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 just wanted to say hi to y'all.
Has anyone here caught their HH at an early stage before the ferritin got really high? or before their saturation % was still under 45%?
I'm at the early stage of all of this. Have not had the genetic testing yet.
Has anyone here caught their HH at an early stage before the ferritin got really high? or before their saturation % was still under 45%?
I'm at the early stage of all of this. Have not had the genetic testing yet.
My saturation is 41% but ferritin is 104.
There have been a few people who posted on this forum who have been fortunate to catch it early, like you. They generally donate blood to the red cross a few times a year AND their doctors monitor their iron levels. In other words they jump straight to maintenance without needing the treatment phase, if they have levels as low as you two.
Lucky you!
In those days, the hematologist I was seeing didn't know much about HH and when I asked about getting a DNA test, he ordered HLA ABC typing test in 1998.
I then had myself tested for DNA and it showed HH. When I showed him the results, he asked me why I tested for it when he had ordered the other test. Told him I hadn't the foggies idea what his test results meant (and I was a nurse in my past) so I ordered one that was more meaningful. He was in his early forties back then. Another hematologist who was near 70 was very informed about HH.
Sorry for rambling. LOL