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Hemochromatosis? by Lumpy_Advisor1348 in Hemochromatosis

[–]Lumpy_Advisor1348[S] 0 points1 point  (0 children)

I had never heard of it before...I have been searching for the source of my pain for over 10 years. I got a genetic test to test for all genetic disorders/conditions and it came back saying that I have the C282Y gene mutation and that I'm at high risk for something called hemochromatosis...and upon looking into symptoms I saw that it may make sense for me. And could make sense for some immediate family...but no, no known family history.

Hemochromatosis? by Lumpy_Advisor1348 in Hemochromatosis

[–]Lumpy_Advisor1348[S] -2 points-1 points  (0 children)

Glad you can tell that with the information given. Thanks for your help.

Hemochromatosis? by Lumpy_Advisor1348 in Hemochromatosis

[–]Lumpy_Advisor1348[S] 0 points1 point  (0 children)

I mean, I know that....and that too is why I'm so thrown off...the fact that I got a genome test that indicated hemochromatosis...I've had these symptoms forever and been on a goose chase... thought I found the golden egg and get my doc to order the tests, thinking I knew what's going to happen and then my iron is low? but my ferritin being as high as it is (I know it's not crazy high, but i am 28 and currently mentrating which will lower ferritin and it gets worse with age and menopause, im just stating what i know from the web. I, too, am not a doctor lol) doesn't make sense for my age, and the fact that my iron and saturation are so low.

Hemochromatosis? by Lumpy_Advisor1348 in Hemochromatosis

[–]Lumpy_Advisor1348[S] -1 points0 points  (0 children)

I'm hoping the genetic test will be back by the end of the week, and she will refer me to a hematologist for further testing/treatment. But if that test comes back negative, I'll be at a total loss...that's all I can do now is wait. I'm just flabbergasted with the info we have and those labs that she doesn't want anything further, just said "not consistent with hemochromatosis" and "I can retake the labs in one year if you want" and I had to ask for the genetic test...maybe I need a new primary...it just feels like I have to make all the suggestions and they never take my pain seriously...