Hemochromatosis

Question:

Do you have or have you had hemochromatosis? Please tell us your symptoms. Submit Your Comment

Comment from: Little bit , 35-44 Female (Patient) Published: September 24

I have hemochromatosis. I am 38 years old. I have been sick for a while and no doctor ever found out what was wrong with me. I would gain a few pounds and lose lots, it was awful and still is bad. I am trying to learn more about this blood problem I have no one who has ever told me what to do and how I am to help fix it, or if this happens do I go to the hospital. I was born with it and my thyroid also has cysts all over it, so hyperthyroidism is another thing wrong. With this hemochromatosis my joints hurt so badly.

Comment from: viking, 55-64 Male (Patient) Published: August 30

My hemochromatosis was discovered at age 56 when the use of my fingers were diminishing. From first noticing problems to having serious problems took 6 months. Whenever I used my fingers I had pain in the area of 1st and 2nd joints. Treatment is tapping 1/2 liter blood when ferritin level is above 100ug/l. Treated this way, I can use my fingers, although, if I am not careful, I am rewarded by a tingling pain around 1st and 2nd joints the next 24 hours. Oddly, pain will be intense during nights. Thus I can wake up during the night with intense pain. To me it seems that tingling pain around 1st and 2nd finger joints is provoked increasingly by ferritin levels at 100ug/l and above, as well as relatively hard use of the fingers, especially for longer periods.

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