u/qwertyuiopq1qq

My ferritin was more than 100 and my saturation 55%. So I went to get a phlebotomy done, and I asked the nurse how much blood was being removed she said 1 unit and clarified that one unit is 500mL. She said that anytime someone gets a phleb, it is always just 500mL removed.

My question is, how do patients know if that is sufficient unit or mL’s removed based on what our pre-phleb levels are?

Shouldn’t there be some custom dosing of how much blood gets removed based on our levels?

Because if so… my hemotologist’s office has Not been doing that. …Has anyone get custom blood removal dosing… or like, … a post-phleb blood check of the ferritin and saturation to see if the phleb has removed enough back to normal range?

I think it seems that the few times I have recieved phlebs, some I don’t know how much my levels exactly lowered post-phleb, they just end up only removing barely enough to put me in… borderline normal levels.

Do you experience both ankle and knee pain?
Like joint wise or how so?
And have you had any treatment or surgeries for it - and if so has it helped?
Thanks in advance

For women who have hemochromatosis, which sort of birth control are you on?

I know we do still need to have periods every month, to help decrease our iron.

It’s complicated for me because I also have (treated) endometriosis but I was told to be on birth control to prevent any new endometrial tissue from developing. I may just get off birth control to allow my periods to resume and be back to normal flow instead of light. My husband also had a vasectomy, so it’s not so much now as preventing pregnancy, the matter for me is more so to prevent endo tissue from developing while treating my hemochromatosis and still get periods.

So in terms of hemochromatosis and birth control, just wondering what women with excess iron have been doing as birth control options? IUD, depo shot, combo pills, hormonal pills, etc? Or what sort of oral bc pills have worked for you and also allowed you to have monthly periods?