Restless Legs Syndrome
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Iron Deficiency Causing RLS

About 18 months ago I began donating 2 pints of red blood cells every 6 months. About the same time, I started experiencing RLS. Today I learned that I have a major iron deficiency, no doubt because of the blood donations, which is likely the underlying cause of my RLS. Specifically, they tested my Ferritin level, which was dramatically low. My neurologist has ordered me to start taking iron pills 3 times per day and will have my iron level retested in about a month. I was hoping they would tell me to have filet mignon each day, but pills was what they suggested.

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I had ferritin of 1300. Have started phlebotomy and now down to 975. My decision time will be when to stop. They will want me to go to 50 or lower- I would prefer to stop at 100.

That will all be a year away , likely , but has anyone any thoughts on that scenario?

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I also have blood removed by phlebotomy (called venesection up here in the north). Since the hospital seems to know nothing about the effect of low iron levels on RLS my GP has suggested I manage my iron levels myself by donating blood through the Blood Donor Service and getting my ferritin level tested once a year at the surgery. It sounds like a good approach to me. I have to get the blood people's agreement as well as the GP's agreement to do this because blood donation in the UK is supposed to be purely altruistic.

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Madlegs, as having a very high ferritin level has made no difference to your RLS, that is not your reason for having RLS. So, going lower as in 50 doesnt seem a problem going to that number, is there a reason you would prefer it to be 100..?

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Thanks Elisse, that's a good point about it not affecting the Rls! - it sometimes needs someone outside to point to the obvious !

I have no particular views on the end level- except I saw somewhere that if it got too low then one could become "iron avid" - which apparently has its own problems.

I have a while to figure it out - but you have eliminated one train of thought!☺

Thanks again.

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