Since I can't get my ferritin measured whenever I want, I can't say that my improvements are related to a certain ferritin number. But I can say that if I stop taking oral iron, my symptoms will get much worse, and will require more opioid and other medications; if I re-start oral iron, my symptoms will get much better, and I will reduce my medications. I have tried this a number of times with consistent results. The lag is 2-4 weeks before I notice a change, either for better or for worse.thesleepless1 wrote:A question for the frequent readers of this board, do you remember anyone saying that their RLS improved once they got their ferritin significantly higher than the 100 range (200+)? I've been taking iron for almost 2 years now in the form of either dessicated liver or supplemental iron, and over those 2 years have been able to raise my iron from 80 to 95 (by now it should be over 100 since the last test), and I have noticed absolutely no improvement whatsoever with my PLMD. So I'm now wondering if there's still any hope left for me, if I should keep up the iron.
You have a lot of hope for improvement, but it does not lie with oral iron, it lies with IV iron. Your ferritin change of 80 to 95 is not very much, and with 2 years of trying to raise your ferritin by the oral route and still being under 100, you are a prime candidate for IV iron, as Holland has mentioned, and that is what I would pursue if I was in your shoes. Nevertheless, do not stop oral iron, because then you might get worse.