Iron enhancement: Hallo. I was... - Restless Legs Syn...

Restless Legs Syndrome

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Iron enhancement

glosrunner profile image
4 Replies

Hallo.

I was interested to read about the possibility that medium to low iron levels have an effect on RLS.

I have had RLS for many decades; I am fortunate in that it is a bloody nuisance sometimes, but comes and goes to some extent and I was able to live with it. It does not affect my daily life so much, but I have a 10-15 minute window in which I have to get to sleep, or it will kick in (geddit?lol!) and then I will often have to get up again, have a tea of drink, read a bit, and try again. I am 69 years old, and it has slowly got worse, which I believe is par for the course. Recently it has become markedly more challenging. I often wake up early in the morning, which might be due to RLS, but I do have slightly achy hips as well, from "normal" wear and tear in my hips due to age. So they say!

I went to the GP with it, and to their credit they took it seriously and I was referred to a sleep clinic, and I was able to take an "involuntary movement" test over 2 nights that confirmed that I suffered from RLS. (An average of 37 involuntary movements an hour I seem to remember). I was given the chance to take the usual medications, but because my father had suffered from Parkinson's disease, I knew that the effects wear off, so I did not take them. I theorized that I would only take that option if things got really bad.

I watched the vid's on this site re the use of iron supplements. They suggest that you don't have to have seriousIy low iron levels to suffer from increased RLS, just depleted levels. I started by taking "Floradix" liquid iron supplements twice a day; I did feel an improvement beginning. The "urges" to move were less overwhelming and more bearable, and there were less of them. Unfortunately, this supplement also has malt extract and I suffer from IBS, so I began to suffer from that. Doh! I moved on to "Feroglobin" capsules, which I take last thing each night. Things are significantly better now. I go off to sleep without any worries, much easier. I still wake up early in the morning; I am working on that! I think that taking them last thing at night is important; it may be that the iron levels spike upward then.

You have to take the supplements for 3 months at least, and you have to make sure that you do not exceed the safe daily dose. There are other "contra-indications" with iron supplements, so make sure that you read up on it.

I suppose it needs to be said that there may be other reasons for the improvement; it may be that it was going to improve anyway, or I may have benefitted from the "Placebo" effect, once I decided to get going and do something about it. Additionally, I stopped drinking caffeinated coffee after mid day, and cut my alcohol intake down to low levels. ( eg; one glass of wine in an evening)

I hope that you find this useful. I will add more info after another month.

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glosrunner
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4 Replies

Thanks for sharing this. Great to hear you're benefitting from the iron.

The most commonly used "iron" test for RLS is a "ferritin" test and it appears that up to 50% pf RLS sufferers benefit from a ferritin level of at least 100ug/L.

Note that a "normal" level is anything above 12ug/L.

This might give you a target to aim for.

You are probably right to think it may take months to raise your ferritin level and hence gain benefit.

This is partly because when taking oral iron, the body has a hormone, hepcidin, which limits the amount of iron you can absorb in order to protect you against blood iron overload.

Apparently, you can "trick" this by taking it every OTHER day, not every day. It's also said it's best to take it on an empty stomach, in the evening and drink a glass of orange (or take vitamin C at the same time. More of the iron gets absorbed.

You have done well to avoid medications and I hope this continues. However, if it ever gets to the point that you can no longer manage without, be aware that dopaminergic agents, like the ones your dad may have had, aren't the recommended first treatment for RLS. This is because of their long term consequences.

Gabapentin or pregabalin are now recommended. These may not be quite as effective, but don't have the long term issues that dopaminergic medicines have.

However, they do have side effects, so should be avoided if you cam.

Additionally in the meantime. As well as age, you may be taking other medications which can make RLS worse.

These include SSRI and tricyclic antidepressants (notably amitriptyline), antihistamines, some antacids and anti-nausea medicines, beta blockers and sadly, alcohol.

Hope this helps, keep on with the iron!

PS, I forgot to mention. The involuntary movements your sleep clinic detected are strictly speaking PLMS, (Periodic Limb Movement when Sleeping.)

RLS only really applies to symptoms you have when awake. However, most people that have PLMS also have RLS, so sometimes (slightly inaccurately), people are told they have RLS. The treatment is more or less the same for both so if you have PLMS/RLS it doesn't really matter.

Some people however do have PLMS without RLS and in this case it may mean that they need no treatment at all.

DicCarlson profile image
DicCarlson

I too have started a low dose iron supplementation - pretty much as outlined by Manerva response. There are many other "allied" afflictions that could be iron related - plain insomnia, tinnitus, headaches, etc. You should get your iron status tested to keep track of your blood levels of Ferritin (storage protein for iron). A complete iron profile tests for many metrics of iron in your body. Here is an explanation of test results... bloodtestsresults.com/iron-...

WideBody profile image
WideBody in reply to DicCarlson

I would love for my iron levels to affect my tinnitus. My ferritin went from 30 to 273, with no affect on my Tinnitus. Now maybe being anemic for so long did permanent damage.

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