote:
I am seeing a hematologist who will not do any phlebotomy on me until I reach 1000ng/ml. Ive been told by others that this is not aggressive enough. Im homozygous H36D. Hgb. 14.6, Ferritin 330 Ts30% and Mcv 91.7. I do not have a menstrual cycle as I had hysterectomy . Im 48. Any thoughts on this. I may seek another doctor but Im lucky where I live to find a Doc that has actually heard of Hemo.

Tue, June 3, 2014 @ 3:39 PM

380. Lisa wrote:
I would attempt to find another MD. My doc phlebotomizes me anytime I'm over 170 or 180 to keep my ferritin around 150. It keeps the symptoms under control b/c I can definitely tell when it starts to climb again.

Tue, June 3, 2014 @ 8:57 PM

381. Lisa wrote:
I would attempt to find another MD. My doc phlebotomizes me anytime I'm over 170 or 180 to keep my ferritin around 150. It keeps the symptoms under control b/c I can definitely tell when it starts to climb again.

Tue, June 3, 2014 @ 8:59 PM

382. Tony Teniswood wrote:
My ferritin levels were over 1600' afterivenusection, they are down to 900 and have just had another venous section.will wait for tests to see results. My doctor believes blood removal is not the answer, have been gene tested, liver scanned etc, all good except for fatty liver. All my research says I should be have venous section atleastonce a week until ferritin levels below 300, but doctor dismisses this.any ideas/ suggestions? If my terminology is different I apologise , I. Am an Aussie, we do things different down here.

Wed, June 4, 2014 @ 9:25 PM

383. Lisa wrote:
Welcome! If the doctor does not believe in phlebotomy, I'm just wondering what he thinks is proper treatment. Tony, I know things are different everywhere and if the Aussies have another solution or treatment, I personally would love to know.

Fri, June 6, 2014 @ 8:18 AM

384. Pam wrote:
For Tony Teniswood, I recommend you print out the Physicians Reference Chart filed under the "helpful forms and charts" section of this web-site. If you tested negative for the HH gene's then it is possible something else may be going on. The Physician's reference chart offers other possiblities for iron loading. In addition, ferritin is also known as an acute phase reactant meaning you could have some sort of inflammation or perhaps some sort of infection going on. Show it to your dr. and ask to have these other items ruled out. Good luck!

Sat, June 7, 2014 @ 4:41 AM

385. Wendy wrote:
Hello, New to this.
My husband was diagnosed with this Hemochromatosis in January (6months ago).
he is doing his phlebotomy treatments, but they are so draining. He's getting a little depressed because he can not do what he use to be able to do . (He's only 35 and we have a 3 year old) Any suggestions on energy boosting foods he can try? I did find a vitamin supplement that worked, but he needs more.
Anyone else experienced in this draining, constant fatigue and can give me some pointers to help him out??
THank you all very much.

Mon, June 16, 2014 @ 3:49 PM

386. Walter wrote:
Hi, I have HH, was Dx'ed when I was 27yrs. now 73. had a few phleb's and was active on the I.O.D. list years back.
I'm sending this to see if I am getting on (or connected too) the discussion list. Have niese who may need testing. If I do connect would someone please reply.

Tue, June 17, 2014 @ 11:11 AM

387. Walter wrote:
How often does your husband have Phleb's… And what is the % of saturation? If his ferritin and % of Sat.. are below
20 and his Hct. low. - the he will feel wasted. I 've been there as most have. For me, having extra protein even if I had to have red - meat while using tea and tums to block iron up take, seem to work good. It's best to stay off red meat but sometimes it helped me bounce back faster. But do not give up on the Phleb's . Being hydrated is very improtiant also. And using as us mentioned
vit's (less Fe.) is good.


Fri, June 20, 2014 @ 9:54 PM

388. Pam wrote:
Hi, Wendy: Be careful on the vitamins as many contain iron AND vit. C which can contribute to loading and storing. The treating physician ought be monitoring his labs along the way. Some physicians unknowingly OVERBLEED which can result in anemia. But it is NOT unusual for some to be so wiped out after treatment....read everything here and you will learn much of what you/he needs to know. All the best!

Sat, June 21, 2014 @ 6:27 AM

389. Wendy wrote:
Walter/ Pam, Thank you all very much! This has been very helpful.

Mon, June 23, 2014 @ 12:00 PM

390. Ratko wrote:
My name is from Serbia Ratko sam.Imam 54 years. The result is a molecular genetic analysis of homozygous pc282J mutation (c.854G> A).
Dg Hematohromatosiš
Diabetes mellitus type 2
Th venipuncture of 300-350 ml of blood in 7-10 days
I started therapy in 11 months of 2013. my ferritin was then increased almost 10 times the normal.
Now my ferritin increased 3 times
I had chest pains and fatigue. joint pain. That's much better.
during treatment I walked with diabetes medications on isulin. Serbia has this rare disease and can not get good advice

Tue, June 24, 2014 @ 7:02 AM

391. Linda wrote:
My Father-in-Law is very ill with kidney disease. His iron levels are very high which is unexpected and because of this he cannot have a kidney biopsy.. Can you please explain why his iron levels should be so high? The Doctors seem to be puzzled by this scenario as well.

Sun, June 29, 2014 @ 2:16 PM

392. Pam wrote:
There are MANY reasons for iron being high....I suggest you take a look at the helpful forms and charts available at the IDI---look at the menu to the left up above. There is also a Physicians Reference Chart which lists all the necessary tests to determine a true iron overload. Gene testing for HH only shows the gene's but does NOT determine if or when someone may load iron. Best Wishes.

Wed, July 2, 2014 @ 10:43 AM

393. Emily wrote:
Hi, I am new to this site. I am a 51 year old female. Was diagnosed 2 years ago and completed de-ironing. One year ago, I developed severe joint pains, initially in my hands and knees, now also in my shoulders, wrists, feet, neck. I am on daily NSAIDS which have helped with the pain. My internist, rheumatologist, and hematologist all attribute the joint pains to something other than HH. However, my symptoms seem to be what are described in the medical literature I have found. Do some of you also have joint pain? Did it worsen during phlebotomy treatment. My pain waxes and wanes, and doesn't seem to be related to my ferritin level. Thank you for your comments. Emily

Thu, July 3, 2014 @ 1:12 PM

394. Rayon Smith wrote:
hi I am a 27 year old male and I have been having diarrhea problems for more than 3 days and sometimes the color can be a bright green and everytime I eat within 15 to 10 minutes I have to use the restroom what can be wrong.

Thu, July 3, 2014 @ 11:18 PM

395. Kali wrote:
My iron levels were tested due to an unbalanced feeling that comes and goes ferratin was 175 the first test and 3 months later has gone up to 225 . My dr said it's an inflammation marker and needs investigating ! I'm so scared !! I have been battling hyperpigmentation for years but have no other symptoms of anything to speak of .

Sat, July 5, 2014 @ 12:15 PM

396. Pam wrote:
Most of us on the blog here are NOT medical professionals, but those of us that are knowledgeble of HH and other iron loading disorders know that Ferritin in and of itself can represent many things....I recommend Kali print off the physicians reference chart and the other helpful forms and charts and share them with your dr. If you have HH, there are other tests that are important to the diagnosis. The first is the iron panel as outlined on the physicians reference chart. These tests will show whether you are or are NOT loading and storing and the genetic tests can rule HH in or out as to cause. A ferritin of 225 is elevated but it would seem not too bad and it may be an early symptom and be caught early and that would be a great thing, as long as you stay on top of it. It only seems to cause trouble, the longer it takes to diagnose and treat. Regular treatment can create a full life expectancy.

Sun, July 6, 2014 @ 7:26 AM

397. Hezekiah wrote:
I went to the doctor last year and had blood work done and the dr said I have hemochromatosis but what im not understanding is my iron was 233 tibc 259 saturation 90% but my ferritin was only 63.1 I dont understand how the iron can be so high and my ferritin be normal

Sun, July 20, 2014 @ 8:41 AM

398. Pam wrote:
I suggest you print off the Physician Reference Chart (Look under the "Quick Resources" and "helpful forms and charts") look it over and give a copy to your physician. There are many possibilities to be explored. Serum iron represents the amount of iron circulating in your blood, whereas, serum ferritin represents what is stored, or can be elevated in the instance of inflammation, infection, cancer. Your ferritin is NOT elevated. But your serum iron and TSAT is. Dr. ought be exploring the other possiblities. Best wishes.

Mon, July 21, 2014 @ 7:58 AM

399. Ernie wrote:
Hi Emily,
I am 64 and still in the process of de-ironing. My ferritin is 714ng/ml from over 2000 eleven months ago. Joint pain in my ankles, knees and hands have not abated and I also find they wax and wane. Typically my HH was diagnosed at a late stage and in the last three years I have undergone 4 vetebrae fusions, total hip and ankle replacements. My diet is pretty standard so I don't see its influence on the almost daily changes in joint pains. I started hydro therapy last week and am hoping for positive benefits as we progress. Four years ago I would still walk 10kms 5 days a week for excersise; today walking around the block is an effort.

Tue, July 22, 2014 @ 4:34 AM

400. Gail S. wrote:
To Jacquie (#15) I just couldn't believe what you wrote! I am a 49 almost 50 year old female (pre menopausal) and I have been doing phlebotomies about every other month, and getting iron panel about every 4 months to monitor levels. They have been in normal range so thought this program was working. I had a phlebotomy a week ago today. Four days later I was in the ER with extreme ab pain. They ran labs and iron panel to find that I am extremely anemic -- don't have all numbers handy but percent sat was 8; iron 13 and ferritin low and don't now TIBC, hebmalobin 10. doctor said are you sure you actually were diagnosed with HC? Yes 20 years ago and when diagnosed numbers were very high and sat was 98%. I had a bout with A-FIb at that time too that was resolved with getting the levels back to normal. I don't get iron panels drawn before a phlebot. but my brother who has HC (but lives far away ) says his hematologist will never draw him until he has labs first to make sure. Tomorrow they are thinking I need an Iron IV Infusion as well as a blood transfusion if my hcb is down to 9. Crazy. So I don't know what to think and neither to the docs. (four now) If you want to stay in touch my email is above and I can let you know my outcome and maybe it will help you. I think you should see a hematologist if you can. Where I live, we don't have one, but I am planning on traveling to see one as soon as I am stabilized. This is all such a mystery!

Fri, July 25, 2014 @ 12:32 AM

401. Dan wrote:

I've had all the tests ran by a hematologist for the obvious checks of this problem with no luck. Also had the full scale genetic testing done for every known cancer and disease they can test for today. Can anyone help me?

I'm dan. 26 year old white male. I found my high ferritin problem through my opioid addiction treatment. I thought I was just a lousy pain pill abuser because without opiate pain relievers I would be tired all the time, depressed,s strong lower leg pains, and just overall unhappy. As anyone with opiate addiction knows you can't continue on that forever so one day I got treatment on buprenorphine to help me comfortably ween myself off from pain relievers. Did that for 8 months, within 2 months was back using pain relievers. Next time I got on buprenorphine doctor took labs and found out my ferritin was 750.

For first time I realized that the pain and heavy tiredness I had without opiates wasn'resomething that my body and mind made up when I was without drugs. Turns out there is a real physical issue. Anyways I've stayed on the buprenirphine for 18 months currently because they haven't been able to find out what causes this. The buprenirphine is a strong long lasting opiate that gives me energy and takes away my pain.without getting my ferritin lowered I know I can't stop this drug for my life is miserable without it.

everyday after 8 hours at an easy jobi wouldhave to ready for a few hours just to get my leg pain tolerable n gain a little energy. I am mean and rude because I'm in pain and tired. It doesn't take long before I'm depressed and can't stand it. The pain relievers take the pain away and restore my energy. I'm at a loss please help

Tue, July 29, 2014 @ 12:36 PM

402. Pam wrote:
As suggested in the past....print off the Physicians Reference Chart and provide a copy to your dr. Ferritin in and of itself and by itself is INSUFFICIENT to rule an iron overload in or out. It could be INFECTION. It could mean some other inflammation in the body. A COMPLETE iron panel is required to determine IRON STORAGE. Long term opiate use is harmful to the the liver, as is stored iron. Your dr. ought be looking to these other possiblities if HH isn't fitting (assuming all the appropriate tests have been done). Hope you can get to the bottom of your problem, so that you can get off these opiates which can really mess you up. Good luck.

Wed, July 30, 2014 @ 4:26 AM

403. teresa wrote:
Hello, I was tested for ferritin , iron, tibc, all areas were just fine in normal range.
in 3 months i went to get another test done for a different dr. she did not test ferritin only iron which the other one did also. I am a woman 39 years old and my iron serum was
Iron Bind.Cap.(Tibc) 297 range 250-450 ug/dL
Uibc 125 range 150-375 ug/dL
Iron, Serum 172 range 35-155 ug/dL
Iron Saturation 58 range 15-55 %
very confused as in 3 months time to see a change.
I did do a bunch of supplements and a green drink.. I wonder if that would do it.. Thanks for any help as it was odd.

Mon, August 4, 2014 @ 8:24 AM

404. Pam wrote:
It's too hard to say. I would print off the Physican's Reference Chart/Diagnosis Algorithm and give it to your dr. and ask them to follow these guidelines for testing and interpretation. As the patient, I would also follow the PRE-TESTING dietary guidelines as well. The ranges you reported above are HIGHER than those recommended by the IDI (Iron Disorders Institute), however, in order to calculate the Iron Sat % there had to have been a FERRITIN reading which is NOT listed above. The Iron Sat % you list is in excess of the recommendations of the IDI, which means you MAY have a propensity to load. If your ferritin level exceeds the recommended level of the IDI, I would point this out to your physician and ask to be RE-CHECKED in a couple months. And if they give you problems, about your request, FIND another one. Be proactive and if your Ferritin is in excess of the IDI, go DONATE blood (just don't tell them you have or may have something, b/c this is NOT a disease and it is NOT a blood disorder; rather it is a disorder of metabolism). Best wishes with re-check. Don't ever let a physician tell you they won't treat you until your ferritin exceeds 1000--THAT means PERMANENT IRREVERSIBLE ORGAN DAMAGE and you DON'T want that.

Mon, August 4, 2014 @ 9:35 AM

405. teresa wrote:
Thank so much for your response. Although the testing that was first done that was completely normal included ferritin levels but not this one... hmmm i am confused. I am going to get a new prescription and get this taken again. I appreciate your response.. Glad I found this board!!! I will update when i get my results... I would go and donate blood but I am on medications so i never did.... Thanks again.

Mon, August 4, 2014 @ 1:41 PM

406. Pam wrote:
Your welcome! Some medications could potentially render you UNABLE to donate based on the respective blood banks guidelines, so I would check your meds against the respective guidelines in advance and proceed with that re-check according to the guidelines of the PEER REVIEWED IDI recommendations. Stay on top of it. You are your own best advocate and accurate knowledge is powerful!

Tue, August 5, 2014 @ 6:10 AM

407. Susan wrote:
My question is, I have hemochromatosis, 2 yrs of phlebotomies. I have been getting MRI's every 6 months for a 8mm enhancing lesion and the last three have been stable. My Liver biopsy 2 years ago showed +4 iron, minimal fibrosis and HIC over 25,000. My ferritin at diagnosis was slightly over 3000. The MRI's states atrophy of the right lobe, confluent hepatic fibrosis with the suggestion of cirrhosis (based on contour of the liver).. Is it recommended to do another liver biopsy? Could I have developed cirrhosis during the 2 years of phlebotomies?

Tue, August 5, 2014 @ 2:46 PM

408. Martina wrote:
My Ferritin is 64 ng/ml but my total iron is 216 mcg/dl and % saturation is 62% (calc) does any one know why my Iron and saturation could be this high?

Thu, August 7, 2014 @ 4:14 PM

409. Francisco wrote:
Hi all,

I was wondering if someone can help me with these results:

Iron bind cap 216 low
UIBC 129 low
Iron Serum 87
Iron Sat 40
ferritin,serum 435 high

I have no idea what these numbers mean and if i should see someone about this. I know my ferritin is not above 1000 but i dont want to wait to reach that point. There some other numbers here that are low and iron serum is normal so i am totally lost. I have a condition called Gastroparesis so i dont eat much. My diet is mainly a small amount of beets and an egg. I also try to have a small amount of salmon if my stomach allows me too. My liver enzymes are slightly elevated although they have been for the past couple of years. I have lost a total of 200 pounds because of my Gastroparesis and am now down to about 100 pounds. Any info on what these numbers mean would be of great help. Thank You.

Sat, August 9, 2014 @ 7:16 AM

410. Pam wrote:
Your results indicate an iron OVERLOAD, possibly due to HH, but there could be OTHER reasons for these results. You DO NOT want your ferritin to get to 1000! That means PERMANENT ORGAN DAMAGE. I recommend you print off the physicians reference chart located under the "Helpful forms and Charts" link up above on the left hand side of your screen and make an extra copy to give to your physician. It IS also possible there was a lab error. Utilizing the Physician's Reference Chart and following the pre-testing guidelines, I would ask to be re-checked. If your values remain in excess of the values listed on the chart, I would ask for a referral to Hematology for further investigation. These particular lab tests tell you if your body is STORING too much iron. DNA tests for HH if found to be positive would tell you WHY your body is storing. Although I have NOT seen anything specific linking HH to Gastroparesis, it would NOT surprise me if there were a link, afterall, too much iron does get absorbed via the gastrointestinal tract. If HH is ruled OUT, then your physician ought be looking to the OTHER possiblities listed on the chart and rule those in our out for cause. In the meantime, you might try to donate some blood at your local blood bank just to get a head start. If your repeat tests still indicate too much STORAGE IRON, phlebotomy treatment ought commence ASAP, once weekly as tolerable to reach a goal of 20-50 on the Ferritin...known at the MAINTENENCE phase. Once you reach that point, a schedule can be determined just for you to monitor your levels to keep them between the 20-50. Don't let anyone tell you to wait til you reach 1000 to begin treatment! Read everything on this web-site as well as the information provided on the partner site: www.hemochromatosis.org to learn more about Hereditary Hemochromatosis and other IRON disorders. Best wishes.

Sat, August 9, 2014 @ 9:18 AM

411. Pam wrote:
Excuse me---I meant a POTENTIAL iron overload (unable to EDIT prior posted content).
You will note in your reading, that serum ferritin in and of itself CAN mean other things, though, so it's important to include those other tests as well which are used to calculate a Transferrin Saturation %. In your case, take your serum iron (87) and divide that by the TIBC (216) and multiply that result by 100. Based on your numbers listed, your transferrin Sat % is just over 40----in the range of an iron overload. Repeating the iron panel as I suggested above will confirm if you are storing too much iron in which case phlebotomy may be warranted under the direction of an EDUCATED hematalogist. Please make note I am NOT a medical professional and in no way affilliated with the IDI---just someone with knowledge and second-hand experience on behalf of a loved one.

Sat, August 9, 2014 @ 9:33 AM

412. Francisco wrote:
What i cant understand is my doctor says there is nothing worry about because it is slightly elevated. Normal range in the lab report goes up to 415.

Sat, August 9, 2014 @ 10:21 AM

413. Pat wrote:
Isn't there anyone on this website who is a medical professional with a background in treating iron overload. If not, YOU SHOULD NOT be answering these questions.

Sat, August 9, 2014 @ 5:20 PM

414. Beth wrote:
I recently got tested and had an iron level of 355. My doctor wasn't worried until I pushed him on it. I am a 26 year old female. Any suggestions? Should I be worried?

Tue, August 12, 2014 @ 8:51 PM

415. Pam wrote:
This is a note to Pat....that advice I put up above is that of the IDI based upon their medical board--NOT my own, other than the experience of what my loved one has experienced. Please explore the information available here and you will see what I mean. The PROBLEM with this disorder is that not enough physicians are sufficiently educated about this. I believe there is even a study done and published on Pubmed which confirms it. This is a place for patients AND physicians alike to learn. I have personally run across physicians who didn't know jack---until I showed them where they can learn, or if they weren't interested, moved on. You will note the advice I offered was to print information off and consult a physician.

Wed, August 13, 2014 @ 7:18 PM

416. Pam wrote:
Francisco and Beth: Different labs have different reference ranges. Sounds like you may be dealing with undereducated physicians. Once again, I recommend you read everything on this web-site, print off the physicians reference chart and take to your respective dr's. Beth, Ferritin in and of itself can represent many things and must be taken into account with the other labs. Ask them to follow these guidelines in evaluating you for an iron disorder.

Wed, August 13, 2014 @ 7:24 PM

417. Ethan wrote:
Hi Folks, I am new to this as I have just been diagnosed with HH, two mutations, C282Y and H63D. My ferritin level is 1686 or was, I have had two phlebotomies in the past 7 days. I crashed on the second one. Not sure I can handle two a week. Does this get better? Any advice on before and after phlebotomies? Do you think I have hurt my liver yet? 40 yrs old. I have heart monitor on but since the second one, I have not had any issues with my heart. Anyway, hi to all and I hope you are having a great day!

Wed, August 13, 2014 @ 9:17 PM

418. Pam wrote:
Ethan, with your levels, I would suggest you consult your hematologist about trying DBRA or Double Red Cell Apherisis. It is sometimes used instead of phlebotomy treatment in those who are very overloaded. It is similiar to a phlebotomy but more like a dialisis that filters your blood, removing the red cells that contain the iron and returning everything else back to you. If you qualify for this, the process is supposed to get the iron out quicker from what I understand. I would do a search here at the IDI web-site to learn more about it. Everyone is so different with this and only a physician can dictate if this may be right for you. Good luck!

Fri, August 15, 2014 @ 7:52 AM

419. Ethan wrote:
Pam, thank you very much for your post. I will check into it. The VA hospital is treating me now, not sure if that is an option or not with them. I will look into the private sector about this. I had my third one yesterday, still close to fainting and could not drive. My levels went from 1686 to 1431 after two. Just hard to gain energy back afterwards. I have not touched a drink in a few weeks since they told me about this and now my ALT's have come down 7 points to 69.

Tue, August 19, 2014 @ 8:59 PM

420. Nikko wrote:

In my ignorance I had been taking hema-plex iron pills about 4 years ago, thinking that I was doing something good for my blood. I had some symptoms of iron overloading which at the time I did not understand, such as severe brain fog, joint pain for a short time. After about a year or so supplementing on and off, until I got severe chronic fatigue. After that, not knowing what was going on, I went from supplement to supplement, trying to find the missing nutrient, going to doctors, western and natural, finally in my ignorance, I got into the whole salt baths, and epsom salt baths. Which went ok, but then I took bath with salt that contained iron / zinc / manganese. Long story short, it's a miracle I am still alive. Much pursued after that, and I a complete idiot for "trying things out" but I have bigger balls then most to admit my mistakes and move on. Needless to say, I am very skeptical now of ANY supplements, or taking any isolated substances, simply because we don't know what we are doing in the big scheme of things.

Anyway, when I was REALLY BAD and reacting to meat and very unstable, barely living, my SF was 327 and my saturation was at 67%... in about a year, my most recent test, I am at SF 271 and saturation at 38%. From my understanding, I AM iron overloaded still, my plan is to donate some blood. I am much better now then I was before, and feel stable enough to do that.

Another interesting thing to note, is that during the last year, I had some severe, VERY SEVERE de-stabilizations I call them.... episodes, after eating a large dose of cranberries, and then about 8 month later, after eating a bowl of very tart wild cherries.... It was really bad... From my research, all these foods contain a large amount of the flavanoid Quercetin which can VERY effectively move out iron from within cells, like a chelator. So my understanding is, while my body's ability to move iron is improving, I have alot of it sequestered in my cells, that I need to safely remove over a long period of time.

I have been trying to find out information about chelating with quercetin, but the info on iron chelation is very scarce overall. Before I found out I was Iron toxic, I suspected I was mercury toxic. Studying extensively Andy Cutlers protocol for removing Mercury using the antioxidant Alpha Lipoic Acid or ALA which is a natural supplement, derived from food, to remove mercury from the organs and brain, his whole PROVEN method is taking a small dose orally every 3 hours or so, to keep the ala in the blood stream working and chelating. For example, taking a LARGE single dose of ALA, a natural supplement, while you are mercury toxic, will MESS YOU UP! You basically mobilize a large amount of mercury and then when the ALA's half life expires and it dissapears from the blood stream, all that attached mercury gets detached, and lands wherever! Why am I saying all this, because, this was the same effect I had when took those cranberries or cherries and mega dosed basically naturally with a flavanoid that messed me up for a bit!

This brings me to my next conclusion, if you were to eat cranberries in a small measured portions, every 10 hours or so (the half life of quercetin) for 2-3 days at a time, with breaks in between, you would chelate the organ storage of iron. After 6-12 month, you could do EGCG which crosses the BBB and chelate the brain in the same safe fashion. Again, the information on this is basically NON EXISTENT, and the only person that has shed some genius on metal chelation is Dr. Andy Cutler, PhD. only in his case it was mercury (Much harder for the body to remove) I plan on contacting Mr. Cutler and seeing if he can shed more light on this subject and what he thinks about the iron chelation theory.

If there is anyone with contributing information or anything of the like, please get in touch with me or write on here so we can discuss further. Thank you in advance!

Wed, August 27, 2014 @ 11:00 PM

421. Ingrid wrote:
I had my yearly physical in May , iron level s fine and have always been. Had heart pain bad one night and chalked it up to high cholesterol went and got tests the day after. Seems like my iron was 17.1 in May is now high 36.2 and my iron saturation was 23% is now 61% , ferritin and tibc are normal what could cause this drastic increase? Dr said nothing about iron levels but gave me Crestor for high cholesterol but afraid to take it while iron levels are so high? Any suggestions or advice would be great!

