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.
I was recently diagnosed with hereditary hemochromatosis, confirmed with a homozygous genetic test.
My ferritin was originally 629. Two months later, it was 690 before my first phlebotomy. After 1 phlebotomy, two weeks later before the next phlebotomy, it was 223. One and a half weeks after the 2nd phlebotomy, it dropped to 99.
This means my iron dropped 467 with one phlebotomy (drop of 68%), and then 124 (drop of 56%) with the next.
There is no recent data on serum iron or TSAT since phlebotomies. They were originally 220 and 64%.
All my research has never shown anybody else showing such a large drop with a moderate ferritin level? Any of you?
If only 10% of my blood is being taken, you would expect a drop of 70ish at most, not 467.
Where is the iron going? I am concerned because I see no mechanism for all that iron to have left my body. I'm concerned that all that ferritin could be free iron now.
I'm a 42 yr-old female.
Any thoughts or ideas?
As one possibility, anybody ever heard of a lab getting ferritin wrong?
Thanks!
I've had large jumps and drops over two years, but it seems people see unexpected behavior in the beginning, probably because the body is trying to make adjustments to the dramatic changes. Your levels aren't toxic, so I wouldn't panic. Wait six months and get a new iron study. Nothing sounds worrisome though.