Have looked back at older posts on this topic but wondered if anyone has had an iron infusion when their ferritin level is low (mine’s 19 range 10-120) but their haemoglobin has been over 11?
My GP has refused on the grounds that the risks of the infusion outweigh the benefits, & that the body absorbs the iron better gradually than in one hit.
I’m looking at going privately as desperate (have PLMD too) but don’t want to get hopes up if haemoglobin might rule it out?
I know in Australia it’s offered more but less so here in the U.K.
Any thoughts appreciated.
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Labradorfan
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Hi, I've personally not had an iron infusion and as you say, they're hard to get for RLS in the UK. This is because they're not recognised as a treatment for RLS.
I can give you some information.
Your haemoglobin is a little on the low side, even presuming you're female. However, that's not entirely relevant.
The NICE guidance for GPs on the management of RLS recommends that if ferritin is below 75ug/L then iron therapy should be started. Infusions are not mentioned.
Other sources do state that oral iron supplements can help if ferritin is below 75ug/L. This can be effective in raising ferritin to at least 100, at which point 50% of RLS sufferers can benefit.
If ferritin is already over 75 and/or at least 100 with no benefit then it can only really be raised higher with infusions. Infusions can be successful in up to 60% of cases and the effect can last about 24 weeks.
What your GP says apparently is not entirely accurate. Infusions can be safe if proper precautions are taken.
That the body absorbs iron better gradually is misleading.
It is quite difficult to absorb iron taken orally and it has been estimated that less than 2% of any dose taken is absorbed.
The reason for this is that there is a natural mechanism in the body to limit the amount of iron absorbed from the gut to protect us from iron overload. When first taking oral iron a hormone called hepcidin is released and this stops any further iron being absorbed for up to 24 hours.
Because of this, it has been found that it is better to take iron every other day, NOT daily. More is absorbed this way.
The advantage of an IV infusion is that it bypasses this limitation completely and all the iron is absorbed. A key factor in this case is your transferrin saturation level. It can be harmful if transferrin saturation is too high as the body won't be as able to process more iron.
Other members have explored the possibility of private infusions. You may need several and possibly twice a year.
In the meantime I'd suggest an oral supplement, your ferritin is terribly low for somebody with RLS.
Thanks for your reply & info - it’s really helpful.
I didn’t know taking iron orally is better absorbed every other day so that’s a great tip.
As I’m learning fluctuating ferritin seems a chronic issue for many - I’m exploring why (thyroid, digestion etc) but seems am going to have to make supplementing - hopefully in between infusions - just party of my routine.
Which I am happy to continue doing - it’s just I’ve been advised to get up to 150ng/mL for periodic limb movement disorder (as well as for RLS). After supplementing for 6 months (following incorrect advice of GP who disputed the neurologist & said I only needed to get it to 50) it rapidly dropped back down again & so have been going in circles with it, whilst getting more & more sleep deprived.
I’m having more blood work done tomorrow so will check my transferrin saturation as you say & then hopefully go privately -even if the effect may be quite short lived. Have got to desperate measures! Will report back on progress.
I'm afraid your GP, like many GPs seems to be quite ignorant of the NICE guidance concerning the management of RLS. This is not at all unusual.
The NICE (National Institute for Health and Care Excellence) guidance is specifically aimed at GPs and it may be a good idea to familiarise yourself with it. You can then refer your GP to it if you think they are saying anything that contradicts it.
NICE is a nationally recognised medical authority and the information it publishes is evidence based. Your GP is in no position to dispute it.
You can also refer your GP to the international guidelines on iron therapy for RLS, the link to which I gave you earlier.
There is no need to get a prescription for an iron supplement from your GP. Prescription strength iron is more likely to cause gastrointestinal upset than it is to give any benefit.
An over the counter supplement will do. Particularly recommended is "Gentle" iron, ferrous bisglycinate. This is less likely to cause upset.
It's best taken (every other day) 30 mins before or two hours after eating along with a glass of orange or a vit C tablet. This aids absorption. If you wish you can take a double dose (every 2 days).
Hello Labradorfan, I have had an Iron Infusion and the results were that I had a useful improvement in my RLS symptoms during weeks 6 to18 after the infusion. However my ferritin level gradually declined so eventually there was no benefit, but it seems to be more effective for some people. I had to have the infusion privately, with my doctors help and approval. She was unable to get the Neurologist to even reply to my or her letters of request. Can't win them all ! If you can afford it give it a go it may solve your problem.
Thanks for your reply -it’s helpful to hear how others have got on with things like this. And encouraging you felt some benefit - even if for just a while.
It is quite pricey for something that will possibly be so short lived but I’ve got to the stage where I’m desperate.
And if I keep tabs on my iron levels afterwards & maybe supplement with a maintenance dose when needed, I can prevent the dreaded plummet! Well one can hope!
I have had an iron infusion in Australia. It is difficult to get it done here too. I had to visit 5 doctors until I found one who was willing to refer me to a specialist who was prepared to do the job.
I also had the story that an IV was too risky. I queried the doctors hard about the exact reason that made it risky and they had no answer. In the end the best they could do was all the risks associated with any piercing of the skin and a risk of accidental overdose because the IV process was not as precise as you might hope. I reckoned that the risk of penetrating my skin was something I took every time I accepted a typhoid or flu injection and that risk must be very low and the risk of an iron overdose also seemed low. None of the doctors or others I spoke to identified a significant risk if my ferritin exceeded 500 or even 1000 so the risk of aiming at 350 and exceeding a safe level was acceptable to me. The possible reward was relief from RLS and this possibility made the risk worth taking.
