The purpose of this blog is to help The Patients’ Voice find out more about the diagnosis of Haemochromatosis and how its is treated. Please fell free to tell us your story or those of family or friends.

The kinds of this you might like to include would be

- Tell us the story of your diagnosis. Who diagnosed you? When? What symptoms or events prompted your diagnosis, if any?

- Do other people in your family have haemochromatosis? Before your own diagnosis, were you aware of a family history of the disease?

- What tests were done to establish or confirm your diagnosis?

- What physicians/specialists have you seen in connection with your HH? Who do you see on an on-going basis? Who do you see but occasionally?

I look forward to your comments and ideas

Best wishes

Belinda

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Belinda | 29/03/2007 09:44:00

Thanks for joining us I look forward to your comments Best wishes Belinda

Rob Hill | 29/03/2007 13:21:00

My dad found out he had haemochromatosis only after near death. He had many of the symptoms, including congestive heart failure, diabetes, cerocious of the liver, cellulitous, arthritis, etc. I got tested and found out that I too have the disease. I go get my blood tested to monitor my iron levels. I monitor my iron intake and so far everything has been fine. My dad is doing much better too. He has to have a phlebotomy every couple weeks to lower his iron levels. My brother got tested and is only a carrier. Get tested, it could not only save your life, but could save your children's lives! Knowledge is the key!

Lee | 29/03/2007 17:52:00

I found out I had Hemocromatosis during a routine cancer follow up. I have to get phlebotomy's every week. They say I caught it before any damage was done. I'm 31 and my iron levels were in the 1300's. I'm down to 500 after 3 months of treatments. I can't wait to get down further so I don't have to go in every week.

Kathleen Wells | 29/03/2007 19:35:00

My health problems started at a young age with severe menstrual problems at about 11. I was diagnosed with enlarged thyroid at about 9 but no treatment was given. The hospital used radiated iodine to monitor it until my mother felt they were just using me as a guinea pig and stopped taking me. It was UCLA a teaching hospital. The female problems continued with years of hemoraging and the diagnoses of; hashimot's thyroiditus, fibromyalgia, irritable bowel disease, diabetes, pulmonary infiltration, asthma. I suffered severe fatigue and deep depression. Doctors blamed everything on my weight. They gave me the little pink pill for my thyroid and told me I needed a psychiatrist. Doctors treated me poorly and misdiagnosed me. My uterus was pre-cancerous from the constant stress of hemoraging. I'd go to the emergency and they would not understand why I was not anemic, they could see the flow of blood and the actual sores as a result of the constant flow. They tried birth control pills to control the blood flow but they just made me sicker. I learned later this was my body's way of trying to eliminate the excess iron. I had my first surgery; exploratory in the abdomen, then hysterectomy, then another surgery to find out what the football size lump was. It was adhesions caused from the first surgery. They removed my intestines to separate them and tried to remove as much scar tissue as they could. They almost lost me on the operating table. When I was 34 my liver was near failure. It was not functioning well, my ferretin was found to be over 4000 after repeated doctors visits. I think they thought I was an alcoholic. They would say "your liver is very swollen and enlarged" and I would say "yes I know, I am in terrible pain, have to push my liver up under my ribcage to drive my children to school or just sit up, maybe you can tell me why" I found a doctor who finally did a a liver biopsy and diagnosed hemochromatosis. The theraputic phlebotomies were a nightmare at first. They used a "suction method" that would sometimes blow out a vein making it scar up and hard to poke the next time. I was tested in 1996 and found to be homozygous C282Y. My son carries 1 copy and we watch him. I have regular bleedings every 8-10 weeks and my blood test numbers are perfect. I also switched to raw organic vegan diet. Everything stays well under control, cholesteral, blood pressure, blood sugar levels, ferretin and iron saturation rates, its all good now. The doctors at Loma Linda decided to try provigil to help me with the only problem I deal with, the fatugue. Provigil has been a big help it is the only medicine I take along with the levothroid and due to the dietary change I need less levothroid! I was happy about that. That means that the dietary change has somehow incouraged my throid to function better. I started building up a resistance to the provigil since I started last September 1st so I am trying some natural hoodia. Yoiu have to be very careful with it because some manufacterers will add stuff that is not safe. So far it is really giving mke that little extra lift I need to make it through the day acomplishing things like doing the dishes, visiting the seniors in my Adopt a Senior program, and riding the horses! It has been my faith in God that has lead me through the darkest valleys of confusion and suffering. Doctors let me down but God never did. Now I am 47 and loving a fruitful life!

