Postby Nikita » Tue Oct 22, 2013 1:24 am
Yeah, I didn't bring up hemochromatosis because I didn't test as a carrier for the C282Y. I am a carrier for the H63D chromosome, but that alone shouldn't be the cause. A little into that, the genetic testing only tests for the top three genetic mutations, and all are Caucasian. I am considered Caucasian, because my family is European, but we are Greek and Italian. The H63D is Mediterranean in origin (Ta Da!), but there are other genes that were not tested, that could be African in origin. My cousin had triple negative breast cancer, and that disproportionately affects African women, so I am comfortable thinking that there may be a genetic link there and am requesting testing for it. The problem is that all areas are not completely understood, so there aren't easy answers. Liver enzymes are increased mildly too. U/S and MRI do not indicate alcohol is a concern, I do work at a winery but I don't drink daily (WED takes care of that!). So that's the long story. I was kicked from the liver specialist to my family physician and now I am being punted to the Hematologist. I see her next week, but in the meantime, my doctor and I looked at all the data and decided to start a low iron diet to jump start a solution since donating wasn't possible and may not even be a good plan.
All of this is new research. No one quite knows about iron and WED, nor is there an exact label for what I have going on. There is apparent correlations, but that's about it.
Thank you for the links, it does help, especially to give to the doctor if it comes up.
I couldn't imagine what your grandmother went through! I am so thankful that we have the technology to prove what we are living with is real.
Just call me Iron Woman!