I know lots of people on here have low ferritin and take iron to help get these levels up and help their restless leg symptoms.
I'm curious - of these people has anyone been able to identify a root cause for the low ferritin and been able to do something about it?
I think that is the six million dollar question; the one that preoccupies RLS experts at the moment. If you go onto the Johns Hopkins University hospital website and access the RLS section you will find some short videos which consider this problem. I'm afraid I can't recall the details of the propositions advanced. What I do remember is that the iron levels of RLS sufferers tend to reduce spontaneously where those of the general populace do not and the experts are simply not sure why this is.
Thanks! This is helpful. Here is the link to the videos if anyone is interested.
Several autoimmune diseases, especially celiac, hampers iron absorption as well as B12 and D
I am one who had my ferritin level greatly increased by iron infusions, a series of 5 in less than 2 weeks. RLS completely stopped. Having said that I had gastric bypass surgery 10 years ago and my body simply could not store the iron it needed.
Is it the answer for all? Sadly no. But could it be for some? Absolutely! Worth a simple blood test!
AnnejenDr is there anything else you could add regarding the gastric bypass...symptoms before bypass...cause or reason the bypass was chosen, heriditary links etc. I ask because someone else talked about curing their leaky gut...as their cure. Guts...immune system...nerve conductivity, ferritin levels ( bodies electrical system) dopamine levels.......what's the common denominator?
I had no symptoms of rls prior to my gastric bypass surgery and actually not until 7 years out from surgery. I also have no hereditary links to rls.
The doctors believe it is most likely due to my feratin deficiency.
Also oral iron supplements and even the patches were not sufficient to increase these levels the the iron infusions. 5 in a matter of 2 weeks.
I have been trying to get my Ferriten level up but its only moved slightly in many months. I had a change of GPs a few months ago and my new one took the unfortunate opposite position that perhaps I am taking lots of iron but losing lots in some direction. Now I am testing for the possibility of some internal bleeding such as cancer or something else. Apparently there are often no external symptoms until very late.
Of course I am confident that I don't have anything so nasty. It would never happen to me you know. Nevertheless I will be happier when I hear that is all a false alarm and the problem is to do with iron absorption.
However I suggest that all of our community who find their ferriten is not increasing while they are taking extra iron talk to their doctor about this possibility. A bit of surgery and it might cure the RLS as a by-product of curing something of much shorter term significance.
Incidentally there is some advice in this forum even about the details of how we take our extra iron.
Iron biglycinate seems to be the best supplement.
It is apparently best to take your normal dose of iron every second night as this avoids some form of natural protection against overdoses. These protections interfere with the absorption of a second dose of iron within 24 hours of the last dose.
Take Vitamin C with the iron dose. My dietician stressed that Fe and vitamin C should be well mixed together before you swallow.
For example if the vitamin C is in chewable tablet form.
Take say 3 x 1500mg tablets in your mouth and chew it up. Take the Fe tablet in your mouth then swallow the lot. She said that this sounds like a lot of work just to take some vitamin C but she reckons it gives the body the best chance of keeping the iron. It hasn't shown any startling improvement in my case but that might not be relevant.
Good Luck
Graham
I had severe RLS - from out of nowhere! Sleep issues started 6 months or so earlier, and a head injury (probable concussion) occurred 6 months before that. Just prior to the RLS I developed severe leg cramps. I of course would try anything - RLS was 24/7 and also in my arms. I read somewhere that Blackstrap Molasses might help - and you know it did, slightly. I got the Fe bisglycinate and never looked back - less than a month all symptoms resolved - except insomnia and disrupted sleep. My Ferritin level was 49 and with 3 months supplementation raised it to 105. I haven't taken in in many months, but I am ready to at any time RLS starts up on occasion. What caused the low iron? Maybe that head injury - brain inflammation - who knows. The Johns Hopkins website was a huge help to me. I might be on Requip today if I haden't discovered it.
I so wish just taking iron would help us all, unfortunately it doesnt. 
It seems it can help mostly people who have low ferritin level as a underlying condition.
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