Sat, September 13, 2014 @ 2:08 PM

422. derek wrote:
i was diagnosed with the faulty gene to predispose me to hereditary haemachromatosis this year in 2014
i have to date had 7 phlebotomies as my ferritin level was at first 845 and now is down to about 350 .i am currently contiuing to have my blood removed weekly and my ferritin levels dropping
my physical symptome were an ache around my liver area and a ache in my testicle other than that i had no obvious symptoms both of which could have easily been attributed to other causes until my diagnosis

Mon, September 15, 2014 @ 12:17 AM

423. paul mcloughlin - northern ireland wrote:
I have haemocromatosis now for the past 2 years and am due my 3 monthly check up shortly
I am totally confused with all these medical terms and would love to see in bullet points what I should be asking my consultant on this visit

Any haemocromatosis experts out there please email me and let me know
I live in Northern Ireland

Wed, September 17, 2014 @ 2:30 PM

424. vivi wrote:
Hi guys
Recent blood test came back

ggt 408 ast 178 alt 184 ferritin 1529

my uncle died of haemocromatosis as there was not much known about it back then all they kept saying to him was give up drinking my uncle never drank for 8 years before he died
autopsy showed what he died of.wil wait for the next test to come back this week

Sun, September 28, 2014 @ 5:15 AM

425. kristina wrote:
I recently went to the doctor for a physical and my liver level was 185...they retested 8 weeks later and it was 160 which is with in the normal range but borderline high. They called and said they want me to see he hematologist??? All other blood tests and enzymes were normal. Should I be worried? After all it dropped levels. Of coarse my doctor is not calling me back. Im very nervous about it.

Mon, September 29, 2014 @ 5:58 PM

426. Pam wrote:
You did not specify WHICH LAB TESTS were done....there are thousands of different things that can be checked. For HH, the things that need to be checked are: 1) Serum Iron 2) Serum Ferritin and 3) Total Iron Binding Capacity. Each lab has different values and for those with confirmed HH, I recommend the values of the Iron Disorders Institute. If the labs I mention are INCREASED, then a genetic test may be warranted. For further information, take a look at the Physicians Reference Chart available at this website. A Hematologist in my opinion may be the best bet when there are lab abnormalities in the blood. Best wishes!

Tue, October 7, 2014 @ 8:53 AM

427. Dallas wrote:
Major Iron OVERLOAD - Looking for support/informational groups in the Pacific Palisades, Santa Monica area of Southern California.

Also, for Iron Overload, which types of teas, black coffees etc. are the best? Does it matter if they are decaffeinated?

Website recommends Swiss Cocoa. Does that mean a particular brand, type? Drink or solid form?

Eating EGGS - should I eat entire egg or just the whites?

Wed, October 15, 2014 @ 7:58 PM

428. Diana wrote:
66 year old female. I have osteoporosis, a ventricular anuerism, thyroid disease, cysts in my liver, and stage 3b CKD. Complex health issues. On recent labs Iron total was low at 39 mcg/dL, saturation 23%, iron binding capacity 292 mcg/dL. Ferritin was high at 301 ng/mL. TSH was 0.03 very low. My doctor said Ferritin and iron are the same thing. After reading info on this site, I believe he is not correct but he said I need more iron supplements. Can someone guide me in the right direction? Can an endocrinologist sort all this out as my doctor agreed I probably have parathyroid disease and wonder if Iron and Ferritin are part of this puzzle. What types of specialists are needed besides a Nephrologist and Endocrinologist?

Tue, October 21, 2014 @ 8:26 AM

429. Pam wrote:
Not necessarily. Serum iron is what's circulating in your blood and ferritin can represent stored iron but it can also represent infection or inflammation when elevated. Look at all the helpful forms and charts here to include those about anemias and those of chronic disease. I would think a hematologist would be helpful.

Thu, October 30, 2014 @ 7:33 PM

430. ingrid wrote:
I went to the doctor in may and everything was fine except estradiol was 108 pmol/l or 29.41pg/ml which my doctor said was low since (post menopause values ) I still get my monthly period. Well in the end of august I went to a local clinic the next day after having a pain in my chest the night before. They checked all my blood levels and did a chest xray and Ecg. The doctor at the clinic told me I had moderate cholesterol levels for a heart attack and prescribed Crestor. When I got home with my lab results for that doctor I was very surprized to see that my iron saturation was 61% and my iron serum was 36.2 . Three month prior it was 21% saturation and 17.3 serum iron.? I went back to the local doctor and she said it was nothing to worry about. Well the week of the chest pain I was very very tired and had pains in my chest when lying down and hand knuckle pains plus fast heart rate over 100 resting. I decided to do a genetic test for hemochromatosis which came back negative for any mutant in the hfe gene. There is more rare hemochromatosis which only a lab in spain and Germany test. I was wondering if anyone else out there has had high iron values like me and no mutant HFE gene?

Sat, November 1, 2014 @ 12:30 PM

431. Julie wrote:
I am 26 yeas old and struggling with ferrtin levels being too high. Last I checked i was at 636.
I lived a very active life playing soccer and strength training , hitting the gym 6 days a week before feeling these odd symptoms. Symptoms such as fatigue, dizziness, and reoccurring headaches. I follow a high protein and vegetable meal plan eating 5 meals a day. Supplements consist of vitamin d3, vitamin C, and a Active women's multivitamin.
I have been tested for hemochromatosis and the results came back negative.
I am going to see the doctor and request a referral to a GI specialist . But until then I do not know what to do as the symptoms are impeding me from moving forward with exercise and work.
Should I push through the fatigue and train anyway?
What should my next steps be?

Mon, November 3, 2014 @ 8:31 PM

432. Pam wrote:
There are other disorders that can cause high ferritin. Take a look at the physicians reference chart under helpful forms and charts as other potential causes are listed there. There is also a possibility of infection or inflammation. Ask your dr. To rule out the other causes besides HH.

Fri, November 7, 2014 @ 11:16 AM

433. Carol Champion wrote:
Hi everyone I was diagnosed with HH 2 weeks ago. I had ben going to the Drs for months telling her i feel like I'm dying please do something. My son thought he had mono & went to the Dr. They thought he had HH. They did lots of blood work & doing DNA tests. I asked the Dr to test my liver & sure enough I have it too. She gave me a hematologist & when they heard my symptoms I was in the very next day at 10 AM! I feel blessed. My son saved my life getting sick. God works in mysterious ways.

My ferritin is 1224 so I know I have lots of blood draining to do. I have neurapathy up to my knees, my BP drops 20 points when i stand up, lost half my hearing in my right ear & latest blood work from nurologist says I have high rheumatoid arthritis.

I do have a question - do I still have damage done once I start the blood draining? I am so afraid of what else is going to go wrong.

Wed, November 19, 2014 @ 5:35 AM

434. Robert wrote:
Hello everyone,
My Serum Ferritin is 925, but my transferrin is normal. I have over 10 symptoms which match the symptoms for DIOS. My doctor tells me my iron is fine because my transferrin is normal. I don't know what to do next. Should I just go to a Hematologist? any advise would help

Wed, November 19, 2014 @ 2:24 PM

435. Ingrid wrote:
I have a baffling mystery here and hope someone could give me some insight.
I am a 53 year old female who is in peri menopause and still get a monthly period between 26- 46 days so light and so heavier.

May I had yearly physical where everything was fine but estradiol was 108 pmol/l which 110 and below is menopause values my doctor said. She said they were a bit low but as long as I am feeling ok its fine. Iron saturation was 23% and iron serum was 17.3 umol/l.

August I had a severe pain between my breasts and it last about 6 minutes ( I was sitting reading at the time)or so right in the front going right through to my back, I took off my bra as it felt like it was extremely tight. I was very agitated while this pain was going on. I told my husband who got home a bit after and he told me I should of gone to the hospital.
Well the next day I went up to the small local hospital and told the doctor there was I felt the night before and she ran some tests.
Two days later I went for the results of bloodwork and EGC and Xrays. She didn't say to much just that my cholesterol was high and that I should consider going on Crestor.
I left with a prescription of that and a copy of my test results.
When I got home I sat down and looked at them and saw H and H on iron saturation 61% and iron serum 36.7umol/l??? I was shocked and went and got all my past yearly blood work from my past physicals. Never has my iron ever been over 31% sat. I went back to the doctor , did a retest and she said it is nothing to worry about but to start taking the crestor. Well after doing some research I decided to do a HFE test for hemochromatosis at a private lab. It came back normal, no gentic mutants. I went back and 2 weeks later for the retest results but they were now normal? Well I could of told her that because the week before I had a heavy period for 7 days... and my iron would of been lowered.
Now, I could see a lab error however the week after the first iron tests when I felt so sick I had 2 weird infections: one on an old hang nail after digging the garden the day before and overnight woke me throbbing and when I got up the hangnail was all infected and sore and red. The next infection was about 6 days or so after that when a small scab on my head from hairspray or shampoo got infected a swoll up to the size of a small egg and my lymph glands down at the base of my head and neck on that one side were all swollen. I know that bacteria attracts to iron. With these infections I knew the lab results were probably not an error. I am always very healthy and not prone to infections. I was hoping for some input from others to see what they think this could be and I am sure it is rising again since my periods are getting less and further apart now since August. Some of the things I noticed near the time of the severe pain in my chest was very very tired the month of august napping a lot and felt nausea like morning sickness after eating. Also immediately after the pain I felt like I had to vomit and had heartburn and burping, also had a weird headache most everyday that month. I am sure it is iron overload of some sort but not hemochromatosis since the test were normal at 2 labs. I would love some input!!! I was not taking any vitamins or iron etc and not eating vast amount of red mean or spinach. Thanks!!!!! for the help :)

Sat, November 22, 2014 @ 1:53 PM

436. Dan P. wrote:
I am a 54 year old male. I was diagnosed a couple weeks ago with Hemochromatosis through a DNA test.
Blood test previous to DNA test showed saturation at 94% Ferritin level at 1500 as well as elevated liver serums (ast/sgot). I did one blood draw was suppose to draw one pint but started sweating badly and almost passed out at about 1/2 pint. It took almost a hour for me to stand without feeling like I would fall down. Is this normal or will it get easier? I am scheduled for one draw per week for the foreseeable future!

Sat, November 22, 2014 @ 8:07 PM

437. Brandon wrote:
Should I be worried if my ferritin level is 559? I have been having foot cramping so my Dr. Ordered magnesium and Ferritin. Checked my labs online, the mag is fine but the Ferritin is high. I and have not heard from my dr yet.

Mon, December 1, 2014 @ 4:56 PM

438. Stephanie Anderson wrote:
I'm concerned that my doctor is glazing over iron levels since I have hepatitis. Can you all help me with these numbers:

TIBC - 284
UIBC - 46
Iron - serum - 238
Iron Saturation 84

Fri, December 5, 2014 @ 12:45 AM

439. Pam wrote:
For Brandon- yes this is a high level. I recommend you go to the helpful forms and charts area in the index up above to the left and print out a copy of the physicians reference chart. Maybe two---one for you to keep. Ask your doc to run another test per the guidelines and interpret accordingly. I would also advise you to follow the pre-testing guidelines before re-testing. Best wishes.

Tue, December 9, 2014 @ 5:06 PM

440. Armen wrote:
I am 51, three years ago I made a blood test and my ferritin level was 450, I visited lots of clinics in Germany and nobody could give me a diagnosis, but I feel that something is wrong with me. My recent blood test result was ferritin level 650 and I have no idea how to handle this. Is there a specialized clinic for iron disorders where I can get the reasons and treatment? Anywhere in the world...

Sat, December 13, 2014 @ 5:27 AM

441. Pam wrote:
Armen, there is no specialized clinic that I am aware of. A serum ferritin in excess of normal could mean lots of things. I recommend printing off two copies of the physicians ref. cart and give one to your doc and ask to be screened accordingly.

Wed, December 17, 2014 @ 11:26 AM

442. Mickey wrote:
New to this website and so very grateful to have found it! I am a very young 60 year old and had late menopause at 57. I have osteoporosis, high CRP, vascular specific, heart palpitations and flutters for many years, adenomyosis, no libido, some hair loss, memory fog - and I look and feel relatively fine! Since 2009 my ALT/AST numbers have been elevated causing my doctor to order Iron panel, then DNA testing which confirmed homozygous for C282Y. I have been keeping the charts and my doctor says I am at the borderline where he can order phlebotomy but I only weigh 97 pounds but I need to be cautious and donate the minimal amount. My biggest concern is with saturation which went from 50 to 96 in two months and remains high with normal Ferritin 47-55:
April 2014: SI 137, TS% 52, TIBC 266, Ferritin 50
June 2014: SI 242, TS% 96, TIBC 252, Ferritin 47
Sept 2014: SI 218, TS% 93, TIBC 235, Ferritin 55
(I am expecting newest lab results any time now)
Update on Iron Avidity 2004 Nanogram says TS% can remain elevated while serum ferritin is normal or low. Frequently seen in patients who have become iron deficient from having more phlebotomies than necessary (I have not had any yet). However, in the book Exposing the Hidden Dangers of Iron, E. D. Weinberg states on p 217, patients with serum ferritin below 1000 with an accompanying TS% greater than 55 %, aggressive extraction is important.

Can someone also please tell me if the MRI to evaluate for iron overload should be with or without gadolinium contrast. I am getting very conflicting information. What will the contrast add to the report results?

Finally, my beta carotene is very high 176 out of 60-77 range. I understand BC increases iron absorption. Any thoughts?
Very grateful for all help.

Mon, December 22, 2014 @ 1:27 PM

443. Brandon wrote:
So my care provider did the following non-fasting tests after having a high ferritin level test of 559. The results are in the normal range. As pasted below.

IRON 87 ug/dL 38-153
TRANSFERRIN 257 mg/dL 200-370 Details

She advised that since I am on a Testorone supplement and have inflammation from fibromyalgia that this is not abnormal, and should be tested again in 6 months. Does this sound reasonable?

Fri, December 26, 2014 @ 11:34 PM

444. Donna wrote:
This website has been extremely helpful to me. I was diagnosed with Iron overload in July of 2013 after seeing a naturopath! She saved my life. I can not stress the importance of being your own advocate when it comes to your health and well being. If you are not getting the answers from your primary care or any other specialist then seek other options if you can. Naturopathic medicine is often made fun of, but trust me when I tell you that they think OUTSIDE the box and will dig for answers!!
I initially went to see her because I was diagnosed with AVN (Blood flow issue to my right hip, no known cause) about 3 years ago. I have always enjoyed running and was loving a new workout TurboFire when I began to experience hip pain and started to limp. After seeing an orthopedic doc and 2 MRI's (out of pocket, sigh) he diagnosed me with AVN and basically told me my only cure would eventually be a hip replacement!!! I am only 47 and was 44 at the time. I was so discouraged, however I did NOT give up.
My Naturopath found my ferritin was over 900 and suggested I see a GI doc who informed me that it was indeed genetic hemochromatosis (and most likely was what helped to put my Dad in his early grave at 55). I have been having weekly/bi-weekly phlebotomies since Aug and my levels are way down. Last check I was at 258 before the holidays. AND my hip pain has subsided. I was also going for hyperbaric oxygen treatment to try and force the blood flow to my hip. I am cautiously optimistic that I will one day be the active girl that I once was or at least able to work out daily doing low-impact.
NEVER GIVE UP ON YOURSELF and try to stay positive. It's not always easy, but it helps. Take care everyone.

Tue, December 30, 2014 @ 12:58 PM

445. Pam wrote:
Brandon, your fibro symptoms could actually be signs of HH. As previously suggested I recommend you print off two copies of the physician ref. chart. Ask your dr. To order a full iron panel per the chart and you have them done in a fasting state per the guidelines. Ask your dr. To use this chart to interpret results per the chart. Could be what they said, but the possibility of HH still exists. They can also look to the CDC for further information, which does reference the IDI. Regardless of cause ferritin at 1000 or more is extremely hazardous and you don't want to get there.

Wed, December 31, 2014 @ 6:35 AM

446. Tom Clayton, MD wrote:
A voice from the past:

I think that you should reconsider "normal" serum ferritin ranges, as above, as well as telling patients that their reference lab's determination of normal ranges may be wildly wrong. For example, saying that a NORMAL serum ferritin range for a woman is "30-350" or anywhere near the top number is nonsense. A number and 10x that number being a normal range means what?

Excess iron causes more problems then too little iron (in the big scheme of things) and as long as the Hemoglobin and Hematocrit are normal one does NOT need much stored iron to handle most common situations, such as ongoing blood loss in women of child bearing years, minor trauma, and illnesses that might retard red blood cell production and turnover.

Think of this. Will ANY high ferritin level be good if there is sudden and substantial blood loss? No, because it takes time, even many weeks to make enough new red blood cells depending on the magnitude of the loss. The amount of stored iron sufficient to make up for the loss is far less than 150.

So, I think that it is more useful to give a range of normal serum ferritin levels by saying that above a certain number (30) and below (80), in other words a much smaller range that anyone can use to modify either number that is PLENTY of stored iron; any more than that may have adverse effects on a molecular level.

Thu, January 1, 2015 @ 6:57 AM

447. Pam wrote:
Dear dr. Clayton: I appreciate your comments and wish the whole medical community, the labs and so forth would re-align the "normal" ranges and be a standard, but it's probably not going to happen. I am a blogger who has a loved one with this condition and find the information provided here by the IDI very beneficial. I try to educate as many people as I can about this potentially fatal disorder when left undiagnosed and un-treated and this is all I can do. Sounds like you are up on this disorder and that is a good thing!

Fri, January 2, 2015 @ 9:14 AM

448. cleatus wrote:
59 yr male Scotch/Irish/German descent. Ferritin, HgB and Sat. levels very high at discovery, no organ damage thank God
I keep my Ferritin below 75
Once your levels are normal keep up your maintanence . It is easy to let it slide once you begin to feel better. Stands to reason, who wants to get stuck with a big needle?
In South Carolina there are blood donation sites called The Blood Connection, the nurses are professional and very good at finding "hard to get veins" (mine) and they are free.
I have been giving for 6 years - the first year was rough. Life is much better. I no longer set off the metal detectors. (joking)
Will continue ( 4 x p/ yr.) the rest of my life.
Watch your diet, processed foods have been "enriched" and "fortified" with iron. Particulary cereals.
Symptoms can vary, mine were severe muscle pain in the arms and thighs (not the joints) .
My trade aggravated the symptoms with a lot of crawling under homes. I have left that to younger workers.
Take something special for the blood donation staff, it is a tough job having to stick people all day. I take fresh fruits in season. Nothing beats a fresh S.C. peach.
My grandson tells me I have high Hobgoblins in my blood, must be something left over from the 70's :^)
You can get thru this

Sun, January 4, 2015 @ 8:36 PM

449. Anna Sawicka wrote:
I have a problem with my blood test results. I have had a high iron level for many years. Now it is 373 when the range is from 70 to 170 in my lab. My ferritine level is extremely low- it is 17 and the range is from 7 to 282., transferine is at 113. Hemoglobine is 15 and the rest is good too. I've noticed that whenever my ferritne gets lower the level of iron gets higher. I think I might also have some problems with my thyroid. Ft3 is at 40% and ft4 at 70%. Ths is 1.87. Could you kindly suggest some possible interpretation?
I'm from Poland and I've been having some trouble finding a good specialist.
Thank you

Mon, January 5, 2015 @ 12:54 PM

450. MMW wrote:
Does anyone know how soon after a phlebotomy treatment should one check the iron labs? Is it best to weight a few weeks for ferritin can come out of tissues or will the labs reflect lowered iron levels from phlebotomy immediately?
Thanks, MMW

Mon, January 12, 2015 @ 5:13 PM

451. Chris H. In VA wrote:
Any help please?
I'm a 43 year old otherwise healthy white male. Don't smoke, don't drink.
I was diagnosed with Hemochromatosis in September 2014 after a completely unrelated blood test showed high levels of iron. I went to a Hematologist on September 26, 2014 and had ferritin levels at 1131 and was told to go do weekly bloodletting. I did.

2 months later, on November 26, 2014, after 8 blood donations, my ferritin was at 465. I was happy with that number and glad it was going down so fast. Up until this point I had no problems at all. (I'm currently at 303)

Then out of nowhere, I started getting heart palpitations. I'd had them randomly before from stress or anxiety or whatever the typical reason is that they come on. They usually last a week or 2 and go away magically. So I wasn't too worried. Then one day at work while I was bending down to pick a tool off the floor of a customers house I was in, I felt a painful pop....almost like a car backfire in my chest during a palpitation. It scared the living hell out of me. I immediately started to panic because it felt like what I had always imagined a heart attack would feel like. I went out to my van and sat for about 10 minutes, scared to death. I was done with that job luckily and called in to my shop and said I was done for the day. Went straight to the ER where they ran a bunch of tests and came away with nothing, saying everything looked good, but to follow up with a cardiologist.
The palpitations (heart fluttering) continued the next day ...a few seconds here or there randomly and for about the next 5 days. Finally I got to go see the cardiologist where he did a stress test, EKG and scheduled me for a echocardiogram a few days after those tests. Results for all 3 were normal.

I still get the palpitations and I have gotten the "hard backfire" heartbeat a few times since then. It's very disconcerting and scares me to death every time. It takes my breath away even though it lasts a second. It makes me shaky and scared that another one is coming or that one time it's not going to stop.
I'm currently on beta blockers (Atenolol) but have only been on them for about 3 days. Ironically, I have been home all weekend and not had 1 flutter at all. I went for a quick walk and had no issues. However if I run up the stairs or do any type of physical exertion, there's a good chance the flutters will start. They seem to only come when my heart rate gets elevated or if I'm hurrying up to finish a job (stress?)

Does anybody have any similar symptoms or suggestions/opinions on what could be the cause of this or any possible remedies?

I've just concluded on my own that maybe the bloodletting has caused deficiencies of some kind? Maybe lower oxygen in my blood? I have no idea. If anybody can help, I'll listen to anything. Almost 2 months of being scared every day 24/7 that it's going to happen again, is enough.
Thank you in advance!

Mon, January 12, 2015 @ 7:19 PM

452. Chris H. In VA wrote:
Just wanted to comment on my own comment right above this one.

Last night after I wrote my comment, I decided to take a hot bath in Epsom salts. I had researched and found that the magnesium in Epsom salt can actually be responsible for heart arrythmia if you are deficient of magnesium.
I soaked almost completely submerged for about 15 minutes. I had the greatest night of sleep I've had in along time. I awoke this morning feeling stronger in my chest as opposed to shaky or weak. I didn't feel like here was a palpitation looming around the corner.
It's now 8:20pm and I still haven't had a single flutter or palpitation today which is amazing in itself. I just got done soaking in Epsom salt again and I think I have found a new best friend. I'm hoping I was just deficient in magnesium and that tomorrow it doesn't come back.....but I just wanted to let anybody reading know that magnesium did amazing wonders for me. Also, I'm going to stop theta blockers and I also read that the magnesium you take needs to be topical (Epsom salt, magnesium oil, magnesium gel) not the magnesium supplements that you can buy in a store. The supplements are from magnesium "oxide" and apparently you only retain about 4-5% of the magnesium. The doctor I heard from said that magnesium supplements are better used as a laxative than for magnesium.

So take any of this as you wish. Just sharing my experience with others who may be dealing with similar symptoms.

Tue, January 13, 2015 @ 7:25 PM

453. C Constantinou wrote:
On discovering my iron was low at 15 (6 - 26) and ferritin was 36 (13-150) .After supplementing with Ferrous fumarate 210mg 1 x day, iron decreased to 12 (6 - 26) and ferritin increased to 250 (13-150). Vit D and B12 were a good high range after supplementation. I tested negative for thyroid antibodies and thyroglobulin antibodies were under 20 (0 - 20).
Has anyone any suggestions?

Fri, January 16, 2015 @ 11:13 AM

454. Shanen wrote:
I am 42 and have been having a backwards period where I bleeding 25 days a month and this last Dec I bled from the 9th of Dec and still am then 17th of Dec I went to urgent care cause I went through 15 outfits and passing clots so big that I thought it was my liver falling out they checked my iron levels and it was 10.6 then when I went in for my follow up 2 days later my iron levels went down to 9.7 they put me on iron pills 650mg and by the 29th I went to get my sleep test done and had to get an iron infusion treatment before they could do the study cause my iron levels went down to 6.2 so my sleep doctor ordered infusion treatments once a week I had my 2nd treatment and came home took 2 of my iron pills I forgot to take them out of the daily pills that I take and just started feeling like I did when I had my kemo treatments and so exhausted can I die from to much iron?

Sun, January 18, 2015 @ 4:27 AM

455. Shanen wrote:
I am 42 and have been having a backwards period where I bleeding 25 days a month and this last Dec I bled from the 9th of Dec and still am then 17th of Dec I went to urgent care cause I went through 15 outfits and passing clots so big that I thought it was my liver falling out they checked my iron levels and it was 10.6 then when I went in for my follow up 2 days later my iron levels went down to 9.7 they put me on iron pills 650mg and by the 29th I went to get my sleep test done and had to get an iron infusion treatment before they could do the study cause my iron levels went down to 6.2 so my sleep doctor ordered infusion treatments once a week I had my 2nd treatment and came home took 2 of my iron pills I forgot to take them out of the daily pills that I take and just started feeling like I did when I had my kemo treatments and so exhausted can I die from to much iron? I hate ihn Oregon state insurance they denied a hysterectomy 2 times with 5 doctors and councilors backing me 100% then when my iron levels went down to 6.2 and a depo shot now it is approved.