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Janna | 29/03/2007 20:43:00

I was diagnosed with HH in January 2007. First I was given a serum iron, a serum ferritin, and a TIBC blood test. Then I got a genetic test that revealed I am homozygous C282Y. My symtoms were severe fatigue and arthritis in my fingers and hip joints. My sister was diagnosed with HH 8 years ago. I didn't get tested because all blood tests I had taken revealed that I was anemic. So I mistakenly thought I couldn't possibly have iron overload. I did not know about hemochromatosis at the time so I ignored her diagnosis. My mother died 30 years ago of liver and pancreas failure. I suspect she had HH. I am currently seeing a hematologist. He is monitoring my counts. I have had 10 phlebotomies in 55 days. I will know the results of my blood tests in one week. I hope I am not expected to continue the weekly phlebotomies. I am tired of being tired. LOL Hope this information is helpful to your study. I look forward to reading other comments from people with HH.

George D. Henderson | 29/03/2007 22:12:00

I don't have Haemocromatosis but nonetheless Iron levels have been important as I have Hepatitis C. After many years being ill, depressed, poor digestion and liver function, etc. I started taking antioxidants (Selenium, Vit. E, C, N-acetylcysteine, B vits, Magnesium, etc) and became much better very quickly, especially psychologically, but at the same time my health was still very run down. The research that led me to the antioxidants also made me realise that Iron levels were critical in HCV, excess Iron is basically as bad as alcohol. Then I learned how much Iron is added to foods like Milo, Kornies, Ricies, etc. so I started avoiding it. After a few weeks my health improved some more: I had always taken for granted indigestion and other GI pains and problems after eating meals, but this cleared up almost completely on an iron avoidance regime (no iron in supplements, no iron enriched foods, red meat only occassionally, no iron cooking utensils). I found out that my Ferretin count had never been excessive, 120 at highest, but I was noticably better off with it at 80 or lower. In hepatitis, Iron is a factor in cirrhosis - maybe you could call it acquired HH, i'm not sure. Interestingly, my formed partner, who had chronic HCV in the same period as me, cleared the virus naturally after 10 or more years - this is very unusual. She has always been iron-deficient as she's vegetarian and a bit anorectic. Her ferretin count is 19, and I met another woman with a count of 19 who also cleared chronic HCV without antiviral drugs. When I was very ill, I really wanted to lose some blood, I felt that if I could just drain off a few pints and replace them with healthier new blood I'd feel better. Now I realise that this might actually have worked, the instinct was correct. Though my iron levels had not been excessive in the records I looked at, in this period I had already started the antioxidants - some of those I use (l-methionine, l-cysteine) are (mild)chelating agents and I wonder if this had already affected Iron levels. Some other ways of lowering Iron, besides phlebotomy - Lactoferrin, a whey extract that removes excess free iron, also green tea extract, garlic, circumin are all supposed to lower it. Calcium supplements are meant to block Iron absorption in high doses, so I take my vitamin C as Calcium Ascorbate and take a multi-mineral high in calcium, magnesium: copper, zinc and manganese are also important as Iron displaces these, and vice versa. Of course, the vegan diet is reknowned for lowering iron. I also keep an eye on B12 and folate, as I feel the more effectively the iron I do get is utilised, the better. A good balance between the haemo-nutrients, and between minerals in general, seems like part of the answer, and B12 and folate, as methyl donors, serve to prortect against cirrhosis and similar damage. For a comprehensive overview of all the approaches to Haemocromatosis, and also Hepatitis and many other specific conditions, I recommend the Life Extension Foundation website, under Health Concerns. I subscribe to their email newsletter, which keeps me up-to-date with the latest health news: the standard of research on this site is very good indeed, as is the overall balance and direction. I can vouch for the basic accuracy of their Hep C protocol as I had come to the same conclusions independently while researching the subject at the Otago Med School library. And, of course, it works.

