Iron Disorders Institute:: Iron Overload

Iron Overload

You can now purchase FeGGT LifePro™ to determine or confirm both your iron status and the adequacy of your natural antioxidant defenses by either clicking above or by going to our affiliated web site, HealtheIron.com.

This section will focus on excess iron.

Posted on Sat, February 26, 2011 by Cheryl Garrison

292 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
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

IRON TOTAL 205 H
FERRITIN 1399 H

2nd test by GI (one month later)

IRON TOTAL 225 H
IRON BINDING CAPACITY 242 L
%SATURATION 93 H
AST 42 H
ALT 73 H
FERRITIN 1167 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:
http://www.endocrineweb.com/endocrinology/your-adrenal-glands
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:: Pam,

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.

TIA
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?

Sheila
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:

RESULT: COMPOUND HETEROZYGOUS FOR THE C282Y AND
H63D MUTATIONS

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
ALKALINE PHOSPHATASE 60 0 - 153 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
ALKALINE PHOSPHATASE 60 0 - 153 U/L
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
g/dL
EPGS INTERP A PARAPROTEIN IS PRESENT. APPROPRIATE STUDIES, INCLUDING QUANTITATIVE
IMMUNOGLOBULINS AND IMMUNOFIXATION ELECTROPHORESIS HAVE BEEN ORDERED IN
FOLLOW-UP.

SEE IMMUNOFIXATION ELECTROPHORESIS REPORT
A BENCE JONES PROTEIN EVALUATION IS RECOMMENDED IN FOLLOW-UP, IF CLINICALLY
NECESSARY.

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:: Hi,
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
Confusion
Rapid heart beat upon exertion
Pai in upper right quadrant of abdomen
Dizzyness
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:: Pam,

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:: Pam,

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
Researcher
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!
Karen
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.

Irene
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!

Sincerely,
Pam
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
208. Mbai wrote:: faboi fabio etil la ri laiti, meaning what a wonderful wizard man.
i,m speechless due to this tremendous healing this great man gave to me... yes hiv/aids real and also hiv/aids is curable with indi-herbal healing drugs truly this drugs is a spiritual drugs. i heard about it before and i said to my self let me give Indi Herbal remedy drugs a try and the drugs cure my hiv/aids perfectly. don,t excitate to email shant tami indianspell@yahoo.com to cure your sickness for you including hiv/aids this man deserve another monumental life award for healing people with his research drugs
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. Xosé 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.?
Thx
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.

Questions:
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!

Observations:
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.

Irene
Thu, February 7, 2013 @ 9:02 PM
222. Gordon wrote:: Pam,

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?

thanks,
Sam
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...

Thanks.
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!
Matt
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

Add a New Comment

Your Name:

Your Email/URL (Optional):

Your Comment:

Enter the code you see below:
code

Comment Guidelines: No HTML is allowed. Off-topic or inappropriate comments will be edited or deleted. Thanks.

Iron Overload

Home // Iron Blog

Iron Overload

292 comments (Add your own)

Add a New Comment