u/BothAppointment3284

Was on the lower dose around 6 months (1.25mg / half a pill) - then raised to 2.5g (whole pill) and my shedding just got dramatically worse. I know minoxidil can cause a dread shed but Derm said that doesn't usually happen when raising dose. Seems like derm was wrong. Even worse shed, with even shorter hairs coming out and also very sensitive / painful / itchy follicles. Think I'll go back down to lower dose again and maintain hormonal treatment and red light. Think it's aggravating the issue and shows no sign of stabilizing. But curious if this happened to others?

I've had many bouts of TE since I was 30 (now 56) but never as rapid as this one, with short hairs and long. I can only wonder if the iron infusion course - 5 weekly IV of Venofer - may have kicked my follicles into a new growth cycle (hopefully growth anyway) and caused a massive synchronized shed. The iron deficiency wasn't that extreme before the infusions - iron around 50, iron saturation 14.
The other thing about the infusion that is amazingly annoying is that 2 months after the infusion course, my iron and iron sat numbers, after doubling, went back to the same levels. WTF?!!!! Doctor hypothesizes this is either due to GI blood loss (no evidence of that but getting tests, colonoscopy endoscopy in the past year showed no signs of blood loss) or inflammation which apparently can sequester iron, which I do have e,g, Hashimoto's. But he has no real idea. (And he's a hematologist.) Anyone else had this happen / found a cause? btw ferritin before was 80 and after was 500, now 360.

I had low iron, iron saturation and slightly low ferritin. After 5 Venofer infusions, my iron & iron sat doubled, but then tanked back to the same starting values. Ferritin went up massively to 500+, now at 360. I am 2 months out from completing infusions. They basically did nothing. Where did the iron go? (I've had them twice before, and they worked and lasted several years. That was Injectafer.)

My hematologist has surprisingly few theories. I have several gastroenterologists and they're clueless too. Been checked several times for IBD etc. I do have some autoimmune diseases which could make my iron absorption poor (Hashimoto's, autoimmune gastritis) - but those would not affect an IV iron dose. Maybe I have functional anemia, where inflammation makes your body lock up your iron so your tissues can't use it (something to do with hepcidin) - if so, not sure what to do about that. Any ideas?