Hemocromatosis

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Wed, January 30, 2008

I was wondering if anyone out there has been diagnoised with hemocromatosis or iron overload in the body. I was just diagnoised with this disease not long ago and they say it affects 1 in 10 people but little is known about it they are sstill doing alot of research but state that it causes arthritis,fibro muscle weakness & pain, liver cancer, bone cancer and there are a few other things. it is funny because they said that this disease is more common in men! but the people in my family that have it have all been women! my mother, my neice, my daughter, me and my other daughter has not been tested yet ! . I would like to hear from anyone that has this disorder or knows anything about it because I am still researching and trying to find some researcher to find out if there has been a study between this and fibro!.

Thanks Edie

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luis nin estevez

4/17/08 8:49am

Hi, not sure I can be of help; but regretly my brother died (aged 54) last week due to hemacromatosis. I have little information because he had hidden information to us in order to avoid concern in the family, but as far as I could know:

-strict diet and exercise is highly recommendable

-if the disease is found at time, it can be controled (supposedly one liter blood is to be extracted once a year, without reposition)

My brother was too late diagnosed correctly. He never drunk alcohol but doctors didn't believe him.

Rds

Luis

Lisa Bacon

7/11/08 5:28am

I found out I had hemocromatosis when I was 23 years old, I thought I was lacking Iron because I was tired all the time, but infact found out I had to much iron.I have never been told anything about it I was just told to watch my meat intake.

Now aged 33 years old with 2children, I have pains in my stomach, my bones ack and after reading about the seriousness of bone cancer, liver cancer Im feeling kind of scared to see the doctor now. Recently meeting my real father I have found my uncle has luchemia, and another Lung cancer and one just died of a blood desease.

Im upset the doctor didnt tell me more, its sounds like a terrible thing to have

From Lisa Bacon

Mary

7/14/08 1:11pm

Hi, I was looking up info on this wondering if it's a possibility my husband may have it.

There was an interesting program in regard to this last night on The Learning Channel on TV. It took forever for the man to get it diagnosed and now he's on a medication--I can't recall the name and donates blood (it's something to do with bloodletting--no, this wasn't a joke!) You might try going to the Learning Channel's website or contacting them to see if you might be able to get a transcript or info on the program that was aired. The date was Sunday, July 13, 2008 in the evening on the program called "Mystery Diagnosis". Hope this might help you

Sunshine Susy

7/18/08 11:12pm

Hello! Go to this website: http://www.cdnhemochromatosis.ca/ it has great info and a discussion board where people with this disease and drs discuss it. I was diagnosed with this 3 years ago (39 female)...and both my brothers have it. You need to keep the iron levels in your blood in a specific range which can be done by donating blood regularly. I just have a standing order at the clinic to get my blood tested monthly and if it falls into a higher range then the dr calls me and I go get 1/2 litre - 500 mls taken out. Frequency is different for everyone but I usually go every few months. There is no medication but eating healthy, limiting red meat and alcohol is important and do not eat sushi especially raw shellfish like oysters as there is a contaminent that they frequently carry that may only cause minor flu like symptons ina regular person but will kill a person with high iron in their blood...not to be dramatic, just avoid. The best thing is to see your dr, ask for monthly blood test to monitor your iron levels and donate blood as often as possible, and exercise...very common genetic disorder..and is not more common in one gender over another...they believe symptons show up faster in a male due to females menustration (losing blood monthly)but that is ridiculuous because often females with this disease have very light periods so they don't lose enough blood to make a difference in their iron levels.

All the best...Cheers...Susy ;0)

Rebecca

11/19/08 9:07pm

Just got back from the cancer doctor. I was diagnoised with hemocromatosis Ive been telling the doc's this is what i had ... I hurt so bad I want to scream I take pain meds and they only lasr for about 1 hour... The cancer doctor said I don't know why you hurt this bad go back to family doctor ... Real funny cause family doctor said i had fibromyalgia which I knew that was not it Please help if any one can?

