The purpose of this blog is to help The Patients' Voice learn how you feel about getting phlebotomy for the treatment of Hereditary Hemochromatosis. Please feel free to tell us your story or the story of family and friends. We are particularly interested in how you feel about phlebotomy as a treatment and its impact on your life generally.

Please note that we have decided to use the Hemochromatosis spelling rather than Haemochromatosis. Of course both are correct so please feel free to use the one you prefer.

Below are some questions we'd like you to address.

Tell us about your experiences of phlebotomy:

- How do you feel about phlebotomy?

- How have your feelings about phlebotomy changed over time?

- How has phlebotomy affected your personal or professional life?

- How interested would you be in an alternative to phlebotomy? Why?

We strongly encourage you to check back on the blog to see what others have said and to contribute further thoughts. The purpose of this blog is to generate dialogue about HH and phlebotomy; feel free to share your thoughts and experiences with not only us and but each other as well. You are welcome to share this blog address with anyone who you think might like to participate or may find it of interest.

Please note you do not need to join The Patients’ Voice to participate in the study. You may simply post your comments in the box provided at the bottom on the page. To participate all you need to do is type a nickname of your choice and then put your comments into the box. Your comments are anonymous of course!

We look forward to reading your comments. Thank you in advance for your help and for sharing your experiences, thoughts and feelings with us.

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MARGARETCOLLEY | 14/05/2007 19:05:00

IHAD 18 IN ABOUT20 WEEKS-ITWORKED-MY SON HADAROUND15-IT WORKED-IDOHAVECIRRHOSIS FROMIT. MY COUNT WAS 5000% WHENTHEY SOUNDOUT. LONG STORY-IHAD THEHIGHEST %HE HAD EVERSEEM-NOWI HAVELOW BLOOD

Winston | 15/05/2007 01:10:00

I was diagnosed 6 years ago. I had a routine blood test that revealed some abnormal results. My primary care doctor subjected me to upper and lower GI. When those came in with no problems, she sent me to a hematologist who suspected HH but wanted me to come back in 9 months. I wanted this resolved so I found a doctor that had many credentials. He suspected HH and diid the genertic test. I only needed a few phlebotomies to get back to normal. I don't mind phlebotomies. I have about two a year. The blood is donated to a blood bank. Procedure with the testing and rest period after donating lasts abouty one hour. It does not affect my professional or personal life. It you keep on top of this condition, you can be healthy and happy. I am also a vegetarian.

John Harper | 15/05/2007 02:58:00

Family Doctor had an Iron test done with a CBC and the level was Ferritin 1400. Referred to an Oncologist and had DNA test, diagnosed HH with finding of Homozygous HFE gene C282Y. May, 2002. Began de-ironing 1 pint per week. ended de-ironing and began maintenance July 2003 - maintenance 1 pint every 3 months. March 2007 increased maintenance to every 2 months. I go to a Chemo Ward for Phlebs 30 mile trip. Phlebs are no problem and I do them in about 20 mins and out. Blood is discarded. Use a butterfly and vacuum bottle.

James Shaff | 15/05/2007 14:18:00

I was diagnoed almost 6 1/2 yrs ago. Was a long proccess as i was exhibiting alot of other ailments . Arthritis had set in , fibromyalgia , multi directional joint instability, amongst others. They blame most of it on the fact that i had recieved iron suppliments while in childrens homes and institutions for many years due to the chronic fatigue. For the first year i was at about 2 times a week . I am currently fighting for disability ...still ....7 yrs later. The pleb's are difficult for me , as i have a huge fear of needles , and usually leave me feeling dizzy and tired. Already having poor circulation in my extremeties i can only admit that it gets worse. My blood pressure fluctuates during and after each one . Sometimes to the point of passing out or being confined to floor to try and keep everything from spining. They are investingating the possiblity of underlying ailments that are usually considered non-existant once the Hemochromatosis is discovered.

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Dânia Mara | 15/05/2007 15:35:00

My husband was diagnosed in 2002 and after 128 phlebotomies is now in mainthenance phase. He has fibrosis and his cirrosis is controled (no inflamation activity). We founded a HH Brazilian group (we're from Brasil, of course), and it has 130 members now (may/2007). Here in Brasil, almost all phlebotomies are done in blood banks, and they use the same procedure of blood donations (plastic bag of 500 ml ). My husband had some problems during phlebotomies, so his arms became purple about 2 days, and after this turned ok again. For aditional informations in portuguese go to http://br.geocities.com/hemocromatosebr/hemocromatosebr.html . We have a link there to go to help group. Hugs from Brasil,

wpat007 | 15/05/2007 18:06:00

9 years ago I started getting phlebotomies. 2 per week for quite awhile. Then 1 per week. Now I'm down to 1 per month. Sometimes [rarely] I can skip a month. The blood letting is a hassle. Fatigue and joint pain are usually present. I noticed drinking a ton of water really helps. A pill sure would make life easier than the phlebotomies. Maybe some genious will invent one. http://genetichemochromatosis.com


Wynona Burgstiner | 15/05/2007 20:13:00

My husband was diagnosed in late 1993 with HH. He had a weekly phlebotomy done for 72 weeks until feritine level got down to 13. Beginning in 1995 he was maintained at once a month until 2006 when he was moved to once every three months. His veins where beginning to show scarring from the continuos use of his left arm for withdrawals and the right arm for testing. (Was unable to have phleb's done from right arm. the blood wouldn't flow) Our state does not allow the blood to be used so it was done at his doctor's office using a plastic bag, the blood was discarded which was a shame because my husband was 0 neg. When it was discovered by our primary physician during a routine checkup they determined he already had hardening of the liver, high blood pressure, poor circulation, impotence, arthritis, muscle soreness and severe dry skin. He was diagnosed April 4,2007 with liver cancer and died April 10,2007 as a direct result of having hemochromatosis. The type cancer he had is caused by the hemochromatosis. I do hope someone is doing research on this disease.