Sun, January 18, 2015 @ 4:39 AM

456. Roger wrote:
Scientists design experimental treatment for iron-overload diseases: minihepcidins

Mon, January 19, 2015 @ 2:54 PM

457. Hemochromatosis wrote:
I am a 50 y/o white male of German/Irish decent that was diagnosed with heterozygous hemochromatosis. I can control the ferritin and serum iron at will. Recently had a T2 Star MRI, side echo and turbo, MY PITUITARY IS FULL OF IRON DEPOSITS.

I know Dr. Singh in San Diego has conducted stem cell implantation by accessing the pituitary via the nasal cavity. There is no way I am going to use deferiprone or another chelator.

Any new procedures to get the iron off the pituitary?

Wed, January 28, 2015 @ 8:58 PM

458. Joanne wrote:
I am a 42 yr female. I was a vegetarian/vegan for 19 yrs. June of 2014 I decided to eat meat again following a paleo way of eating. I am also being treated for possible Lyme disease and hypothyroidism. All of a sudden after eating meat again my iron started climbing, however, I am also taking abx and herbs for Lyme and started those at the end of aug 2014. I've never had a high iron problem before.

Sept 2014 results - taking abx for Lyme
Tibc 252
Uibc 132
Serum 120
Sat 48
Ferritin 77

Jan 2015 - still on abx but different than sept
Tibc 209
Uibc 45
Serum 164
Sat 78
Ferritin 121

My Lyme doc immediately did DNA test and I am a carrier for H63D. Saw a hematologist who wasn't convinced I had HH. I knew what I needed to do and I gave blood 2 days after my jan results.
Hematologist ran iron panel again (now this was 2 weeks after donating) and not fasting.

Serum 46
Tibc 291
Sat 15.8
Uibc 245
Ferritin 57

I wasn't expecting such a big drop! I have no regrets about donating! I knew what I needed too do. I have another appt with another hem the first week of march becasue I want another opinion.
The doc that is treating me for Lyme thinks the Lyme treatment maybe affecting my iron metabolism being that everything goes through the liver.

Any thoughts? Obviously I caught it at the very beginning.


Thu, February 12, 2015 @ 5:05 PM

459. Lynn wrote:
I recently went to a gastroenterologist who specializes in the treatment of celiac disease, which I have. Based on labs, she tells me I have iron overload and has ordered additional labs to confirm if I have hemochromatosis. I have been struggling with severe low back pain since last June, and no one can make it stop or determine what is causing it (been to 2 different types of chiropractors, been to my orthopedic surgeon - xray, MRI and labs to test for inflammation all normal, been to pain management dr for sacroiliac joint injection, taken a round of oral steroids, massage therapy, yoga practice aimed at the low back). Is this the type of joint pain symptomatic of hemochromatosis?

Mon, February 16, 2015 @ 10:38 PM

460. nasos wrote:
From blood transfusion in 2010 I developed iron overload. To avoid the pill that the doctor was given me I collected information. From that I created a diet that has helped me lower ferritin from 607 to 294 in 6 months. I have created a web site to give this
diet information free to whoever needs it. Is there any interest to that? I do not want to spend money unless the info is needed.

Fri, February 20, 2015 @ 9:44 AM

461. nasos wrote:
Sorry my email is lowerferritin@yahoo.com. thank you

Fri, February 20, 2015 @ 9:48 AM

462. Joy wrote:
Three years ago my father passed away. A month later my mom got sick, after about a year of tests she was diagnosed with Hemochromatosis. Her initial levels were over 1000, she got books changed her diet and started having phlebotomies. She was able to bring her levels way down over a six month period with regular treatments. 8 months ago she came to live with me in Florida and has not had a phlebotomy in a year. She has been unable to secure medical insurance and has spent months repeatedly trying to access assistance through multiple social services and universal health care to no avail. Today she went to a clinic to see if they could oversee her treatment. Her levels are too high and they are referring her to a specialist.

I am working a full time job, and two part time jobs while going to school to support us. She needs treatment, her joints are swelling and she has lost 20 pounds in the past two months.

Does anyone have any ideas on how to help me finance her medical care without medical insurance?
Thank you, Joy

Mon, February 23, 2015 @ 8:20 PM

463. Julie Edwards McCartney wrote:
I have been an RN 46 Years, currently Retired. I have never heard of "Hemochromatosis!!" I have had just been Diagnosed..my Primary MD, was"out"..I have had a Chronic Fungal Infection?? Unknown cause..on one Foot, Groin..1year. I seldom seek Medical Treatment..by Oct. 2014..I finally saw a N.P, she ran several "Blood Tests"..Nov. 2014 my Primary MD, called and referred me to an Hemotologist...re "Issues the NP found on my Lab Work"...Again,I "took this information".. "Lightly!!" I, have a R Hip that needs total Replacement ( I have dealt with 3 years)..EXTREMELY!! Painful Knees!! And !! Very Painful L Ankle(torn Ligament) So I have been "very inactive".. The Past 3 years!! Finally saw a Hemotogist.. 2 weeksago. Feb. 27, 2015.. I, was informed I have a "Iron Blood Level.. 3,400!!" inherited from both my Parents!! (Both Deceased, Heart Attacks, Dialysis,) Tomorrow, I am having a "Liver Ultasound"...I am STUNNED!! Found this Blog, helpful, and Frightening I start "Blood Letting"(words told to Me). No one(family, friends) concerned..AT ALL!! "This Diagnosis has been around 50 Yrs ..just Donate Blood" No Support!! And Alone..even with a Large "IRISH/ SWEDISH" Family..So many Family Members, have Died, Heart Attacks..in their 40's , Liver Disease!! I have so many questions!! Is this "Hemochomotosis" NEW??!! or is "Iron Overload New?" Is the Treatment "New"....How!!! DID I AN RN OF 46 years!! (as well as my Best Friend, also a 40 year RN) MISS "Hemochomotosis!!!" I, have to admit, I do understand, MORE EACH DAY ( it has only been 5 Days!!) It, to me, "Sound very Serious!!" my Hemotogist's plan..Phlebotomies ...2 times a month, with followup Bloodwork..to me, this seems too little with a Ferritin level of 3400!!?? I will know..Liver Ultrasound results mid March!! Again, "when did this High Iron Level become well-known??" Possible Cancer in the Liver..count over 1000!!?? Yes, I have been tired, irritable, high "pain Scale in my joints", I just thought was due to "some kind of Arthritis"..NOW I AM CONCERNED!! Thank you Julie

Thu, March 5, 2015 @ 12:29 AM

464. Julie Edwards McCartney wrote:
Any information would be very Helpful!! Is this "Serious???" Again, everyone I have talked to "No Big Deal!!!" Just have "Some Blood Drawn" Where do I find advice on the "Cookbook??" I, know to stay away from "Iron Pills" " Vitamin c" "Drink Cofee, Tea or Milk with Meals. Should I postpone a "Total Replacement??" , total Knee Replacement?? I have donated Blood 1 time..years ago..my Blood Pressure became extremely LOW!! Fatigued for several months!! My Blood Pressure tends to always be Low!! I, have had "Chest Pains",,, have a "Sress test" soon. Also, very Tender!! Upper R Abdomen for several years. (this should be answered by Liver Ultatasound..Tomorrow). I am in a Wheelchair,...pending R hip Surgery...and severe Joint Pain!! All these years my Primary MD....never put "2+ 2" together!!!" Finally, on Inhalers for years.."Shortness of Breath"..was told at 50 Yrs..had "Asthma!!" Nightmare..now in Hindsight..all these years..misdiagnosed!!! EMail..Me..with any info..thanks again..Julie

Thu, March 5, 2015 @ 1:28 AM

465. Pam wrote:
Read everything on this web-site. You need a hematologist familiar with this disorder. Also see the partner site at hemochromatosis.org. Find the Physicians Diagnosis Chart and compare to your numbers. Ask the hematologist to follow these guidelines for treatment. Only you and your dr.'s can decide whether to postpone surgery or not. If it were me, though, knowing that extremely high ferritin can actually promote infection, I might want to hold off and seek out a hematologist that can order the DRCA treatment. It will get the iron out quicker. Best wishes.

Tue, March 10, 2015 @ 9:21 AM

466. Ludmilla wrote:
Hey everyone,

I have been feeling really bad lately so I did some blood work which got me even more confused. I'd appreciate if anyone could shed some light before my hematologist appointment in April.

I have attroffic gastritis, thus B12 defficiency. I take daily sublingual tablets and my B12 levels are back to normal

Dizziness, shortness of breath, arrithmia, artralgia (joint pain), nausea and fatigue

Blood test results
Hemoglobin 10
Serum ferritin 4.2
Serum iron 254
Transferrin 316
TIBC 394
LIBC 140
TS 64%

How can I have iron defficiency and have iron overload at the same time?

Thu, March 12, 2015 @ 7:03 PM

467. Pam wrote:
Find the helpful article on this website titled "iron overload with anemia". Good luck!

Fri, March 13, 2015 @ 3:01 PM

468. nasos wrote:
This site is now open. The diet info is free. Contains foods, meals, nutrition tables and more. All free. Visit us.

Sat, March 14, 2015 @ 4:24 PM

469. nasos wrote:
The web site myironoverloaddiet.com is now open.
Free diet includes foods, meals, nutrition tables and more.
All free. Visit us. email: lowerferritin@ yahoo.com

Sat, March 14, 2015 @ 4:28 PM

470. nasos wrote:
I have no ways of reaching people who need the diet. Anyone can assist in this matter so that the people who needed can benefit. Thank you.

Tue, March 17, 2015 @ 7:56 AM

471. LISALANETTE wrote:
So here is my dilemma doctors in my area are clueless. In October (first time ever iron tested, I am 42)...this is what came through and has never been mentioned to me.
Iron level. 81 ug/Dl
%saturation 16%
TIBC. 500 ug/Dl

Iron level 116 ug/Dl
19% saturation
TIBC. 618 ug/Dl
Other than TIBC being highlighted as high no doctor (and I've seen several) has ever mentioned this. It seems very high and increasing, should I be worried?

Tue, March 17, 2015 @ 10:12 AM

472. LISALANETTE wrote:
Praying someone responds to my previous post. Feel desperate....thank you

Wed, March 18, 2015 @ 12:52 PM

473. nasos wrote:
To LISA. If TIBC is ferritin see blog 469.nasos. I was at 607 and in 6
months i am at 208 heading down to 70. The diet is for iron overlosd
people like me.

Thu, March 19, 2015 @ 8:26 AM

474. Mike Lampert wrote:
Do I have the record? I was diagnosed in Jan. of 2005. i am a 52 yr. old male now. My Ferritin count was 5659, iron saturation was at 99%, Iron was at 213, my bilirubin count was 1.55. My oncologist thought these readings were a mistake so she had me redo my blood work. It all came back pretty much spot on. I started doing 3 phlebotomy's a week. That last ed about a month because I was getting migraines,etc. I went to 2 a week, to one,etc. etc. I did a total diet change. No red meat, organic cereal, organic pasta, basicially reading iron levels on labels. Now I stay around 200 for feretin. I phlebotomy about once every 2-3 months. I have done around 240 of them. Too bad the Red Cross couldn't use my donations. I did have a liver biopsy back in 2005. There was a thin dark line around my whole liver. Iron deposits. I have dead bone in both knees and extreme knuckle joint pain. Sometimes depression. It hasn't been easy. When I go to the onocology office and see all the chemo patients, I tell myself it's not that bad. I do have quite the scar tissue build up on both arms. That's my story. I am located in Central NY.

Thu, March 19, 2015 @ 4:40 PM

475. Joe Kurmaskie wrote:
I'm a 49 yr old athlete ( outdoor adventure writer who has bicycled all over the world) non smoker/non-drinker diagnosed about a month ago with HH. No symptoms, just a routine annual physical. Doctor caught it from a slightly elevated liver enzyme, ran more tests ferritin came back 2000 and 85 percent saturation. I'm on my 4th phlebotomy. Gonna have them weekly for the next year or more. My diet was already good but I dropped all red meat and all processed foods as well as refined sugars. This disorder is not rare, but rather, under-diagnosed. The screening for this needs to change. My plan is to keep going for the blood draws and hope for the best. My ultrsound came back with full liver functions and clear ducts - but the liver speciialist still wanted to do a biospy - I challenged her politely , since I helped my sister study thru med school, I had information on my side. I asked her what the course of action would be with or without the biopsy. She said it would be the same- and that I would be screened every six months for cancers. I then asked if there wasn't something between the buckshot of an ultrasound that rules out cancer etc. and the biopsy to determine liver damage specific - She gave it thought and said,"Actually, there is and it's probably 90 percent of what a biopsy would offer. It's called fiberscan and we use it for hep-c patients to measure the fiber level and stiffness of the liver - which is exactly what I'm looking for in HH patients. There's no validity statistcially for it b/c we haven't used it on a large test group of HH, but it's looking for the same thing. The chart should equate roughly and we'll not need a biopsy." So we did the test - simply machine - bounces intense soundwaves off the liver. No cutting, not fuss. I came up 2.5 on scle of 1-4 pre cirrohsis/ some scarring. No opration. I would strongly recommend all HH patinets ask for this before opting for a biopsy.
Also, The lack of dignosis for the 1 million plus folks walking around with it in the USA must change - rare vs under diagnosed are two different things and doctors and the public needs to understand that. My enzymes were slightly elevated 5-6 years ago but another doctor said it was probably just a blip since everything else was in perfect shape. This is where the system failed me. I aim to use my platform as a bestseller writer to change some of things. First, I'm gonna reach out to all the associations that advocate for HH and work with them. Second, I've written the AMA and the neonatal metabolic bloodtesting section here in Oregon to discuss getting this as part of the blood screenings done at birth for european man and women. It makes sense to catch it early so that young people don't destroy their livers with drinking in their 20s and that people can take up preventative med early and save lives and money. Next, the fact that I'm 50 patients worth of blood this year and the red cross only has a few pilot programs is a crime. They throw my blood away each week - this is good useful blood. I'm in the process of filling out paperwork to get it donated but it's ridiculous that this is not a mandate of the red cross - to reach out and locate potential HH folks, and save lives coming and going - thru the donating/bloodletting and that the HH person's blood can now go and help save another. Anyway, I had about 20 minutes of feeling sorry for myself and facing this thing down - but I've never been very good at being that guy - so I'm on a mission now to get this disorder some exposure and help save folks walking around with it that don't know they have it. Anyone who wants to contact me, I'm at mtcowboy@teleport.com or just google metal cowboy - I know, ironic as hell that the book that started my career and is my brand and nickname focuses on metal. But life is like that ;-)

Wed, March 25, 2015 @ 6:31 PM

476. Mike Lampert wrote:
A correction from me. The line around my liver was showing after an ultrasound. Then I did the liver biospy. Also my favorite band is Black Sabbath. So when the nurse kept saying"here is the Iron Man again" ,every time I came in to get drained. I thought it was pretty funny. Also as Metal Cowboy said, it is a shame to throw all that blood away. I did connect my local Red Cross and they could not use my blood.

Fri, March 27, 2015 @ 10:33 AM

477. nasos wrote:
For free iron overload diet visit

Sat, March 28, 2015 @ 11:36 AM

478. nasos wrote:
Thank you all for visiting my website. I hope you get as much help as I have from this diet. In two weeks I will post my new ferritin numbers. For the
future I have requests to add a page for updates and I will do so.
Thank you again and spread this info to others as I know many needed.

Wed, April 1, 2015 @ 4:22 PM

479. Joe Kurmaskie wrote:
New Hereditary Hemochromatosis Awareness and Action Network is launching. Call for help, involvement.

Long story short, they gave the wrong guy this disorder, or the right one depending on how you look at it.

As a journalist (20 yrs, national AP awards) bestselling author, performer and former executive director for several project based charities, I'm in a position to impact in four areas:
1. Public awareness - newspaper, magazine articles, online(Huffington post, Salon, etc.) a twitter/TV/Cable PSA campaign, appearances on network and cable etc. - will use upcoming book tour schedules to talk about HH on local, regional and Today Show, Jon Stewart, CNN etc. My story has been sold to hollywood and is in development as film and TV series. Will use this platform to increase awareness and enlist celebrities to do the same.
2. The way HH is screened, diagnosed and treated. Call for ferritin blood test put back on initial CBC panel, increase screening of high risk population, earlier screening and increase medical community education with doc focused campaign - most up to date ways to diagnose and treat (ex: biopsy alternatives/options)
3. Blood collection and use. Lobby and work with medical systems, blood banks and Red Cross to aggressively seek out HH blood eliminate outdate variances and red tape. Red Cross directed marketing campaign for screening and collection. Decrease the volume of HH blood being tossed out by hospitals nationwide.
4. Annual Iron It Out Bicycle Ride For HH awareness and fundraiser.
I've spent several months planning and researching, now want to crowd source for ideas, involvement, get others motivated, give hope and create a lasting legacy. I am doing this b/c even though I'm in overload (1800) I'm asymptomatic, full of energy it's what the universe and my humanity requires of me and there's very huge need as this is the number one generic blood disorder no one's heard about!
I come from a medical family and have contacted a number of high profile members of the medical community for involvement. Please share with me other medical names i should recruit.
We want to stick to these 4 areas of impact: Please join the network and share ideas with me @
direct email mtcowboy@teleport.com

Tue, April 14, 2015 @ 1:45 PM

480. Pam wrote:
Great that you got diagnosed, Joe, and I hope with the inspiration and determination you seem to have that you can accomplish the goals you've set forth above. I'd first send a message to Cheryl Garrison, the Executive Director at the IDI. I am sure she can hook you up with other resources. Another good resource would be Sandra Thomas at the American Hemochromatosis Society and perhaps even Stephen Cobb of Celtic Curse.org. Best wishes and hope you can meet your goals!

Tue, April 14, 2015 @ 6:20 PM

481. Roxanne wrote:
My level was over 1000. I have had one phlebotomy. My symptoms go back a long time and they included:

Red face
Bright red face (2 months prior to diagnosis)
Shocking myself and others even when not exposed to carpet. Sometimes several times a day
Saliva stones
Muscle weakness
Pain in larger joints
Gastro problems
Neurological problems like poor penmanship

After first treatment, the red face was gone. Because I had already made many dietary changes trying to make myself feel better, I feel like a million bucks.

Thu, April 16, 2015 @ 7:02 PM

482. Tracy wrote:
I was diagnosed several months ago when my doctor noticed my Ferritin level was at 2700. I begain weekly phlebotomies and after 8 weeks am at 450. The only problem is I am beginning to feel fatigued and lacking energy. Any suggestions on how to overcome the effects of the weekly phlebotomy? I am hoping that i am almost done, but Dr. says until i have 2 weeks in a row at 100 or lower, we will continue at this pace. Glad this website exists, I did alot of reading when I was first diagnosed and it helped me understand the disease.

Tue, April 28, 2015 @ 1:38 PM

483. James White wrote:
i have just been to the doctors and was told my iron levels where at 1038 what damage could this do

Fri, May 1, 2015 @ 5:47 AM

484. Brandon wrote:
I posted last December about my ferritin level being at 559. I have no idea what is is now. Recently, over the past 2.5 months, I have been having extreme exhaustion, to the point that after sleeping from 10pm and waking around 6:30 or 7am, I was getting tired around 11:30 and napping. Now I am exhausted around 9am and going back to sleep even after a cup of coffee. So I have been napping for an hour or two and again by about 2:30 or 3pm would be exhausted again and nap some more. I added it up and for several days I slept a total of 11 hours a day. I have since made an appointment and gone to see my doctor at the VA clinic in my town. She said that since I have low vitamin D she is recommending I bump,it from 1000IU per day to 5000IU. While awaiting my RX in the mail I upped my over the counter D3 to 3000iu a day. It hasn't helped. I had fasting blood drawn on April 28th. The results that are abnormal are: My cholesterol, which has been high for years remains high.
CHOLESTEROL 318 High mg/dL 40
TRIGLYCERIDE 319 High mg/dL <150
Also this:
FOLATE 17.7 High ng/mL 3.1-17.5
My Dr. did not retest the ferritin. I have also had some bowel issues.(pale stools, but not too bad and not white.) Still waiting to hear back from my Dr. I suspect a liver thing. 0plus I am worried because my father lost a kidney in his 40s and died due to pancreatic cancer at age 62. My mom recently told me my dad had a lot of the same chronic pain as I have even as a young man. Idk. I mainly needed to vent here. I will be waiting to hear back from my Dr. Sorry this is so long.


Tue, May 5, 2015 @ 9:05 PM

485. Tari wrote:
Hello Everyone,
I am a 55 , female, post meopausal due to hystorecotomy in 1998, I have the double gene mutation and was diagnosed in 2005. I am of dutch and fench descent. My feretin levels were at 1101 when I was diagnosed which was an extremely long and audious process. My hematologist is a cancer speacilst and I think I probrably know more about my condition then he does. The neares doctor to me that speacilalizes int his condition is in Brimigham AL about 400 miles away from me. I live ne of Atlanta, GA. I went in for phlebotomy yesterday ( I have had so many over the years I have lost cont) but as the procedure was ending and the nurse was taking out the needle I passed out. I told I didnt fell well and I thought I was going to faint and that was it. I woke up to 4 nurses working on me trying to stop the bleeding at the puncture site , holding a fan on me and they ad me layed bakc in the chair with my feet elevated. Has any one else ever experienced this. It was very frightening. Although I have experienced aniexty before I have never had this type of reaction. I was not able to drive my self home and had to have my daughter come and take me home. Iwas totally exhausted for the rest of the day. Although I feel better today I dont feel 100 percent. I am dont eat beef and limit and iron in my diet in any way I can. My ferritin level increased from 90 to 385 over a year wit hout any phlebotomies. I have been getting them now every three months for the last year and me levels yesterday were 327
I beleive I should be on a more aggressive course of treatment but my doctor is not open to my opinions. has any one else ever had a fainting problem during or after a phlebotomy

Sat, May 9, 2015 @ 8:50 AM

486. Liz wrote:
My situation is not typical at all. I am Thalassemia minor and iron overloaded without the HH gene. My ferritin is 900 and I couldn't do phlebotomy because my CBC count is lower than 11. I have been on NASH diet and my liver function is normal. Did liver biopsy and ct and mri for liver and no other issues besides iron overloaded. I have experienced stomach pain and it comes and goes.

My doctor said 900 is not too bad. I am waiting for the FDA to approve the medicine that will reduce iron.

I am an Asian.

Wed, May 13, 2015 @ 11:57 AM

487. Janis Haertling wrote:
I've been dealing with HH since 2003. H63D homo. The horrible array of doctors you guys have and are dealing with is the same in Dallas, TX. I've been thru too many to count. Currently I have an excellent GP but the HH is ignored. I am seeing a doctor off the insurance and receiving EDTA pushes. Boy are they helping.

I say excellent GP because of all the other problems I've had that may or may not have been caused by HH. In 2005 I started swelling up like a balloon, 4+ pitting edema. Gained 80 lbs. Went from doctor to doctor to try to find an answer, ignoring my HH for 5 years as I pursued my quest, and all they could say is "you're fat". Turns out there were two major problems.

First, spondylolisthesis where my bottom lumbar disc broke loose from both sides of my spine and moved over the nerves in my legs. I had to buy a walker to get around I was in such pain, Finally got that diagnosed and had surgery with two bolts in my back.

Second, my pancreas was leaking like a sieve, and they don't call it edema, they call it anasarka (swelling). My body formed what is called a pseudo cyst on the tail of the pancreas to try to stop the leaking. It grew to grapefruit size and invaded my stomach. Again, had major surgery where they removed 2/3rds of pancreas, spleen and part of stomach. Got out of the hospital Dec15th 2014, still not fully recovered. Now insulin dependent type 1 diabetic because pancreas stopped working at all.

With HH being ignored and the doc that helped me is not concerned about this area, I am seeing an off insurance doctor for EDTA chelation, which is a 2nd choice of treatment for HH, and it is helping a lot.

Supplements I suggest strongly: milk thistle, lecithin, L-carnosine, and lactoferrin.

This is serious business, research all you can and get a good doctor where ever you have to go and whatever the cost.

Sun, May 17, 2015 @ 8:15 PM

488. nasos wrote:
In Jan 2014 my ferritin was 607. I could not give blood. My doctor wanted me to take the Exjade pill. Second opinion told me to avoid the pill. My only option was diet. I collected information and created a diet which lower my ferritin to
208 in Feb 2015. I have the diet info In my website myironoverloaddiet.
It contains the foods, the recipes, the nutrition tables and more.
The best part is that is all FREE. Visit my site and see if you can find help.

Tue, May 19, 2015 @ 11:46 AM

489. jbh wrote:
My 16 year old son has iron of 233 (high) and ferritin of 21 (low) and a transferrin saturation of 60.84%. I wrote to the institute that manages this site and they indicated he may have iron avidity. Does anyone on this forum know what would cause this in a child? Is it anything to be concerned about? All opinions and information welcome!

Thu, May 21, 2015 @ 1:52 PM

490. Ernie wrote:
Hi Tracy (Comment 482). Your ferritin drop has been remarkably fast. You have most probably bled yourself into a temporary anaemic state and thus the reson for feeling fatigued. I suggest you check your hematocrit and heamoglobin levels.

Maybe time to consider phlebotomy only every second week under the desired ferritin level is reached.

I am no doctor but a fellow sufferer of HH.

