Serum Ferritin levels: I had a blood... - Restless Legs Syn...

Restless Legs Syndrome

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Serum Ferritin levels

Dibbydog profile image
26 Replies

I had a blood test last week and my serum ferritin level is 24 ug/L. It says the normal range is 10 to 291. As I have restless legs is this level ok or should I be taking iron tablets? It doesn’t mention my transferrin saturation numbers. Maybe if I call in at the doctors I could ask if they have these numbers. I must say I don’t really know what transferrin saturation is. Any help would be appreciated.

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Dibbydog
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ChrisColumbus profile image
ChrisColumbus

The 'normal' range for serum ferritin is very wide, but experience has shown that levels over 100 - preferably nearer 200 - help many RLS sufferers. Most doctors are unaware of this.

Most laboratories define “normal” for transferrin saturation - often shown as TSAT - as max. 30% for female and max. 45% for male. As long as your TSAT figure is below the maximum, and certainly below 45%, with your low ferritin you should be looking at iron supplementation.

You can get iron bisglycinate, 'Gentle Iron', in most UK chemists and health food shops. Ideally you need 75mg+ of Gentle Iron per evening taken 24 hours apart, so if you buy e.g. Holland & Barrett 20mg tablets you would want to take 4.

ChrisColumbus profile image
ChrisColumbus in reply toChrisColumbus

I've amended the Gentle Iron quantity to take account of Sue's recommendations below. Unless your doctor classes you as anaemic you are unlikely to get an iron infusion in the UK. EDIT: but see Joolsg 's response below.

ChrisColumbus profile image
ChrisColumbus

I see that SueJohnson gave you advice previously about switching from your existing antidepressants, which can trigger RLS, to trazodone. Were you able to do this?

I also see that you were trying magnesium, which helps me and others but not all. What I do find if that I have something else that's triggering RLS - such as in your case possibly low iron and/or antidepressants - magnesium on it's own won't stop the problem

Dibbydog profile image
Dibbydog in reply toChrisColumbus

I have been taking citalopram in the morning and amitriptyline in the evening. I am in the process of reducing the amount of citalopram I am taking by cutting the tablets so hopefully will be able to stop taking those soon. I have also been taking magnesium tablets (thanks to the help from the posts on this website) for about the last four weeks and they definitely seem to help me get a better nights sleep.

Joolsg profile image
Joolsg in reply toDibbydog

Citalopram and Amitriptyline both trigger/worsen RLS. Safe anti depressants for RLS are trazodone and Bupropion, but work with your GP to switch safely.Send your results to Prof. Toby Richards at the Iron Clinic. He will arrange private iron infusion in.Harley Street, London for around £800.

If you live near St George's in Tooting or the Royal Cornwall in Truro, you might be able to get an NHS iron infusion.

SueJohnson profile image
SueJohnson in reply toDibbydog

I agree with Joolsg about Citalopram and Amitriptyline and the substitutes.

SueJohnson profile image
SueJohnson

24 is very low for RLS. It would be best if you can get an iron infusion but if you can't take 75 mg to 100 mg of iron bisglycinate (gentle iron) with 100 mg of vitamin C or some orange juice since that helps its absorption. Iron bisglycinate is best since you had constipation before. If you still have constipation there are a number of things you can do - reply back here if that is the case. Ferrous gluconate is less constipating so you could try that except to get the same amount of iron you would need to take 2 tablets.

Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Since you take magnesium, or if you take calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Since you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

Dibbydog profile image
Dibbydog in reply toSueJohnson

Thank you for your help. I will now try to figure out the best time of day to take my iron tablets. Have just looked at the iron tablets I have and they are iron bisglycinate but are only 20 mg and it says take one a day and also says do not exceed the daily dose! They are from Boots as I live n the UK.

ChrisColumbus profile image
ChrisColumbus in reply toDibbydog

On a similar point, there are bottles of magnesium citrate sold in the US which solemnly warn not to take more than 100mg/day. Solgar brand, sold both here and in the US, recommends 400mg/day and I've taken up to 600mg/day without ill effects. You'll be fine with Sue's recommended amount of gentle iron unless your TSAT is high and/or you have Haemochromatosis.

nhs.uk/conditions/haemochro...

Incidentally, I believe that you're on magnesium glycinate, which as you've found is difficult to find in shops in the UK: citrate is much easier to get. The benefit of glycinate is that it's less likely to have a laxative effect.

