Hemochromatosis - Blood and Blood Vessel Message Board

2kool · 04-09-2003, 09:25 AM

Can anyone give me information about this disorder. I know it as an abundance of iron in the system (opposite of iron deficiency). The symptoms I've found lead me to believe I could possibly suffer from this....they are and I have...diabetes, joint pain, amenorrhea, thryroid disfunction, pituatary gland irregularity and abnormal hearth rhythm. Any informaiton anyone has would be greatly appreciated.
Thanks.

dianneonly · 05-05-2003, 11:11 AM

Hemachromotosis is caused by a mutated gene. It takes genetic testing to verify whether you have the mutation or not. From what I understand it is hereditary. The mutated gene is H63D. Some believe you only need the one gene others say you need two.
Hemachromotosis is controlled by donating blood every so often depending on how much iron you have, so the iron overload does not cause any damage to your internal organs.
I hope this has helped you.
Dianne

bradford54 · 05-08-2003, 12:00 PM

I may also have Hemochromotosis, Just get my blood work back and was neg. for every thing hepatitis, cancer,...just showed iron overload. need another blood test to confirm. I also have a ALT of 82 which started the hole testing.
If I have Hemochromotosis is this better than some of the alternatives hepatitis or cancer,....
I will do the blood work Monday and it will be a week to get it back. then make and appointment or more test.
Other wise feel good

[This message has been edited by bradford54 (edited 05-08-2003).]

Sizzler · 07-07-2003, 10:31 AM

There is an official website for hemochromotosis. I have had a variety of symptoms for years and I think/hope are finally being taken seriously. I recenltly had an iron level of 210, normal is 60-160. One doctor said the test was a fluke. Even on the repeat (after 2 months of bleeding) it was still high. Current doctor wants to repeat the test in 3 months...isn't this a long time to wait? Some of my symptoms that have been blown off to stress throughout the years are stomach pain, joint pain, heart palpitations, severe constipation. One time I was on a vitamin pack (loaded with iron) and felt like I was having a stroke -- shakiness, confusion, heart going crazy. My doctor did EKG which was abnormal. He asked what kind of drugs I was on. None of course, but we narrowed it down to the vitamins. Nothing has EVER been followed up and I have been to at least 5 family docs trying to get answers. What was your iron level? What are your symptoms? The problem with diagnosing hemochromatosis is that there are so many symptoms but they do not all occur at the same time and they mimick other conditions. If this can be controlled, I would say it is certainly better than the other conditions you mentioned. I hope we can both get a confirmed diagnosis so treatment can start. GOOD LUCK

Snowie · 09-11-2003, 07:35 PM

I just picked up some blood tests i had done and one was the ferritin test. I had my total iron test done as well and that was normal. However my Ferritin test results are 10 x's the norm. 1185 ng/ml. I was diagnosed with n.a.s.h. in 1999. My aunt had told me about this test and said i should have it done. I am 34 years old. I am curious about the test results on this. If anyone has any information. I do have liver disease and chronic pancreatitis and am also diebetic these ailments occurred all at once in 1999.