Tue, May 26, 2015 @ 7:00 PM

491. Floyd wrote:
I have been diagnosed with HH for about 5 years when I had a liver biopsy. I am 66 years old and have type 2 diabetes. I am on insulin. For years I have been plagued with deep fatigue and have profound arthritis in ankles and feet. I have had to give up most physical activity and hobbies. At times I just want to go to bed. The most acute pain is in my feet, but more often now I just feel bad all over. I take a light dosage of pain meds without which I don't believer I could continue to work. I just don't know how long I can continue to work full time. I was hoping I could reach 70, but have my doubts now. Are there any tests that can tell me how advanced this disease is? I am under the care of a cardiologist as well as a hematologist, but they haven't really indicated how bad it is. At my age, I have important decisions to make about retirement and one of the most important questions is how long I expect to live. Are there any tests that can give me a clue as to how advanced it is? I just know I am doing worst than only 6 months ago. Thank you! FEK

Mon, June 1, 2015 @ 11:00 AM

492. MARY KLUG wrote:

Wed, June 3, 2015 @ 11:28 AM

493. Steve Nantz wrote:
I had iron ferritin level of over 6500 when I was first diagnose. Anyone else heard of anything that high? I don't know how long it was that bad... today I'm worried about neurological effects. Thanks and good luck.... Steve

Fri, June 5, 2015 @ 2:51 AM

494. Baudene M&#252;ller wrote:

i hope someone can help me. .. my mom is 53 and have very high iron levels . She just receive her result back again and its almost 1900!!! 😠 is there anything she can do too bring it down ?

She has this high iron problem for 3yrs and also twice months she goes to a blood bank.. but her iron levels does not come down!!!

i am very scared for her and her doctor says there is nothing they can.. i dont belive him. . She also avoids certain foods that bring her iron up . She also lostalalmost 16kg but nothing helps. .. she feels weaker by the day..

Wed, June 10, 2015 @ 2:08 PM

495. angie wrote:
42 yr old female
last couple of years ferritin levels run low on and off.
had hysterectomy end of last year.
3 months later my iron serum(194) and sat.(63%) now high.
uibc low(112). ferritin at 23. no iron supplements since hysterectomy.
anyone else have this?

Thu, June 11, 2015 @ 10:41 PM

496. nasos wrote:
Test on Jun 23/2015 had ferritin at 188 even though I tried different foods that
impaired the reduction. Many visit the website but I do not see any feedback.
So I wonder is any out there that is trying the diet. May not seem to be easy but think we have our lives on our hands. Another thing. Think about those people with food allergies and can not eat any of that. I know people who can eat only 3-4 vegetables without pain. Same vegetables 3 times a day every day. Think about it. This diet for us has some variety. Someone emailed me that he eats just about the same foods chicken and fish but the ferritin is going up. While all fish is very health only two that I know have zero iron. The can salmon in the diet and some frozen Cod pieces and that in limited amount. For us is not only what food we eat but how much of it matters. The iron in the foods of the diet is shown in every meals nutrition
table. One can not eat a meal with zero iron and then he eat vegetables
and bread to satisfy himself. The diet is carefully calculated and the amounts must be followed or the diet will not be effective. If You go to the
web site be prepared to study the information not just glance at it.

Sun, June 28, 2015 @ 11:08 AM

497. Pam wrote:
Reply to no. 494 above. Do you mean serum iron or serum ferritin is at 1900? If it is serum ferritin, protocol would be twice weekly blood donations if tolerable, until under 1000, then once weekly. This is outlined in the physician diagnosis algorithm found elsewhere on this website. You will find it under the helpful forms and chart links. Good luck!

Mon, June 29, 2015 @ 1:50 PM

498. Pam wrote:
Reply to no. 494 above. Do you mean serum iron or serum ferritin is at 1900? If it is serum ferritin, protocol would be twice weekly blood donations if tolerable, until under 1000, then once weekly. This is outlined in the physician diagnosis algorithm found elsewhere on this website. You will find it under the helpful forms and chart links. Good luck!

Mon, June 29, 2015 @ 1:51 PM

499. Prisca wrote:
anyone here with low Hgb levels or iron deficient has experience cardiac problems ? my HGB IS 12.1 my cardiac is horrible I have really bad heart pains ( tearing sensation), and shortness of breath, rapid heart rate.

Sat, July 4, 2015 @ 11:19 AM

500. diane wrote:
my ferratin level is between 2045-1500. I do not have hemocrotosis.I am very concerned , not having a disgnosis. do you think the hemotologist will see my referral and take this serious as opposed to a March appointment ?

Wed, July 8, 2015 @ 8:03 PM

501. diane wrote:
my ferratin level is between 2045-1500. I do not have hemocrotosis.I am very concerned , not having a disgnosis. do you think the hemotologist will see my referral and take this serious as opposed to a March appointment ?

Wed, July 8, 2015 @ 8:04 PM

502. Deb wrote:
My husband has been having health problems for the past four years. He is constantly fatigued, has a severe loss of appetite, extreme weight loss, digestive issues, fatty liver and more recently his joints ache constantly. We had been to multiple doctors in the Chicagoland area before deciding to go to Mayo Clinic to see if we could get some answers. One of the doctors that we saw at Mayo ordered blood work that included iron, ferritin, total iron binding.This was the first time any of these parameters were tested for even though we had been to multiple doctors at this point. My husband's iron level was 200 mcg/dL, ferritin 1517 mcg/L, total iron binding 258 mcg/dL and saturation 78%. No one mentioned HH to us during our visit. After returning home I began to research elevated iron and ferritin, this is when I discovered HH. I called the gastroenterologist that we were working with to request that he be tested and she refused. I called the internal medicine doctor that we saw there that had not ordered the test but who did agree to have my husband tested for HH. My husband's test results came back as a C282Y carrier. We were informed that he did not have HH but was only a carrier of the disease. That was a year ago and we still do not have any answers as to his health problems. We stopped going to Mayo two months ago because after multiple visits and numerous tests we were not getting any further along. We saw many physicians there and anytime I mentioned HH I would get reprimanded and told that this was nor the cause of his health issues however, we NEVER were given a cause for his health issues. I believe he does have an iron disorder but need a doctor that will listen to us. Where we live we only have one organization that you can go to for blood donations and you are limited to once every eight weeks. That is not enough initially to help him lower his levels and need a doctor that will work with us and prescribe phlebotomies for us. Does anyone have a recommendation for a hemochromatosis specialist in the Chicago land area? Someone that you have worked with that is open to a carrier of C282Y as actually having the disorder too?

Tue, July 14, 2015 @ 3:07 PM

503. Pam wrote:
The American Hemochromatosis Society references these physicians in Naperville: http://americanhs.org/doctors.htm. Perhaps an initial consult here may get you somewhere closer to home. All the best!

Mon, July 20, 2015 @ 8:56 AM

504. Hancock wrote:
Im a 32 year old male and I just got diagnosed. Im in the military and think im kinda healthy. But my iron levels we at 5442. Im curious about the effects are gonna be

Fri, July 24, 2015 @ 3:01 PM

505. Amber wrote:

My name is Amber. I am an LPN from Wisconsin, and I know very little about HH. My husband has gained 30 pounds in the last 6 months, all in his abdomen. His skin seems to be the same color as it has always been, however, he has developed severe itchiness. It gets so bad that he scratches all the time creating open skin. It is red and blotchy. He has always had eczema, but I have never seen him like this. He has abdominal pain every once and a while, but not constant. He has had joint and back pain for years that he blames on getting older. He is 37 years old. He has also developed, what I believe, is obstructive sleep apnea. I will listen to him breathe at night, and he inhales so hard, but the air won't get passed a certain point. I wake him partially, and he starts to breathe normally again. Last night it was so bad, that for the first time, he woke up in a panic because he couldn't get any air. He ran to the bathroom because he felt like he might vomit. Eventually, he began to breathe, but he said he felt as if he was drowning above water.

That is just a little history. Now about the HH. Because I am a nurse, and I knew he needed labs, I persuaded him to go to our PCP. He first had an iron panel, cbc, bmp, lipids, and tsh. Everything was within normal range except for liver enzymes. His AST was 254 and ALT was 72. ALP was also within normal limits. The doctor then ordered a serum ferritin. The level came back at 3100. We were referred to a hematologist. The hematologist ordered a liver pannel, ferritin, Ldh, and b12, among other tests. My husband also drinks on a daily basis, but after his liver enzymes came back elevated the first time, he quit drinking. The second round of testing was done after not a drop of alcohol for 6 days. His ALT rose to 84, AST to 324, and ferritin to 3350. His LDH level was 259. B12 was 833 which is on the higher side of normal. After all these tests, we were only waiting on the HFE test results. They are back. On a Saturday, and the hematologist hasn't seen them yet. I am so anxious. A homozygous mutation has been detected with the His63asp gene.

Any info to give me an insight on what the future holds would be greatly appreciated. Please Help!!! We have 3 children ages 11, 6, and 3. My 11 year old daughter is not his, but the two youngest ones are.

What's next??

Thank you for your time and support,

Sun, August 9, 2015 @ 12:25 PM

506. nasos wrote:
myironoverloddiet.com web site will terminate at the end of September.
The site did not performed well. It had 140 visitors in 6 months with 90% of visitors looking at the first page and leaving. It seems that the diet is not what
people like to do. I did not have any feedback at all. I spend money that I do not have as I leave on SS. I thought that even if one person would get help once in a while would be worth it. I gave it a go but did not work. My ferritin is now at
175. Many thanks to the Iron Disorder Institute site.

Sun, August 16, 2015 @ 3:46 PM

507. Kera Pederson wrote:
I went to an Endocrinologist because I have been having some symptoms that have been ongoing for years and my PCP just said it was nothing so I said I wanted some tests done and she said that she will refer to a specialist.
Things just aren't adding up....
TSH- 0.74
Free T4- 1.05
Free T3- 3.48
Total T3- 1.47
Anti-TPO Abs- 11.4 (H)
Anti-thyroglobulin Antibody- 11.0
Vitamin D 25-OH- 28 (L)
Folate- 18.6
Ferritin- 79.1
Iron- 171 (H)
Transferritin- 267
Iron % Saturation- 45 (H)
Hemoglobin- 14.9
AST- 16
ALT- 18
Total Protein- 7.9
Albumin- 4.6

I am always tired, muscles always feel fatigued, headaches, vertigo, hard time losing weight, hertuism. I am looking for some help answers, leads.......

Sun, August 16, 2015 @ 9:33 PM

508. Brandon wrote:
Ok did fasting blood work again. They said they were testing ferritin level as well but I do not. See it here. What does high ferritin low IBC Iindicate?

IRON 107 ug/dL 38-153
IRON BINDING CAPACITY 269 Low ug/dL 286-408

Mon, August 17, 2015 @ 1:17 AM

509. Michael wrote:
I am having fatigue but my mood is generally good but my internist thinks I have depression so he referred me to a psychiatrist. The psych did a complete blood work and found my ferritin level of 455 ng/ml and referred me back to the internist. The psych we should eliminate that possibility that the elevated iron is causing fatigue but gave me an antidepressant until that can work.
Is 455 high enough to experience fatigue. I'm 44. I also have a sub-clinical hypothyroid that I take synthroid for and the blood test revealed low testosterone....both are possible causes of excess iron.
But is 455 possible to cause these symptoms?
any knowledge would be appreciated. I'm caught in the middle of these two doctors!

Sat, August 29, 2015 @ 1:54 PM

510. Brandon wrote:
Finally got my Dr. to re-test my ferritin level again. It is still high. Went from 559 to 604 since December. He ordered a bunch of tests and 9 came back high, including ALT and AST, my cholesterol is off the charts, and I don't eat a lot of fat, processed foods , or junk food. Also my albumin/globulin is high as well as, high urea nitrogen . I will be printing the charts and taking them to my clinic. I just moved and started at a different VA Clinic, the doctor met with me for all of 5 mins, asked 3 questions and dismissed every thing I said, as med caused or depression caused. I pushed him just the same and made him listen.

Pam thank you for this site and for responding to all of us. It makes me feel less crazy. Looks and seems like at the very least, my Liver and cholesterol are being affected by too much iron. Also looks like a biopsy of my liver needs to be done. Does this sound right?

Sat, September 12, 2015 @ 12:49 PM

511. PWD wrote:
I am a 59 year old female who had a radical hysterectomy 27 years ago. I have recently had blood drawn at 2 different labs: Quest indicated a TOTAL IRON result of 113 (normal on a scale of 45 - 160 mcg/DL). Lab Corp results 2 weeks later indicated that my SERUM IRON level was 168 (considered high on their scale of 35 - 155 mcg/DL).

My confusion comes in the terminology. Are total iron and serum iron the same thing? Also, I have noticed others referring to ferritin levels - are those the same thing as total iron and/ or serum iron?

As a female who has undergone a hysterectomy and also been in menopause for 8+ years now, is my elevated serum iron level something I need to be worried about - my PCP gives no clear answer.

Thu, September 17, 2015 @ 8:38 PM

512. heather dalton wrote:
My question is
I had my total iron binding done and my results were very high my number 480
but my liver and everything else was perfectly fine.

can anybody tell me what this means pls.


Mon, September 21, 2015 @ 4:55 PM

513. Pam wrote:
Just a blogger; not affiliated with IDI. Wondering if Brandon has access to civilian care? That may be a better option. Go donate some blood if possible and seek out civilian hematologist or gastroenterologist. Please take a look at the helpful forms and charts available on this site for interpretation of your results.

Wed, September 23, 2015 @ 12:14 PM

514. lauren wrote:
hello i am a 30 y/o female and recently found out i have the double c282y gene. i have had 4 iron panels done and the results have changed throughout (i have not given blood yet)

iron 88
tibc 247
saturation 35
ferritin 135

iron 211
tibc 221
saturation 95
ferritin 202

iron 78
tibc 179
saturation 44
ferritin 213

2 WEEKS later
iron 1861
tibc 186 (odd same #?)
saturation 100
ferritin 197

what on earth is going on?! the last 2 were done at the same lab and i spoke to my hemo today and he said that me along with 3 others saturation has jumped like crazy and he thinks it has to be some kind of error, has this happen to anyone else?

Thu, September 24, 2015 @ 8:26 PM

515. lauren wrote:
on the 2 weeks later *correction*

iron was 186 not 1861

thank you in advance!

Thu, September 24, 2015 @ 8:27 PM

516. Anonymous wrote:
I'm 42 and have a 900 iron level. Is this considered high?

Sun, October 11, 2015 @ 4:46 PM

517. carrie wrote:
My hemotologist is recommending I have a port put in since this is a lifelong process and I am only 41. My veins arent very good and phlebotomy experiences have been challenging. The first time they stuck me 4 times and the second time only twice. SF started at 488 and now down to 200. Does anyone else have a port? Is it worth it?

Thu, October 15, 2015 @ 7:46 PM

518. Tammy wrote:
Last visit to hemotologist in July 2014 tibc393 tf 270 iron 57 doc. Didn't think I needed a phlebotomyI now I am feeling tired joint and hips ache don't see doc. Till November. What do you think Pam

Thu, October 15, 2015 @ 11:20 PM

519. nasos wrote:
I am 80 years old. With diet I lowered my ferritin to 171. Then I had a hernia operation. Before the operation my ferritin was at 171. Now after the operation is 363. Any one with such an experience or have a knowledge if the operation could have done such a thing. Thank you.

Tue, October 20, 2015 @ 9:38 PM

520. Pam wrote:
Tammy, what's your serum ferritin? Most knowledgeable docs want ferritin kept under 50. Checkout the helpful forms & charts available elsewhere on this site, or visit sister site hemochromatosis.org to help guide you further.

Mon, October 26, 2015 @ 1:57 PM

521. cleo wrote:
I have HHC, Been doing weekly phlebs since July 6th. SF was 860, now 71. Most weeks my SF drops numbers. The amount varies. MY question is, Does anyone know why, in some weeks my SF raises 8 to 10 numbers. ? ? I just got my newest test level, SF is 71.
Last week is was 62 ! Thanks, Cleo Kain

Wed, November 4, 2015 @ 9:03 AM

522. william sonny wrote:
My mother had been diagnosed of HEPATITIS B disease 3 years ago. She had been using the interferon therapy (Peg-interferon + Ribavirin) which adversely affected her hemoglobin level as she is also thalassemic (a side effect of using the interferon therapy). Luckily after stopping the treatment.

I read a book by HEALTH MED LAB about natural cures and he recommends these two things as a natural cure for HEPATITIS disease,Hydrogen Peroxide Therapy and Crocodile Protein Peptide. You can Google both of these to get more info. Also, need to do the cleanses,colon, liver, kidney, galbladder. Eat organic foods to get the toxins out of your body so your body can overcome the disease itself.This is important. I am not promoting his book, but I feel it is a must read if you want information on how to beat this awful disease. My mother is now HEPATITIS Negative with his help, Anyway, his email : (healthmedlab@gmail.com) God bless and good luck!

Wed, November 4, 2015 @ 11:12 AM

523. Beverly Burns wrote:
Hello my name is Beverly and i'm a 43 year old woman with hemochromatosis. induced by iron overload. I tested negative for hereditary. What can i do? i'm having so much joint pain all over my body. my ferritin levels are back to normal. any suggestions anyone?

Fri, November 6, 2015 @ 1:57 PM

524. John wrote:

Serum Ferritin is the best marker for total body iron stores, but it isn't perfect. Here's a few reasons it may go up some weeks-

1. It's an acute phase reactant. So if you're fighting off a cold, have an infection, or have some other inflammatory condition (minor or major), it can go up in response to that.

2. Since you're doing weekly phlebotomies, you may be dehydrated or have less blood than normal. This could throw off any blood test. In other words, ferritin might be more concentrated if you have 11 pints of blood in you instead of 12, not truly reflecting lower iron stores at the moment of the test.

3. This is mostly speculation on my part, but I believe that as iron stores go lower, your body starts releasing iron from some of the places it stored it when it was building up. I think this could cause some upward fluxuations as well.

4. Lastly, it could just be variations in clinical accuracy.

For these reasons, overall trends are more important than any single test.

Fri, November 13, 2015 @ 9:43 AM

525. danielle wrote:
i have chronic disease
Anemia, iam transfusion dependant, from myleodysplasia,resulting in IOL,

my ferriten is 2300.

i was on exjade for 8 weeks which madle me me bleed from the bowel i.i have had a hemi colectomy caused by AVMS in the bowel due to myleodysplasia

i am hopeing to chat to any one who has been on exjade...and any one who has a list of iron free foods for me to follow,,,i am getting desperate...

Sat, November 14, 2015 @ 3:31 AM

526. Claire Savery wrote:
Was wondering if anyone can help with my results.......my ferritin is 37 and saturated iron% 27. I suffer with hypothyroidism, do these levels indicate deficiency? My saturated iron was 11% a year ago, was supplementing with iron, was told by my doctor 6 months ago that my levels wernt that bad, told me didnt need to supplement anymore.Can anyone advise if the above levels warrants supplementing again? Thanks

Wed, November 18, 2015 @ 1:56 AM

527. Alison wrote:
I am 40 years old and I was diagnosed with Homozygous Hemochromatosis last April. At the time my Ferritin was 206 with a saturation of 93% and and Iron Serum of 237. I was referred to to Hematologist who took labs again and my Ferritin had dropped to 71 with a saturation of 41% and Iron Serum of 100. My hematologist ordered a fecal occult test to test for GI bleeding which came back negative. At the time of diagnosis I had been taking iron supplements and then stopped as soon as I was diagnosed. I also watched my iron intake. Could this have been attributed to the decrease? Now it is November and my ferritin is back up to 122.3, saturation of 65%, with Iron Serum of 198. Has anyone had a similar experience?

Wed, November 18, 2015 @ 7:31 AM

528. Alison wrote:
Addition - the second lab was taken almost 3 months later.

Wed, November 18, 2015 @ 7:41 AM

529. Steve wrote:
Hey everybody,
I have Hemochromatosis and have been doing a lot of personal research into brain fog and depression that I have been dealing with. I keep my Ferritin around 60 and still experience some of these symptoms so I tried several supplements to help out. I took Zinc for a long time along with Magnesium, but whenever I stopped taking Zinc my issues would alleviate and found out that it's possible that Hemochromatosis can increase Hepatic Zinc five times. Here is the study I got the information from: http://www.ncbi.nlm.nih.gov/pubmed/2040101. Too much Zinc is a big deal and I think that before anybody with Hemochromatosis takes a Zinc supplement they should see if they are actually deficient. Too much Zinc can then make you Copper deficient. Just wanted to share.

Also, just a fun anectodal fact I have found success in lowering my Ferritin by eating cabbage/coleslaw like somebody has stated above! I get phlebotomies every 2 months and have tested Ferritin in between periods of time without phlebotomies and seen my Ferritin decrease.

Wed, November 18, 2015 @ 8:05 AM

530. Jul wrote:
Hi I'm a female age 55, have been on hrt topical estrogen and once every 3 months take progesterone suppositories for 2 weeks. At the time I was to take progesterone I began having bleeding which would normally last only a week, it extended to a month, with extreme fatigue and severe headaches. I went to my endochrynologist/gyn Along with headaches I was having numbing in my face, I assumed migraine but now it was moving to the right and along with severe headaches lasting weeks. endo/gyn did ultrasound said uterine lining is fine, I asked please check my iron, the results are below. Also went to my nuerologist because my usual numbing facial symptoms changed and now combined the bad headaches. Now the headaches come and go over the last two weeks, as does the fatigue. I have had arthritic pain in my hands and arms which I have not had in a couple of years. I also feel concentration is difficult. (short term memory).

iron bind.cap.(tibc) 261
uibc 100
iron, serum 161
iron saturation 62
ferritin, serum 45

My Endo/Gyn testing again considering HC. I notice similarities to an illness in my dog, she died of Autoimmune hemolytic anemia, she tested positive for Ehrlichia, a tick born illness, and they said she also could have been exposed to some kind of chemical. There were toxins in the house we were in, and this required our moving. My symptoms began around the time she died. I never had my iron checked until recently. I have struggled with unusual symptoms that have just worsened. Also, my Dr says I was mildly anemic when my iron levels were tested so high.

Do these symptoms, or blood results, sound indicative of hemochromatosis?
Please share any thoughts you may have.

Thank you.

Thu, November 19, 2015 @ 11:31 PM

531. AJ wrote:
Hi, not sure if this is the right blog to get advice - I went to donate blood this morning and they told me the iron in my blood is getting high (18.6). Is this a normal count? Apparently when it reaches 18.9 it becomes a problem. Please advise. Thank you very much.

Sat, November 21, 2015 @ 2:40 AM

532. Amanda wrote:
32 year old female; joint pain, fatigue, weakness, weight loss, nausea, heart palpitations .... My ferritin is normal, serum iron 180 (range 30-160), unsaturated iron binding 106 (range 155-300), transferrin saturation 63% (range 15-50). Bilirubin and glucise always run just slightly high. Genetic testing only revealed a carrier status for H63d mutation. Anyone with a similar situation?? They've done endoscopy (bile reflux and gastritis dx), colonoscopy (normal), abdominal ultrasound (normal) and now want to do a ct scan of abdomen, but I have my hesitations.... there must be another blood test to try before doing another costly test?? Fee

Sun, November 29, 2015 @ 12:21 AM

533. James wrote:
I also have been diagnosed with HH and have no viens. Doctor wants to put a mediport in. Not a happy camper. Can't this be treated with medications? BTW 49 YO Male with Ferritin level in 3000's. I've had 2 Pulmonary Embolisms and take blood thinners for life. I have lost so much weight and have no appetite. I'm on the fence about the port. Thinking there is medicine that could be tried first

Fri, December 11, 2015 @ 4:49 PM

534. carrie wrote:
In reply to James. I got a port put in about 6 weeks ago and it is wonderful! I was on the fence too, but after having the nurse dig around in my arm and not finding a vein, I went ahead with the port. I would definitely recommend it!

Wed, December 16, 2015 @ 4:28 PM

535. Fanny wrote:
I had venesection today and feel very good, back pain gone and knee pain. I had 635 ferritin and TS at 90 percent. I have iron in my liver. Will the venesections pull the iron from my liver or is it there to stay?

I also had low blood pressure tonight and some abfib. Would venesections cause that? I had ablation last year for Abfib and on blood thinner

Fri, December 18, 2015 @ 6:06 PM

536. Iron Man wrote:
501 Diane,

You must have had the answer by now, but in case you did not, let me tell you you could have "DIOS: dysmetabolic iron overload syndrome"

Thu, December 24, 2015 @ 3:43 AM

537. Linda wrote:
Ferritin 174
Iron 164 transferrin 191 trans saturation 61
Cause for concern
Iron overload

Fri, December 25, 2015 @ 11:23 PM

538. Jeannine wrote:
My ferritin levels are over 2000 and have high iron, and elevated liver. Can any one tell me what I can do for this?

Wed, December 30, 2015 @ 2:14 PM

539. Cathy wrote:
I recently started experiencing spikes in bp, hair loss and my gp ran a Ferrtin which came back at 600/ My genetic texting only revealed one copy of the H63D-You canhave hemochromotosis symtomps with only one copy, right-I know the percent is low but hope someonme out there has experienced the same

Fri, January 15, 2016 @ 11:29 AM

540. Marty B wrote:
43 year old male. Suffered from horrible muscle spasms and cramps for years, first took DR route rhuematologists,neurologists, gp drs. chiro...etc. Then took out caffeine and went to organic and better food and felt better. still but not as bad. Did a self allergen diet and gluten was the trigger. 4 years without and feel much better until recently when I found out I had two rupture cervical discs. Thought that was my pain. Then had levels tested because dad had ferritin levels at 1800 and was told had hemochromatosis. I go to hematologist this week. Last 6 months very fatigued, feeling lazy, not using best judgement.