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Alan Sutton | 16/05/2007 07:12:00

I was diagnosed with HH about 4 years ago on a routine medical. I have had many medicals prior to this and it wa snever diagnosed. I initilay had phlebotomies every 2 weeks then reverted to monthly. After consulting another doctor this was put back to every 2 weeks for about 6 months. I now donate blood as a regular blood doner 6 times a year. All my phlebotomies were done at the SANBTS as if they were normal blood donations and the process was simple and convienient. I have no other symtoms of HH.

Lue B. | 16/05/2007 16:53:00

I was in late 60's when diagnosed with HH. Was glad that I was as my 3 sons would never have known, or known too late. All 3 have HH but their ferritin was only around 400 so easily managed. My ferritin was 965 when diagnosed and saturation level at 85% Tried weekly phlebs and just made me too weak. Even every two weeks did. Every 3 weeks worked for over two years. After that I slowed down to every 6 weeks and now it is every 2-3 months. Here in U.S. only a few blood banks allow HH patients to give blood. And not here where I live. So for 2 years I had phlebs in a Hemotoligist's office where he used a vacuum 500cc bottle. Then he asked all his HH patients to go to the hospital for phlebs. So for a couple of years, I go there where they use ten 50cc syringes and just draw it out and disgard the blood. After the phleb, my doctor has ordered that I get 500cc of saline. It works well. I don't have a mark on my arm although the same place is constantly used. Nurses say that is because they do a good job! I like to keep my ferritin below 20 and my saturation level at 35-40. I do notice when I need a phleb as I tend to fatigue and my energy level goes down.

Adrian Hickey | 16/05/2007 17:37:00

Mine was picked up about 3 years ago. I had phlebotomies every week for about 15 weeks, which was tiresome and I had to pay for it at the blood bank, or at least Discovery Health did. Now I give every 2 months as a normal blood donor, which is fine, since my ferritin levels are OK and I feel I'm doing something good. I was told to stop drinking alchohol and watch my diet, especially things that hit the liver. I did this and lost 15 Kgs. So all in all, I see my diagnosis as a health bonus for me. I've cleaned up my act, exercise regularly, eat well and feel good. I don't mind the needles any more and being a blood donor is a good thing.

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Aaron Case | 18/05/2007 00:16:00

I'm 28 and haven't been diagnosed quite yet. My pop has HH so he suggested early on that I donate blood as often as possible and get IBC and ferretin tests every once in a while so I don't develop any symptoms and get an official diagnosis (which would be a pain for insurance reasons). I just got another test last week, I'm within limits, but barely. I like donating blood, as I'm helping folks and am only allowed every 2 months, I'm sure if it was once a week it might be a different story. I feel like it's a more natural remedy than taking medication.

olamoree | 21/05/2007 02:46:00

I am W/M 68. About 5 years ago I was experiencing unusual pains in the joints of my wrist and thumbs. Routine blood tests did not alarm my doctor. I live in Costa Rica where HH is virtually unknown... there are only 3 HH patients known! As an internet junkie I researched my symptoms and then asked my Dr. for an iron panel: 1008 with 88% saturation. He ordered a liver ultrasound, EKG, US of the heart and some others... then he wanted to do a liver biopsy, which, according to my research, is NOT conclusive and could produce a hematoma! I refused, changed doctors and the new one said, okay, what do you want to do. I said phlebs weekly and iron panels every 90 days... he complied and treated me just as I wanted... while he brushed up on HH. I have now had 240 phlebs, F at 30, Sat at 31% and feel great! I don't take a phleb if Hematocrit is at or below 35% as it is too debilitating but by the next scheduled phleb it is back up. I take two asprins the day before the phleb and as they are done in the Hospital Blood Bank, the #16 needle is possible to stand. I eat good before the phleb and drink fluids previous and during the phleb and coffee and juice afterwards. The reduced blood volume is a pick-up and I usually do my routine day of running around and getting things done. For me, HH is an inconvenience, NOT my life. I don't take many dietary precautions except for dried fruits and rasins and shell fish as the highest iron items. Thru my efforts, now, my blood is sent to the childrens hospital where it is used for anemic new-borns as the red cells are "new" and plenty of iron. Regular blood requires 3 transfusions per week but 1 of mine a week is enough... less damage to newborn veins. For me, phlebs are the most efficient method of de-ironing in my country. I live 5 blocks from the hospital so it is just another stop in my routine.

Roger Chivers | 21/05/2007 07:55:00

I was diagnosed with HH 2 months ago and my GP recommended 8 week phlebotomies at the blood donor service. my feritin level was 732. I asked if I could go to weekly blood letting and after 4 weeks my level had dropped to 287. My case is a bit complicated as I have Gilberts sydrome as well and I haven't yet discovered what the impact of this will be. I have suffered from Fibromyalgia and general joint pain for some years so it would seem the HH has been around for a while. Since starting the Phlebotomies I feel much better, although I'm tired after each donation for a while but generally ok the next day. I've been watching what I eat and have cut down on alchohol consumption.

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Kansas Bob | 24/05/2007 19:55:00

I am a 58 year old WM and was diagnosed in 1998 with a feritin level over 1000. The first year I had 26 phlebotomies to bring that level down. Over the years I have reduce the frequency and currently I phlebotomize twice a year and have a ferritin level of 47.

Angela | 30/05/2007 12:53:00

I was diagnosed in 2004 with Hemachromotosis and unfortunately it was a little too late. I fell dangerously ill and stayed in ICU for about 5 and a half months. My liver was failing because it was consumed with iron. The iron spread throughout my organs and each one had to have special treatment and attention. I was in and out of comas for the whole hospital stay and was told I needed a new liver. I was on the waiting list for a very long time. I was 30 at the time and age was definitely on my side. It helped me get to the top of the list. My last rites were even read to me! But I eventually received a liver transplant in 2005 and I regularly get phlebotomies even though they are only 2 or 3 times a year. I feared phlebotomies in the U.S. because they didn't numb the area before sticking in the huge needle. But here in the U.K. I don't mind them so much at all. Actually I feel better after getting one. It might be phsychological...I don't know. Either way it works out for me in the end. Best wishes to you all!!!

