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.
Two days before my birthday this month i got the word from the genetic testing and i got hemochromatosis.
Type H63D which is suppose to be milder but seems that only because its so rare.
Only found out by pure dumb luck when i had my vitiams tested as i wanted to check them because i was working out.
Iron was high and turned my saturation was at 67%.
Now i had some gut grumbling and joint pain but nothing i couldn't ignore.
Lately though i gotten some chest pain that last no longer then a min .
Had my heart tested and its fine but the other issue which has gotten hard to ignore was there.
I feel breathless a lot of the time like i can't quite catch my breath and mildly dizzy.
Getting through the six minutes on the treadmill was murder and iam not that out of shape...lol
Why the heck do i feel like i moved to a higher elevation?
Type H63D which is suppose to be milder but seems that only because its so rare.
Only found out by pure dumb luck when i had my vitiams tested as i wanted to check them because i was working out.
Iron was high and turned my saturation was at 67%.
Now i had some gut grumbling and joint pain but nothing i couldn't ignore.
Lately though i gotten some chest pain that last no longer then a min .
Had my heart tested and its fine but the other issue which has gotten hard to ignore was there.
I feel breathless a lot of the time like i can't quite catch my breath and mildly dizzy.
Getting through the six minutes on the treadmill was murder and iam not that out of shape...lol
Why the heck do i feel like i moved to a higher elevation?
Saturation is 70% plus
And yes two mutations.
Had a catscan no clots in the lungs although its apparent i am having issues getting enough oxygen into my system.
Of course my red blood cell account is up and my liver enzymes are somewhat odd.
I was diagnosed in 1998 and under treatment. In Jan 2003, my sf was 45 and saturation was 90%.
A friend had us over for dinner and she was cooking in an iron skillet which I didn't realize before I ate. While that didn't cause all of the high %, it sure didn't help.
Iam not low on iron it seems.
My red blood cells are borderline abnormal..meaning the shape is not quite correct.
Stress test on my heart came back fine.
Only thing that driving me nuts is the feeling i can't quite catch my breath when i exert myself or at times when i am doing nothing..
Seems iam having some issues keeping the blood saturated with good old h20..no idea why.
Liver still needs to be tested oct 17 and hopefully if its ok i start blood draws.
So to the fact i had leukemia in my past the blood get tossed.
Since i also had a dvt and pE in the past i also at a somewhat higher risk to develop them again. apparently..