Ferritin 1787
Iron Total 255
Saturation 96%
Transferrin 180
Hgb A1c 5.4%

Thu, January 28, 2016 @ 6:40 PM

541. Kurt wrote:
MRI showed 'mild iron depositions in liver'
Went for blood tests and ferritin levels were 370.
Still waiting on saturation test results. If they come back normal and hemchromotosis is ruled out... what else could be the cause of mild iron deposits in liver?

Mon, February 8, 2016 @ 10:44 PM

542. Joey wrote:
Last year my ferritin level was 1100 but all my other blood test shows I am in the normal range. (too many to list) Then I started doing more exercises and got tested every 3 months. I got down to 800 then to 700 last July of 2015. Last week I had another blood test and I hoping it will go down more but to my surprise it went back to 950. Now my doctor told me I need to get MRI for my kidney. I keep thinking what did I do differently..Maybe I ate too much during the holidays? then I research more and found out alcohol might be the answer. I only drink on occasion but last Dec I think I had too much to drink. Does anyone here have the same conclusion that drinking alcohol might be the problem?
I am 48 yrs old and 175 lbs asian. I do regular exercises and no pains or discomfort.

Thu, February 11, 2016 @ 12:39 PM

543. Dan L wrote:
I'm a 65 yr. old male. Genetic test 6 yrs ago revealed the c282y from both parents. Iron levels were high 1200-1500. It's true many doctors don't know squat about treatment and many of those I dealt with were too impressed with themselves to admit it, so to put it simply, initially my treatments were not what they should have been. The strange thing, in my case, is I never had much in the way of symptoms until my late 50s. As a matter of fact, I was in very good physical condition - held many collegiate track records in distance running. No liver damage - and I do enjoy my scotch. Did have to get a fluttery heart fixed. My knees get very sore and I have muscle aches. My uncle died of this I am certain, but the coal region doctors where he lived couldn't figure it out.. I've educated my doctor here in New Jersey and she is catching on to keeping my iron in range - meaning less than a 'normal' human being who can process iron. Bottom line folks is to get the iron out. If you have hemochromatosis your body cannot process out the iron and you will eat foods with iron no matter how hard you try not to - its in almost everything you need to keep your body otherwise healthy. So if you do nothing, the iron will accumulate sooner or later and poison your system until some organ or organs give out. I saw a car sticker the other day which read " I Love my Phlebotomist" !

Fri, February 12, 2016 @ 11:19 AM

544. Linda wrote:
My Ferritin is 393 and my GGT is 240, should I be concerned?

Tue, February 16, 2016 @ 8:57 AM

545. Linda wrote:
My Ferritin is 393 and my GGT is 240, should I be concerned?

Tue, February 16, 2016 @ 8:57 AM

546. Wes wrote:
This is in response to Beverly's post #523. I am a 60 year old man that was diagnosed with HH about 7 or 8 years ago. It was discovered because of elevated liver enzymes. Luckily I had a PCP that recognized the problem and sent me to a gastroenterologist for phlebotomoies. My ferritin was about 2400. I had no other symptoms. After almost 2 years of every other week phlebotomies and now just maintenance phlebotomies 3 or 4 times per year, my ferritin is kept to around 100.

The bad part about this story is I now have terrible joint pain all over, which I didn't have until after the phlebotomies started. I have pain in my back, both feet and ankles, wrist, hips, and shoulder and sometimes knees. The pain can move from place to place and can go away for awhile and come back. I have taken as many as 9 Advil a day and that only helped a little. I am now taking 4 arthritis strength Tylenol tablets and that doesn't help any better than the Advil did.

I would not be surprised to end up in a wheelchair in the future. Has anyone had any luck controlling joint pain?

Fri, February 19, 2016 @ 8:45 AM

547. Dave wrote:
My wife has genetic hemochromatosis. After the initial diagnosis 4 years ago she went through a series of phlebotomies to get the levels stabilized. She has done periodic phlebotomies to maintain. Over the last year she has not had a phlebotomy so she had her iron levels checked She has had two blood iron tests two weeks apart. The first series of test showed her iron as high. The second series all levels were significantly lower even though she didn't have any blood drawn. Where would this iron have gone? Does the liver absorb iron from the blood?

Fri, February 19, 2016 @ 8:47 PM

548. Beverly D. wrote:
To all who are concerned about their iron levels being too high and/or not feeling that their doctor knows much about iron overload: PLEASE SEE THE BEST HEMATOLOGIST you can find. They are usually an oncologist also. They know about blood disorders and what tests to order. Read everything you can find on the internet about iron overload and hemacromatosis. The more you read, the more you will learn.

I no longer cook in iron or stainless steel. Iron can leech from stainless steel. I use non toxic enamel coated iron to cook in. By the best you can afford as cheap enamel chips faster and more easily. Glass can also be used for baking.

Drink at least 1 cup of milk/dairy with your meat meal to inhibit iron absorption. Reduce your portion sizes of meat. Read labels. If something has a lot of iron, eat something else.

Reread information often as you will forget it. I was so overwhelmed initially that I forgot a lot of what I learned at first. This is ongoing.

And YES, watch your alcohol intake. Alcohol aids in iron absorption. Try to only drink ORGANIC alcohol if drinking at all. This is much easier to do with wine. Remember, your liver is processing it all and iron is hard on the liver. So is alcohol and sugar. If you are not eating and drinking organically, your liver is having to deal with all the pesticides on the food also. And grapes have the additional chemical to keep them from getting mold. When used for wine, the grapes are not washed so the pesticides and mold retardant are still on the grape. These are additional toxins for the liver to deal with.

Hope all can get their health on the mend!

Mon, February 22, 2016 @ 10:57 PM

549. Beverly D. wrote:
To Wes #546,

Wes, to help with pain in my joints, primarily hip, I have been using CBD oil with good success. It is derived from hemp and legal in all 50 states. No THC. Perhaps it could help with your pain. I use the capsules found at www.cannavest.com.

Mon, February 22, 2016 @ 11:00 PM

550. Kristi wrote:
I am a 36 year old female. I've experienced joint pain, fatigue, depression and bipolar for the last 15 years. The dr's thought the pain was due to fibromyalgia. I had a paraganglioma removed four years ago and the pain went away. About 8 months ago I started to notice swelling and pain in my knees and hands. Then I started feeling dizzy upon standing. I went to the dr and they did various blood tests. My cortisol level was only a 6. High hemoglobin, high liver enzymes, iron 214, ferritin levels 1580, transferrin low, and transferrin saturation 81%. Ultrasound showed normal liver and a gallstone, I am waiting to hear back on hemochromatosis genetic test. I'm having a hard time figuring out healthy recipes that are low in iron. I don't like fish that much and am getting sick of chicken. Where can I get recipes?

Wed, March 9, 2016 @ 8:27 PM

551. Delwyn wrote:
Hi everyone,
My iron is now 13 thousand

Sat, March 12, 2016 @ 5:04 AM

552. Delwyn wrote:
I was wrongly diagnosed with bone marrow cancer, I had transfusions for 2 or 3 years once a week. Turns out I have severe Anemia. I can sleep all night, awake for a while then sleep till 8pm. I am so sick of this illness.
My Ferritin is over (13 thousand) this was thought to bring on heart attacks, however recent medical finds say this is not true.
My symptons are....
Pain in upper rightside.
Skin cold to touch, but I am very hot. Summer here in New Zealand
General aches and pains.
I dont think I can give blood, because of the anemia.
The Drs say there is no treatment.
I will be putting myself on a NO IRON Diet.

Sat, March 12, 2016 @ 6:15 AM

553. Delwyn wrote:
My email is forebares@gmail.com if any one wants to know more or just stay in touch.

Sat, March 12, 2016 @ 6:18 AM

554. Kristi wrote:
I did find out that I have HH. I'm going in for a liver biopsy soon. Now I have to get testing done for my 3 children. My parents are getting tested too:( Not fun.

Tue, March 15, 2016 @ 12:06 PM

555. terri wrote:
I just found out I have iron overload. I had an MRI and the Dr. did see some iron in the liver. At this point she wants me to see a nutritionist...Does anyone know if the iron leaves the liver?? and will it only "leave" if I donate blood?? I also enjoy some wine, it it really bad to be drinking any alcohol at this point. Even it its just a glass of red wine with dinner??

Wed, March 23, 2016 @ 6:56 PM

556. Shaun wrote:
My Mom has had a few collapsed veins recently, she has a very low iron count. What can be the cause of this?

Thu, March 24, 2016 @ 3:23 AM

557. Lillian Meeds wrote:
I was diagnosed with genetic HH about 7 years ago. My Oncologist told me at that time to not worry about it but keep an eye on the iron and ferritin levels. 5 years later, my levels were extremely high so she started me on a regular phlebotomy regime every 4 weeks. Earlier this year, my brother (who also has a mild form of HH) discovered that Chelation Therapy in pill form has the potential of reducing serum iron levels. I began taking this and for the last 3 months, my iron levels are normal and have not had to do the phlebotomy. Could be a coincidence but for now, I attribute it to taking the pill form of Chelation therapy. I still have my blood checked every 4 weeks. My next appointment with my Oncologist is in August so looking forward to getting her intake on this. For whatever it's worth, the following is the website to get more detail on this.

Fri, April 22, 2016 @ 11:33 AM

558. Cindy wrote:
Does anyone know if you can have hemochromatosis with just one gene mutation? My ferritin level is 990, my AST and ALT enzymes are both high as well. My hematologist will not have blood taken out until hepatologist does a liver biopsy? I had an ultrasound on liver which was unremarkable. I am not sure why I need a biopsy? Do I have to have 2 of the genes to have hemochromatosis? HELP!



Wed, April 27, 2016 @ 3:54 PM

559. mike wrote:
no you don't I have one gene and my ferritin a level of 3740 I have been having 500ml of blood removed every week for 8 weeks and major life style changes and now my ferritin is at 50 and I am wondering if any one out there who has had there levels in check for a while if the fatigue and joint pain go away with time and how long it took if you are suck with it? thank you....iron man lol

Thu, April 28, 2016 @ 11:59 AM

560. Ginny wrote:
Aloha all, I am an RN who, for the past 10+ yrs has been dealing with elevated liver enzymes, joint pain, gall bladder issues, indigestion. It seemed I went from one issue to another. Multiple test, Ultra sounds, cholecystectomy, labs and nine years of Prilosec, pain pills, drs visits etc. with ONLY a diagnosis of a 'fatty liver' and questions of 'how much do you drink' ....(I might have a bottle of champagne or wine a year PERIOD). I blamed Prilosec. I got off of it two years ago and my liver enzymes went normal until 2/16 and again are slightly elevated. As you might imagine, the indigestion has come on with a vengeance. I went to a new specialist and requested EGD. He did Hep ASun, May 1, 2016 @ 3:10 PM

561. Catherine wrote:
I have high iron (246) and high iron % sat. (74%) in range tibc (334) & my ferritin is 20...
I started taking iron supplements during my third trimester with my first and only child and continued the iron supplements for a year after while I was breast feeding. I started getting cysts like bruising and that's when I stopped taking iron supplements. That was over two years never had my iron levels checked until now. I am so confused as to why I have an almost low ferritin but high iron levels?? Also had low alkaline phosphate (37) and high b12 1118... Any one ever experienced this?? Heavy periods and after a few days of blood loss I feel weak and have been getting headaches. I bruise very easily and have a very foggy brain and I am tired and confused all the time.

Mon, May 2, 2016 @ 11:47 PM

562. Deanna wrote:
Hi, I am wondering if some one can point me in the right direction. I am in Canada and am trying to get some insight on having Iron overload. I have had the genetic test done and am still waitong for the resaults. I was told that this could take 3 months to come back. I AM worried because mu ferritin level was 786 in Dec,792 in Jan,898 i March, had a Phlebotomy went down to 787 with a transferritin sat. of 91%.They said that I should have 3 phlembotomies with in 3 weeks to bring my ferritin to 70. The first one was unsuccessful as they hit my artiry and i was bruised really badly. They got a little over half a pint. The second one unsiccessful as they tried to go through my right arm and it would not drain. I am now going to have a PICC line put in. Not excited. We tested again last week and i am back up to 848 with a transferritin sat. still pf 91%. I habe been experincing alot more joint pain and fatigue. Honestly I am scared. IS there more I can do? Is this normal with this disease? Thank you in advance.

Wed, May 4, 2016 @ 9:31 PM

563. Maria Alfano wrote:
I have been anemic since I was 24 and went through menopause at the age of 34 and was diagnosed with MS at the age of 41. My last blood test showed that my iron level was at 399 and the one before that 354. Ferritin was 399 and my Saturation is 66 and my iron binding capacity is 231 which is low. Everything else was normal. Should I be on medication to treat this since I'm not a candidate to give blood because I'm so anemic. Please advise.

Thu, May 19, 2016 @ 2:30 PM

564. Kathy wrote:
My husband was diagnosed in March. His ferritin level is over 3,000. His first hematologist scheduled him to give blood weekly but this was only done once in 4 weeks because his hemoglobin was too low. The doctor also prescribed Jadenu, which insurance denied, so he has felt like crap for months now and it felt like nothing was getting done. He is in pain all the time and has lost 40 pounds in the last few months. He also has cirrhosis. We switched to a new hematogist last week and they did a blood draw on first appointment even with the low hemoglobin, and have also scheduled him for weekly phlebotomy. Hoping things will improve. He is so ill. He has absolutely no energy and does nothing all day; is also very irritable. My question is has anyone used Jadenu? The new doctor says it is not FDA approved for hemochromatosis. Or is there something over the counter that helps to remove iron?

Sat, May 21, 2016 @ 3:32 PM

565. wrote:

Thu, May 26, 2016 @ 2:50 AM

566. wrote:
yeah mines 1000 come down to 400 but hb is low so they wont take my blood have to do it every week

Thu, May 26, 2016 @ 2:58 AM

567. Lindsay wrote:
I was diagnosed homozygous H63D/H63D 3 months ago (through a DNA test I had to get myself.) My hair loss began 23 years ago. 20 years ago I was diagnosed as hypothyroid. Hair loss has continued ever since. Last December my GP referred me to liver dept at hospital. Ultrasound showed that I have fatty liver and a Fibroscan showed a score of 10.7 ie severe fibrosis/possible cirrhosis. I was also diagnosed with type 2 diabetes last January and I have been referred to a cardiologist for possible angina attack in March. The cardio is sending me for echocardiogram and nuclear heart scan. I have been having palpitations for years.
My ferritin levels are never higher than 277 and saturation usually around 48%. I am a 60 year old female. I had an early menopause...all over by age 43. Knowing what I now know about hemochromatosis, it is obvious to me that all my family had health problems, and indeed died from, related conditions. The liver specialist dismissed ALL my hemo symptoms and said if I had HH my skin would be bronze and my ferritin would be over 1000. So, I sourced a DNA test on my own, which was positive, as above, H63/H63.
Following the results of my liver tests and the serious Fibroscan result, the liver doc is saying that iron overload has nothing to do with my problem. I KNOW that my ferritin level is not seriously raised but has anyone ever experienced just about every symptom there is for iron overload but NOT had very high blood test results? Bearing in mind that my first symptom of HH manifested itself 23 years ago and I have since got hypothyroidism, diabetes, heart problems and now serious liver problems, chronic fatigue, joint pain, brown patches coming up on my skin and just about every other symptom to do with HH, why is my GP and the liver doctor refusing to even consider the possibility that iron overload could be the root cause? Neither the GP nor the liver doc will consider/refer me for venesection. I am concerned that if iron overload has been the cause of all my problems beginning 23 years ago, then I can only get worse and the fibrosis will proceed to definite cirrhosis and possible cancer. Are they justified in just relying on ferritin test results for denying me venesection when my saturation levels are above range at 48% and I have so many serious HH related problems? In case it is relevant, I live in the east of England, in Norfolk.

Thu, May 26, 2016 @ 4:56 AM

568. Angela wrote:
Running out of ideas..
my voice sent hoarse for 3 months and the ENT doc sent me to speech therapy. Around the same time Indiscovered relatives with HH and GP them did blood tests and found ferritin level to be very low (11). Hb level 140. Still waiting for the gene test. GP prescribed iron supplements and with a day or so I started having severe joint/bone/muscle pain and fatigue. This has been going on now for months. Also vit D deficient but have had a course of supplements. No improvements. Morning cortisol test was 629. Ferritin levels have come up to 40. Lupus ANA test negative. Thyroid TSH level is normal at 2.52? Folate was 7.8 and vit B12 was 343. Go does not understand autoimmine thyroiditis nor does he accept there are other reasons why tsh level can look normal but the body may not be using it!! He refuses to do further tests (eg for thyroid antibodies). Finally he has agreed that 'there is a problem' and referred me to an endocrinologist which could take 3 mths for first assessment.
My question is: why did my body react this way to iron supplements? The o my problem I had before them was the hoarse voice. Is it a total coincidence?? I have my lab reports bit too many results to post here. Can't see any transferrin results. Supplements are making no difference to symptoms and I have no life. Haven't been able to work since February and running out of sick pay! Any thoughts appreciated!!

Sun, June 5, 2016 @ 6:14 PM

569. Fanny wrote:
I just had a repeat blood panel which was 550 ferritin and iron 39 but the result said they could not calculate the TIBC or trans ferritin saturation. Why is that? This has happened on the last two blood tests. My doctor says he must have the trans ferritin sat result before he begins venesections again because he says that is the marker for iron overload. I had eight venesections last year which brought my ferritin down and my TS has always been very high. So I don't understand why they can't calculate it now. Any ideas?

Mon, June 6, 2016 @ 8:05 PM

570. Michael wrote:
I am male 59 years 5 foot 8 inches weighting 152 pounds. My ferritin level is 421 with fasting of 4 hours. Had car accident 4years ago and still have severe inflammation in my right knee. Would that cause it to be high? I do get heart palpitations, joint pain, massive fatigue and weakness. Any suggestions please.

Wed, June 8, 2016 @ 4:14 PM

571. Cindy wrote:
Hi, I am a 60 yr postmenopausal woman and have been extremely fatigued for the last few months and here are my test results:
Serum iron 251 ( normal 27-159 ), TIBC 296, Iron (Transferrin Percentage) Saturation 85%,
Ferritin 128 (15-150). All liver values completely normal and always have been.
One year ago: Serum iron 86, TIBC 280, Iron Saturation 31%, Ferritin 67.
I had a difficult time getting my Internist to order the genetic test for Hemochromatosis but she has. It appears to me that my ferritin and iron are moving up and why wait for damage. I like to be proactive. My doc said that hematologists do not even want to test for hemachromatosis unless the ferritin is elevated. I thought that was just a later indication of inflammation and possible liver damage. Has anyone had an experience similar to mine. Thanks for any opinions!

Thu, June 9, 2016 @ 7:24 PM

572. Andrea wrote:
Anyone know of any connection with breastfeeding and high iron? My 2nd is 15months and night nursinc. I went for a physical and the dr was surprised at low BP and that I didn't have period yet (took this long with first). Sent for bloodwork and ended up having 181 iron, 46% sat and 396 tbic. I know this is out of normal, but can't gauge if its worrisome od possibly due to nursing. Any experience?

Sat, July 2, 2016 @ 12:20 AM

573. ANIL NAMBIAR wrote:
My son age 14 years, Ferritin Value is observed 478.84 ng/ml. Can y pl let me know what does this high levels indicate.

Tue, July 5, 2016 @ 1:19 AM

574. Maureen Hartnett wrote:
I was diagnosed a carrier of HH63d about five years ago. My Hematologist felt my serum ferritin was robust enough (455) to do therapeutic phlebotomies. I continue to get one about every 55 days. After the third phlebotomy, my liver enzymes normalized and, my continual tan lightened. I also finally had a clue about what was causing my joint pain. My question has to do with cardiac symptoms. I have had tachycardia (resting hr of 240) for 20 years, about the time my liver enzymes levels went up. But, about five years ago, around the time I began phlebotomies, I began to get hypotension. I wondered if I should lower my Propranolol (80mg) to counteract this symptom. And, with my Cardiologist's direction. I have begun to do that this month. So far I have lowered it to 50mg and I still don't see any sign of tachycardia. I wonder now if iron overload was the cause of my tachycardia and whether my regular phlebotomies resolved this condition? Are you aware of any studies or proof that phlebotomies have an effect on tachycardia related to iron deposition? Thanks for your help.

Fri, July 8, 2016 @ 1:06 AM

575. Robert Newman wrote:
Is there anyone out there that has a low hemoglobin, mine is 10.8, that has been diagnosed with HH? Currently my ferritin count is 1194. I am concerned that I cannot do phlebotomies due to the low hemoglobin. I would be interested to know what your treatment is, or has been.

Wed, July 13, 2016 @ 8:05 PM

576. vijay wrote:
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Fri, July 15, 2016 @ 2:17 AM

577. Diana wrote:
I went to the emergency room 2 weeks ago with shortness of breath and heart palpitations. My RBC was at 4.9 and I had to have two units of blood transfused. My iron count when discharged was at 23 mcg and TIBC at 447. I was told to see a hematologist.

I did on Thursday and on that visit Iron was at 193, Iron saturatation was 41% and TIBC at 470

The hematologist put me on a very high dose of iron prior to the results of this test. I go back in 4 weeks for further testing.

What is your suggestion as now it seems that my iron count is above the normal. And that was with just over the counter 65mg of iron, and iron full diet. I did have an endoscopy and found 5 ulcers which probably caused the blood loss. And I do have Sjogram's disease which is an auto immune disorder.

What are your suggestions. My next tests would be for leukeimia, lymphoma or myeloma.

Sat, July 16, 2016 @ 3:32 PM

578. ds wrote:
i been checked for haemochromstosis gene dna test very fatigued normal bloods but iron high at 42 what optimal level please

Wed, July 27, 2016 @ 11:02 AM

579. Ray wrote:
I've been tired for 5 or 6 years .... my family doctor wasn't do enough to figure it out so found a new doctor. .. He tested my dna and sent me to a blood specialist. .. He said he didn't think I had hemochromatosis because no family history. ... After read about it ... I started giving blood my iron is 18 (red cross)after 2 donations ... still not feeling good after 4 months .... I called my new doctor he said I don't have it ...I got a copy of my dna test .... result : h63d/h63d two copies of the same mutation (h63d/h63d) identified... can anyone help with what this means

Thu, July 28, 2016 @ 8:55 AM

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Sat, July 30, 2016 @ 1:29 AM

581. Tammy Beardsley wrote:
My iron has gone from 73 to 159 in six month without taking iron supplements.
My WBC is at 3.6 K/ul and my Lymphocytes Absolute is 1.00 K/ul. I have complex cysts in my liver and I just started menopause . What could be causing these issues?

Wed, August 3, 2016 @ 7:00 PM

582. Doreen wrote:
My husband went to docs with umbels in toes. Full blood tests done. All bloods normal except ferritin which was 2600. Taken 3weeks later. Now 3150. Did not meet criteria for haemoctomatosis. We are very worried. He feels fit and healthy. Just some ankle pain....

Mon, August 8, 2016 @ 9:54 AM

583. Sarah wrote:
I am a 27 yr old Australian female. I suffer from intermittent abdominal pain after eating and fatigue. It wasn't until my period cycle became affected that I went to the doctors to find out what was going on. She tested my iron levels which came back at 88% iron situation. I'm not aware of any family members suffering from heamachromatosis so she is sceptical. I have mild joint pain in My knees but lots of cramping in the hips. I'm being tested for the gene today which is only one month after the initial test. My doctor wanted me to wait 3 months but I can't handle the fatigue with work and just want to begin treatment if I do in fact have the condition.

Wed, August 17, 2016 @ 8:44 PM

584. Teresa wrote:
Recently I have been exploring the possibility of HH, but my gene tests came back negative. I have read that there can be other HH genes that have not yet been identified which doesn't help me. I have been feeling crappy for 22 years. Fatigue, muscle/joint aches, Short of breath, itching, osteoporosis etc. We noticed that my Ferritin levels jumped up 100 points during this last year so are exploring iron overloading possibilities. I have read there are three other non HH iron overload diseases one can have too. I am waiting for a transferrin saturation and a second Ferritin test result at this point. I have noticed also that the last two winters my tan doesn't seem to fade and I have a lot of freckles on my arms I never used to have and when I bruise, it leaves pigmentation after the bruise heals. Who knows. What do we do if we have one of the unidentified HH genes and don't know it? 23and me have quite a few genes listed under the HFE gene; and some are not genotyped.

If the Ferritin is still high, we are going to start doing blood drawing anyhow. My doc mentioned the liver biopsy. I don't want to do the liver biopsy; it sound very evasion and stressful not to mention the liver bleeding. Also I am about 20 pounds overweight and would have to push the needle through all the fat as it looks like nearly all of my weight has gone straight to my stomach. I used to be skinny so this big stomach is odd to me. My father died of colon cancer and I read that this is a common cancer in HH. At this point I would be thankful for a HH just to know what is wrong and start healing. Thanks for listening.

Sat, August 20, 2016 @ 11:35 PM

585. KD wrote:
34 years old and recently diagnosed with double C282Y. I don't have any symptoms and found out through a free blood test through work. My liver enzymes are normal. My iron serum is 214 and was 244. However, my ferretin levels are within the normal range. Have an ultrasound of my liver tomorrow morning and then will begin phlebotomy's. Any suggestions? Any other ladies out there experiencing bacterial infections?