Chris Hartley | 30/05/2007 13:47:00

I finished the Peg-Interferon treatment 1-1/2 years ago, for 1 year, which reverted my system back to a normal count on Iron and several other relative problems. Rather expensive and am still catching up financially 18 month later... I understand there is a 50/50 chance of sucess, so please discuss this with your Dr. before considering.

Dennis | 30/05/2007 13:49:00

- How do you feel about phlebotomy? as opposed to taking a drug the rest of my life, I prefer the phlebotomy - How have your feelings about phlebotomy changed over time? No change in my feelings concerning phlebotomy. - How has phlebotomy affected your personal or professional life? Having phlebotomy regulate the iron in my body has been a great boon in my professional and personal life - How interested would you be in an alternative to phlebotomy? Why? All things maintaining a status quo, if it includes the usage of drugs I would not be in favor of an alternate to phlebotomy

wpat007 | 30/05/2007 18:03:00

Sometimes my doctor tells me I don't need a phlebotomy. Well I got to wondering if they were correct. So I had my favorite nurse get me some copies of my last 6 months medical chart. My numbers were very over the limit but they told me I didn't need the blood letting anyway. Downright criminal if you are asking me. It's murder, any way you look at it. So...very important to know the danger level numbers so you can tell them "BS you quacks, I do need a phlebotomy" Genetic Hemochromatosis

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Larry--| 31/05/2007 03:25:00

I was diagnosed in 1991, after many years of thinking I was going insane with unexplained pains etc. It took 3 trips to the emergency room in one months time and every test they could possibly think of back then to finally figure it out. Back then a liver biopsy confirmed it and I later had gene testing to also confirm it. I am now 49 years old and feel much older. I was recently denied life insurance and visits to all kinds of doctors is normal for me as i'm sure for all with this crippling disease. As far as Phlembotomies go they really arent to bad but as the years go by it does hurt more and more. ( I once had a nurse take 36 viles because she couldnt get the big needle in right)I usually have about 3-5 a year now. I use to argue with my doctor on how many I should have and even switched doctors because of this. I seen an expert in Pittsburg in 2002 and his suggestion is the 20-20 rule. Dont go over20 with ferritin or saturation and my current doctor want my hemoglobin not over 12.5. Phlembotomies for the last 16 years have not changed at all. Thats really amazing when you look at everything else that has changed. Why is that?? I'm very fortunate to have a career in sales where I'm able to come and go to the doctors etc as I need so I'm not inconvienced as others but I dont know how I would do it otherwise. I feel bad for the ones whom must lose pay etc. to go through all this. I would be interested if there were other means besides phlembotomies, but this doesnt appear to be promising at this time. It' a terrible disease, and definitely is not given enough attention. I know I speak for myself but i'm sure all would agree with me. Not a day goes by that I'm not in some type of pain. It's sickening. I would like to see some blogs on disability and hemochromatosis. To give someone an idea of how time consuming Hemochromatois is they would be shocked. The phlembotomies are only a small percentage of my time. I'm in and out of the hospital witin an hour--thanks to my low plaletes. It' s all of the other visits for all the other problems related to HH that take up my time. Monthly blood test to start. I see my family doctor, oncologist, gastroenterolgist, urologist, dermatologist and rhuematologist. I've seen all types of specialist (heart) (nuerologist) in cities far away, and it all relates to Hemochromatosis. To all of the above I know how you feel and what you have been through. God Bless

Simon | 31/05/2007 04:02:00

I loath phelbotomy. I have only one good vein and it feels like they are pushing a blunt needle through shoe leather. In 1996 (age 34) I had chronic fatigue. My doctor thought it was Ross River fever and told me to rest. I had arthritis in my feet ( from dancing I thought). They treated the symptoms seperatley. In 2001 I felt very ill and my skin was a funny colour. I kept fit all my life and road push bikes.. I thought the fatigue was just from riding too many klms... I was diagnosed with a ferritin level of 4300 at age 39. I have given blood every weeks for 2 years, every fortnight for 2 years now once a month. My ferritin level is around 150. I get a sore liver, have bad arthritis, fatigue, and get irritable. I still work 6 days a week as an auctioneer. In Australia they simply test the blood and do no scans on the liver. I have a doctor in Paris who advised me that I need to get my ferritin below 50. Also that I should have an ultarsound on my liver every 3-6 months. Australian doctors refuse to do this. So has it affected my personal life? yes. I am not the same man I was before all this. My family do not cope with it at all. I am quite a "driven" person but it seems that you cannot "fight" this and win ( or lose) you simply fade away. It is frustrating


LindaFL | 31/05/2007 14:00:00

Tell us about your experiences of phlebotomy: - How do you feel about phlebotomy? I think it is the SAFEST way to take iron out of the body. - How have your feelings about phlebotomy changed over time? I don't think it has changed enough for the HH patient. There are vaccuum bottles available but most places will not or do not know how to use these. Smaller needles benefit those who have to have 50 or more draws by saving their veins. But this is not done most places... large bore needles are used and the common bag. Not much change there for the benefit of HH patients. - How has phlebotomy affected your personal or professional life? Well, it got my ferritin down to zero since my doctor didn't feel the need to treat my low number of 190, even though I had two C282Y genes... He thought going to the blood bank was fine for me. It took almost 2 years for my ferritin to revive its self. Meanwhile I felt like pond scum. Giving a pint of blood should not change anyones life except for the better. This is a lifelong, to do or die miserably, disorder. Phelbotomy is a life saver. With NO side effects that can't be handled with some minor changes by the one who does the phlebotomy. - How interested would you be in an alternative to phlebotomy? Why? I would NOT be interested in a drug with major side effects. Liver damage has been a side effect of most medicines produced by drug companies. DUH, it is the liver we try to protect at all cost! While I know some people might prefer chelation meds... I don't. Protect my liver first, then if you can come up with a treatment that has no side effects like phlebotomy... show me the results! Then I might consider it. The major problem with phlebotomy is not the phlebotomy it's self but the one who is taking the shortcuts to make things easy for them. Educate the phlebotomist and the doctors.... that is easier and cheaper than expensive drugs that do more damage to our already delapidated bodies.

