[ Post a Response | Hemochromatosis ]
Posted by Karen
on 9/11/2005, 9:54 am, in reply to "DOCTORS???"
205.206.55.223
My doctor was pretty ignorant about HH too. The nice thing was though, he admitted to being ignorant. Initially, he told me I didn't need to be tested until I hit menopause - that alghough my sister was diagnosed (and her ferritin was over 4000), I would be ok because I was releasing blood every month. I told him, no, my sister's hemotologist said that I was to be tested (I also had other symptoms - arthritis, chronic fatigue). He agreed to doing the iron tests, but not DNA. My ferritin was at 1400 - he refused to start phlebs until consulting with the hemotologist. I printed off information from here and other sites - and he finally agreed to start phlebotomies since my appt with the hemotologist was 6 months down the road. Last week I saw the hemotologist who told me that GPs are always reluctant to do dna testing in the absence of symptoms or other evidence because the cost is so high. Also because in most genetic disorders, it is not necessary - either you have it or you don't, but with HH you can prevent/reverse secondary damage. She wrote me a letter that I can give to my family members - it states that I have been diagnosed and that my siblings and parents need to have dna testing done.
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