Sun, August 21, 2016 @ 4:02 PM

586. Rob F. wrote:
Im 53 year old male my ferritn came in at 618, my AST was 20 ALT 46, trygl at 324, hdl at 29, vldl at 65 ldl 110 SPEP normal UPEP came back with a beta bridge? HBeta 55.6% Had back problems for years got the latest MRI showed a Diffusely decreased T! marrow signal, also had Hep B at 18 yrs....docs keep saying you are fine , the only thing the rhumatologist who ran the last tests said was have my family doctor look into my testosterone which came in low 214, only a few points below the normal range of 221-716... I know I'm sick but what?

Tue, August 23, 2016 @ 5:04 PM

587. Bubbles wrote:
I am 65 year old female. In 2011 I had a gastric bypass and have been on iron supplements regularly since then. For the last 5 months I have been on Predisone for the treatment of Polymyalgia Rheumatica. Recent blood tests showed my iron level of 31, %Saturation of 51, and Ferrtin was 437. On my doctor's recommendation I have now stopped taking my iron supplements. My WBC was 14.2.
Any thoughts / comments related to these results would be appreciated.

Wed, August 31, 2016 @ 4:38 AM

588. Lynn wrote:
Hi, I am a 62 year old woman. I have been feeling lousy for a few years now. Low energy, achy hip joints, uncomfortable adbomen, can't tolerate heat at all. Been to doctors test that I have had done seem to all come back normal. I always get copies of my bloodwork and any other test I have done. I have noticed over the last few years my hemoglobin rises a little, still in normal range but curious to why it is rising. In the last year it went from 13.6 to 15.1. Still normal but for me, I know it has never been that high in my lifetime. So I finally went and did some test myself at HealthcheckUSA. Had the total iron panel. The only thing that came up out of range but still low was Serum Ferritin at 156 (15-150). Iron Saturation was 21% Tibc-341, Iron Serum 71 and UIBC was 270. Is HH out of the question with these numbers?

Wed, September 14, 2016 @ 11:23 AM

589. natasha wrote:
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Sat, September 17, 2016 @ 4:06 PM

590. Stephanie wrote:
Hi mu name is Stephanie i have a high ferritin is really high like 1456 been this way for years lastyear it was 2056 im so tired joint pain muscle pain i go to the dr all the time no one can tell me why or whats wrong ive been to 3 different dr and still the same i dont know what else to do it all started 8 yers ago when i was pregnant with my lat child i had to have blood transfusions but they said it should be down by now couse i havent had no more in 8 years maybe yall can help thanks

Tue, September 20, 2016 @ 7:41 PM

591. joseph wrote:
It occurs to me that there may be an issue with iron supplementation of foods. These most easily absorbable salts of iron (reduced iron) may be our worst enemy. Beyond not eating meat, we should look at not eating any foods so enriched.

Does anyone else have such ideas or info about this?


Wed, September 21, 2016 @ 4:22 AM

592. Diane wrote:
My genetics are Irish, Scotch, English and French with the majority being Irish. I read that Irish and Scotch descendants have a high incidence of HH, like 1 in 50, while Americans have an average of 1 in 250, but have not verified this info other than in a book I read about HH back in 2001 when I was diagnosed. I have both genetic markers and my ferritin was 1,630 at diagnosis in 2001. Apparently both parents were carriers but did not have the condition. However, both paternal grandfathers passed away in their 40's, one from cancer and the other of heart attack, both that can be caused by HH. While I read that coffee and tea can hinder iron absorption, I also read that there is little we can do about absorption of heme iron that comes from meats. I also learned that clams, oysters, mussels & shrimp, whether raw or cooked, have the highest iron content of all meats, including beef. I LOVE them all, but have tried to limit my consumption since my diagnosis, though it can be a chore for a foodie like me. You should absolutely check all foods you purchase for their iron content because so many are iron fortified and can be VERY high. Good luck!

Fri, September 23, 2016 @ 8:57 PM

593. Kasey wrote:
Hi All,
It's somewhat relieving to find this blog and feeling that I am not alone in this wagon. I am 64 y/o very active (used to be) until I had food poison past Labor day holiday. After coming out of the ER and recovering from the onset, I felt I was too weak to be the same state as I was. Unfortunately, I saw an add for energy stimulant (chines herb) containing deer horn with deer blood extract. Well after two weeks taking it, I noticed it was getting worse. I had blood test done and ferritine level was 840 with saturation at 49%.

I'm about to see hematologist next Monday and expecting to give blood weekly. (I already visited Red Cross once for blood draw) My question to many of you who may have drawn blood weekly, how did you stay tolerance? I figure I need to be feeling okay to continuous blood drawing and would like to know how can I maintain energy. What was diet routine? Unfortunately, I am still working and needs to be stay sharp as what I do. If the weekly blood work is not optimal for work, I may need to take time off.

Can anyone make comment?

Thu, October 13, 2016 @ 8:52 PM

594. Gay Buffington wrote:
Hi Everyone,
I have been reading all of the posts and find them very interesting. Last year during routine blood work my moms GP found out her iron levels were high, around 1500 I believe. He recommended that she see the oncologist she went to when she was diagnosed with breast cancer a few years ago. To make a long story short, she still has not gotten in to see the oncologist, the appointments keep getting postponed, due To the doctor he says there is nothing to be concerned about. Is this true should I be pushing harder. My mom says she doesn't feel any different but I notice some things changing in her mostly in the last 6 to 9 months(keep in mind she is 76 yrs old). Forgetfulness, tired, gets flush, and less tolerant of things. Which is completely different than she has every been in her life. Please if anyone can give me some pointers on what to do I would appreciate it. Thank you, Gay

Tue, October 18, 2016 @ 12:46 PM

595. Lisa wrote:
My husband is from a family of 8 siblings, 5 of which have hemochromatosis. In the process of testing, his ferritin levels were only 800. He went for a blood test a few days ago; today he got a call saying his levels were over 2000 and he needs to go in tomorrow for a phlebotomy. He explained to the person on the phone that he actually has an appt with his Hematologist next week. They said they cannot wait that long, this needs to be done right away

We are alarmed at the sudden rise in his levels.

He really hasn't got a lot of symptoms but he says his stamina for exercise is kind of low (having said that, he's very active (53yrs old) and to see him work out, you wouldn't think that.

He's always suffered with headaches but recently he's had stabbing pains behind his eye.

I'm going with him to the hematologist appt next week. If anyone could give us any insight or advice, I'd appreciate it greatly, thanks

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Sat, October 22, 2016 @ 2:59 AM

597. RobE wrote:
Hi all - this summer I experienced some troubling symptoms, including patchy hair loss (alopecia), weight loss, and irregular heartbeat. I thought maybe I had hyperthyroidism, but went to the doctor and got all my blood tests, and the thyroid hormones checked out normal. However, several of the Iron Panel tests were not really normal; transferrin saturation was 53%, and ferritin was 359. The doctor said that these are both "on the high end of normal", and not to worry because they could not possibly be causing my symptoms (although he had no idea what was causing the symptoms). I went online and did a lot of reading about iron overload, and I believe the high iron numbers ARE the cause of my symptoms (and they ARE above the reference ranges used by many other labs across the country). The symptoms continued after that, so I donated a pint of blood, and felt better almost immediately (irregular heartbeat stopped, which was getting bad). I also cut out my daily glass or two of wine with dinner, and that seemed to help, also. I guess my question is - should I just forget the doctors and keep donating blood every two months for a while, and hope that drops the iron numbers down enough...........or should I try to see a hematologist and have my blood drawn more frequently, to get the high iron numbers down sooner? One problem is that I don't think my regular doctor will even give me a referral to a hematologist, because he refuses to believe that I have any problem with iron overload!! Any advice would be appreciated.........

Mon, October 24, 2016 @ 2:48 PM

598. Kathy wrote:
I am a 29 year old female and my iron is too high. Iron level is 223 and iron saturation is 62. What could this mean? Is is dangerous?

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Sun, November 20, 2016 @ 7:24 AM

600. Matthew C Main wrote:
I have been going to family doctor for over a year with multiple symptoms. First I started having heart palpitations and then anxiety attacks at work. My doctor put me on blood pressure meds, heart mes, and anxiety meds. And then it kept going it didnt get any better. Heart rate was 140 BP was 160/140 and I am only 36. Finally I told her to refer me to a GI and Cardiologist to find out what was wrong. All Heart tests came back great, colonoscopy and endoscopy was fine. Downside me ferritine level was 3040 and I had a liver biopsy 11/15. I find out results 11/29. Hope it is HH and I dont have any permentant damage.

Tue, November 22, 2016 @ 5:42 PM

601. Sabrina wrote:
I have C282Y Hemochromatosis Level when discovered 2003. Everything I have read says women should be at a level of 50/200 one even said 150. I have had 15 litres taken from me to get nearly to my level. Still working on it. Joint pain so severe at times could not walk. Bottom of feet very painful. Someone commented above that their levels were 300. I would suggest you still need to have blood taken to get down to the correct level. I am still having pain and my Ferritin level is down to 61 but my Iron is still 40 which should be about umol/L (7-27). So my Doctor says it still has to come down. As recently my fingers, index and pointer became very painful and cannot close to a fist in the mornings. I have learnt this is called Iron Fist. A common problem with Iron overload. It has taken over a year to get down to this level. If you are unwell expect your levels to rise. If you have high blood pressure and if your pulse rate is to high they would never take my blood. This caused me anxiety at the time. I wanted them to take my blood because of the pain I was enduring. I am finding it to be a juggling act to know when to have blood taken. So keep having tests to see where I am at, then decide if I need to have a Venisection.

Sat, November 26, 2016 @ 3:27 PM

602. Elida N. Cuellar wrote:
I am a 38 year old woman diagnosed with hemacromatosis resulting from an autoimmune anemia, hemacromatosis has brought me diabetes. My Ferritin levels are at 8200, I am being treated with Exjade at 1500 mg twice a day and for my diabetes I just started with 14 units of insulin at night only, also combining with Metformin 500 mg ER twice a day. I would be very helpful if someone could advise me about a nutritionist specializing in hemochromatosis and its complications. Thanks for the time and space of this blog.

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Mon, December 26, 2016 @ 2:35 PM

605. Diane wrote:
Hello all.
My iron isn't nearly as high as most on this blog; 329
However, I'm experiencing a mental "fogginess", fatigue and an inability to focus. Does anyone else have these sort of problems? Thank you for reading!

Wed, December 28, 2016 @ 10:20 AM

606. M wrote:
My son was just told he has feretin level 1400--4x normal. Have seen hemotologist who is doing bloodwork but feels he may not have hemocrematosis but will know when labs return. Has not recommended he do anything in the interim. My son is constantly tired has joint pain and abdominal discomfort. Has vomited and has fever of 101-102. Has anyone else experienced the vomiting or fever? And can anyone tell me how long before damage is done from elevated feretin levels? He is 20. Thank you.

Mon, January 2, 2017 @ 6:29 AM

607. jill wrote:
Has anyone had problems with miscarriages? I have had seven (no live births) without any reason ever being found. They ran the standard tests for lupus and genetic and clotting disorders, etc. Everything is negative.I have other symptoms, fatigue, joint pain, dizziness, etc. I have been to doctors over the years and treated like a hypochondriac. Recently went to the hospital because I felt like I was having a heart attack, I had seen symptoms of iron load diseases on the internet and asked about the possibility. The emergency room doctor told me I have an anxiety disorder and offered me sedatives. On paper I look very healthy, he insisted my other blood work would be off if I had an iron disorder, and declined to test me for one. Any advice?

Mon, January 2, 2017 @ 4:51 PM

608. Cris wrote:
Hemachromatosis genetic was negative but have high levels on other tests. One doctor said hemachromatosis other one says no and I'm fine.
I'm 44 yr old female and the's are my
Loss of motor skills -falling down, tripping, unsteady can't lift legs

Extreme fatigue

Joint pain and swelling going back 20 plus years

Loss of period-menopause?

Body hair stopped growing

Eyes burn, light sensitivity,  cataracts, huge change in vision, cataracts

Edema in calfs and feet up to thighs now-pain inner thighs and back of calfs -20 lb in water weight

Unexplained bruising

Extreme, debilitating  foot pain caused by newly dx peripheral neuropathy

Loss of appetite-don't eat for days and when I do it's 2 or 3 bites-list 60 lbs in 6 months

Taste buds are not right.  Food is either tasteless or bland

Brown discoloration on face

Reoccurring thrush infection. 6 times

Brain fog-can't come up with words, forgetful, inability to reason or follow complex thoughts or plots

Low grade fever-skin hot to touch but feel cold. Can't seem to regulate temp-always cold

Ultrasound revealed fatty liver.
Blood test shows iRon saturation at 72% and serum ferritin at 352 ug/L

Hematologist says levels are fine and nothing is wrong. Do I accept or get second opinion?

Please help. I feel I'm back at square 1

Sat, January 7, 2017 @ 5:41 AM

609. Lisa wrote:
I am 58 this month. I was diagnosed with hemocromatosis in 2013 with two of the same mutated gene...I would have to look at my paperwork for which one. Because I have been very fatigued my primary care physician took my ferritin, iron, percent saturation and TIBC. However, I have seen some articles that because she did not have me fast and I am on daily prescription omeprazole which she did not have me cease before the bloodwork that it might have affected the results. From what I read the omeprazole can cause iron anemia and I am thinking that it could be keeping my iron levels down because of it...which I don't know if doing it that way is good or bad....I guess I am asking. Been on daily prescrip omeprazole 40mg for 2 years or more for hiatal hernia. Usually my gastronologist does the bloodwork and after I did it I remembered he had me fast so I was running some searches. Should have have this bloodwork done over and temporarily cease the omeprazole and fast before?

Mon, January 23, 2017 @ 7:56 PM

610. johnson wrote:

Wed, February 1, 2017 @ 8:51 PM

611. Kathy Richard wrote:
I have had iron overload for twelve years, I do phlebotomy every eight weeks, my levels are good, but this time it took them three sticks to find a vein. What happens when no more veins are available?

Sat, February 4, 2017 @ 10:59 AM

612. Jonas wrote:
I am a 27 year old male, recent blood work as shown my ferritin is 480. I went to my doctor with fatigue and low libido. I am very active and workout lots and have a physical job. My saturation was .5 and iron was in normal range (Can't remember the number). Does anyone know if donating blood will help with my two symptoms once my ferritin is lowered? I was tested for Hemachromatosis and only had one gene for it, my doctor said it was highly unlikely for it to affect me.

Wed, February 8, 2017 @ 11:43 AM

613. Jonas Advice wrote:
Donate blood - it will lower the iron level.

Fri, February 10, 2017 @ 8:56 AM

614. Paul wrote:
Does anyone have a guess on how much the ferritin levels go up each month if left untreated?

Sat, February 11, 2017 @ 10:10 AM

615. Bonnie wrote:
I am a 62 year old female. At age 40 I spent 14 days hospitalized with a brain hemorrhage. I was just diagnosed with hemochromatosis several months ago. I live a healthy life style (no prepackaged foods, no fast foods). I was very active (5 days a week at the gym, biking or playing golf. Weeks before my diagnosis I experienced extreme fatigue, joint pain and loss of appetite. I went to the doctor and was diagnosed with polymyalgia. A disease that I had had several years ago. After 3 month of prednisone my symptoms got worse. I requested the specialized test to check for hemochromatosis, a disease I knew could be inherited. Most people do not realize that when a doctor does a complete blood work, it will not show up. This is a specialized test. I started giving blood and my symptoms are improving. With this test doctors are able to see if you have the genes for this disease. If you inherit one your chances of getting it is 20%, two genes 100%. The sooner you know the better your chances of not having organ damage.

Wed, February 15, 2017 @ 11:07 AM

616. Kenneth wrote:
I was diagnosed 3 weeks ago with the HH disease. I have 2 mutations "C282Y & H63D". My iron level was 1042 and saturation level was 83%. I'm 46 year old male. I have not felt good for around 5 years but just assumed it was because I was getting older. Main symptoms are fatigue, weakness, some joint pain, heart flutters, and did I mention fatigue! Luckily my doctor suspected the HH disease after normal blood test showed these high levels and my liver enzymes levels were high. Doctor ordered more blood tests and DNA testing. Hoping my liver has little damage due to my age. Doctor ordered me to start phlebotomies 2 times per month. Went for my 1st one yesterday and fainted when they pulled out the needle. Blood pressure dropped 30 points. This was my 1st time to ever give blood except at Dr office. I absolutely hate needles in my veins. Any suggestions to make this process any easier since this is obviously going to be a routine in my life now? Do you ever get used to the phlebotomies?

Fri, February 17, 2017 @ 3:34 PM

617. Kenneth wrote:
Ray, my doctor said the H63D mutation is positive for the HH disease. I would get a second opinion.

Fri, February 17, 2017 @ 3:58 PM

618. Susan wrote:
I just got my health fair results back, and I noticed that every year my iron-related tests have gone up. My current levels are: total iron 212, Hematicrit 50.2%, Hemoglobin 16.5%, Percent Saturation 68% - all above the normal range. But, my Ferritin is only 44. Low Ferritin, high total iron. Any reason to be concerned? I see number in is blog MUCH higher than mine, so not sure. Thanks!

Fri, February 17, 2017 @ 7:56 PM

619. Karen wrote:
On comment #6 some guidelines are given for different ferritin levels. Can anyone confirm that this is correct and give a source that the info comes from? In all of my research I have never found any guidelines that stated it was ok for women of a certain age, or post menopausal to have ferritin levels above the usual guidelines.

Thank you for your time.

Fri, February 24, 2017 @ 5:40 PM

620. Jennie wrote:
My doctor discovered my iron levels were high years ago and it took 4 venesection so to finally bring it down to an acceptable level. My friends thought that I might be anaemic as my daughter often is but to our surprise it was the opposite. My original doctor used to send me foms to have it tested every 6 months as she preferred to keep it on the slightly low level. I do not have Haemachromotosis which at the time she found unusual and she had another male patient at the same time with this problem. Unfortunately she retired and ever since I have struggled to even have a doctor willing to test me with my doctor recently telling me "your iron levels are what they are and don't change"??????? I can usually tell when I think it is high and often end up with a massive nose bleed which seems to help relieve how I feel. He finally ordered a test this week but was not happy about it. I will find out the results on Monday. He is not the only doctor who has been reluctant to do an iron test and it has always been on the higher side.
Why are doctors so reluctant to have my iron levels tested. I worry about the damage it can be doing. I am riddled with arthritis and am about to have my second knee replaced and wonder if this is a result of high iron levels.
I appreciate your time.

Wed, March 1, 2017 @ 5:05 AM

621. Longhairdfreak wrote:
Hello. I am a 42 year old male. I want to say I have all the symptoms, have had terrible depression and anxiety, and mood swings out of control. I just separated from wife because of how" lazy and angry " I was becoming. She could not take it. My ferritin is much lower than some here, 409. I am hypothyroid and take synthroid but the last test was 6.62. normal is 4. Could I have it? I am of Icelandic decent and I have read that they believe the original mutation started with them and then spread as they raped and pillaged with their expansion. I have not been able to work for 6 years. To complicate matters, I have a spine injury so lots of symptoms could, I suppose, be mixed in. My guts are always hurting, can't digest food right. Joint pains popping up for days at a time so bad I can't walk my kids. Could I have it with ferritin as low as 409"

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Mon, March 27, 2017 @ 4:07 PM

623. TueMan wrote:
I have health anxiety and lost appetite and weight from 180 pounds to about 170 pounds.

Did a routine blood test including Alt and hypothyroid and results were:

Borderline high on RBC , 1400 on ferritin.

GP said everything is normal and that he didn't worry about the high ferritin because everything else shows normal levels. Says it could be from being sick such as a cold/cough that just healed or from my back pain/sciatica that just developed.

Said I can do another blood test in 3 weeks if I worry. He didn't seem like worrying one bit and said you need to look at the full spectrum of things on a blood work to determine if anything is wrong.

Should I be concerned right now with just high ferritin?

Tue, April 4, 2017 @ 5:55 AM

624. Anetha Prater wrote:
I had 9 infusion almost 2 years ago as my Ferritin level was 9. Now my Ferritin is high even after two years. Can anyone tell me why it could still be high? I know it is usually high right after the infusions, but two years later is strange don't you think? I also have these strange sores on my arms, back of neck and scalp that my Doctor told me was Folliculitis but had a long round of anitbiotics over two months ago and it hasn't gone away. Wondering if this could be due to high Ferritin levels.

Mon, April 10, 2017 @ 7:57 AM

625. Jill rose wrote:
Dads ferritin is 521, tbic 303, iron 100, saturation 33%. Alzheimer's, neuropathy, pacemaker,restless legs, cateracts, dark skin on his arms, very think skin, fungal skin infection ( or so they think, no one can figure it out ) Blood bank won't allow blood donation with pacemaker. Thoughts on this blood work? Where do we go from here? What information can I use to convince his PCP that he needs therapeutic phlebotomy? What kind of doctor or specialist should I schedule him with? Thank you so much for your help everyone!

Sun, April 16, 2017 @ 7:41 AM

626. Pete wrote:

I'm a 62-year old male. My ferritin levels have been consistently between 500-800 in the last 10 years, or so. Last time I checked, in Dec. 2016, ferritin was at 786.

Hemochromatosis lab test, done 10 years ago, came negative. My family doctor does not seem to be worried about any of this. Should I be? I have even seen a hematologist 10 years ago, when my ferritin was around 600. At that point, with high ferritine, but no hemochromatosis diagnosed, he didn't know what to tell me, other than ferritine can go high for a variety of different reasons.

I honestly don't know what to do. No hemochromatosis, but high ferritin - am I slowly damaging my organs?

Sun, April 23, 2017 @ 2:04 AM

627. Joel wrote:

I'm a 29 yr old healthy male and recently had my blood test done at a health fair. All my measurements came back normal aside from my iron serum which was 200 (reference range 50-195 mcg/dl). Could this number just be temporarily high? Or should I do a more thorough iron panel? Thanks.

Sat, April 29, 2017 @ 6:54 PM

628. Paul wrote:
I was diagnosed with hemochromatosis about 10 years ago. We moved to another state and I had a checkup and they told me I did not have Hemochromatosis but I had fatty liver. That was right after being diagnosed. I had a second opinion and again was told it was fatty liver. My ASt and ALT was very high but now it is within normal range. I still have ferritin level of between 750-800. My iron and iron binding capacity test came back with Iron 162 ug/dl, Iron binding capacity 247 ug/dl and Percent Saturation 66%. I also had a test done and it showed stage three Fibros Chirrosis. I do need to lose some weight still but am I am still concerned that I have Hemochromatosis and without giving the blood it is not going to get better. Not sure where to go from here.

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633. Jill wrote:
Looking for some insight: I have been getting more and more sick for a couple of years. My symptoms are heart palpitations, neurological issues,bright red skin (dilated capillaries) on thighs, stomach, upper arms, hands and feet but not other areas much, painful nodules in the large muscles that can be palpated but do not show up on ultrasound, sore swollen hands, fatigue, lack of focus and increasingly blurry vision. I've had 4 new eyeglass prescriptions in less than 12 months. I've always had a sensitive stomach but now I feel very sick after I eat: light headed and bloated, so i am losing a lot of weight rapidly. I was diagnosed with B12 deficiency last year and am being treated with good effect (pernicious anemia runs in the family). My B12 levels went from ~200 to 800-1000. I was also diagnosed with celiac disease in Dec, which I definitely did not have until the past few years. I had my iron levels tested and have total iron: 172 mcg/dL TIBS 306 mcg/dL, % saturation 56% and ferritin at 25ng/mL I'm a 42 year old female, not pre-menopausal but I was on Mirena for most of my 30s which suppressed my periods. My GP just quit with no warning and the hematologist wouldn't take my referral so I need to find a new doctor, I know, but I don't know where to start?

Fri, September 1, 2017 @ 1:02 PM

634. Dean wrote:
Greetings. I recently got a iron serum test done and my iron serum was 262. I have just ordered the other iron blood tests and am abit nervous. I use cast iron ware some and have a well which I suspect the well water could be high in iron. There is a doctor I think has a good handle on iron overload I thought you all may want to read his article on iron overload. http://drlwilson.com/Articles/IRON.htm

He tries to address food you eat and many ways to lower iron in the blood. I hope you all get as much out of this article as I have. Good luck and best wishes for you all!

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637. Justin wrote:
Hi, I just discovered I have the double mutation for HH through genetic testing. My serum ferritin was 129 and serum iron was 137, both fine. But my iron saturation was high at 60%, tibc was low at 229, and uibc was low at 92. Should I be concerned? Anyone else dealt with this? Luckily apparently my current diet has been very HH friendly, tons of calcium, coffee, tea, soy, oats, and very little red meat.

Sat, December 16, 2017 @ 12:09 PM

638. Ann wrote:
Anyone from the San Antonio area with HH? I’m having difficulty finding a dr up to par and with a $7,000 deductible, I would like to find a place with affordable phlebotomy. I have just been diagnosed. Age 50, have both genes, serum iron 1007 and saturation 86. Liver function fine. Primary care doc said give blood once every 2 months and I’ll be fine. Got into a gastroenterologist and he sent me for a blood test for liver which will indicate how much scarring. Liver biopsy on the horizon. Believe I will pass. Treatment is the same-phlebotomy. It was a fluke I was tested. I go from not worrying to wanting to scream why can’t I get any doc to start rx for phlebotomy!!!!! Respond to Denhawken@yahoo.com

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Fri, February 16, 2018 @ 7:46 PM

642. Kay wrote:
After reading many of these posts, I am very hopeful that if there is something going on with me, it will be solved. I am 50 and my iron level is 200. My IBC is normal, as is my ferritin, but my saturation was 73%. I feel like I am getting mixed messages. I have joint pain and often have mental “fog” so to speak. Does it make sense to have normal ferritin levels?

