The link between Iron and RLS

[Daragh]

There are several chemicals that are thought to be associated with the development and symptoms of RLS. One is of course dopamine, a chemical crucial for movement, thought process as well as motivation. Drugs which work on the dopamine system, such as pramipexole, ropinirole and rotigotine, are mainstays for the treatment of RLS.

Another chemical that seems to be very important for the development of RLS is iron. In the brain cell systems, iron helps with the actions of dopamine and is known as a co-factor. In the evening and night, when the symptoms of RLS are most pronounced, both iron and dopamine levels show a “dip”, known as the circadian variation. We know that RLS can also develop during pregnancy, typically in the last three months, a time when iron levels can be low. RLS is also associated with people who develop iron deficiency anaemia, sometimes due to heavy menstrual periods for instance.

It is for this reason that measurement of iron in blood tests is important for RLS and should be done in every case of RLS. An association between RLS and iron deficiency in the blood has been long recognised. In fact, it was back in 1950 when Karl Ekbom noted that about 25% of RLS patients had an iron deficiency. Studies have also shown that abnormalities of brain iron storage and transport are strongly associated with RLS.

But the simple measurement of iron in blood will not suffice. In the clinic, measurement of a protein called ferritin has been used to assess iron status in RLS patients. Ferritin measurement provides a useful measure of iron storage, as iron binds to this protein. Low ferritin values indicate low iron storage in the body and brain, and decreased availability of iron in the brain of RLS patients. Measurement of ferritin levels is more accurate than measurement of iron in the blood as iron levels can be variable and fluctuate. Two independent studies reported that while blood iron values in patients with RLS compared to healthy controls were normal, ferritin levels were reduced in the RLS patients.

Iron levels may be normal even if you have a deficiency of iron and iron levels in the blood can be affected by diet, stress as well as the pattern of sleep.

So what does all of this mean for all of those who suffer from RLS? It means that you must have your ferritin level in the blood checked at regular intervals. What is considered a ‘normal value’ of ferritin level varies from laboratory to laboratory and so normal levels will be defined by your local laboratory range. If the ferritin level is low or at the lower range of this normal value, it is reasonable to have a trial of treatment with oral iron tablets and recheck the ferritin levels to make sure this has normalised.

Please be mindful however that too much iron supplementation is not good and the ferritin levels also need to be monitored to ensure that iron replacement is not overdone. The replacement of iron may, in some cases, treat the symptoms of RLS very effectively.

rls-uk.org/faqs

[troopdad]

Thanks but I am not a doc/I take two Ropinrole and two Arthritis strength Tylenol. Upon the first surge I take the meds if I drop off to sleep that breaks the cycle.

The weather in t e South USA has been cold and rainy giving rise toRLS.

regularly..I also have a TEMS machine that helps/set on 25 and run about 7-9 minutes.I also have a super vibrator and run it over my legs..Good Luck/Try the Lidcaine patch amd roller/roll lightly/

Troopdad

[1234kids in reply to troopdad]

I live in USA mid Atlantic also and we have had a lot of rain. Is it true rain makes RLS worse??

[Patatie50]

I have a question: I have RLS plus a host of other rather serious health issues. First and foremost is that I take Warfarin for a previous stroke due to clotting issues. My former Internist/Rheumatologist told me I must take Coumadin (Warfarin) for the rest of my life. In the past, when I was very young, I had problems with anemia. I also had iron deficency, many allergies, etc. It was suspected around my mid-forties that I had connective tissue disease and was treated for it. There was nothing conclusive but the treatment worked. I take an ACE inhibitor for that, Procardia for Raynaud's Phenom. and Simvistatin for high cholestrol. I have severe restless leg problems and have severe leg cramping almost every night. The only thing that seems to work is powered Magnesium Oxide (less than a 1/4 tsp. in glass of cold water; sipped slowly. I have read that Magnesium deficiency also plays a role in RLS with cramping. Do you have any info or research that confirms this? Thanks.

