I'm wondering what can cause iron to drop quickly after infusions...?
Blood loss has been ruled out.
I have P. A. , Celiac Disease and chronic iron deficiency.
I was severely anemic for years and had over a dozen infusions stretched out over 13mos in 2016-17. Those only got my hemoglobin up to 10. Iron wasn't checked monthly during that time, I just remember it remained low.
I found another hematologist who was able to get my hemoglobin and iron up through diagnosis & treatment of my other conditions (previous Dr sd it wasn't his job to figure out why I was anemic. His job was to get my numbers up 😒).
Fast forward to the present & I feel so much better than I did but I still feel pretty bad most of the time. I know that sounds crazy but I could barely walk or think clearly before. I couldn't text a 3 line msg to a friend - an hour in & I'd give up & cry my eyes out because the words didn't make sense. Nothing made sense. Now at least I can think most of the time & get around some without feeling like a zombie!
I've gained 90lbs (since March) because I'm absorbing nutrients and fat on the gluten free diet but I'm so inactive (weakness,fatigue) I'm not burning anything off.
I'm now getting 2 Fereheme "injections", a week apart (through 15min I.V. drip) every three months. Not sure why they're called injections but 15 mins beats 3 hours-that's how long the other infusions took.
During the time after the "injections", my iron slowly rises to optimal level. Last time my ferritin went up to 116 which was great! I've lived half of my life w ferritin below 10 & many yrs feeling like death as a result.
I'm sorry this is so long but I'm trying to figure out why, after my iron goes up, it bottoms out so quickly (pretty sure Fereheme is supposed to work that way. It makes iron rise over a 6-8wk period) but it's supposed to stay up. My ferritin dropped from 116 to 23 in less than a week and iron dropped rt along with it. This is the 3rd time in a row it happened and new hematologist says he's never had it happen before, has no idea why it would happen. He sd it's common for it to drop but never that fast... So we'll just keep doing infusions as needed.
When I told him I think that's what causes my fatigue he signed me up for a sleep study.
I hope this makes sense to someone who can help me because it makes no sense to me. What could cause it?
Thanks in advance to anyone brave enough to read this and try to help!
BTW I'm in the US