Edie Hardesty

1/28/10 7:43pm

I was just wondering why you thought you didn't have fibromyalgia as I do and it is a very very chronic painful disease. I know of people that hurt so bad that there are days they can't get out of bed. So I was just wondering but I am glad you found dout what was wrong as it is horrible to be in as much pain as we all are especially this day and time.I wish you well.

Edie Hardesty

1/28/10 7:44pm

mercedes

5/29/09 6:52pm

hola! yo no escribo ingles pero lo leo yo! soy una mujer de 32 anos de edad que sufre de lo mismo y esta sufriendo por todos los! incombenientes de esta enfermedad y por si fuera poco tengo que aguantar .los mareos,depresion, y dolor abdominal,tanbien cambio de color como gris oscuro en mi piel y las manos cuando tengo mucho hierro en la sangre/ es una enfermadad muy compleja y desgastante.................................... gracias

suekoo1

8/12/09 10:12pm

Hi, my son found out he has it several months ago. His liver enzymes were 2,500. Normal is between 250-500. They were taking blood from him once a week but his is now in the proper range. He will have to go every three months now. He had no idea he had it.... no symptoms whatsoever.

Luisa

9/ 1/09 10:39am

I had been diagnosed with this disease 8 years ago. I'm glad everyone is saying that it hurts , no one believe me. This past May I had a liver biopsy, now I have fat in the liver is very difficult to take care his ; foodis your enemy. Sorry I'm not a pessmist ,but it had been diffucult for me.

Luisa

Rebecca

2/ 1/10 10:03pm

Doe's the palms of your hands turn red mine do elbows to...Every joint where im connected hurts.. I notice when my palms turn red I get really tired and just want to sleep all the time Im sick of this Im sick of no meds help I NEED HELP!!!!!!!!!

Rick

1/28/10 11:25am

Hermocromatosis is a genetic disorder, that is why it good if you have it, all members of you immediated family get tested for it. There is no cure for it, the only remedy is that you go ever so often and donate your blood. Usually it is every couple weeks to start and then once it is within acceptable ranges (your feratin level), you start to go less often. I was diagnosed with it, over 10 years ago, and had a feratin level of over 1800, Thank fully it was diagnosed early enough that there was not any liver damage. I started the every 2 week regement, then every month, then every 3 months to get my feratin (carrier of iron) below the acceptable level. Now I go every 6 months and try to maintain my feratin level around 50 (which is low close to anemic, but thats where my current doctor wants to see it). Each doctor will have their own level, but somewhere between 50 and 200 is normal. As others have said, diet, exercise, limiting acohol consumption all can help -- but they are not a cure. All they do is either limit you intake of iron (no meats), or limit other stresses on your liver (i.e., alcohol), as it is already being stressed enough. Couple other points regarding diet -- of course do not take multi-vitanims with extra iron or any product with extra iron. I was also told to avoid orange juice or at least vitanim C tablets, which I know lots of people like to take during cold season and it increases you bodies ability to store iron.

It is also true that the discovery of the disease is relatively new, although it have been around for a long time -- just not diagnosed. Most the time a death would be attributed to heart or livel failure, when in fact this disease was the cause of such failure.

It is extremely important to follow the plan established, and if done has been established seek compentent medical care. The problem is that your liver can only store so much iron, afterwhich it starts to puch the excess iron out to your other organs, hence heart failure.

Ali Wright

9/15/10 2:27am

I have just been diagnosed a few months ago and am due for my third bleed next week.So far dont feel any different from the venus sections.I use to be a gym junkie but sometimes find it impossible just to do every day tasks like hanging washing out.

I have had to cut down on work to.

I was also diagnoised with rhumatoid arthritis at the same time and as both things seem to have similar symptoms i really dont know which one is causing me the most pain/fatigue.

I am female and 44 still having my periods so the doctor said its quite unusual.

Although when you start telling people it seems very common.

Im not one for sympathy but this has really affected my life and its hard when you look o.k but are so fatigued and in pain

Hemocromatosis

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