Restless Legs Syndrome (RLS) Discussion Board

In 2019, I had my ferritin level checked, and it was 64. So I started taking supplement iron. First it was the standard 65 tab, twice a day with C. After some reading, last year I changed to taking both pills at the same time, once a day with C, with no food two hours before and one hour after. (Although I often eat two Brazil nuts right after taking the pills so calm my stomach). My ferritin jumped to 190, %sat was 42. Continued with same regiment, checking iron every 4-6 months, with ferritin ranging from 175-219, and %sat from 32-46. And yes, I stopped taking the iron 48-72 hours before the blood test, which included 12 hours of fasting. Everything seemed be be going well. I will add the comment that I did this in conjunction with adjusting meds, so there was no clear moment when I could say the supplemental iron was making a dramatic difference, or not.

My most recent blood test on Monday, my Ferritin was 251, but my saturation was 55%. The sat is high per the recommendations of 45 max. My doctor, a GP that I am “educating” on RLS, did not seem to be concerned. Reading the literature, apparently the risk is hemochromatosis, which, I don’t know if I should be concerned or not, but still it would be nice to get my sat % down to normal. I should also note that in the last six months, I have increased my exercise levels, lost 20 pounds and am eating a much healthier diet to get cholesterol/triglycerides under control without medication. (Very successful at that). Not sure if this has any relationship to the iron, but thought it might.

So, my real question is- since my ferritin has responded nicely to 251, should I consider cutting back to one 65 iron pill daily? As an scientist/engineer, this seems like a sensible approach. Even if my ferritin drops a bit, I expect it will still be well above the recommended minimum levels.If I do so, I can have my blood tested in another 3 months and see how the numbers do.

Does anyone have experience with this? Is there something magical (or clinically studied) about 2x65 iron? Is 45% max a “hard stop” or is 55% not a big deal?

Thanks for your advice!

Bill

I was put on oral iron when I was first diagnosed. I think that I was taking it as much as 3x/day. I slowly dropped back to 1 tablet/day. Eventually my ferritin got as high as 650. It isn't supposed to get that high with oral iron, but it did. At that point, my doctor asked me to stop. I asked about hemachromatosis or organ damage and she too was not concerned. Apparently you need to get up near 1000.

My ferritin stayed at that level for a year or two and then slowly dropped back to about 250. I changed doctors and my new one seemed slightly concerned, so she ordered a test to look for the hemachromatosis gene. When that came back negative, nothing more was said.

Unfortunately, I did not benefit from the elevated ferritin. My RLS is still very severe if I don't take all of my meds on schedule.

Bill,
It is unlikely that the ferritin of 251 was entirely due to the oral iron. Oral iron absorption from the gut is limited to about 100 by a hormone called hepcidin. Likely the Ferritin of 251 was a combination of the iron content and the artifactual elevation of ferritin due to some unrecognized inflammation. Unless you are having a problem with it, I'd continue with the iron as you are doing.

Holland- So I shouldn’t worry about the 55% saturation? Both you and Steve seem to focus more on the ferritin than the sat%. Bill

Yes, there are lots of other things more important to worry about.

THANKS.

Bill

I'm not a doctor and I don't really know much about the significance of the 55% saturation.

The real test should be how you feel, and not the numbers. If your symptoms get worse on one pill, go back to two pills. It might take 3-4 weeks for the effects of dropping to one pill to be felt, and I always had forgotten by then that I had dropped the iron, so it always took me another week or two before I figured it out, then another 3-4 weeks on 2 pills before the symptoms backed off again.

If you don't want to experiment on yourself that way (possibly a month or two of worsened symptoms), then stay at two pills.

My most recent iron checks show Ferritin at 135 and %SAT at 41. My GP keeps ordering an iron profile that shows iron at 122 ug/dL, binding of 296 and UIBC of 174 mg/dL.

I took oral iron religiously for over a year at the recommended levels and with C. I hated it. Like giving a kid caster oil. It brought my iron up but did not bring my symptoms down. When I quit, I felt better but it may have just been the natural cycle of my RLS.

Don't want to highjack this thread but what does all this mean in the world of RLS. My doctors don't know.

Not sure you ought to worry about the "high" % sat. Normal is 25-35%, but Dr B approved my iron infusion when I was at 41%, and he also said, when reviewing my analytical work last May when my %sat was 52%, that he would prescribe me another infusion, but half a dose, were I to travel to CA.