I have recently been diagnosed with homog. H63D mutation hemochromatosis. I started with my regular MD in Sept with high iron (160) and a low ferritin of 6. He rechecked levels and my iron was 55, %iron sat 14 and ferritn 7. He put me on iron supplement x 2 mos and I had blood rechecked. Fe was 189, %sat 66, and ferritin 11. MD told me my anemia was cured, but my Fe was high so stop taking the FE and get rechecked in 2 mos. Well, I decided to go to a hematologist who could not explain the high iron and sats and low ferritin and checked me for a # of things including hemochromotosis. My Fe came back132, sat at 48% and transferrin 196 and Ferritin 18; as well as the positive DNA tests. She said I needed to get my sats down and to start phelbotomy..they took 1 pt and I have to go back next week for another and then blood work one month. I'm so confused.....everything I'm reading says with my ferritin so low, I could be fe deficient or iron avid. I'm thinking I shouldn't be getting more blood taking. Any ideas? Should I get a second opinion before I let them keep taking blood???? HELP Please.
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