[lahita]

I've had RLS and PLM for over 50 years. I started taking Iron a few months ago for a different reason and there has been no change in my RLS, so I don't think that it is a good cure. I think people just have to try different things till they find what works for them. A few hours ago my pain was a 9. Now after some Rum, it's around a 2. I hope everyone finds something that helps them most of the time.

[1234kids in reply to lahita]

Hi. What is plm??

[Kaarina Administrator in reply to 1234kids]

PLM is Periodic Leg Movement. rls-uk.org/periodic-leg-mov...

Hope this helps.

[Eryl]

The fact that only about 25% of RLS patients had an iron deficiency in Ekbom's study make me think that low iron is not a cause of RLS. What about the ones with high iron problems? Do they not have RLS? My suggestion would be that RLS and low iron are both symptoms of the real cause.

I have eliminated my rls with a low inflammatory diet and supplementing vitamin b12, omega 3 oils and iodine (both essential for myelin production)

The diet affects the balance of the gut microbiome, and affects how iron is taken up, so a bad diet can cause rls and low iron.

[gfischer4 in reply to Eryl]

Greetings.. were you on a med too, as you were going with diet(whats the make up of low inflammatory diet), B12,omega 3oils, and Iodine.

I am having some early evening improvements with B12. 2000 mcg a day,and Iron sulphate 65 mcg.

If you were on meds and went on the above, how did you get off the meds?

I appreciate your input.

Gene/Wisc.

[Eryl in reply to gfischer4]

No, the only medication I take is for hypertension which I probably could have avoided if I'd known about the harmful effects of sugar earlier. Unfortunately, the metabolism of fructose was only explained in 2010 which was after I was diagnosed and is so recent that it hasn't got into the medical text books yet. Look for 'anti inflammatory diet' on the internet.

If you want to learn about sugar look on youtube for Robert Lustig, Garry Fettke or Georgia Ede.

[gfischer4 in reply to Eryl]

Hello Thank you for quick answer. Are you totally free of rls. Please describe symptoms you had.. I get twitches..I am on .2 of requip. My iron was on low side..

I really want this to go away..

Thank you,

Gene

[Eryl in reply to gfischer4]

Yes, completely free except for when I let the diet slip. As an added bonus, My breathing has improved (probably the reduced inflammation opening up the bronchi) and I sleep better than I used to.

[Need-Sleep in reply to Eryl]

How much iodine do you take, is there a certain brand?

[Eryl in reply to Need-Sleep]

I take Holland&Barrett sea kelp tablets 150 microgram once a week, but I tried making laverbread the other day and although I only had porridge oats instead of oatmeal it didn't taste too bad.

[Lambretta175 in reply to Eryl]

Being a fellow rls sufferer and member of this forum,I asked for a ferreitn test and low and behold they found my iron was 950!I was expecting a low reading.Been for scan and have fatty liver.Awaiting reply from doctor this week as to what my next step is.

[Eryl in reply to Lambretta175]

Your next step is to avoid sugar, alcohol and other high carb foods like fruit juice, bread, cakes and biscuits, and if you do that rigorously you'll practically cure your fatty liver and probably reduce if not eliminate your rls.

[TheThirdDoctor in reply to Eryl]

I am wondering if RLS is a disease or a symptom of several different possible conditions and that each person presenting with RLS should be tested for all these conditions before even considering treatment.

[Eryl in reply to TheThirdDoctor]

As the name says it's a syndrome, not a disease, most often brought about by inflammation of the nerves which causes them to be more sensitive and to give false sensations and false triggeirng. Find the cause of that inflammation and you've usually cured the syndrome. In most cares the cause is high blood sugar and the resulting high insulin levels, or oxidative stress from PUFAS (refined grain oils).

[TheThirdDoctor in reply to Eryl]

That’s interesting. Routine medicals carried out as a condition of our employment have been flagging up evidence of some kind of inflammation in my blood work for years. Nobody has ever investigated it and the cause has never been explained, although one doctor wondered out loud about bilharzia, although I would be skeptical about that as I only once swam in open water in Africa and that was in a free flowing river with a rocky bed, so no snails.