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ryan | 29/03/2007 23:00:00

I was diagnosed in Spring of 2006. I was 31 at the time, with no symptoms of HH and ferritin of 1090. I found out, only because my brother was diagnosed, and after he informed me, I was tested. My parents are only carriers, but we suspect the disorder has been in my fathers family for a while, just based on health histories of my grandfather, etc. I am now deironed after 35 weekly phlebotomies and I go in for my first followup appointment next week. Read about more in my blog www.nessski.com

Rob Hill | 30/03/2007 13:58:00

I have been talking with my doctor about donating blood with Red Cross. I have heard that there are some out there that accept Hemochromatosis blood. Does anyone have any information about this. It would be better to find where I could donate, instead of throwing the blood away. I do not have to have phlebotomies yet, but if I donated blood on a regular basis, it would help to keep my levels down. My dad does have to have them done and they just throw his blood away.

Janna | 30/03/2007 22:32:00

Click on the link below to see the FDA list of approved blood banks: http://www.fda.gov/cber/blood/hemochromvar.htm

Moderator | 31/03/2007 07:29:00

Hi Janna Do you have these details for other countries? Does anyone else have deatail on hemochromatois blood donation? Thanks Belinda

LindaFL | 02/04/2007 13:00:00

My sister was DXed with Lupus and her fatigue was pretty debilitating so her Rheumy gave her iron pills... she was even more debilitated so she finally sent her to Southern Iron Disorders doctor who DXed her with HH. At that time I had ferritin and iron studies but my doctor said "You don't have it". (Smile) Then the DNA test came available and my brother had his DNA tested. He did have it. Two C282Y mutations. So I spoke to my family. Two children both in their 30s. My daughter went first and discovered she also had 2 of the C282Y mutations but she had no overload. I was tested and I had the same mutations. My doctor said, "You don't have it." (smile) My husband had at least the one C282Y mutation and when tested was compound het... he had H63D and C282Y and he also has type 2 diabetes. But his doctor said, "you don't have it." I encouraged my son to be tested until he was livid. But I still pushed. He finally was tested and has 2 C282Y mutations. He was loading iron and went into treatment. I suffered fatigue that is debilitating, IBS, depression, hair loss, really bad noisy knees, but my ferritin was only 194, I think. I asked my doctor if he didn't think that was a little high for a person with 2 gene mutations. He just smiled at me and said my ferritin was within normal limits. I said I might go to the blood bank and give blood til it is low. He thought that was a great idea! I did just that. I treated myself until my ferritin was down to zero. Felt like pond scum for over 18 months until my ferritin was finally up to 9. You see... I take tagamet every day with an antihistamine to control chronic hives. The tagamet keeps the acid low and I don't load iron while I am on that. So that is why I never loaded much iron in the first place. I am finally back up to a ferritin of 23 at last testing. I still have the fatigue. I can identify with Kathleen when she says they told her to see a Psy. I have doctors who give me that look, "post menopausal nut". I am a nut, but I didn't need a psy doc, I needed the iron out! They pat your knee and smile. The last phlebb was the kicker... I spoke with my doctor about how low it had laid me. I couldn't get out of bed for a week, he said well I have had that happen when I gave blood too. If I had had a dirty sock I would have poked it in his mouth. He minimized every thing I said. You may think I don't have it as well, but I am confident that if I ever stopped the tagamet, I would load iron as my brother and sister have. I am fortunate that I had hives if one can be fortunate having hives. You don't want that, believe me! Because the tagamet kept me from loading iron after my (early, age 32) hysterectomy. Which, by the way, Kathleen, caused my body to form lots of adhesions. When I had a bladder tack some years later it took almost an hour to cut through all of those before they could begin the tack. It is getting better though... doctors are becoming more aware of the disorder. Even though they don't like for me to know anything about HH, I still give them information I have learned. Some take it and thank me, wondering how I got my hands on research, others turn red and smoke comes out the ears. But I will tell them anyway because they already think I'm a nut, right? LOL HH is a difficult road, but I am not alone, my whole family and extended family have it. Now waiting for the doctors to catch up. LindaFL

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Rich W. | 02/04/2007 15:52:00