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Lue B. | 01/06/2007 15:19:00

Agree with Linda above. Phlebs, if done right, are not a big deal. Initially, a few years ago, I had one every other week and now it is like every other month. Even with all these "sticks", I have no marks in my arm. No bruising. A small stick to deaden the pain and then using a size 16 needle (big) I am usually done in about 20 minutes. I don't mind going, in fact, rather look forward to it, because I always feel better afterward. Another writer was talking about numbers. Must admit that it is me who makes the rule. I like to keep my ferritin below 20 and saturation below 30. Doctor goes along with that and orders phlebs when I request. Says below 30 can cause anemia so that is why those are my guidelines. I have a standing order and go in for bloodwork at least evry two months. If I have to have such a disease/condition, I am glad I have one that is easily treated.

lauren j | 02/06/2007 23:17:00

i work at a blood bank in texas and we do therapeutic draws daily (mainly for hemochromatosis and polycythemia). i have a few suggestions for those who have experienced complications from the phlebotomy. increase your water intake both before and after the procedure, it will help your blood flow easier and the procedure to be completed quicker. if the procedure is painful for you, ask for a xylocaine injection, it will completely numb the vein and effected area so the phlebotomy is an easier experience. to help prevent bruising, for the rest of the day after the draw, put a cold compress or ice on the phlebotomy site for about 10 minutes every few hours. if you still end up with a bruise, apply warm compresses on the phlebotomy site for about 10 minutes every few hours on the days following the draw. this will help your body deplete the excess blood under the skin. to prevent scar tissue from forming (which is painful and difficult to stick through) in and on your vein, try alternating arms as well as veins each time you go in. almost every (but definately not all) patient i have seen has two or more usable veins on each arm.

Todd R. | 05/06/2007 16:09:00

I was diagnosed with HH three years ago. My ferritin level was 1200. After 3 months of weekly phlebotomies I was able to get into the maintenance phase. I get a phlebotomy every month and my levels hover just under 50 now. The center I go to now uses a very narrow guage needle and fills 50 small viles (I believe it adds up to 250cc). I can barely feel the needle go in. It takes a little longer, but it is supposed to help save the wear and tear on my veins. I would definitely be interested in an alternative to phlebotomies but have never heard of such a thing.

Rob H | 12/06/2007 14:04:00

My dad was diagnosed with HH after he had congestive heart failure, diabetes, cirosis of the liver, ceriosis, arthritis, etc...the list goes on and on. I think if he had better insurance and money, it would have been caught earlier. He was having phlemotomies every week, now he goes every other week. He was on a heart transplant list for a while. He is now told that is liver is in really bad shape. I was tested at 30 years old and was diagnosed with HH. Mine was caught early enough to control before it damages anything, so I am told. I go get blood work done and do not currently have to have phlebotomies done. I watch my iron intake and that seems to help me.

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Cathy | 13/06/2007 14:48:00

I am in the being diagnosed stage, waiting for the genetic tests to come back. With a grandfather who died from liver failure due to Hemochromatosis, I am pretty certain that I carry at least one of the genes for it. My ferritin level is at 266 with a saturation level of 58%. I have been for 2 phlebotomies and at neither could they get any blood out. I was at the last one, in a hospital, for 2 hours, and still no blood. I did all the recommended things to make life easier for the draw. They told me that my blood was too thick and clots too fast and so plugs up the needles. So I am working this month on using natural means to thin the blood and will try again next month. I don't mind the phlebotomies, even though they haven't been able to get any blood out and leaving me with bruized and sore arms and once I get the blood thin enough, then there won't be any problem. I hate like anything to take pills, cause I always get all the side effects, so would probably continue to do the phlebotomies even if a pill was developed. I just wish my doctor was more aggressive,as he feels that since my numbers are low, I shouldn't have any side effects yet. HAHA Someday I would like to find a woman doctor who has HH so she would understand what I have been experiencing.

Alice W | 13/06/2007 14:56:00

I read in Living with Hemochromatosis that iron overload may also indicate cancer. How often does this happen. I do not have HH unless the lab messed up on my DNA test. sure wondering, Alice


LindaFL | 13/06/2007 14:59:00

Rob, I am very sorry that your dad wasn't DXed earlier. It was not the money or the insurance that was the problem though Rob. It was that the doctors were taught in med school that HH was rare, and, an old mans disease and that women didn't ever get HH... Plus, the tests that were being done were not tests that would "deliver" information about iron anemia or iron overload. It is only in the past 10-15 years that people could request a ferritin and iron studies. Doctors went by the hemoglobin. Which told nothing of what amount of iron was in the blood. I learned through a support group at American Hemochromatosis Society that labs produce what they call a normal range... that is not normal at all. They add up all the ferritin tests results and then divide by the number of tests they have done. This is then considered "normal range." It is nowhere near normal. It is only an average for that lab. In the early 90's my ferritin was twice what normal really was and I was told you don't have HH. The fact was... I DID. I was loading iron and continued to load iron. I was also taking tagamet at the time (still am) and that was lowering my acid which interferred with iron loading. I was lucky I guess that I was on a med that would block iron absorption. Even when I went in 2001 to a gastro for the DNA tests my iron was even higher... not much but enough to produce early symptoms... again I was told I did not have HH. I DID. I had 2 C282Y genes and a ferritin of 194. Iron overload. I went to the blood bank and donated blood to treat myself since no one else would. This is the thing your Dad was up against. Doctors who knew nothing about HH and were taught nothing much about it. Later Dr. James Barton did a study of how much doctors actually knew... I can't quote it but it was about 4 years ago and his data was that if your doctor had been out of med school over 10 years (that would be 14 years by now) Your doctor would not be apt to know much about HH. Doctors who were 10 (14 by now)years and under out of med school would be more apt to be knowledgeable about HH and that it is common. We women do get HH. Doctors gave us iron supplements during our pregnancies and never once did tests to see if we needed it. My daughter, C282Y /C282Y was pregnant and was given iron supplements. I was livid. I could find no protocols for pregnancy and iron supplements. After a "mom scene" her doctor began doing a ferritin test every month to check her iron levels. Still wanted her to take the supplements but did compensate for it. Rob... the doctors were not knowledgeable when your father was loading iron. They should have known if they did a liver biopsy as most doctors liked to do those... they should have seen iron in a biopsy of his liver. They didn't know to look. This is no excuse for poor medical care... they didn't know. They should have. They should have done every test available. I am so very sorry they didn't. There are many doctors still practicing that are still clueless about HH. I took articles in to my doctors. They didn't like it at all that I would dare hand them something that they should have read already, but hadn't. If it is the patients that have to educate these older doctors, I think we should do everything we can to make sure our children and grandchildren are treated knowledgeably by whomever their doctor may be. I am not going to sit back and allow a doctor to by pass what he thinks is normal with a look that says to me... OH NO!! A post menopausal nut! I have read the research, he obviously hasn't. LindaFL

