Hi all! As the tag states, I have just recently learned from my PCP that I have hemochromatosis. Per my age (22F), I have been lead to believe I specifically fall into the category of juvenile hemochromatosis.
We sort of just stumbled across my diagnosis by chance within the last couple of months. Early March we decided to do a standard blood panel. My Iron panel came back as follows:
Iron: 251 mcg/dL
TSAT: 76%
Transferrin & TIBC were in the normal ranges at 223mg/dL and 332mcg/dL respectively.
Nothing else would have indicated my high iron levels, so my PCP asked if I had ever been tested for hereditary hemochromatosis. Since I hadn’t, we proceeded with another test. (Another concern for her was that in March of 2025, my iron was already high at 237, and had only increased.) Not sure if I’m wording this correctly, but the homozygous gene came back as detected, indicating a diagnosis of HFE-related hereditary hemochromatosis.
I’m now being referred to a hematologist for further evaluation and treatment. With this discovery, it explains a lot of symptoms I wasn’t able to find a reason for or had written off. Extreme fatigue is a big one for me, but it had been dismissed by my PCP due to my depression and anxiety. Another was joint aches and pains, but I assumed that was due to spending most of my youth as a dancer.
Really, I just came here to maybe get some words of wisdom or advice from the community. If anyone has had a situation similar to mine, I’d love hear about your experience. I’m a little nervous going into the next phase of this process, so I’d like to get any information I can. TIA!!