I was diagnosed in August of 2005, three years after losing my wife to leukemia. The only recognizable symptom that I experienced related to a significant loss of sensitivity during sex. While I was not dysfunctional, it was a huge change that I shouldn't have ignored. Other than that, I did not have any recognizable symptoms, not even fatigue. Then in August of 2005, I came down with the flu which both my kids had also. They got over it in a couple of days, but for me, it lingered on for nine days. I finally went to the doctor and he ran some blood tests. My liver function tests came back out of range, and my iron levels came back high. At that point, he had more blood work done, including a ferritin test. My ferritin came back at 4500. I received the test results before my doctor did, so I already had figured out that I probably had hemochromatosis before my next appointment with my doctor. From there, he ordered a genetic test and more blood work. This time, my ferritin came back at 6800 and I was confirmed positive for the genetic test. I had the double mutation of y282y. The next step was a CT Scan and liver biopsy, since my liver function tests were out of range. The CT Scan was done first and nothing recognizable showed up. However, the liver biopsy did find traces of cirrhotic tissue. Luckily, the amount of cirrhotic tissue was minimal. I began having weekly phlebotomies in September of 2005. I was rebounding fairly well, so after my first five or six phlebotomies, I began having one phlebotomy every five days. I did skip a phleb every now and then if I was on vacation, but other than that, I kept up the pace. It is now April, and I am finally de-ironed. It took a total of 80 phlebotomies. I am slightly anemic at the moment, so I'm actually feeling more tired than I ever have, but I know this will pass. I have been starting to feel a bit better the last few days. Both of my parents are carriers, but neither one has hemochromatosis. There is a possibility that my grandfather had it as he died from cirrhosis of the liver at the age of forty. He was a heavy drinker also, so it is hard to determine if he actually had hemochromatosis or not. I have two younger boys and am having them tested soon. Since my wife is no longer alive, I have no way of knowing if she was a carrier or not. I am concerned that she could have been or could even have had hemochromatosis as I do recall doctors mentioning that her iron numbers were very good while she was pregnant. As for the future, there are no signs of further progression of cirrhosis, so I am pretty confident that I will be able to live with this so long as I stay away from alcohol. As high as my ferritin was, I'm extremely thankful that I'm not dealing with many other complications.

Prashanth | 02/04/2007 17:55:00

I have some info for you people at http://blogbible-health.blogspot.com I was asked to mention that here by a fellow reader. Good luck and God bless Pat


Lue | 02/04/2007 18:21:00

Five years ago at age 64, I was diagnosed with HH. My symptoms were abdominal pain. I was treated twice for diverticulitis and then later a colonoscopy proved I didn't even have diverticuli. Also have arthritis but then I expected that at my age. Never knew of anyone in the family that had HH. My doc ran blood tests that showed my ferritin at 965, saturation level of 85% and elevated liver ensymes. Without further testing, I was referred to a Hematologist who started phlebotomies. I notified my kids and my siblings. None of my siblings have HH but all three of my sons do have it. They were all found to have ferritin levels of around 400 so I was very happy that my diagnosis prevented them from having damage to organs, etc. One of my sons was already seeing doctors about early arthritis. Others with no apparant symptoms. It still amazes me that many doctors are ignorant about HH. My brother asked that he be tested when he learned I had HH and the doc ratherly sharply replied "why in the world do you think you might have this just because your sister does! I do not know if my parents had HH but I suspect so. My mother died at only 73 of a brain stroke. My grandparents had severe arthritis, diabetis and so many aunts and uncles had cancer, including of the liver. After 2 years of phlebs every 3 weeks, I now get them about every 2-3 months.

linuxgirl | 03/04/2007 03:28:00

joing the hemochramotosis myspage group at www.myspace.com.hemocrhomatosis/ we need to hear yer stories!!

Christine | 06/04/2007 17:43:00

I was (finially) Dx'ed May 2004 after I almost lost one of my brothers to Heart failure. Long before this happen to my younger brother, I had so many signs of HH. For over ten years I had female problems, debilitating fatigue, joint pain, hair loss, loss of sex drive, pain in my side (cirrhosis), dizzy spells, low blood pressure and a killer tan..haha..no sun needed!!!I tried so many doctors..but no one could tell me why! Then in the mid 90's one of my other brothers came down with diabetes type one..we thought maybe that was the problem, Was tested for diabetes..it was negative. I then was admitted to the hospital with heart problems, They ran a liver test. It came back very high. I was told to stop drinking and no street drugs..I was mad..I have never did any type of drug in my life and I could count on one hand the times I drank. Well in early 2004 my younest brother went into heart failure, died and was brought back..They still did not know the cause. With a team of 5 doctors..only one thought of HH. They ran a DNA test on him..It was negative. The one doctor knew it must be Hemo...so they tested my ferrtins..My test came back at 4000. We both did a liver biospy..The it was! Our mutation is rare, so they don't look for rare mutations on DNA testing. After I started giving blood 3 times a week, my ferrtins jump to 6000. It has taken me over 2 years to get rid of my Iron. My life has not improved. If any..I feel I have gotten worse. My liver is damaged, I have a liver mass that can turn cancer. My 30 year old brother has no life. He's fallen apart. Luckily my brother with the diabetes is doing better. I can still not get an answer from all my doctors why I still live like this. I don't trust not one doctor any more. I can almost say I don't like anyone in the medical field. They don't listen..They don't care..they think we are all stupid and don't know what we are talking about!