Tue, February 20, 2018 @ 8:48 PM

643. Alison wrote:
Can birth control pills raise you total iron serum and saturation percentage (but not your ferritin?) I have high of both however my ferritin is almost low at 15. Not sure why my saturation is so high at 63 percent!

Fri, February 23, 2018 @ 12:16 PM

644. Jan wrote:
I went to the gp for a blood test (iron study) after my 38 yr old son was diagnosed with heamochromotosis. My GP has left a message on my answerphone requesting a second, fasting test. When I called to book the receptionist was reluctant to give me any details of my t4est, but did tell me that the serum level was 40, and the transferrin was 85%. I am unable to understand this, is it bad?

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Tue, March 6, 2018 @ 5:43 AM

647. Richard wrote:
I am an 84 year old male with MDS. Diagnosed in May of 2017. I am transfusion dependent and have been receiving transfusions every week. On my ferritin blood test in November was 1100. When I asked the doctor if I should be taking medication he said the side effects would outweigh the treatment. My last appointment Mar 3rd my ferritin was 4565. Now the doctor has decided to treat it. What are my chances. I have been on a treatment of Vidaze for 8 months. The treatment has stabilized my MDS. I was feeling a little weak but have been able to live a somewhat normal life. I have asked two doctors if I should be on a special diet and both said no. Now I find out how important it is to limit foods containing Vitamin C and Iron .

Sun, March 11, 2018 @ 9:54 AM

648. Valerie wrote:
I am a 44 year old menopausal went to a dermatologist because I was experiencing hair loss. She ran some tests (including one to see if I was anemic). It turned out that my iron level is 163 which she said was very high. But because she didn't think it was part of my hair loss we started to discuss other things. I go back to her (because I was also vitamin D deficient) in 4 months. Now that I have googled it, the iron level seems high. Should I see a general practitioner, a hematologist or just wait until I go see her again? Any thoughts are appreciated.

Thu, April 5, 2018 @ 1:31 PM

649. Valerie wrote:
I meant to say pre-menopausal

Thu, April 5, 2018 @ 1:40 PM

650. Dina Warren wrote:
I went to the doc had regular blood work my iron level was 200 and saturation level 75 he is sending me to a hemotologist I go on Tuesday I'm a little freaked out over this because I had gastric bypass 8 years ago my iron should be low not high so confused

Fri, April 13, 2018 @ 1:48 PM

651. Kathleen Lienhard wrote:
I am a 63 YO female. Homozygous HH, Deironed 8 years ago. Ferritin was 850-1000 at that time with a normal untrsound. Intermitently mild elavated ASt and Alt, One phlebotomy evey 3 months.

My ferritin runs at about 100 every 90 days.

6 months ago my ferritin was 103. Transfer saturation 43 %. One phlebotomy. this week ferritin 103 with Iron saturation of 93 %. Mild elavation of Ast, Alt normal.

Im confused with such a high Satyration rate and modest ferritin.


Thu, April 19, 2018 @ 1:09 PM

652. MaksiKtof wrote:
Кто играл в ПУБГ?
Я тут увидел ролик на youtube о том, как стримеры играют и был в шоке...
Вы знаете о макросах для мышки A4tech? Как работают приватный макрос для ПАБГ?
Я посмотрел всевозможные видео по макросам для ПАБГ. Крутое видео.
Ссылка на видео, где люди убирают отдачу у оружия в ПУБГ: Макросы на пубг

Wed, April 25, 2018 @ 10:27 AM

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Thu, April 26, 2018 @ 3:18 PM

654. wrote:
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to tell someone!

Thu, May 10, 2018 @ 2:24 PM

655. lorey wofle wrote:
The doctors said Herpes virus do not have medical cure because the virus is capable of hiding within the human cells, it remains protected from your immune system. Herpes isn’t a special virus – your immune system has the tools to fight it back. But because it is able to lay dormant in protected cells, your immune system is unable to remove it from your body,But with strong reactive herbal medication is capable of getting rid of the virus gradually and totally from your body without damaging any of your cells,natural herbs kills the virus totally not just reducing the out break. Get natural herbs cure from Dr Iyoha or reach him through his email: driyohasolutiontemple@yahoo.com or Call: +1 (407) 337-9869

Mon, May 14, 2018 @ 9:48 AM

656. lorey wofle wrote:
The doctors said Herpes virus do not have medical cure because the virus is capable of hiding within the human cells, it remains protected from your immune system. Herpes isn’t a special virus – your immune system has the tools to fight it back. But because it is able to lay dormant in protected cells, your immune system is unable to remove it from your body,But with strong reactive herbal medication is capable of getting rid of the virus gradually and totally from your body without damaging any of your cells,natural herbs kills the virus totally not just reducing the out break. Get natural herbs cure from Dr Iyoha or reach him through his email: driyohasolutiontemple@yahoo.com or Call: +1 (407) 337-9869

Mon, May 14, 2018 @ 9:49 AM

657. lorey wofle wrote:
The doctors said Herpes virus do not have medical cure because the virus is capable of hiding within the human cells, it remains protected from your immune system. Herpes isn’t a special virus – your immune system has the tools to fight it back. But because it is able to lay dormant in protected cells, your immune system is unable to remove it from your body,But with strong reactive herbal medication is capable of getting rid of the virus gradually and totally from your body without damaging any of your cells,natural herbs kills the virus totally not just reducing the out break. Get natural herbs cure from Dr Iyoha or reach him through his email: driyohasolutiontemple@yahoo.com or Call: +1 (407) 337-9869

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Fri, May 18, 2018 @ 9:06 AM

660. Tom wrote:
I am very disappointed with the medical advice I have been given (not given) by a series of four general practitioner Docs over the past decade. I am writing this to alert people that your Doctor likely does not "get" an association between high iron and fatigue and you may need to understand this to guide him or her in the right direction.

First off, my RBC labs which, out of frustration, I recently reviewed myself have been out of the normal high range for every blood lab for the past decade. In Dec. and again in May my latest Doctor ordered a Ferritin test along with other blood labs and thyroid tests. She was checking for an association of "low" iron with my fatigue. Amazingly, she alerted me that my labs looked fine and guided that wle might try reducing my BP medication. I say amazing because the Ferritin lab actually returned in both Dec. and May Ferritin levels above 600 (normal 30 - 400 per Kaiser). NOTE ON THE FALLACY OF NORMAL LEVELS AT THE END. She was obviously not at all aware that high ferritin in mature adults is a common cause of fatigue. I am not suggesting that she is a dummy, but the reality is in today's world Doctors must see at least 15 patients a day and we all move around so that there is virtually no longer such a thing as a lifetime relationship between patient and doctor.

One more thought here Ferritin tests are not commonly ordered along with a general panel of blood tests. However, the RBC count is always done and this is a good predictor of High Ferritin levels. Too much Ferritin/Iron in a cell impacts the ability of the cell to make energy and Iron can accumulate in cells with aging so we need to be especially sensitive to this as we age. So if you are a mature person who is wondering why in hell you feel so blah all the time take a quick look at your blood labs which are likely available online and see what your RBC level is. If this is high, above 500 mll/mm3 definitely alert your doctor and request a lab to test for ferritin.

On the false depiction of normal levels for medical guidance. In my experience, most doctors do not understand what normal means as a statistical reference to sampling. A normal range includes 95% of a population of samples. This however is not a step function range where say in a range of (30-400) above or below 30 or 400 is the first signal to do something. In a random sample, the results cluster tightly around a midpoint which in the example I used is roughly 200. 2/3 rds (about 68%) of that simple will fall what is referred to as the first standard deviation while the second standard deviation make up the remainder of the 95% range (roughly 28%). So, in my example the ranges for for the second std, dev is between 30-74 low endand 326-400 on the high end. It is most likely that no problem exists is that for tests results which fall in the first st. dev. (326-400) in my example. There is however more to this. However, if a test result falls in the second standard dev. and you are looking for the reason for an event this is a prominent bit of evidence. In my example a medical sample which falls outside of the range of (74 to 326) for my example is a strong indicator that there is an issue worth more investigation. Any semples outside this range are still Normal but they do indicate that the sample would be found in a small percent of the population.

In addition, one needs to look at the method used to create the ranges. For example, blood tests for aging men will indicate a wider range of testosterone which is lower on the low end because T in the majority of men decreases with age. The sample range commonly depicted mixes both ranges does not separate the population by age so old guys are averaged with men who are in their prime which result in an overall normal range with a low that is higher than it is for men in their prime. However, when one medicates using Test. Replacement therapy, the goal is normally to restore Testosterone to a healthy level which can best be judged best using the sample for healthy males between 20 and 40. The samples used by institutions like Kaiser are always portrayed using the broadest definition for sampling likely because, I suspect, Dr.s would not understand anything else. I bring this up in case you need to wrestle with your Doctor for treatment which results for his/her ignorance of the meaning of the term Normal which, as an aside Kaiser now refers to this using the even more ambiguous term of "standard range".

Your health is in your hands and the internet is a wonderful tool.

Stay Healthy,


Fri, May 18, 2018 @ 11:25 AM

661. Tom wrote:
I am very disappointed with the medical advice I have been given (not given) by a series of four general practitioner Docs over the past decade. I am writing this to alert people that your Doctor likely does not "get" an association between high iron and fatigue and you may need to understand this to guide him or her in the right direction.

First off, my RBC labs which, out of frustration, I recently reviewed myself have been out of the normal high range for every blood lab for the past decade. In Dec. and again in May my latest Doctor ordered a Ferritin test along with other blood labs and thyroid tests. She was checking for an association of "low" iron with my fatigue. Amazingly, she alerted me that my labs looked fine and guided that wle might try reducing my BP medication. I say amazing because the Ferritin lab actually returned in both Dec. and May Ferritin levels above 600 (normal 30 - 400 per Kaiser). NOTE ON THE FALLACY OF NORMAL LEVELS AT THE END. She was obviously not at all aware that high ferritin in mature adults is a common cause of fatigue. I am not suggesting that she is a dummy, but the reality is in today's world Doctors must see at least 15 patients a day and we all move around so that there is virtually no longer such a thing as a lifetime relationship between patient and doctor.

One more thought here Ferritin tests are not commonly ordered along with a general panel of blood tests. However, the RBC count is always done and this is a good predictor of High Ferritin levels. Too much Ferritin/Iron in a cell impacts the ability of the cell to make energy and Iron can accumulate in cells with aging so we need to be especially sensitive to this as we age. So if you are a mature person who is wondering why in hell you feel so blah all the time take a quick look at your blood labs which are likely available online and see what your RBC level is. If this is high, above 500 mll/mm3 definitely alert your doctor and request a lab to test for ferritin.

On the false depiction of "normal"levels for medical guidance. In my experience, most doctors do not understand what normal means as a statistical reference to sampling. A normal range includes 95% of a population of samples. This however is not a step function range where say in a range of (30-400) above or below 30 or 400 is the first signal to do something. In a random sample, the results cluster tightly around a midpoint which in the example I used is roughly 200. 2/3 rds (about 68%) of that simple will fall what is referred to as the first standard deviation while the second standard deviation make up the remainder of the 95% range (roughly 28%). So, in my example the ranges for for the second std, dev is between 30-74 low endand 326-400 on the high end. It is most likely that no problem exists is that for tests results which fall in the first st. dev. (326-400) in my example. There is however more to this. However, if a test result falls in the second standard dev. and you are looking for the reason for an event this is a prominent bit of evidence. In my example a medical sample which falls outside of the range of (74 to 326) for my example is a strong indicator that there is an issue worth more investigation. Any semples outside this range are still Normal but they do indicate that the sample would be found in a small percent of the population.

In addition, one needs to look at the method used to create the ranges. For example, blood tests for aging men will indicate a range of testosterone which is lower on the low end because T in men decreases with age. The sample range commonly depicted mixes both prime and aged ranges does not separate the population by age so old guys are averaged with men who are in their prime which result in an overall normal range with a low that is higher than it is for men in their prime. However, when one medicates using Test. Replacement therapy, the goal is normally to restore Testosterone to a healthy level which can best be judged best using the sample for healthy males between 20 and 40. The samples used by institutions like Kaiser are always portrayed using the broadest definition for sampling likely because, I suspect, Dr.s would not understand anything else. I bring this up in case you need to wrestle with your Doctor for treatment which results for his/her ignorance of the meaning of the term Normal which, as an aside Kaiser now refers to this using the even more ambiguous term of "standard range".

Your health is in your hands and the internet is a wonderful tool.

Stay Healthy,


Fri, May 18, 2018 @ 11:32 AM

662. Tom wrote:
Having read some of the comments/questions regarding High Ferritin levels, I am not sure how many understand that high Ferritin levels above 300 can be the cause of fatigue in aging humans..

A quick search of side effects of high ferritin yielded this.

Symptoms of excess ferritin include:

stomach pain
heart palpitations or chest pains
unexplained weakness
joint pain
unexplained fatigue

Since fatigue is also a common effect of high estradiol levels in Men, men, especially men involved with Testosterone replacement therapy, should always test for estradiol. when they have a T-test done which should be done twice yearly. Levels of estradiol above 30 ng/ml for males will likely result in fatigue, grouchiness weight gain, muscle loss and a dramatic increase the possibility of strokes. For men, estradiol should be in the 20-30 pg/ml range. This can be controversial with your Doc. for whatever reason. If you are using testosterone cypionate injections, it is common to see an uptick in estradiol. this is less common with the transdermal gels which unfortunately cost 10X what the injections cost.

Fri, May 18, 2018 @ 12:20 PM

663. sherica grant wrote:
I was infected with Genital Herpes Virus 10 month ago, ever since then i
have been searching for cure everywhere because i was feeling so
uncomfortable with it. I have been dating for almost 5 years until i
contracted Genital Herpes from my ex-boyfriend. since then I became very
sad about the whole situation, always going online checking if i could get
a cure to Genital Herpes, then i came across so many testimonies. Due to my
seriousness and eagerness to be completely cured, i became a victim of
fraud after contacting several so-called herbal doctors i was referred to.
I lost a lot of money but i didn't stop searching for a cure. Then one
faithful day, i came across a testimony of a lady saying that she got her
Genital herpes cured by a Great Herbal Doctor she called Dr Ofure by
contacting him through his email address. And she advised anyone with
Genital Herpes or Simplex Herpes to contact the herbal doctor for Herbal
Cure. I contemplated for about 4 hours whether or not to contact him. then
something inside of me told me 'Nothing good comes easy'. I then contacted
him through his email and told him my problem. He told me all the things I
needed to do and also gave me instructions to follow, which i did properly.
Just within weeks of drinking and applying the herbal medication he sent to
me through DHL delivery service, i started seeing changes, i went to my
medical doctor for check-up, i was so happy when the doctor told me i was
no more having Genital Herpes Virus, it was all tears of Joy from that
moment, People think herpes is really a minor skin irritation herpes has a
long term effects on health and if i could ever meet a Genuinely Great
Herbal Doctor. I'm so grateful to him. i am completely free from Genital
Herpes Virus, i introduced a family friend who have Simplex Herpes virus to
him, He called me and told me he was also cure completely. I promised to
share my own testimony like that of the lady on the internet. Friends, If
you are also struggling with Herpes disease you can as well Contact him via
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Mon, May 21, 2018 @ 3:47 AM

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Tue, May 22, 2018 @ 5:06 PM

665. Fitcher Grey wrote:
Seeing is Believing and That how i got myself completely Cured from (HERPES SIMPLEX VIRUS) I was told by my medical doctor that i have HERPES Few years ago, and ever since i have been taking different kinds of medication and yet no improvement until i saw testimonies of Dr.Mabuwa on how he has been curing people from different kinds of diseases. Although i was skeptical about contacting him, i also knew the importance of herbal medicine, then i made up my mind and contact him we talked and he prepared and send me the medicine which i took according to his instructions. Now I’m so happy that I’m free from HERPES. My heart is so filled with joy, thank you so much Dr.Mabuwa for curing me. If you are reading this and you have HERPES or any other disease you can contact him on this Email address: drmabuwasolutioncuretemple@gmail.com or Whats App him on this number: +2348130714541 Or Visit his Website for more info: https://drmabuwasolutioncuretemple.com/contact-me/ He cures all manner of diseases like.

Fri, May 25, 2018 @ 12:12 AM

666. Barbara Hank wrote:
I had a recent blood test that showed my serum iron:190. I looked over the last 3 years of blood tests and noiced the serum iron ranged 190-220. I went to my doctor and told him that my symptoms of arthritis (2 joint replacements 9 years ago @ age 50), hair loss, achiness, etc., Could be symptoms of HH and asked him to do a ferritin iron test and test for my iron saturation. He decided to do the ferritin and a red blood count. To my relief today, my ferritin level was 176. He only recommended having another blood test in a year. Instead I went and donated blood yesterday. I feel that my ferritin level is out of the range of (40-60) and at a minimum phlebotomy should have been recommended. Also, I have always tested slightly above range on bilirubin total (1.3- 1.7) and this doctor automatically diagnosed me with Wilson's disorder). I am hoping for some input from all of you wonderful folks who have helped educate me (spent hours on you website reading). Thanks so much to all who have contributed to such great information and stories.

Fri, May 25, 2018 @ 1:31 PM

667. Greiner Chad wrote:
God bless Dr. Myron for his marvelous work in my life, I was diagnosed of HIV since 2010 and I was taking my medications, I wasn't satisfied i needed to get the HIV. out of my system, I searched about some possible cure for HIV i saw a comment about Dr. Myron, how he cured HIV with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine through UPS SPEED POST. I took the medicine as prescribed by him and 8 days later i was cured from HIV/HERPES,thank you drmyronherbaltemple@gmail.com Dr Myron ONCE AGAIN THANK YOU SIR
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Mon, May 28, 2018 @ 4:03 PM

668. ashanti jacobs wrote:

This is real take it serious, who will believe that a herb can cure HERPES SIMPLEX, i never believe that this will work, i have spend a lot getting drugs from the hospital to keep me healthy, it got to a time that i was waiting for death to come because i was broke, one day i hard about this great man called DR, ALEX who is well know for HIV, HERPES SIMPLEX, and Cancer cure, i decided to email him I didn't believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepared a herbal medicine (CURE) and sent it through Online corier Service for delivery, he gave my details to the corier Office. they told me that 3-5 days I will receive the package and after receive it, i took the medicine as prescribed by him at the end of the one week, he told me to go to the hospital for a check up, and i went, surprisingly after the test the doctor confirm me Herpes simplex virus negative, i thought it was a joke, i went to other hospital and was also negative, thank you for saving my life, I promise I will always testify of your good works. if you are herpes simplex virus patient, OR you are be helping by someone before i will like to advice you to give this man a try and see what will happen to your life don't worry about the money you have be use contact him and I am sure you will get cured, contact him via: Email: dr.alexnaturalhabalmedicine@gmail.com or call +2348070685053 AND whatsapp him on same number. you can also confim from me in my email

This is real take it serious, who will believe that a herb can cure HERPES SIMPLEX, i never believe that this will work, i have spend a lot getting drugs from the hospital to keep me healthy, it got to a time that i was waiting for death to come because i was broke, one day i hard about this great man called DR, ALEX who is well know for HIV, HERPES SIMPLEX, and Cancer cure, i decided to email him I didn't believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepared a herbal medicine (CURE) and sent it through Online corier Service for delivery, he gave my details to the corier Office. they told me that 3-5 days I will receive the package and after receive it, i took the medicine as prescribed by him at the end of the one week, he told me to go to the hospital for a check up, and i went, surprisingly after the test the doctor confirm me Herpes simplex virus negative, i thought it was a joke, i went to other hospital and was also negative, thank you for saving my life, I promise I will always testify of your good works. if you are herpes simplex virus patient, OR you are be helping by someone before i will like to advice you to give this man a try and see what will happen to your life don't worry about the money you have be use contact him and I am sure you will get cured, contact him via: Email: dr.alexnaturalhabalmedicine@gmail.com or call +2348070685053 AND whats app him on same number. you can also confirm from me in my email







(6) HPV



(9) ALS










(18) ASTHMA.


I cant stop talking about this man called DR, ALEX Because he is the only doctor that can care HERPES SIMPLEX and all kind of disease.....hes a God sent to cure humans from different DISEASES with herbal medications, he cured me of GENITAL HERPES, he will also help you. Contact him today and you will have a testimony Good luck







(6) HPV



(9) ALS










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I cant stop talking about this man called DR, ALEX Because he is the only doctor that can care HERPES SIMPLEX and all kind of disease.....hes a God sent to cure humans from different DISEASES with herbal medications, he cured me of GENITAL HERPES, he will also help you. Contact him today and you will have a testimony Good luck

Thu, May 31, 2018 @ 5:12 AM

669. Barry Juliet wrote:
Am Barry Juliet by name, i was diagnosed with Herpes for 3years ago i lived in pain with the knowledge that i wasn't going to ever be well again i contacted so many herbal doctors on this issue and wasted a large sum of money but my condition never got better i was determined to get my life back so one day i saw mr Brown post on how Dr Odugu saved him from the VIRUS with his herbal medicine i contacted Dr Odugu on his email address oduguspellcaster@gmail.com we spoke on the issue i told him all that i went through and he told me not to worry that everything will be fine again so he prepared the medicine and send it to me through courier service and told me how to use it,after 14days of usage I went to see the doctor for test ,then the result was negative,am the happiest woman on earth now. this testimony is real.thanks to Dr Odugu God bless you.

Fri, June 1, 2018 @ 6:52 AM

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Fri, June 1, 2018 @ 8:40 AM

671. jenny wrote:
HELLO everyone! Still don’t know the right words to express my Gratitude to the Great Dr.Care, After been diagnosed with the [HEPATITIS B] VIRUS for the passed 5yesrs, i was given so many health prescription and advice with no improvement, I totally lost hope, until i found many testimonies of Great Dr. Care, from Europe in an online research on google, Like anybody would be, i advice any one that is living with hepatitis B virus should Contact the one and only Great Dr.Care today,from Europe because it has the cure to any virus problem contact him by Email: at [ drcarevoodoospell@gmail.com ] call or whatsApp him on +393510620692

Tue, June 5, 2018 @ 11:54 AM

672. LADY KATHRINA wrote:
PERFECT CURE FOR HERPES THAT WORK FAST WITHIN 14 DAYS WITH DR AZIBA HERBAL MEDICINE, I saw so many testimonies about Dr AZIBA a great HERBAL DOCTOR that will help you CURE and give you the rightful health to live a joyful life, i didn't believe it at first, but as the pain got worsen and my life was at risk after using lots pf drugs from the hospital and no changes so i decided to give a try to Dr AZIBA, I contacted him also and told him i want a cure for HERPES, he gave me advice on what i must do and he deliver it to me in my home address i gave him and i got the medicine which i use according to his instruction, and today i must say I am so grateful to this man Dr AZIBA for curing me from HERPES and for restoring me back to my normal health and a sound life and i am making this known to every one out there who have been trying all day to be cured from HERPES or any sickness should not waist more time just contact him with his details below, believe me this is the only way to get cured from HERPES, this is the real solution we all have been searching for. Do not waste more time contact him today for you can also leave a sound and happy life. contact info below. Email: Priestazibasolutioncenter@gmail.com or WhatsApp or Call him on: +2348100368288 and Website: http://drazibasolutioncenterworldwide.webs.com you can as well contact him on other issues you are having like HEPATITIS B,DIABETICS,CANCER,ALS, HIV,BODY REDUCTION AND Enlargement, FIBROD,CANCER,PREGNANCY, Relationship issues etc..
Email: Priestazibasolutioncenter@gmail.com

Tue, June 5, 2018 @ 4:57 PM

673. Avery wrote:
I have been suffering from Herpes for the past 1 year and 8 months, and ever since then i have been taking series of treatment but there was no improvement until i came across testimonies of Dr.Isai on how he has been curing different people from different diseases all over the world, then i contacted him as well. After our conversation he sent me the medicine which i took according to his instructions. When i was done taking the herbal medicine i went for a medical checkup and to my greatest surprise i was cured from Herpes. My heart is so filled with joy. If you are suffering from Herpes or any other disease you can contact Dr.Isai today on this Email address: drisaiherbalcenter@gmail.com or WhatsApp him on this Tel.Number +2349034352176. He said he also have a cure too all these diseases.

Hepatitis A AND B
Chicken Pox
Human Papilloma Virus(HPV)
Cerebtospinal Meingtitis
Chagas Disease
Alzheimers Disease
Schizophrenia. E.T.C.

