C282y/H63d Experience After First Blood Donation — feedback please?
Longtime lurker, first time poster!
I'm C282y/H63d Compound Heterozygous. 36 year old female. My iron at my last blood test in August was 235 (iron) 81 (saturation) 290 (iron binding capacity) and 37 (ferritin). So obviously, saturation and iron levels through the roof.
My doctor said let's try a blood donation and come back in 3 weeks to test your levels. I had my blood donation on Thursday, and everything went well. Last night, my heart started beating super fast and I thought I was going to pass out. I felt nauseous and sick. I feel a lot better today, but it scared me.
My question is: has anyone with a similar combo and levels experience this? Did phlebotomy work? Did it make your ferritin too low? For context, my red blood counts have been high — and that's what kicked this whole thing off to begin with. HGB, HCT, and MVP all high. At my August visit, HCT and MVP still high. I haven't gotten my post-donation blood test yet, but now I'm wondering if I did the wrong thing given how I feel. Maybe I need to give it a few more days? Any personal experiences or advice appreciated!
Posted Sep 22, 2025, 12:12 AM UTC