101 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:

KIM.......READ THE IRON OUT OF BALANCE BLOGS.....THERE ARE PLENTY OF US OUT THERE......ALL YOUR QUESTIONS WILL BE ANSWERED.......TOM G.

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:

Rhonda,
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:

Cindy,

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?
ALSO,
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:

Cheryl,

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:

Jan,
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.

Thanks--

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.
Thanks,
Janet

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:

Jan,

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
Cheryl

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:

Natasha,
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??
-lindsey

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:

Tess,

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!

Regards,

Lynn

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.

--Liz

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).

Thanks.

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:
http://www.cdnhemochromatosis.ca/assets/pdf/hemochromatosis_inheritance.pdf

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).

Thanks!

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:

hi,
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!

Paul

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,

Paul

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,
Paul

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,
Sheryl

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,
Sheryl

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

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