Thu, June 7, 2018 @ 9:14 PM

674. Amber Susan wrote:
Hello my fellow Americans please let show love to each others because we are all one, i suffered herpes virus many years ago, and i have been to different hospitals still yet the herpes virus spread each an everyday. one day i came across Mrs Jane from New York sharing how she was cured from this herpes virus totally, i have know option than to contact the man called Dr Ose that help her put an end to the herpes virus within 14 days and also explain my problem to him. He also help me by preparing a native herbal medicine that flush the herpes virus from my body system and the one on my skin clear at once after using the native cream he also prepared for me. , my advice to those that is passing through this problem don't be ashame to contact and share your problem well to Dr ose because i also believe he can put an end to your situation within 14 days please Americans let unite together to make sure we put an end to this herpes virus please share this testimony to those that also need help and if you want to be free without any virus email him direct now on droseherbalcenter@gmail.com or call and whatsapp him on +393512872745






Tue, June 12, 2018 @ 5:05 AM

675. love wrote:
Natural herbs have cured so many illness that drugs and injection cant cure. I've seen the great importance of natural herbs and the wonderful work they have done in people's lives. i read people's testimonies online on how they were cured of herpes, HIV, diabetics etc by Dr. Obor herbal medicine, so i decided to contact the doctor because i know nature has the power to heal anything. I was diagnosed with HIV for the past 7 years but Dr. Obor cured me with his herbs and i referred my aunt and her husband to him immediately because they were both suffering from herpes but to God be the glory, they were cured too .I know is hard to believe but am a living testimony. There is no harm trying herbs. He is also a spell caster, he cast spell to restore broken marriages and he cast good luck spells to prosper and excel in life. Contact Dr. Obor on: hsvcuretemple@gmail.com
Phone/What sap no: +2348105813057

Tue, June 12, 2018 @ 5:25 PM

676. bulgin troy wrote:
Esto es realmente serio, quién creerá que una medicina herbal puede curar cuatro años VIRUS DE HERPES en mi cuerpo, nunca creo que esto funcione. He gastado mucho cuando recibo medicamentos del hospital para mantenerme saludable, lo que era esperando es la muerte porque estaba en la ruina, un día me cuesta hablar de este gran hombre, llamado DOCTOR MOHAMMED, que conoce bien la cura de HERPES, VIH y CÁNCER, decidí enviarle un correo electrónico, sin saberlo, que este será el final de HERPES VIRUS en mi cuerpo, me preparó la medicina a base de hierbas y me la envió a través del servicio de mensajería de DHL a mi país, y me dio instrucciones sobre cómo tomar la medicina herbal, en el proceso de tomar la medicina herbal comencé a tener una sensación extraña y mi cuerpo carga para mejor y los síntomas me abandonaron, al final de la semana 3, después de completar la medicina a base de hierbas fui al hospital para un chequeo, sorprendentemente después de la prueba el médico me confirmó Herpes negativo, yo pensé que era una broma, iw en otro hospital, sigue teniendo el mismo resultado negativo, entonces le dije al médico de Herbal acerca de mi amigo que también era herpes positivo, le envió a mi amigo otra medicina herbal después del tratamiento que también confirmó que era negativa. También tiene la medicina herbal para curar el cáncer, el als, el vih y muchos más virus y enfermedades. por favor quiero que cada uno con este virus sea libre, es por eso que estoy dejando caer su dirección de correo electrónico, herbalcure12@gmail.com y su contacto WHATSAPP +2349036036397 le envío un correo electrónico que él es un gran hombre. el gobierno también está interesado en este DR, gracias por salvarme la vida, y prometo que siempre testificaré por su buen trabajo y también por él.

Wed, June 13, 2018 @ 4:29 PM

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Thu, June 14, 2018 @ 6:49 AM

678. Kylie Richard wrote:
Happiness is all i see now, i was herpes sicker for 10 years but i thank God for directing my footsteps to Dr Akuna, he gave me instructions and i followed and in 2 weeks i was completely cured using his medicine, I am now Herpes Negative Contact Dr Akuna for more information, He also has other cure to other ailment, HIV AIDS, CANCER, DIABETES, HEART DISEASE, HEPATITIS B/C And also restore broken relationships such as Ex HUSBAND, Ex WIFE, BROKEN MARRIAGES, Any kind of Problem in any relationship can be restore back in 24hours, Just Email: drakunasolutiontemple@gmail.com or CALL/WHAT APP HIM:+2348154625070 or visit web: https://drakunasolutiontempleofallkindsofsicknessistreated.wordpress.com/2017/12/08/about-me/ or visihttp://drakunasolutiontempleofallcureandspell.website2.me/contact

Fri, June 15, 2018 @ 5:47 PM

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Sat, June 16, 2018 @ 7:51 AM

680. shelly dent wrote:
After being in relationship with him for seven years,he broke up with me, I did everything possible to bring him back but all was in vain, I wanted him back so much because of the love I have for him, I begged him with everything, I made promises but he refused. I explained my problem to someone online and she.,... suggested that I should rather contact a spell caster that could help me cast a spell to bring him back but I am the type that never believed in spell, I had no choice than to try it, I mailed the spell caster, and he told me there was no problem that everything will be okay before three days, that my ex will return to me before three days, he cast the spell and surprisingly in the second day, it was around 4pm. My ex called me, I was so surprised, I answered the call and all he said was that he was so sorry for everything that happened, that he wanted me to return to him, that he loves me so much. I was so happy and went to him, that was how we started living together happily again. Since then, I have made promise that anybody I know that have a relationship problem, I would be of help to such person by referring him or her to the only real and powerful spell caster who helped me with my own problem and who is different from all the fake ones out there. Anybody could need the help of the spell caster, his email: drosedebamenspellhome@gmail.com you can email him if you need his assistance in your relationship or anything. CAN NEVER STOP TALKING ABOUT YOU SIR HIS EMAIL ADDRESS IS:drosedebamenspellhome@gmail.com CONTACT HIM NOW FOR SOLUTION TO ALL YOUR PROBLEM

Sun, June 17, 2018 @ 5:50 AM

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Sun, June 17, 2018 @ 5:35 PM

682. sally jokia wrote:
God bless Dr. ozman for his marvelous work in my life, I was diagnosed of HIV since 2010 and I was taking my medications, I wasn’t satisfied i needed to get the HIV. out of my system, I searched about some possible cure for HIV i saw a comment about Dr. ozman, how he cured HIV with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine through UPS SPEED POST. I took the medicine as prescribed by him and 8 days later i was cured from HIV,thank you dr.ozmanspellhome@gmail.com Dr ozman ONCE AGAIN THANK YOU SIR contact him whatsapp number +2349061515609
1 cancer cure
2 HPV cure
3 ringing ear
4 herpes cure
5 fabriod
6 HPV cure
7 diabetes cure
8 Get your ex back
9 Hepatitis B
10 Pregnancy herbal medicine

Mon, June 18, 2018 @ 8:52 AM

683. maria wrote:
thank you this great information..
My 16 month old is having trouble absorbing iron. Her levels went from 10 to 10.3 to 9.4 and she takes an iron supplement twice a day and I have watched her diet as much as possible.

Tue, June 19, 2018 @ 4:00 AM

684. sally jokia wrote:
God bless Dr. ozman for his marvelous work in my life, I was diagnosed of HIV since 2010 and I was taking my medications, I wasn’t satisfied i needed to get the HIV. out of my system, I searched about some possible cure for HIV i saw a comment about Dr. ozman, how he cured HIV with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine through UPS SPEED POST. I took the medicine as prescribed by him and 8 days later i was cured from HIV,thank you dr.ozmanspellhome@gmail.com Dr ozman ONCE AGAIN THANK YOU SIR contact him whatsapp number +2349061515609
1 cancer cure
2 HPV cure
3 ringing ear
4 herpes cure
5 fabriod
6 HPV cure
7 diabetes cure
8 Get your ex back
9 Hepatitis B
10 Pregnancy herbal medicine

Tue, June 19, 2018 @ 4:03 PM

685. Amelida Sophia wrote:
I am very happy today to share this amazing testimony on how Dr. idahosa the herbal doctor was able to cure me from my HIV Virus with his herbal medicine. I have been a HIV patient for almost 8 months now and have tried different methods of treatment to ensure that I am cured of this terrible disease, but none worked for me, so I had to leave everything to God to handle as I was a Christian who had faith that one day God would intervene in my life, yet I felt so sad and desperate as I was losing almost everything due to my illness, A few months ago while I was surfing the internet I saw different recommendation about Dr idahosa on how he have been using his herbal Medicine to treat and cure people, these people advice we contact Dr. idahosa for any problem that would help immediately, I contacted Dr idahosa and I told him how I got his contact and also about my disease, after some time Dr. idahosa told me to have faith that he would prepare for me a medication of herbal herbs, he told me I would take this medicine for a few weeks and also asked my home for home address so as possible for him to submit the drug for me, so my good friends after all the process and everything Dr idahosa actually sent me the medicine, I took it as I was directed by Dr. idahosa, after a few weeks passed, while on Dr.idahosa medication I began to experience changes in my body, I had to call my doctor at the hospital for some blood test after test my hospital doctor told me that I was no longer with the Hiv virus and my blood is pretty good, I can not even believe this, Friends well today i am Hiv Free and i want everyone to know that there is a cure for Hiv for those who will contact Dr idahosa after reading my testimony, you can kindly contact Dr. idahosa in (dridahosasolutioncenter@gmail.com) or call him +2348134261542, God bless you all ...

Wed, June 20, 2018 @ 5:07 AM

686. syari rose wrote:
I am here to testify on how I was healed from my HERPES DISEASE by DR. ogbela the great herbalist, I was having a serious headache though I take treatments the headache never goes off, I was told to go for check-up, I did the result was that I am having the HERPES of the body, that there is tumor in my brain, I was not myself ever since that day, everything went worse day by day, I was hoping for death, I was told about a great spell caster who can heal any disease in this life, I collected his email which is drogbelaherbalhome@gmail.com or whatsap +2348136354191 quickly I emailed him to see if my disease can be healed, he told me that I am at the right place, that I should not bother that everything will be fine, I believed him base on the testimonies I had seen on the internet, he asked me to buy some items which I bought, he cast the spell and told me that there is a herbs medicine that he will prepare and send to me through courier service, my parcel arrived I took the herbs medicine as prescribed by him, I started feeling normal, the headache was gone, he asked to go for check-up, the tumor that was seen in my brain was no more. he also help my friend to cure his KIDNEY DISEASES after i was cure i also introduce my friend to this great man and now my friend is also cure I thank DR. ogbela, if you are having serious problem you can contact him via his email which is drogbelaherbalhome@gmail.com or whatsapp his mobile line on +2348136354191. also you can view his blogspot: drogbelaherbalhome.blogspot.com

Fri, June 22, 2018 @ 11:00 AM

687. alonzo perry wrote:
These big companies only care about money and profits they could get. They don't care what will be the effect of their greediness to all the people and their surroundings what really causes cancer are all this preserve food they are making, how can a preserve food last for three months, i have been buying preserved food for my kids as a single father because i do not have enough time for my kids due to my job, then suddenly my first daughter feel sick and i quickly run a check on her and discovered she was diagnosed of cancer, as a Doctor i looked for cure but couldn't find any my daughter started taking drugs like her whole life depends on it, it wasn't working the cancer was still spreading i searched more on the internet i found a testimony on how it cured someone then .i copied the email immediately the email ricksimpsoncannabisoil41@gmail.com i wrote to this very email ricksimpsoncannabisoil41@gmail.com, in an hour i got a feedback asking me few questions, and enlightened me on how to get the oil in the next 48hours, i placed my order and in the next 48hours the medication oil got to me in Nairobi Kenya immediately my daughter started using the oil, it been two months now, since my daughter has been using the medication oil and the cancerous problems are gone this very fact was clarified by me and other doctors.
or contact him via whats app : +15183519835

Fri, June 22, 2018 @ 9:10 PM

688. austin mike wrote:
Hello everyone. I was heartbroken because i had a small penis, not nice to satisfy a woman, i had so many relationship called off because of my situation, i have used so many product which i found online but none could offer me the help i searched for. i saw some few comments about this specialist called Dr OLU and decided to email him on drolusoutionhome@gmail.com
so I decided to give his herbal product a try. i emailed him and he got back to me, he gave me some comforting words with his herbal pills for Penis t, Enlargement Within 1 week of it, i began to feel the enlargement of my penis, ” and now it just 2 weeks of using his products my penis is about 9 inches longer and am so happy..feel free to contact DR OLU on(Drolusolutionhome@gmail.com or whatsapp him on this number +2348140654426 )

Wed, June 27, 2018 @ 7:08 PM

689. hila shfie wrote:
hello everyone this is serious and real i want to tell the whole world about how DR ITUA HERBAL MIXTURE CREAM helped me enlarge my penis size ..i have trying since 19 years of age to enlarge my penis but none rendered me the help i want i have used several vaccines,penis pump,surgery,online creams from USA,CANADA ,AUSTRALIA and many more but none of them could enlarge my penis i was really frustrated and tired of living because my penis was too small ,imagine a cute and handsome 39 years old man like me having 3.5 inches and to make it worse i was having erectile dysfunction which was so annoying to me,my girlfriends have left me because of my small penis ....to GOD be the glory as i was searching for help on a FACEBOOK page i saw one Mr JOENARD AMOS from USA testifying of how DR ITUA HERBAL MIXTURE CREAM enlarge his penis and healed his grand mom hepatitis B .so i quickly email him on his email i saw on the face book [drituaherbalsolutionhome@gmail.com] and he replied me and gave me comforting words and told me all i need to do and i was surprises ,,i got his cream and he sent it to me through united parcel service (UPS)and i got it 3 days later and used the cream just as he told me and its just 7 days of using his herbal mixture cream my penis is now 11 inches long and 8.0 flaccidity am so happy to feel like a man in the bedroom at last so if you need penis enlargement,DIABETES 1/2 CURE,HERPES CURE,HIV/AIDS,CANCER,LUPUS DISEASE,PILE,LOW SPERM COUNT,PREMATURE EJACULATION,ERECTILE DYSFUNCTION,breast enlargement,weak erection,erectile dysfunction cure and many sexual relation cure do hesitate to email him now [drituaherbalsolutionhome@gmail.com] or you can also call or whats-app him on +2347036387192 thanks

Wed, June 27, 2018 @ 8:38 PM

690. maria wrote:
My name is Vivian Anderson I lives in the United States help me thank Dr.OGUL who helped cured me from HERPES SIMPLEX VIRUS AND HEPATITIS B in just one (1) week. I got to know him from a friend who he helped, at first I doubt if his herbal product would work until my friend put her car at stake that if it doesn't work she would give me her car. After which I decided to try to God be the glory am now a living testimony, all thanks to DR.ogul if not him I would not have been healed so easily.. You can reach him via EMAIL:{doctorogul@gmail.com or Wepsite: greatspellasterdrogul.simplesite.com } today for speed Medicine help you can also contact him on cure on
1. HSV 1&2,Hepatitis B
8..Hepatitis b

EMAIL:{doctorogul@gmail.com]today for speed Medicine help

Thu, June 28, 2018 @ 10:06 AM

691. James Kelly wrote:
The doctors said Herpes virus do not have medical cure because the virus is capable of hiding within the human cells, it remains protected from your immune system. Herpes isn’t a special virus – your immune system has the tools to fight it back. But because it is able to lay dormant in protected cells, your immune system is unable to remove it from your body,But with strong reactive herbal medication is capable of getting rid of the virus gradually and totally from your body without damaging any of your cells,natural herbs kills the virus totally not just reducing the out break. Get natural herbs cure from Dr. Oshuku (droshuku@gmail.com)

Thu, June 28, 2018 @ 4:45 PM

692. ALEX IMMOBILE wrote:
hello everyone here,i want you all to know that having a small penis is a big problem in your relationship or marriage because i have experience it in my marriage.
i have been married for three year and myself and my wife loved each other very much but she was not happy with me because of my sex life with her also i have 3.5 inches penis on erection and i cum within 10 sec in bed with her and it was really disappointing for any woman in this world.
my wife has threaten to divorce me if i did not find a solution to my problem but i have used a lot of PILLS, DRUGS, PUMPS, SURGERY, FAKE HERBAL MEDICINE etc.but nor rendered me the help i was looking for and i almost gave up on the issue until one day that i was searching through the internet then i saw a testimony of MR LUCAS MAVIS from GERMANY testifying of how DR SALATO help him enlarge his penis size from 2 inches to 9 within two weeks of using DR SALATO herbal cream and liquid.then i decided to give him a try,i visited his website link https://drsalatosolutionte0.wixsite.com/drsalato and i emailed him,he got back to me with some comfortable words and He told me what to do which i did as i was told and he sent me His HERBAL MEDICINE and it was just one week of using His medicine and my penis has increased to 6.5 inches,i cannot believed my eye because i never believed that anything could enlarge my penis and it is now two weeks and my penis is now 11 inches on erection with a strong and thick round also i now last very longer in bed with my wife (2-3hrs). my wife now love me more than before also she is always streaming during sex with her.
we are living happily now more than before and i thank DR SALATO for saving my marriage and family.
so if you are having same issue or problem then do not hesitate to contact DR SALATO for a solution to all your problem on his email
drsalatosolutiontemple@gmail.com or visit his website https://drsalatosolutionte0.wixsite.com/drsalato you can call/whatsapp him +2348103629945 THANKS

Thu, June 28, 2018 @ 11:06 PM

693. Grace Maria wrote:

Hi there everyone, i want to give my testimony on how i get cured of herpes virus, i want to thank God for sending Doctor Idemujad that cured me of herpes virus, I have been with herpes virus for 13 years, i thank God that i am healed from this virus, I was 28 when I started seeing symptoms. I really don’t know where to begin… But I use to think that I will grow old with this virus in my body, because i have use so many different type of drugs, believing that i will get cured of this virus, but it was not cured, i do not know what else to do, i keep on believing in God that one day i will be cured of this deadly virus called herpes, i was Praying for healing over every part of my body. Praying that the blood of Jesus washes over me, and that the lord breaks the binds of any diseases, pains, and illnesses, I feel my life is completely taken away from me, but i still keep believing in God, i believe that God will send a helper to me that will direct me on how i will be cured of this disease called herpes, one day i think of going for research in google, i saw so many testimony on how Doctor Idemujad cured so many types of disease, in my faith i believe that he will also cure me if he cured others i will also be cured, so i took his contact and contacted him for help, To God be the glory he directed me and cured my herpes virus that i have sick for 13 years, i want to give God thanks for he to send me a helper that cured my herpes virus, also give thanks to Doctor Idemujad for curing me of herpes virus that i have sick for 13 years, so if you are sick of any kind of disease and you need cure, you can contact him on email: idemujadherpescurecenter@gmail.com May the Lord that sent Doctor Idemujad to cure my disease will also cure your disease, thanks to you all God bless you.

Fri, June 29, 2018 @ 3:27 PM

694. Emerson wrote:
I am 42 years Old and of Filipino descent....Three weeks ago I had inflammation on my left foot..just when it was about healed my other foot swelled up as well but differently...my right big toe was swollen painfully so....went to see a podiatrist and right away he said its gout but he had me do a blood test specifically for Uric acid but also for ferritin...I wasn't sure why he'd check that as well...two days later he informed me that yes I have a high urate level but more importantly my ferritin is at 960 and that I should consult my family doctor. I am scheduled to see an internal medical specialist in a month and hopefully they can provide a clearer answer....based on my readings I'm guessing I have hemochromatosis but I doubt I have any Irish or Northern European ancestors....anyone else has a similar scenario.

Sat, June 30, 2018 @ 8:55 PM

695. Lauren wrote:
Hello my name is Lauren i'm from USA i want to testify of a great and powerful spell caster my husband left me and the kids for 2 weeks when i called him he didn't pick up when he came back home the 3rd week he told me he wanted a divorce i was so sad i cried all night he left again i was so lonely the next day i was searching for something online when i found a spell caster called Priest Ade who have helped so many people with their problems so i contacted him with my problems he told me it will take 24hrs and my husband will be back to me i did every thing he told me to do and the next day my husband came back kneeling and begging he canceled the divorce we are now happy together Priest Ade can help you too Email him at
ancientspiritspellcast@yahoo.com or ancientspiritspellcast@gmail.com

Blogs: https://relationshipspell.blogspot.com

Website http://ancientspiritspellcast.website2.me

WhatsApp +2347059715465

Sun, July 1, 2018 @ 6:16 PM

696. sally jokia wrote:
Am really grateful and thankful for what Dr. Ozman has done for me and my family. i have be suffering from HERPES for good three years with no solution, the diseases almost took my life and because I was unable to work and I was also loosing lots of money for medication, but one faithful day when I went online, I met lots of testimonies about this great man so I decided to give it a try and to God be the glory he did it. If you need his help or you also want to get cured just the way I got mine, just email him : dr.ozmanspellhome@gmail.com or Whatsapp ;+2349061515609 or as well call +2349061515609 and get your healing. He has cure for other deadly diseases like Herpes, Hiv, Hepatitis,ALS.
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2 diabetes cure
3 ringing ear
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5 warts cure
6 HPV cure
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Tue, July 3, 2018 @ 8:13 PM

697. wrote:
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Wed, July 4, 2018 @ 2:05 AM

698. Angel Louis wrote:
Its a pleasure for me to write this testimony about how i got my Genital Herpes cured 4 month ago. i have been reading so many comments of some people who were cured from various diseases by Dr. Iyoha, but i never believed them. I was hurt and depressed so I was too curious and wanted to try Dr.Iyoha, then i contacted him through his email when i contact him, he assured me 100% that he will heal me, i pleaded with him to help me out. My treatment was a great success, he healed me just as he promised. he sent me his medication and ask me to go for check up after 2 weeks of taking the medication. i agreed with him i took this medication and went for check up after a month later , to my greatest surprise my result was negative after the treatment, i am really happy that i am cured and healthy again. I have waited for 1 month to be very sure i was completely healed before writing this testimony. I did another blood test one week ago and it was still Herpes negative. so i guess its time i recommend anyone going through Herpes HSV-1 or HSV-2, HIV, HPV, Hepatitis B, Diabetes, Cancer reach him through his Email : driyohasolutiontemple@yahoo.com or Call : +1 (407) 337-9869

Tue, July 10, 2018 @ 7:46 AM

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Tue, July 10, 2018 @ 11:16 AM

702. max wrote:
Hello friends,
I was suffering from ( HEPATITIS B ) for over 3 years,i was hopeless until one of my friend directed me to a man called Dr AKALA, she said he cure Hepatitis b disease and also said he has helped her friend to cure Hepatitis b virus, and cure other people with different diseases, i never believed her but after a lot of talk, i decided to give the Dr a try, just few days later i contacted him and he told me what to do which i did and he prepared a herbal medicine and sent to me with prescriptions on how i will take it for a period of days. After i finished taking the medicine he told me to go for a test which i also did and when the result came out i was surprised to see that I'm Negative. Big thanks to him. You can also contact him via dr.akalaherbalhome@gmail.com if you need his help for
,HIV, CURE .....

Tue, July 10, 2018 @ 3:44 PM

703. ISABELLA wrote:
I want to thank an awesome medical Doctor in the person of Dr Alex who has made my family and i proud in trust and urgency, he bought off one of my kidneys for his patient with awesome amount of money in dollars, i came across his email address on the internet as specialisthospital45@gmail.com published by one Michel and Lopez thanking him and telling the world on how he came to their rescue financially as a result of buying their kidneys without stress, i quickly applied via the email and i was given all the attentions i needed by Doctor in less than a week i met all the requirements, and my half money was like a dream when it came into my bank account before the transplant, i urge you to contact on Dr. Alex via;
specialisthospital45@gmail.com for your financial awesomeness to come through like mine few months ago. I promised to do this when i eventually scale through.


Wed, July 11, 2018 @ 4:59 AM

704. Saltan wrote:
My problem with herpes has caused me many traumas, especially in my sex life. I was so afraid of infecting my boyfriend, I suffered the embarrassment of visiting dermatologists queries hundreds of times. Unfortunately, they did not find a definitive solution to my problem.The solution came from the least expected place. By reading in a specialized forum on the subject, mentioned a method for eliminating herpes. Many people had tried, with excellent and quick results.I had nothing to lose so I decided to use this method to eliminate my herpes. spent six weeks using this method and my herpes completely disappeared. I recommend this method to all people who want to eliminate the herpes from your body forever should contact DR.PETER via his direct email: peterherpescurehome@gmail.com

Fri, July 13, 2018 @ 7:26 AM

705. alexander sam wrote:
I caught genital herpes from my Ex wife in 2015,she never told me about the virus. I had it for 2 years with so many outbreak,and it affected my life.. People think herpes is really a minor skin irritation herpes has a long term effects on health. The stigma attached to this virus by ignorant people is ridiculous. Most people have herpes in one form or another,i was first taking Antiviral medicines, such as acyclovir(Zovirax), famciclovir (Famvir), and valacyclovir (Valtrex), are recommended for treating primary genital herpes outbreaks. This medicine can be taken when an outbreak occurs. It can also be taken every day to help prevent outbreaks,it is not a total cure... I will like to tell everyone who is reading this my testimony on how i get rid of my genital herpes.I was reading a comment on the internet,and i saw a testimony posted by a young lady from USA that she got rid of her herpes with the help of doctor EDES,a Traditional Herbalist.So i was so happy when i saw that post,that his herbal medication Cure the virus totally.I quickly copied the herbal doctor email address and i email him within 30 minutes he respond to my mail.I explain things to him he told me not to worry that i should fill his herbal form which i did..The next day he told me that he has prepare the herbal medicine,that i should send him my address that he want to sent his HERBAL MEDICINE to me via DHL or FedEx that was how i got the herbal medication and i use it as i was instructed.After a week i went to see a Medical Doctor who confirmed my herpes was no more.When some of my friend who has herpes saw me they were surprise and i also introduce them to the man and they are also cure from the same Genital herpes today.I also refer my cousin to the same herbalist who was having HIV and today she is fully cure...If you have Genital or Oral herpes or any kind of Diseases and infections,kindly contact HERBALIST EDES via this email;dredesspiritualcenter0@gmail.com
He also have a herbal cure for Following DISEASES,this is not scam is 100% Real.

-DIARRHEA and so on...

*LOVE SPELL and so many more.

My emaill;alexandersam002@gmail.com,
Contact him today and you will have a testimony..
whatsapp him with this number +2348151937428