Does anyone else have ferroportin disease, AKA hemochromatosis Type 4?
Ferroportin disease is considered rare, but I think it may be more common than that. When you have hemochromatosis symptoms ( high ferritin, liver disease, heart arrhythmia, joint pain, fatigue, thyroid disease, etc) they usually check for the 3 genes that hit 95% of people with hemochromatosis. Hemochromatosis 4 is on a gene that they usually don’t test. Mine is SLC40A1. Nebula Genomics picked it up for me. Are there others out there? I feel I am alone. I worry because the only conditions of H4 that I don’t have yet are diabetes and dementia - and I want to do all I can to stave them off.
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You're not alone. I know it feels like it at times, but HH, as I have come to find out, isn't common. It's rarely diagnosed, but Mayo is the best place to be.
My issue is that I didn't realize what it does to the body and mind. The brain fog, joint pain, and no one experiences the same symptoms.
Glad you came on here, it's nice to have other people who can relate.