ferratin levels: Hi all. Although my... - Restless Legs Syn...

Restless Legs Syndrome

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ferratin levels

lorrinet profile image
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Hi all. Although my ferratin level is around 125 (which my GP said was a little high, if anything), I'm wondering if there might be anything to be gained by taking an iron supplement? Is there a chance that a raised level might help my RLS, or would it be a bad idea? My B12 is low so I'm taking that in a spray form, as recommended on here.

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lorrinet
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8 Replies

your ferritin level of 125 is a good level and not too high, i have known higher. Taking a iron supplement is not a good idea, with your ferritin level that high. Its not going to make any difference to your RLS. Having the level at 125 and you are still having RLS symptoms means its not the reason for your RLS.

lorrinet profile image
lorrinet in reply to

Yes, I figured that. I was really hoping it was low and so could be treated. This wretched condition has so spoiled my life and I longed to find a reason for it.

DicCarlson profile image
DicCarlson

Ah - you're looking at the great mystery of RLS!

From Johns Hopkins... “It is possible…that there can exist an iron deficiency in the tissues in spite of normal serum iron. 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." "Gaps in our knowledge. Despite the substantial body of research on peripheral iron regulation, we still know very little about how iron is regulated by the blood-brain barrier or by the different cells within the brain. Also there is a relative lack of research on the effects of having iron insufficiency and on exactly how a brain region can be low in iron yet other organs in the body have normal levels?" More here... hopkinsmedicine.org/neurolo...

lorrinet profile image
lorrinet in reply to DicCarlson

I attempted to explain this to my GP but she clearly didn't understand, telling me firmly that the normal test is the only one done by the NHS. Being willing to pay, I also rang a private hospital but they couldn't or wouldn't help me.

DicCarlson profile image
DicCarlson in reply to lorrinet

There's really only one test for Serum (blood) Ferritin Levels. Ferritin is the protein that carries the iron. I'm no doctor nor a biochemist, but I believe there is a difference with some of the newer supplements notably Ferrous bisglycinate chelate which supposedly crosses the blood brain barrier more readily. Ferritin serves to store iron in a non-toxic form, to deposit it in a safe form, and to transport it to areas where it is required. (like the brain). Normal Ferritin levels For men, 20 to 500 nanograms per milliliter. For women, 20 to 200 nanograms per milliliter. You could easily experiment with a supplement for even a week and see if it makes a difference. Lots of Retail Brands here...albionferrochel.com/index.p...

Eryl profile image
Eryl

Instead of adding things to your diet, have you tried taking things out? I and others find that reducing sugar intake helps. Personally I've found E202 artificial preservative to be a strong trigger.

maryenglund profile image
maryenglund

I avoid processed food as much as possible. I cook more from scratch. It make take a little longer to make a list when I go shopping but sooooo worth it. No soda which is pure chemicals, no fast food (well occasionally when traveling). I do supplement my iron even though my levels came back normal. I supplement B12 and magnesium and calcium. My blood work came back completely normal but I read on this site that people with RLS need more than the normal person. I am down to one medcation Gabapentin 600 mg at night and I have no symptoms since getting off ropinal and changing my diet. I also lost weight eating the fresh foods. I hope this helps. Trying out the ideas on this site helped me so much more than my doctor. It is worth trying what people say, it may not work for you but it is worth testing. I also learned about augmentation on this site which saved my sanity for sure and I am on top of that. All the best, mary

Lorrinet my ferritin is slightly over 100 and as mentioned by DicCarlson I too take one or two 25mg tablets of ferrous bisglicinate an hour before sleep on an empty stomach. My doctor wanted me to take 325mg tablets of ferrous sulfate two or three times a day for the RLS but I followed people's advice on here instead. I have been doing so for months and it has kept the RLS at bay every night. I am truly grateful every morning that I wake up well rested thanks to the iron. I am sure my iron stores are higher by now yet it doesn't seem to make much difference I still need that night time iron. I was taking zinc on a friend's advice for a stomach ulcer and my RLS was going crazy and I had no idea why. I had to take two iron capsules. Then I thought I should try stopping the zinc and see what happens. The crazy legs/body went back to just stupid legs. I then read that zinc hampers the absorption of iron. I really really need that iron and I can't take anything that hampers its absorption at night.

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