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Does anyone else have ferroportin disease, AKA hemochromatosis Type 4?

Posted by mayo99824 @mayo99824, Jun 10, 2023

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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Janell, Volunteer Mentor | @jlharsh | Jan 14 8:08pm
In reply to @mayo99824 "I tried the link to the clinic but the link was not working. I tried emailing..." + (show)
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I tried the link to the clinic but the link was not working. I tried emailing directly to Dr. Palmer and we will see if that works. Usually those emails go to staff and that is okay. I need to know if he works with hemo4 and they can tell me that. Many doctors do not. Thanks for the lead.

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@mayo99824 I will remain hopeful with you, and looking forward to what you learn.

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nodakswede | @nodakswede | 3 days ago

Hi - I have hemochromatosis symptoms as well and have already been tested for the common genes associated with it which I don't have. I had not heard of type 4 before today and have been looking at various genetic testing sites to find one to test for the SLC40A1. May I ask which version of the Nebula test you had done that provided you with those results? Thank you

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mayo99824 | @mayo99824 | 3 days ago

Emails just say Nebula Genomics. It was a few years ago. My son ordered it for me as a Christmas gift.

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