My dad got diagnosed with hemochromatosis so the whole family has been tested and I got some weird results that are so far confusing the drs:
Ferritin 50 (5-90)
Serum Iron 34.5 (10-30)
TS 65% (20-50)
I then had a HFE test to see if I had the haemochromatosis genes and I got told I was definitely just a carrier and don't have the disease.
I'm just really confused by this as my initial iron blood work looks odd especially as I am a woman in my 20's (you expect young women to have low iron/be slightly anemic as we loose blood every month).
If I don't have haemochromatosis then why do I have high iron? Can anyone give me any advice as to what I should be asking the Dr at my next appointment?
Thanks
Written by
Ctb567
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For a confirmed Haemochromotosis diagnosis you have to have two altered (mutated) genes from both parents (so no normal haemochromatosis gene.)
If you inherit just 1 abnormal gene, you are considered to be a carrier. ie you can not develop haemochromotosis but can pass the mutation onto your children. But, again they wouldn't necessary develop Haemochromotosis without also the other inherited abnormal gene from parent two.
I agree your elevated T/S% & serum iron levels are unusual without elevated ferritin but iron can behave in mysterious ways. If you are generally well, I would just ask for another full iron panel in one years time.
Goid advice there from radd. Id just add if you donate blood every 3 months, that should keep iron in range, don't mention haemochromatosis when you go, there's no need to anyway. All the best to you. X
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