Iron overload and hemochromatosis

Kind of confirms $$$$$$$$$$$

Anyone have ferroportin disease, aka hemachromatosis type 4? I am getting no help from my doctors. My genetic test shows a mutation on SLC40A1 but it wasn’t from my doctor’s approved lab. He won’t order the test from his lab because he says you can’t do anything about it anyway. I have given up but just started monitoring my groups again so I thought I would give it a shot. My liver enzymes have been getting better but the doc doesn’t monitor ferritin so who knows? When I first wondered about this my ferritin was high. My doc is also retiring but no replacement available.

I have hemachromotosis. Son has hemachromotosis. Liver biopsy says NO he does not. His is not genetic? But he doesnt have it anyway.. Please get 2nd opinion or even 3rd... my ferrentin is normal...His was so high...now that he is healthier, it is normal
Levels. . If enzymes, albumin normal get another opinion.. slightly high? Super high, request Biopsy.. most of us have fatty liver. Non alcoholic. Hard to find liver docs.. good luck.. i reduced a lot of iron foods in his diet. It helped...
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There is little discussing about iron overload and it is not an uncommon hereditary condition. I was diagnosed in late 70’s which is unusual. If there are others on the board with Hemochromatosis I’d like to share information.

Hi I was diagnosed with a form of hemochromatosis in the last 6 months. It started with me getting little bumps under my skin on my ankles, the bumps would turn red and start hurting. Then a few days later I would get the same thing on the other ankle in the same location. Went to dermatologist and they had no idea what it was, they did biopsy’s and could not determine anything.
They gave me steroid injection and that helped the pain went away and the bumps turned in to discolored skin. After a few weeks they came back again, and I started seeing other doctors, no one could find anything. I finally seen a rheumatologist and she found I had high iron, my ferritin level was 860. She sent me to a hematologist and they are drawing blood weekly to lower my iron. I have had to have a couple of steroid shots to keep the skin problem under control. The doctors don’t seem to know if the high iron is what is causing the skin issue. Has any one else had bumps under there skin that hurt from the high iron?

Good they discovered your iron overload. I started with numbers of 360 and am working at keeping 100 or lower. Have you had any work with a dietician? There are things to avoid. Hope your numbers are lowering.

I was told there was no dietary restrictions

I had the same instructions but if you check things like read meat, liquor, sourdough bread and many other vitamin C foods increase iron absorption. I try to follow the diet. I do know oysters are a definite no if iron overload.

I have a phlebotomy every month will be a year in April. My numbers for ferritin and Hgb keep going down. This month my saturation level 61.3 was 38.5 and my iron is 165 was 104. How concerned should I be. All other # look great.

I have a rare genetic blood disorder called x linked sideroblastic anemia. My body does not process iron, and instead stores it in my cells. My last ferritin was 621. Because my hemoglobin is so low I usually have to get blood transfusions 2 or 3 times a year.