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Robine--Welcome to the boards! My DH has HH and double gene mutation. We were told that both of our children are carriers. When my son was tested his Internist said he did not have HH, but would have to be monitored every 5 years for this disorder. So, I would think that obviously you can begin to overload without 2 genes present according to what we were told.

Also, according to your labs they are consistent with iron overload, except for the ferritin, which throws me. A low transferrin can also be found in other conditions such as chronic disease, but I don't know much about that. When a serum ferritin and T-Sat % are both elevated along with normal Hgb (I think ferritin has to be over 200 for females) overload is likely, and can be treated. Perhaps this could be a beginning stage of iron overload. Your ferritin is low end normal.

In Iron overload the opposite of iron deficiency occurs in labs. With excessive iron TIBC tends to decrease, serum iron is high and these together result in a high T-Sat %. I still don't get the 28 ferritin iron store in containment. Perhaps this is from an overlapping symptom of Hashi's or something else that you may have.

What does your Hematologist think? I am very curious. I don't think that your iron is high enough to worry. My Hematologist told us that over 10 and under 1000 is the rule. Everyone has a different opinion. My husband is also treated through a GI doc for phlebotomy, organ checks and labs. His ferritin was almost 3,000 and is now 27 and we are told this is without damage. The GI doc said he didn't even need a liver biopsy because the MRI, CT and US are normal and all organs feel normal when palpitated. I'm sorry that you are dealing with so much. Best of luck to you. Keep us posted.





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