[PolishCanary in reply to Eryl]

And yet, the newer name for RLS is WED: Willis - Ekbom DISEASE. I think it's splitting hairs to argue whether a syndrome vs a disease. differencebetween.com/diffe...

The symptoms suck either way!

pubmed.ncbi.nlm.nih.gov/296...

[Bftalbert in reply to TheThirdDoctor]

ADHD is a commonality

[gfischer4]

Hello what were you symptoms?

[RoadRunner44]

Hello, I'm new to this site and still coming to terms with restless leg syndrome. I have already acquired a lot of helpful information, but I would like to express my thanks after reading this very useful article on iron and ferritin. The more information we have regarding our health problems the better. I believe a more informed person can be in more control of their lives. Thanks again. Chrys

[robert1957]

Why don’t you read what Anthony William says about RLS I did and found it very helpful

[Josana13 in reply to robert1957]

Hello, How do I find Anthony William. I am also new to this site. Thank you

[robert1957 in reply to Josana13]

If you have internet type in your ailment and then medical medium it may help you understand what’s going on you don’t need to buy his books most of his information is free on the internet good luck.

[seasidexyz]

Thank you for this clear article. I have had RLS for 30 years and recently was suffering every evening. I took a supplement available in the UK called Floradix containing iron and B vitamins and have been free of RLS since beginning to take it. Will be interesting to see what happens when the bottle is finished.

[Wantnewlegs in reply to seasidexyz]

Hi seasidexyz, how is your rls now? Have you finished taking the Floradix? Were/are you on any medication for rls?

[JOSANA in reply to seasidexyz]

I live in the United States. Where can I purchase Floradix?

[seasidexyz in reply to JOSANA]

Hello Josana - I am in the UK so don't know where you can buy Floradix in the US. Perhaps try Amazon. I have included a link fro the Floradix website so you can see what it contains. It is a liquid "tonic" containing iron and various vitamins and I imagine there are similar products on sale in the US. It seemed to help me and I hope you find something to help you. floradix.co.uk/product/flor...

[HilsK]

Thanks Daragh ... I haverecently found out that my blood ferritin levels have been low even for someone without RLS. I have am in a mess because of RLS/severe augmentation after 22 yrs on NA.. My Dr simply wouldnt take my word for this and neurologist doesn't even know. SO grateful for your post and others like it which validate in no uncertain terms what I have been saying. This HAS to change.

[Hidden]

That was really informative. Thanks Daragh. I really need to learn all of this. So I just wanted to say thank you for sharing this here. I really appreciate the fact you did.

I just need the knowledge to lodge in my brain properly!!!

[Sher78]

Just to add my little bit on this thread. I have SLE, APS (for which I am lifelong warfarin), hEDS, MCTD, Raynaud's & Sjogren's (to name but a few). I also have RLS. Over the years I have tried many different things for my RLS (apart from medication) such as elimination diets etc, lots of exercise/no exercise, supplements, tonic water, massage etc and nothing helped. I can't retain iron very well (due to severe bowel surgery years ago) and although I don't often get anaemic (thankfully, because when I do, I do it in style!) and my iron is always low. Usually, I get put on Ferrous Sulphate which does bring my iron up a little but has never made a difference to anything else (still feel like an exhausted pigeon & still have the restless legs). Late last year, I decided it was time to try and sort out the RLS as it was getting to the stage where it was also affecting my arms and coming on late afternoon. I was prescribed Ropinirole but I was also prescribed iron at a different appointment for my iron levels dropping dangerously low again. This time I was prescribed Ferrous Fumarate, 3 times a day. The first day of taking them, for the first night in God knows how many years, I didn't get restless legs. I didn't think anything of it to begin with, I just simply thought it was coincidence. By about day 4 of taking the iron, I picked up my ropinirole but was reluctant to start it (dodgy for me to take it due to taking antipsychotics & antidepressants, coupled with the fact that the more I read about it and augmentation, the more it put me off) and seeing as my RLS SEEMED to have disappeared for the minute, I put them away in the drawer. And there they have stayed. I am now on 2 Ferrous Fumarate tablets a day (one in the AM and one about an hour before bed) and I have not had a single episode of RLS in the 6+ months I've been taking them. I have forgotten to take my evening iron a few times and have found that my legs feel a little 'twitchy' in the middle of the night, but that's it (so I make sure now I do not forget that tablet!). My iron levels are monitored monthly (still shockingly low). It may very well be coincidence but it has been like a magic cure for me.

