My legs jerk most of the night, so depressed with it all.
I have had my iron levels checked twice in recent weeks, l asked my gp what they are and he said they are 9 and put me on iron tablets. I am confused because on this forum it says they need to be 100/200, l live in the UK so are they different. So before l retired l was a hospital ward receptionist and when reports came back from the lab which were under 12 l had to inform the doctor for patients to be prescribed iron, what l'm asking is does the levels differ from each country
I hope this makes sense, lm not very good at explaining myself
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Unhappygirl
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What you are asking makes perfect sense. I am sure that some of our very knowledgeable fellow posters will give you a much better explanation than I can, but I suspect what your doctor is referring to is the level of iron in your blood. In the UK anything below 12 is considered anaemic and will prompt prescription of iron tablets. However, another measure of iron which is very relevant for RLS sufferers is the level of iron 'reserves' in your body. This is called ferritin and that is what is referred to when you see levels of 100/200 referred to. Your body needs iron for many functions, and if your reserves are low this means your blood is taking all the available iron and insufficient is left to perform all the other functions.
As an example, my levels were:
Blood iron 14
Stored iron (ferritin) 29
As far as my GP was concerned, these results were 'normal'. But when I gave these to my sleep consultant, she said that although I was not technically anaemic, blood iron of 14 was low. But, more importantly, that my ferritin level was extremely low as for people with RLS an ferritin level of at least 100 is necessary.
Getting ferritin levels up can really help many sufferers. You should ask your GP what your score is and not accept him/her just saying it's 'normal'. Beware that getting ferritin levels up is a long haul (especially if you are also anaemic because your blood will snatch all the available iron). And also beware even when they are much higher it may not resolve your RLS as it doesn't work for everyone. I had an iron infusion privately because I didn't want to spend months getting my levels up with tablets. But it hasn't resolved my RLS/PLMS.
There is also another measure relating to iron which is important, which is called something like the saturation rate. This measures how good a job your body is doing of transferring iron from the reserves to the places it is needed. But I suspect your GP won't have a clue about this. I hope you are getting a referral to a specialist.
People on the forum will also be able to suggest the best form of iron to take, and give advice about taking it on an empty stomach, with vitamin C and before bed.
I am so grateful for all the information you have given. My first blood test was low, so they ask for a repeat, before the nurse took it l asked her what it was she said 23, then l had the second one taken and saw the GP for the result, l asked him what the second was, he said it was 9, which means by your reckoning,
Blood iron 9
Stored iron 23
This seems low, but no one mentioned the other one. I think l may make an appointment to see the nurse armed with the information you have given me. Again, thank you so much, l find this forum so helpful
You need to ask your GP specifically for your ferritin level, not blood iron level. It looks like your GP has not given you enough information for you to determine if he/she is talking about ferritin.
Many on here take iron bisglycinate (aka gentle iron). Can be got in Holland and Barret in UK. It does not need to be taken with vit C but optimally should be taken on an empty stomach and more than an hour before food. Some people consider that taking iron every second day (rather than every day) helps increase levels quicker as the body absorbs the iron more readily if it is not available all the time. I have recently started using iron patches from patchmd as recommended by Joolsg. Am hoping they will help raise stored iron also.
Great, comprehensive answer. What was your ferritin level after your iron infusion? How long after the infusion was that blood test? The RLS experts recommend waiting 8 weeks because there can be a temporary uptick in ferritin after an infusion that settles down by 8 weeks. And what formulation and dosage? Again, the experts are now recommending ferrous carboxymaltose (aka InjectaFer) 1000 mg either all at once or in two 500 mg doses 5 days apart. (Not sure I have the units right.)
I got the latter in August. It raised my ferritin to 240 after 4 weeks, which dropped to 160 at 8 weeks. It definitely reduced my RLS symptoms by about 6 weeks, allowing me to reduce meds by about 30%. But by now (about 12 weeks), I'm only seeing about a 20% improvement. So my hematologist scheduled a second pair of 500 mg InjectaFer infusions end of this month. There's some limited evidence that multiple infusions may be needed to get ferritin up and stay up. (One must be careful to avoid iron overload, of course.)
The recent clinical consensus paper on iron therapy is here:
It was for me and I have replied above. It can get a bit confusing on here, can't it!
I am so sorry to see your other post about how down you are feeling and all I can say is we ALL understand and that's why we are here, to support each other. Because people who don't have this condition do not understand (same goes for other chronic conditions which have a huge impact on your life but people can't 'see' them, so can't understand).
No meds have worked for me yet and every time I know it within two weeks of seeing my consultant, and have four weeks to get through before I see her again and can try something else. Every time I think to myself 'I am not going to make it through to the next appointment'. But I do. Not happily. But I do. And one day something will work and change my life.
Re your iron levels, why don't you ask the receptionist at the GP surgery to print off a copy of your latest test results? (They are yours and you are perfectly entitled to a copy.) If you haven't had a print off before, they look quite daunting, but you will be able to find your ferritin level and you can post here what it is.
I have seen the opinion that if an iron infusion raises the ferritin level (as it must) but it goes down again then the specialist should start looking for a reason such as internal bleedingor unusual periods.
Quote from Doctor Buchfuhrer
"You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients. Make sure your doctor understands this point."
The good thing about your iron levels being low is that you can hope that when they get higher your rls will improve. Mine improved a lot when I raised them from somewhere in the 20s (serum ferritin) to over 60.
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