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Susan Cntl Ca | 13/06/2007 15:20:00

How do I feel about phlebs? I hate them but after a recent experience with having a chest cath put in, I would have to chose the old needle trick. I was diagnosed w/ HH in 03, ferritin at the time was 1299 w/ a sat of 98%. The first visit to have a phleb was scary, not a big needle person, didn't know what to expect etc. It took almost an hour to draw 500cc of blood. Still haven't reached maintance although I have phlebs every two weeks. I decided to have a chest cath put in as I have collasping veins and my right hand gave out. My hemo doc said it would be easier to get the required amount of blood taken with the cath. I had out pt surgery March 8,07 everything seemed fine, shortly afterwards however I had a yellow/green fluid coming from the port of entry just below the collarbone, repeated trips to ER and the surgeon's office each time telling me everything was fine. Then a milky white substance coming from the opening just above the heart from the tubing. A fantic trip to ER on March 25,07 w/ a temp of 104, admitted to the hospital, surgery the next morning to remove the cath, I had contracted Staph Infection. It could have cost me my life! When I was diagnosed w/ HH I had severe fatigue, abdominal pain like being in labor, no energy. Had a internist tell me Hemochromatosis is not life threatening. In a sense it is if not caught in time. I have chronic hip pain, PLC caused from to much iron in the liver, confirmed w/ a liver biospy and numerous other problems associated with HH. If I had a choice over phlebs, I would chose medication, but they say phlebs are the best way to rid the body of iron. I am C282y and H63d, and the only sibling out of 6kids that has this "conditon"

gary | 13/06/2007 17:52:00

i am 36 years old and have cirrhosis as a result of hemochromatosis and excessive drinking. i spent the course of 14 months having to have a bloodletting on a weekly basis because my iron levels were so high. after several treatments , the proceedure becomes painless, at least to me, and the visits become spread more and more apart. the good news is that generally and eventually, the bloodletting will become maybe a one or two time a year thing. my biggest asset through all of this were the uses of natural herbs such as milk thistle and alfalfa root etc... and my high metabolism. i still suffer from minor anemia and i still have fatigue and my not so viral days. but all in all , there are a lot worse illnesses that i would rather not have. for any information about what i know please email bosaburnii@aol.com i am currently working on a few products that will help people with this illness and i will keep you folks informed. Gary

Lue B. | 14/06/2007 02:59:00

Very interesting comments above. I already wrote above but want to add this. If caught early, HH is not the most horrible disease you could have. It is very manageable. Phlebs given properly don't hurt. For gosh sakes..ask for Lidocane...it numbs and you don't feel the stick at all. I must agree that doctors just do not know enough....they will eventually learn...more is coming out all the time....in the meantime, get a copy of your blood reports. If you wait for the doc to say you need a phleb, it may be later than it should be. Ask your doc to write you an order whenever your numbers are too high. For me, I like to keep my saturation below 40 and ferritin below 20. I realize that perhaps some cannot control these things, but if you can, then do it! We are the ones that really have to control our health if we can.

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George Lewycky | 14/06/2007 15:24:00

I never had to give so much blood before. I couldnt donate because of medications I been taking. The first 2 of my 4 went smooth.... My Third ran into complications with my skin. Apparently the catheter touched my forearm and a outbreak occurred and took several visits to my dermatologist, special creams and almost 4 months to return to its original state. This time the phlebetomy also happened when I was sitting rather than laying on the examining table causing the catheter to get in the way. Strongly suggest covering your arm with a cotton cloth when having a phlebetomy my story and photos can be seen on http://georgenet.net/bloodhemo George

Kim | 16/06/2007 09:10:00

I have only just been diagnosed last week. I am 45 and have not had symptoms for this, had sore feet and hands from Ross River Virus (it kills) and my doctor tested for everything else, just in case. Turns out I have this thing and now after reading all your letters, I am freaking out a bit about the whole giving blood thing. I used to donate blood years ago, but stopped after I fainted straight after and ended up with very low blood pressure for about a month. I had no energy. I guess I will just have to make sure I drink lots before I go for the pleb thing hey? will drop a line later after I start with blood letting. Doctor wants me to wait until Ross river has gone. Also, my brother and parents are being tested.

Helen | 06/07/2007 12:47:00

I'm just waiting to see a specialist to confirm diagnosis following unusual results of a routine medical. I don't have my results to hand but know my saturation was 73% and apparrenty 60% 7 years ago, although my old doctor seemed to overlook this. The thing is, I'm only 24 (so 17 at previous test) and from my reading, I don't seem to see this as being to common. I do suffer from many of the normal symptoms so if diagnosis is positive, it will answer a lot of questions for me. Have any of you come across this much?

I'm not too worrried about the process of phlebotomy but does anyone find it inconvenient - I'm conerned about having to take too much time out of work and falling behind.

Also, do any of you have any symptoms that as not commonly listed - there are still a few minor questions currently unanswered that I think may be down to the disorder, should I have it. Eg, difficulty in giving blood samples (my blood seems very thick and hard to extract sometimes). 

