Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Gastrointestinal System
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ferriten levels

mhoughton05
mhoughton05
hi, been diagnosed with heamachromatosis had my first venesection going for my 2nd tom, wondered if any one has or had a level of more than 4000 for there ferriten test as i have, bit concerened how long it will take to lower and if any damage may be occuring while im waiting thanks for reading mark
deleted_user
deleted_user
Welcome Mark: I know of three or four members who have had higher levels of iron. Check out these threads: Irony (ferritin 6855), nomalized/de-ironed within a year; Eric2010 (4000); Ironmanswoman (4000). And I believe that 12yearironman also had significantly higher iron.
I have had four venesections. My ferritin has dropped from 1300 to 540. There are some hopeful stories here. It is important to follow up on liver function, heart, and other organs. Often there is significant improvement even in compromised organs after one is de-ironed. Good luck.