Dibbydog profile image
Dibbydog in reply toChrisColumbus

Thank you. Is TSAT different from serum ferritin?

ChrisColumbus profile image
ChrisColumbus in reply toDibbydog

Yes: when you were given your ferritin level your TSAT (transferrin saturation) should also have been recorded. See my first reply to your post. (BTW: for future reference, if you have either the NHS or Patient Access app you should be able to arrange with your surgery to have online access to your test results and much more).

Dibbydog profile image
Dibbydog in reply toChrisColumbus

Thank you. I will pop into the doctors and see if I can get my TSAT levels. I do have access to the NHS app but it just gives my serum ferritin levels.

ChrisColumbus profile image
ChrisColumbus in reply toDibbydog

OK - but if it's really not in your test results they may not have it.

SueJohnson profile image
SueJohnson in reply toDibbydog

You can ignore the "do not exceed the daily dose. " I can assure you that taking what I suggested won't hurt you.

Dibbydog profile image
Dibbydog in reply toSueJohnson

Ok thank you.

Edengirl58 profile image
Edengirl58

I had an iron infusion at Newcastle Upon Tyne Hospital Trust. This was from a neurologist at the Trust, who has now discharged me, but has said that if my levels drop in the future I can access an iron infusion if my GP requests it. It varies hugely up and down the country as to whether it’s available, but if necessary -and possible to travel-ask to go out of your area.

Dibbydog profile image
Dibbydog in reply toEdengirl58

Thank you . It’s good to know that you can get this in the UK. I think I will take iron tablets first to see if they help and if I am no better ask about an iron infusion.

Munroist profile image
Munroist in reply toEdengirl58

I tried to get an infusion from Newcastle and was referred by my GP and prepared to travel but they said they wouldn’t do it for anyone outside the Northern Region. The Iron Clinic in London were much more helpful.

Dibbydog profile image
Dibbydog in reply toMunroist

Thank you. I didn’t even know there was an Iron Clinic in London - I will look it up.

DicCarlson profile image
DicCarlson

That is painfully low Ferritin level. My raging RLS responded dramatically to iron supplements (Ferrous Bisglycinate Chelate). Iron is a BIG player in the RLS world - principally iron deficiency in the brain. Since we only have access to serum levels that's what we can treat with supplements or infusion. Here's an article on iron test result explanations...

bloodtestsresults.com/iron-...

BarnGir1 profile image
BarnGir1 in reply toDicCarlson

This is an excellent resource to keep handy. Thanks for sharing it. BarnGir1

Rwall profile image
Rwall

I'm not sure what levels should be, but mine is now up to 370ish, and I finally am feeling some relief. My GP was fine with my levels, even though they're high!

Sleeplessinbitola profile image
Sleeplessinbitola

Hello everyone...

Here are my numbers for my last blood work for iron:

Ferritin 2,111

Transferin Satudration 0.40

Iron 16.9

Transferin 1.67

Are these numbers good or do I need to get an iron transfusion??

This Disease is killing me and no one can help me because all my doctors think it's a joke.

Please help me because I don't know who else to turn to. Thanks

Sleeplessinbitola profile image
Sleeplessinbitola in reply toSleeplessinbitola

Is anyone going to PLEASE answer this

LotteM profile image
LotteM in reply toSleeplessinbitola

Comparing your iron results to the values mentioned in the Mayo Clinic paper mayoclinicproceedings.org/a... , your iron status seems good for RLS.

Your ferritin is high. Too high? And may indicate a current or recent infection.

Your transferrin saturation is also relatively high.

But your iron value seems (too) low. That depends partly on the units. If it is microgram / deciliter ( ug/dL) than it is very low. If it is in micromol / liter (umol/L) than it is low in the range.

Talk to your doctor. I guess you are in the US? If so, subscribe to rls.org and get their recommendations for iron and bring these along to your doctor to discuss. Most likely you need to reassess iron status in a few months, to see whether the ferritin value have lowered to normal ones.

Meanwhile, you may also review your current treatment if the rls ‘is killing you’. What IS your current treatment? Check the Mayo Clinic paper and Sue Johnsons overviews for advises. And you may want to start a new post for specific questions.

Sleeplessinbitola profile image
Sleeplessinbitola

Why isn't anyone answering my post??PLEASE HELP ME.......PLEASE

SueJohnson??

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