LindaFL | 07/07/2007 12:51:00

Helen,  HH can make the blood thick.  And if you call the place that will do your phlebb, I am sure that they can work out a time so that you do not miss a lot of work.  Friday afternoon would be a good time and you could recover your fluids etc over the week-end.   The inconvience of phlebotomy will make life a lot more enjoyable so forget the inconvience and go for it.  It is possible that your place of phlebotomy will be open on Saturday.  Unless your days off or through the week I see no problem.

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LindaFL | 12/07/2007 13:51:00

My hope is that some HH researcher will do a study of about 1000 NORMAL people with no gene mutations for HH and follow their ferritin levels for maybe a year to find out what the actual normal ferritin is.  NONE of this LAB REFERENCE RANGE because the labs combine the results of all the ferritin tests they do and then divide by the actual number of tests and get an AVERAGE of all the tests.  This is NOT NORMAL.  One or two really high ferritins will corrupt any normal when they get their average.   And how many doctors do a ferritin test unless they are coerced by us who are patients.  So, in my opinion, how can the labs average range be used for reference?  In my opinion, even the reference range can be corrupted.  WHO IS LISTENING TO US?  Not my doctor.

kelly | 20/07/2007 22:10:00

I was diagnosed in 1995, after the gene test and the liver biopsy.  I got the phlebs every 2 weeks for about a year.  Then it went to once a month.  The longest I can go is 2-3 months.  I can tell when its time for one. In the beginning my blood pressure would drop so low I would need an I.V for an hour but that has since stopped depending on my pressure.  After 12 years of phlebs I am scarring and I've noticed that my blood is so thick it takes longer than usual but honestly I don't mind it, it's something we have to do and I feel better after them. I used to worry about it alot but as long as you maintain good levels, you will be o.k.  I thank God that my Dr. was smart enough to look further after seeing a high ferretin level, if he didn't, who knows.  My Dr. keeps my ferretin level below 20 and I usually feel pretty good. When my body starts to ache I know I need one. I'm hoping to be able to only do it 3 times a year but that hasen't happened in the last 12 years so we just deal with it.  I know a pill would be easier but the phlebs are part of my life now, LOL and I will keep getting them as long as I live.

Kevin | 23/08/2007 13:12:00

Hi. I was diagnosed this week (age 38) after genetic testing was done that i was not even aware of. Blood was taken while I was having a gastroscopy to check on previous high iron levels. I think some genetic counselling should have been given before i got the news or before the blood was taken...i still think i havnt quite digested the whole thing. Any way...one phlebotomy down, they did not manage with my left arm, so i am left with two painful arms - not looking forward to the rest but i suppose it is better than drugs with side effects. Those are damn big needles though...are the alternatives better (small needle but longer time)? What about dietary control...any magical iron absorbing supplements?

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Krista | 22/10/2007 00:39:00

I was diagnosed about six months ago after routine blood tests 10 months ago. My doctor kept insisting I come back for more tests, and initially I was frustrated. I was in the midst of planning a cross country move and am now starting my own business, and it's definitely impacted my life. Because of previous medical history, it was tough to qualify for insurance in CA. Now I'm uninsurable. It's hard to find a new doctor that has a clue, and I'm grateful now that I had such a great doctor that would investigate this in a younger woman. The more I've read up on HH, I realize how lucky I am to know early and to have an easy and free treatment available. I'm only 30 and there's not much damage. I had a liver biopsy and am C282Y homozygous with a saturation of 85%. Ferritin was in the 400s but hasn't been tested again since treatments began...seeing a new doctor this week, though. I initially started with phlebotomy every 2 weeks as long as my hematocrit was above 30. I didn't realized how sick I had been feeling until I started to feel better. I'd had an ulcer from NSAIDS in my early 20s and thought my stomach pains were related to that. Nope. They're gone. When I moved to the mountains last year I initially thought the altitude was getting to me, but then moved back to sea level and still felt crummy. Started phlebotomy and my body just doens't hurt like it used to. I always feel better afterwards symptoms wise...but I also end up very tired and often dizzy for a few days. It seems contradictory, because on one hand I'm weak and faint, but overall my body feels lighter and more energized and moves more easily. The dizzyness was a big problem for a while, especially with the demands of starting a new business. My blood pressure would drop afterwards and I would nearly faint if I wasn't careful. I was recently switched to 1/2 every week, and it's more tolerable. (I'm tiny). I've always drank lots of water but increased electrolytes and that helps greatly, too. I am learning to ask for help when I need it, and to schedule a day on the couch relaxing post treatment, which is one of the toughest things for me right now. I have just accepted that I need to slow down a bit and can't do everything myself. I also know that the weakness and fatigue I'm experience is temporary until my levels drop and I go to a less taxing maintenance schedule, oh, and it's saving my life. I would absolutely prefer phlebotomy to a drug. It doesn't hurt. I can go to the blood bank for free, which is fantastic. As long as my hematocrit is high enough (less than 1/2 the time) it can be used for blood donation, so at least I'm doing something good, too. Things that make me angry are doctors lack of knowledge. My brother's doctor initially refused to test him at all, even though in the past he's had high iron tests (which his old doctor ignored) and knowing my diagnosis. It's scary and maddening. He only just got tested after insisting they do it. I also get upset at how much food is fortified, and with the blood bank that tells people that they have low iron if they have low hematocrit. I was actually prescribed iron pills three times before based soley on that and got sick each time I took them, so stopped. I'm both anemic and loading iron, which is confusing at best. In general I think iron is greatly misunderstood and oversold. I haven't found much out there by way of lifestyle changes beyond less red meat no vitamin c no raw shellfish, and that's also a bit frustrating, as I'd like to know what else I could be doing...but again, overall, if you're going to get diagnosed with such a thing, the fact that phlebotomy is available makes this much easier.


