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Does anyone have experience of Hemochromatosis?

By Alli Ryan218509 | 1 post, last post
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Alli Ryan218509

I suffer from shortness of breath, lack of energy, abdominal pains, headaches, severe vomiting where I can go for days without being able to keep solid food down, a range of insane allergies that appeared out of nowhere, lumps under my skin that always present themselves around my joints about 2 weeks before my menstrual cycle and are permanently around my hairline and a number of other things that can be associated with many different illnesses. I have been in and out of hospital for the past 11 years for countless scans and tests but they still have no idea what is causing these symptoms.

Recently we found out that my mother's aunt has a condition called Hemochromatosis. It's a genetic mutation of the blood that means the body absorbs more iron then it's supposed to and it can damage internal organs and cause 'phantom pain' etc etc. Hers is the hereditary type, which means that more of the family could have it, some of our relatives have actually died from organ failure (caused by untreated hemochromatosis).

I only know what I have read about this condition and when speaking to the Doctor he didn't seem to know too much about it either and also didn't seem to be too concerned. I have spoken to several people and there doesn't seem to be too much knowledge regarding hemochromatosis at all. It seems to be a mystery condition for most GPs.

Does anyone have any experience of this at all that could maybe give me some advice on what I should do? I'm tired of sitting around being poked and prodded while they try to guess at what's wrong with me.

Ashleypem28259439

I was diagnosed with hereditary hemochromatosis about 6 months ago, I am 29. Women don't usually have any symptoms from it until menopause because when you have you loose a lot of iron during your period. It's very rare that I have symptoms already. I got one gene from my mother and one from my father that gives me this disease. No one else in my family has it that we know of. My doctor noticed my iron was high when doing blood work for unexplained weight loss and just generally not feeling well. From there I had genetic blood test done which diagnosed me with hemochromatosis. The treatment is a phlebotomy, which is getting blood taken out to reduce the level of iron in your blood. 

About 3 weeks ago I had my first phlebotomy. It didn’t go so well . Since then I have has blood work done and my ferritin lever ( saturation of iron in your blood) has gone up. Not sure why or how, but it’s odd.

Anyway I hiope this helps a bit and this is a good website to check out as well for more information.

 

http://www.hemochromatosis.org/

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