The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency. Professor Nordlander first recognized the association between iron deficiency and RLS, and reported that treatment of the iron deficiency markedly improved, if not eliminated, the RLS symptoms.
This hypothesis has led investigators to examine whether the brain could be deficient in iron in the face of otherwise normal serum iron measures.
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Skarlet
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Hi skarlet ,,all I can say to the iron theory is six months ago my iron was way down they found this out when I was going for a pre op (( which I haven't had as yet , soon though ) so I have been on iron since then my iron now is up again ,,,BUT in these last six months I have ( had more nights walking the floor than ever before ) up most nights so not to sure on that one ,it just seemed weird when my iron was down my legs were hardly playing up and when the iron is up ,,I'm up most nights ?
The article states: All studies to date support the concept of diminished brain iron in patients with RLS even when blood tests indicate that their iron stores are normal. Cerebrospinal fluid obtained by lumbar puncture has shown that the iron storage protein ferritin is low in RLS patients, despite these patients having normal serum levels of iron and ferritin.
So your iron blood level may not reflect your brain iron level
My "normal" blood tests show no anaemia but when tested for Ferratin, that was on the low side. I am having two Ferratin infusions and praying that it works.
Hi Mopsy. Yesterday I came across this February 11, 2016 article from uptodate.com. It's right on point with your dilemma with iron. Here's an excerpt:
"However the paradigm of oral iron supplementation using three tablets over the course of a day, every day, may be in flux as further data regarding absorption become available. Intriguing findings suggest that more frequent iron administration could cause a paradoxical decrease in iron absorption. In this study 54 women with depleted iron stores were given various doses of oral iron. Iron absorption was best when dosing was restricted to lower doses and less frequent administration (eg 40 to 80mg of iron no more than once a day. Higher or more frequent doses of iron raised circulating hepcidin levels and reduced subsequent fractional iron absorption."
That might be you Mopsy. Elevated hepcidin = worse RLS.
Contrary to Dr. B's protocol and Johns Hopkins, I've been telling people for YEARs not to take tons of iron for the sake of raising their iron stores. Elevated BODY stores of iron will do nothing for your RLS. Less is more with iron. For everyone, not just people with RLS. I see no benefit for anyone to have really high iron stores - meaning above 50. Maybe pro-basketball players or marathoners whose bodies are pushed to the limit nearly every day and the demand for iron is unbelievably great. But especially NOT for people with RLS. We want to be on the low side of normal in terms of iron stores...in my opinion. Then we want to take an oral iron supplement only when we have an attack. Which for many is every night. So be it. Take the most bioavailable iron you can get your hands on and take it before bed. If your iron stores aren't too high then your body will greedily suck it up as well as your brain and you will get some sleep. Then you MUST start finding alternatives to the iron. And if you're taking DAs or pain killers you must also actively seek alternative. You get a pass if you're just too old, too tired and too sick with other conditions to undertake that type of experimentation.
Sorry for the long reply but this IS a post about IRON so I'm not "hijacking" the topic. I'm right on point
And Skarlet do you take iron supplements for your RLS? Or anything else for that matter?
Hi, I take iron suppiments for anaemia but as a previous study has found, even if you treat anaemia, you may still not be able to treat the brain ferritin level.
Then you take a form that is most likely to cross the blood brain barrier. And you take it when you need it most only (at night) and on an empty stomach. By the dawn's early light that iron is gone from your bloodstream (or bound into serum ferritin) from where your brain will not get much if any. I take a form called ferrous bisglycinate. Lately I've been reading on how heme iron is better still. Most supplements are non-heme, including the bis-glycinate. As long as your doctor wants you to take iron why not go for the gold!!!
I've tried various forms to combate anaemia, RLS isn't treated, it's regarded as a symptom of anaemia and or vitamin B12 deficiency. I'm not sure if that is what happens elsewhere but that is the practice here.
Well figure out a way to get the iron across the blood brain barrier just for grins then. Go one step further, figure out why our brains aren't binding and storing some of that iron for future use as the non-rls brains do. I'm guessing it might be a lack of lactoferrin. Much luck in your medical studies Skarlet Xx
One night when you can't sleep click on my name here in blue. All my posts as well as my replies will come up. I have just one post as you do. Only my post is long and all about brain iron (including the brain iron research by Johns Hopkins) and there are 112 replies to that post. I guarantee you will be fast asleep long before you finish.
I am also taking ferrous fumate and spatone both combined with vitamin C as it helps the absorption of iron.
I think your dosage sounds quite adequate. It could just be as simple as you need vitamin C at the same time, take it with orange juice perhaps?
I find that being a vegetarian makes it very hard to keep my iron level normal. If you eat meat then I'd ask the dr if you could have trouble absorbing iron and it could be another underlying cause.
As long as you have the vitamin C at the exact same time of the iron then that will help. It's also a slow process to get your iron back to normal, some people respond better than others though. Just stick with it and if you find the tablets don't make any improvement after a month I would suggest going back and either changing to a liquid iron or having further tests, definitely inquire about vitamin B12 though and zink, I started taking suppiments and I feel amazing.
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