Patrick Egan | 25/04/2008 02:22:00

Hello all, I am 37 years old and have been feeling fatigued for 3 years, arthritic pain in my hands and the ocasional twang in my knees, feet and literally my liver or adrenal glands... I don't even know if you can feel pain in an organ... but when I am tired and working too hard it happens.I have joked for the past year with the office manager that we need a bed so I can nap in the day.I have been coming home occasionally @ 3pm (I am in sales and sneaking cat naps) for fear of my wife thinking I am lazy.  She has been doing a bulk of the housework and I just have not had it in me to pull my weight.. I have been sleeping in till 8:30 or 9. but not sleeping well.    Recently urinating more often.   I am a bit of a partier, but not an alchoholic by any means, but I have been reacting terribly to alchohol for about ten years.  Depending on what and how much (4-8 drinks) I can end up vomitting yellow bile and most recently some red wisps of blood... to which I had found a reference to esophagus bleeding which Hemochromitosis can cause.SO... 8 months ago I get an email from a family member saying that they had this Hemochromatosis.  I popped over to the doctor to get a blood test, to which I shelved the requisition form for 8 months (because I am an idiot)..  and a couple of weeks ago after feeling tired, depressed, irritable, arthritic, liver pain, mild constant headache, not sleeping well, and incredibly lazy... I got of my ass and got the test.  I kept telling my wife, I don't know what was wrong, I felt like I was Rotting, literally.  Turns out Malaise is actually a symptom ... a general feeling of being unwell. Ferratin level of 1125 saturation unknown..  hemoglobin apparently normal... to which my doctor said, he'd normally only do a iron check if the hemoglobin is off... and I have read now in multiple locations that this is actually not a conclusive indicator. All I can say is that I want this crap out of me and can't wait for my first Labotemy (haha)..  the Docs don't seem to laugh when I make that joke. I guess it is an old one. Anyhow, boy did this explain a lot... so I of course have started telling some people about this "disorder" and it turns out another guy in my office (2 people of 30) has exactly this.  he was 500 when he discovered it and he's 5 years older than me. He's labotimized every 2 months. My liver enzymes are apparently okay.   My number one fear is what damaged has occured to date. Cirrosis and Cancer being the main concerns. but hopefully I have caught it in time. I was elated at first, feeling happy that I have finally found a source of the problem.. but now angry and impatient.. literally I feel like donating blood tomorrow but don't want to mess up my proper treatment.  My appt. with the Hematologist is On may 12th, 2008.Other info. 37, receding hairline, run 10k in under an hour. half marathon in 2:17.. I should be able to break 2 hours given age and level of fitness.. this might explain it..  I am strangely enough 30lbs overweight to which my 130 lb. wife eats as much as I do and keeps it off... unfair...Well best of luck to all of you!! 

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Jennifer B | 31/05/2008 19:43:00

I am 47 and just diagnosed with HH.  I have struggled with unknown origin arrythmias for nearly 25 years after my OB/GYN directed me to take iron supplements during preganancy, even though my bloodwork showed that iron levels were already higher than normal.  After a recent blood test showed my liver enzymes through the roof, I did some research and realize that I may be in mid- or end stage HH.  Haven't started blood letting but will do what it takes. I also have thick blood that will barely come out, so the tips above will help.  Just a couple of thoughts about the phlebs: I've been joking to my family and friends that at least I've got a "Poor (Wo)man's disease b/c at least I can go to a blood bank and receive my remedy for free!  I am also worried about the scarring and the time that the phlebs will take as I run a very busy Brokerage.   However, blood letting is coming back in fashion as something that is good for your overall health, so I would probably stick with it even if meds do become available.


annette | 05/06/2008 01:00:00

My 39 year old son has ferritin level of 2397 and a 96% saturation. Also elevated liver function. My other son 35 years old has a ferritin level of about 500 and 85% saturation. Other tests seem to indicate an HH diagnosis as well. They both have the same MD who will not order phlebs unless/until a genetic test is done. Should they be looking for a new doctor?

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Flowergirl | 28/06/2008 17:28:00

No, they should do the genetic testing.  My DH has HH and almost thte same number as your 39 yr old.  My son had all the testing but is much younger.  His doc said he needs checked every 3 years.  My daughter has not had testing at this point, she is young and has cycles, so I am not worried about it at this point but testing will be done at her next doctor visit.  You son's need to begin phlebs as soon as possible.  My husband has been at it for 1 1/2 years now.  He now goes bi-weekly.  Good luck to you.  FLOWERGIRL:)

annette 06/01/2 | 02/07/2008 19:09:00

thank you Flowergirl for your info. since i last posted both sons have been tested. the older one is c282y/c282y positive. the doctor only wants to do phlebs every other week. he can't get into a specialist until sept. it seems to be quite  difficult finding doctor's who know what they are doing. it was encouraging to hear someone who had similar numbers is doing so well now. thanks

Christine | 06/09/2008 16:37:00

In 2004, My 2 brothers and I were finially diagnosed with Juvenile Hemochromatosis. My ferritin level was just over 6000 with 90% sat. I have giving blood 2 and 3 times a week for over 2 1/2 years to get my levels down. Now I am back to doing it once a week. I have heart damage and cirrhosis, I am only 42. I know the phlebotomies are saving me from further damage, but what little strengh I have, is gone again. Everyday I have to fight to stay out of depression. I have days were I want to let go and just die. My driving force to stay away from those thoughts, is my family and my anger. I am very mad and I will stay mad until these so called doctors listen to us. For many, many years I was told my problems were in my head, and look now I am lucky to make it out of bed. Well, I guess I am lucky in a way. I am able to talk to people and some I have even helpped to find out what was wrong with them. I guess this is what I was meant to do. I am leaving so much more information out, Right now I am trying to get someone to reply to me, on the new birthcontrol medications that can stop a womans menstrual cycle for up to a year. And told it is safe. All I see is sick women earlier in their life! I hope everyone that suffer with disease has a better future!

Patty | 09/10/2008 18:37:00

 I wa diagnosed in Jan. 2008. my pcp found abnormal liver function tests, sent me for more testing, eventually my Gastroenterologist said he doubted I had HH, but tested just in case, I had had all other testing, that's all he could think of left to do. I have both genes, my Ferritin was at 1050, he wanted me to have weekly Phlebotomys, but our hospital will only do it every two weeks. I have been habving them since March 2008. Last check my ferritin was at 700, but I had another blood test and get those results at the end of this month, he says we are wanting the level to be at 50.I don't mind the Phlebotomys too much, my Dr has ordered Lidocaine for each session, that made me happy! Although 'm usually worthless on those days, I just lay around and rest. The more I find out, the more I can help myself to keep the Iron down, diet, exercize, etc. I hat that I have this diagnosis, but I'm also happy I found out early enough, I'm 44, and I had two Liver biopsies...no damage!And now I can make sure my family members can be tested and hopefully keep my Grandchildren from suffering from this.Good Luck All!