[Hidden in reply to Sher78]

Shockingly great news. Keep up the good work and spreading your story around.

[Hidden in reply to Sher78]

Stored iron aka Ferritin has little to nothing to do with RLS, except it might provide insight into how much iron is free-floating in your blood. Your low stores prompted you to take oral iron which means more free floating iron in your blood that can readily be sucked up by your brain. And because your iron stores are shockingly low you actually have the privilege of being able to take iron in the morning and have it absorbed well and then take a second pill in the evening and have that one absorbed equally as well. If your stores were in the normal range then after you take that first pill your body would release more of a substance called hepcidin that would then block the full absorption of that second pill. And it’s that second pill that you really really need to be fully absorbed to stop the RLS. If ever it seems the iron is failing you I suggest you drop the morning pill and take two in the evening instead.

[Sher78 in reply to Hidden]

Completely understand. I think in all honesty, BECAUSE I have problems retaining iron, I will be kept on it for a while & obviously if they drop me to one a day, I shall just take my evening dose. I also had a good chat with one of the Doctors about the link between iron & RLS & he actually seemed to know about it anyway (unfortunately he is not my regular Doctor) so hopefully that has been put on my notes now. If it DOES come to it where my iron levels reach a point where they are 'suitable', I will ask to stay on a maintenance dose for my RLS. I have some Gentle Iron just in case they refuse but at the moment, all's good

[Hidden in reply to Sher78]

Right, exactly. You can get your stores up to 999 and because you are predisposed to RLS you will most likely still need to take that nightly iron. The RLS scientific community would disagree with me, totally, and be completely dismissive of your experience with the iron. They would tell you that you have had a 6 month long placebo effect. The thing is I have had the same experience for over 10 years now. And there are numerous other people on here with the same experience as you and I.

[Need-Sleep in reply to Hidden]

What dose/brand do you use? Thanks!

[Sher78]

Exactly! At the end of the day we can only share our own experiences and hope that it benefits somebody else or at least gives them a starting point to explore. I am gonna keep taking it (whether prescribed or not) for the rest of my life. If eventually it stops working in regards to relieving my RL, I will still continue to take it regardless, because of my crapness at retaining iron (so I figure I'm not hurting myself anyway). To be fair, I'm one of those stubborn devils that I don't really care what anyone says in respects to MY health; I know my own body better than anyone and if I find something that works for me, unless it's detrimental to my health or dangerous, I will keep doing it. Long may this "Placebo" continue for all of us who have found it a lifesaver

[Aurora913]

I know iron helps with RLS as I have been dealing with RLS for over 50 years. I don't take iron supplements but I do eat cereal almost every morning which contains the 8 mg of iron which is appropriate for my age. I eat Cream of Wheat, Cheerios or Corn flakes which all contain the correct amount of iron plus I eat a lot of foods with potassium; mostly vegetables, etc. At bedtime I use a progesterone cream which I rub in to my skin and then take 4 mg. of Diazepam (generic Valium). I have tried all the RLS meds and found I can't take any of them. They either didn't work at all or they gave me insomnia! One even had me itching all over within two days. I had to stop that one quick as the itching was horrible.

I wish all out there with the best of luck. This is an insidious health issue. I had 5 relatives on both sides of my family who had RLS and it was through them I am now dealing with this.

[DandelionBlossom in reply to Aurora913]

Itching for me has occurred when I've been allergic to some capsules.

[DandelionBlossom]

This is very good information; thank you.

[Ohmg]

I have a hemaglobin count of 15.6 (German count) or 156 Englisch count. Does that mean I can not have iron deficiency? My doc said , with that amount of hemaglobin you don’t need a ferritin analysis.