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Lue | 07/04/2007 12:31:00

Keep plugging. I can understand your concern with your condition and that of your family. I agree it is very sad so many doctors are not educated on HH. If you don't like your doctor, or trust your doctor, change doctors until you do find one that is truly cares about your constant care. You did not say how low your ferrity in now...just that you have been on phlebotomies for 2 years. (I don't see how you could possibly give blood 3 times a week and not be terribly weak and anemic. I was diagnosed at ferritin of 965 and it took three years to get me down to where I should be. So it is possible that you have not had enough treatments yet. Finally, after over 3 years, I keep my ferritin at about 10 and saturation at about 45 by having a phleb every 2-3 months. Good luck to you.

Rob Hill | 10/04/2007 21:13:00

thanks for the list Janna. Georgia is not on the list. :(

Christine | 11/04/2007 14:45:00

Hi Lue, I started with my phlebotomies at three times a week.. I did drop down to two times a week, your right it was taking alot out of me. But they were also giving me a shot to help rebuild my red blood cells. Plus I was giving IV fluids. My ferrtins are now at 25 saturation at 40. About changing doctors been there..done that..you also can only work with the doctors that is covered by your insurance. So one can be stuck. Now that I have no insurance and can't get any. I guess I can look again. I hate starting out. Tell my story all over again. Crying because I have no life, then getting that blank look again.

Megs | 16/04/2007 21:12:00

I have recently been diagnosed with hemochromatosis and and told that I need regular phlembotomies. Unfortunately I'm one of those people who almost passes out just from getting a blood test. I get really weak, pale and nauseous and I start to sweat. I know that its probably all in my head but it's really unpleasant. Has anyone else out there experienced this? Do you ever get used to it. Does it ever go away?

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Meg | 16/04/2007 22:01:00

Like you I had a big problem..not with the blood..but the needles. As time went by I did get alot better at first with mediation,then just by my self. Plus they put a port in my chest so I did not have to deal with a big needle.

Keryn | 29/04/2007 15:56:00

Well, I was having a variety of symptoms, most of which were written of as "all in my head" or "stress" or "too general to diagnose." My mother sent me to se a Natropathic Doctor, a Kinesthesiologist. He did some muscle testing and told me I had "heavy metal in my blood" told me to cut down on things high in iron and take some iodine supplements and b12, and a variety of other things. I did continue to have symptoms. 3 years later I went to the doctor's office on campus. I'd been a vegetarian for years for ethical reasons, and made it a point to get regular labs, so I could make sure I was eating right so no doctor would come back and tell me "you must start eating meat again", and rather than seeing low iron, as we'd expected, being that I'm both female and a vegan, my iron was a bit on the high side. he didn't think too much of it, and said we'd just watch it for a while. 1-2 labs later it got higher instead of lower. when he suggested I get tested for hemochromatosis, I had to get insurance and see a regular doctor . that doctor was convinced that every symptom I had, from acne, to depression, was because I was a vegan, and insisted it was very unlikely to be hemochromatosis, but it was. After I tested positive, I got weekly phlebotomies for about 6 months, and then 1 a month. after that my levels dropped low enough, and I haven't been back for another one since. I've even been a little on the anemic side. Now, I've found it very manageable, but I've got a lot going for me that many other people don't have. 1) I was diagnosed in my early 20s rather than later on in life 2) I'm female, and purge iron every month, and 3) I'm a vegan. I try to donate blood from time to time, but they usually tell me my iron is too low. I did send letters to all my family members and recommend they be tested. No one in my family, before or since, has tested positive.

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