Brenda | 20/10/2008 02:28:00

I was diagnosed in March with HH. I give every 2 weeks a pint and am so tired after I give. But then I feel much better after 24 hrs. I have only had one bad time giving blood. I walked out with a icepack on my arm and black and blue. I am not one that consumes alot of fluids but have learned that giving goes alot smoother when I do drink water before and after. My Ferritin was at 1250 when they found this. I am 45 and female. My dr hasnt seen me since March so I am assuming I will go back in when this order for blood ends for more testing. My Hemocrate is at 42 now and the dr wants it at 33 slight anemia. I dont mind giving blood...although I hate needles. They do use my blood when I have to do a phybotomy. I am o positive so being able to save my life by giving blood and someone elses helps. I dont eat beef, cereal, pastas...and I could go on and on because of the amount of iron in these foods. I try stay around 4% or less with the iron in the foods I eat. I would not want to take medications for this because I am forgetful. I do have alot of pain in the joints but other then that I feel fine.

Strype | 11/12/2008 16:27:00

I HATE NEEDLES.Let me know when the alternative comes! I have just recently been sort of diagnosed as in the last couple of weeks. I am a 29 year old male. My serum feritin is 3,000 and my liver is full of iron after biopsy so...   

bob | 23/12/2008 16:40:00

Wow, lots of stories here! I am a 55yo male who was diagnoised 3 months ago after a routine blood test came back bad. What I dont understand is why it was never discovered earlier as I do have complete physicals yearly?I am also being treated for Fibromyalgia, Diabeites, and arthritis.I am petrified of needles, Figures..but I do not want anymore medications to take, so plibotomies it is.I go to a local hosptial once a week, I am now on week 7. My initial ferritan was 850, dont know the percentage..I see the oncologist once a month to determin the next phase, so far it ws just to order another 4 weeks of treatments.The first time they used a bag with a 16 needle, took 4 tries to get it into a vein and plugged up after 3/4 full. I screemed like a baby when it was inserted, I think the fibro makes me more sensitive, and it went into the soft tissue and not the vein.The following treatments are done with 36 vacuum tubes, some times they get it all, sometimes only 1/2 to 3/4, and every time it is 3 to 4 sticks.Except yesturday, one stick in my lower arm and all the bottles filled!!! yeay! My veins at the elbo are very small and wriggly hard to stick.The balance of the day I am useless, tired, stomache cramps, ect. but by the following day I am usually ok, though today my arms and hands are wicked cold, and I am still a little tired, after sleeping for 20 odd hours.though i hate the needles, I will continue the program, and Like most things, you get use to it. I cant beleive how relaxed I have become before the procedure, and during it. The needles no longer scare me. So If you have a fear of needles, request a butter fly 19 or 21 guage needle with a vaccum tube, or tubes. The smaller needle is easier to get into the vein, with less pain from misses, and the vacuum keeps the blood flowing.. Takes about the same time as the bag.

maureen tyzack | 02/02/2009 05:16:00

Bonjour from France.  I am 54 yrs woman - english living in france.  I must say the french medical system is i think better than the uk.  My GP saw on a routine blood test ferritine levels at 913 plus some other abnormalities.  He ordered a DNA test for mutation of gene HFE C282Y which came back positive.  So I have the hereditary form of the disease.   After a few years of 'things' being wrong but for 18 months lots of things wrong and very much pain I feel mentally better to have a 'name' to the problems and not feel that I am a moany woman with always something wrong. But limits were reached with diabetes diagnosed and arthritus expoding with the most excrutiating pain which left me unable to walk, stand, sit, use my hands,pain in the feet, shoulders - every joint you can think of in one time.  One attack lasted 6 weeks and i had to have a morphine based painkiller.  Other symtoms include severe intestine pains, headaches, slight memory loss. Tiredness -- well I thought i was going mad!  I would fall asleep everywhere - in the doctors, in the hairdressers! I could not drive sometimes for very long - my eyes would start to close.  Even doing the lightest of work would cause fatigue which is undescribable!  This thing  really goes everywhere.   As for the liver,well, I had to go for a MRI scan but to be honest I freaked out when i went into the machine - so the test could not be done and i still have to find a way to see if the liver is affected.  Scary!  At the moment I am having blood drawn off every 2-3 weeks and I must admit that the tiredness is going away very quickly and am finding i can live life being 'awake' again.  Joint pain is still there but I can use my hands again and overall joint pain is less but my legs do ache so much and the knees are very painful still.  The intestines have settled down better and are 'working' correctly at the moment.  I see this disease as coming in attacks with no warning and the severeity of the pain - certainly for me - is just excrutiating.    I absolutly loath needles when they are aimed at me but it must be done!  I am getting on OK with this but the hospital where i go the nurses are really kind and gentle and take their time, so i am happy at that.   I see a specialist on 20 feb 2009 so wait for his comments

Carollynn | 21/02/2009 07:08:00

I am a 55 year old female and I was diagnosed in September.  I have a symptom that no one has yet mentioned and I am wondering if it has anything to do with HH.  My lips are swollen and irritated.  It seems that the higher my iron levels are, the more sore my lips become.  Has anyone else experienced this?

John | 18/03/2009 16:59:00

When I was first diagnosed 6 years ago, I had to have a blood test on Wednesdays - Phlebotomy on Thursdays - for 18 months.  Before this, I would just about pass out at the sight of a needle.  Now... I let the interns draw blood.  It doesn't bother me at all.  They've pulled blood from my arm, wrist, top of my hand... it just doesn't matter anymore.  The moral... you can get used to just about anything.  Just don't get near me with a dental drill!

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