I was diagnosed with hemochromatosis about 15 years ago, have undergone regular phlebotomies ever since. In the past six months or so, my iron saturation levels have been high (80%) even though my ferritin continues to drop (now at 31). My doctor wants to continue bi-weekly phlebotomies since my other counts are normal (not anemic). I have a hard time phlebotomizing (tiny veins, can rarely get a full unit). Does anyone know a) is it standard treatment to keep phlebotomizing to get the saturation levels down? and b) are there any other treatments out there besides phlebotomies?
How did they diagnose the hemochromatosis - was it confirmed with a genetic test?
I have intermittent high transferrin saturation (as high as 73%, but more recently it was only 25%), and high free iron, but low ferritin (near the cut-off for "normal") - and on a low iron diet (mostly vegetarian) - hemochromatosis was suspected, so I was tested and was found to not have it. So far I've been told that as long as the ferritin isn't high, I need not worry about my odd iron levels - I'm not as convinced, as I don't think excess free iron is good. My father's sisters, and one of their daughters, has a thalassemia minor (there are several types, I forget which they have), but I don't seem to have that either.
Thanks for the reply. Yes, I was diagnosed via genetic testing. Since I posted, my dr has stopped phlebotomies for a while since she was afraid I'd become anemic. She also said that she did some research & found some links between estrogen (I'm on birth control pills) and high saturation levels. Do you know anything about this?
I have the same situation. Was diagnosed about 10 years ago. Been fine with regular phlebotomy. But I just tested and even though my Ferritin is low at 29, my serum shot up to 80%. Did you find out any info? I have yet to speak with my doc about this.
Tigra, I have been doing some research and it seems that we might be what is called iron avid, which naturally occurs when patients have HH. It seems that the body tries to compensate for low levels of iron in the diet. Have a read on page 3 of this article.
My husband has HH with a 90% sat and continues to have phlebs. I don't think that there is any other safe ay to get the same results. The lowest his ferritin got was 29 and he went to every 3 months at that point. FLFLOWERGIRL