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.
Diagnosed with H63D both genes and i am now in maintenance mode so i down to doing blood draws every three months.
Had wrist surgery on aug 29 and promptly developed a large clot in the other arm.
Years before i had right knee surgery and developed a clot but it was thought at the time it was just bad luck.
Now it seems that's not the case and both the emergency doctors and my own doctor are thinking i may have to be permanently on blood thinners.
I see the hematologist nov1 so i may get some answers..i hope.
Any idea what the heck going on?
Is there something about hemochromatosis or my mutation i didn't know ?
Having my life at risk due to this clotting is less then fun.
I already had a PE from the first clot and beat the odds and this clot i caught early enough that i didn't develop one.
Had wrist surgery on aug 29 and promptly developed a large clot in the other arm.
Years before i had right knee surgery and developed a clot but it was thought at the time it was just bad luck.
Now it seems that's not the case and both the emergency doctors and my own doctor are thinking i may have to be permanently on blood thinners.
I see the hematologist nov1 so i may get some answers..i hope.
Any idea what the heck going on?
Is there something about hemochromatosis or my mutation i didn't know ?
Having my life at risk due to this clotting is less then fun.
I already had a PE from the first clot and beat the odds and this clot i caught early enough that i didn't develop one.
Hope this helps..
Cheryl
They knew going into the recent wrist surgery i had hemocromtois but i was in maintenance mode and my iron levels are in the normal range.
I shouldn't have clotted or so they thought.
To Make matters worse they have me on warfarin and they never been able to get that stable.