Unfortunately the IV iron didn't work on my RLS. After about 20 months my ferritin level has dropped back to its original level. Before the IV it was about 108 and the IV raised it to about 348 two months later. It maintained at about 230 for 12 months and then comparatively suddenly dropped back to 114.
I am looking for any trace of blood loss that might have something to do with this. I have a problem with my esophagus which might be bleeding. I have recently had a bowel cancer test which should have detected some types in internal bleeding. I'm not quite sure I want to find internal bleeding in case it is worse news than the RLS.
I have also adopted a Low Chemical Diet looking for food allergies or intolerances but that's still early days.
For some reason I have forgotten about SIBO. Probably because my original diet was working well and I didn't want too many overlapping experiments. I am going to arrange a SIBO breath test to see if there is a possible problem.
That’s interesting I had read somewhere (although I didn’t save it) that in Australia they’re more readily available than the U.K. but I didn’t clock which part of Australia they were referring to, so it’s easy to generalise & assume as I did, that it’s more routinely carried out there. Clearly not - as you know only too well.
From what I can gather it seems the need for a trained health professional to monitor & treat in case of any adverse reaction, means it’s viewed as expensive to administer, especially for people like us who are just moaning about restless legs & should just get on with it.
In reality, it probably isn’t all that expensive a service to administer & more about the failure to recognise certain health conditions, RLS being one of them, as a legitimate clinical need, worthy of the same treatment afforded to as other health conditions. Getting on my soap box now!
So the doctors use the anaphylactic shock risk to scare us off IMO.
Maybe they do look at efficacy overall as it does seem to be the case that ferritin levels are prone to dropping leaving us like you, tying to solve the mystery of why & worrying about the prospect of internal bleeding or something more sinister.
I am going to look at SIBO too - in time!
But before getting us chemically dependent on medications, wouldn’t it be worth just following treatment guidelines & trial IV therapy first, to save if nothing else on the human costs? Sadly not.
From what I’ve learned from Thyroid UK’s forum, iron deficiency is also very common in thyroid disorders including ones not so readily tested for that are autoimmune in nature.
I’ve been struggling with CFS/ME, depression & RLS for years & (like do many of us) only recently found the true picture of my blood results and ferritin, vitamin D status, amongst others. So I’m exploring that avenue too but doctors seem similarly blinkered to the nuances of how thyroid hormones can affect us differently individually & are stuck on that one size fits all approach of healthcare.
Not bitter at all!
Ps Wanted to acknowledge your longer msg which I want respond to properly hence the delay & to thank you for such a comprehensive answer! It’s amazingly helpful & shows how much patients care. Will reply in due course. But thankyou again for your time & consideration.
I had an iron infusion and my ferritin was 30. Hemoglobin was low.
Did you do a morning fasted FULL iron panel. A full iron panel consists of four numbers. Serum iron, ferritin, TIBC and Transferrin Saturation Percentage. Your TSP should be above 30. If it is below 20 you should get an infusion.
Don't supplement with iron before the test! It will skew the numbers big time.
So I did read only recently not to supplement before an iron test but didn’t know about fasting. That’s really good to know - thank-you.
Thankfully I had fasted for my last test as was having thyroid checked too (where they advise the same) so hopefully my latest results for Ferritin will be reliable.
Waiting on the results so will update on my progress.
Keep in mind that the drugs you need for some of your other ailments might be causing your RLS. I think you cn check for this on rls-uk.org/treatment/ and a couple of smart doctors to see if any of them are likely to be causing the RLS. This includes things like anti-acids, antihistamines, and many ordinary medicines. If this is a problem then there might be alternative medicines that don't have this problem.
Curiously Doctor Buchfuhrer makes a point of mentioning the requirement for a fast before the blood sample. How ever I have asked several Australian doctors and also two pathology laboratories and they all insist on no fasting required. I assumed it was something about Americans but sounds like UK doctors are pro-fasting. I have always fasted because I believe in Doctor Buchfuhrer and because I want to standardise my procedure as much as possible. No one has mentioned that I must eat before a blood sample so I will continue with my own private Standard Operating Procedure. I was advised by "someone" (there's an authoritative source) that it was best to use the same pathology laboratory because ferritin levels are difficult to measure and can vary between labs depending on the analysis process they use. They said up to 30% variation I think from memory. This is probable important for RLS because we are interested in changes in our ferritin over a period of time as we attempt to boost it with different treatments. In reality we are really interested in whether our ferritin is 50 or 350 so near enuf is probably good enuf.
My husband Ron's restless legs improve always with iron infusion---and
2 or 3 ropinirole gives him 8 hrs or more sleep a night----the infusion lasts about 18 months----we have been doing this for 3 years now. Yes the HCB
should not go over 18 so its a balancing act---this last time he had 2 infusions instead of 6. And ropinirole does augment but if you can stand 30 or 40 mins then it stops and sleep comes. Also I had to fight the drs too but then we went to a move
ment disorder clinic and the neurologist told the primary dr to check the feritin. iron ---and it was very low of course. There is a very helpful book written by Robert Yoakum who suffers with RLS. Don't give up.
Thanks for your reply. That’s really good that they work for him - I’m hoping will do for me too though I realise there are no guarantees.
It is a disgrace how much we have to fight to get heard by the health profession. GP’s seem to be the worst offenders.
I’m not on any medication for RLS ATM fortunately (for now that is). But it is one of other conditions (ME, depression, PLMD) that have been chronically disrupting my sleep for years & I’ve got to breaking point with it. Hence why desperate to try an infusion to get my levels up & to see if it gives me any relief.
Like so many of us on here I too was told that my ferritin, vitamin D, B12, folate (the list goes on!) were all “fine” for years, only to find out the opposite when I requested to see copies of my blood test results, (on the advice of the good folks on the PAS forum). Thank goodness for these forums!
Thanks for the book recommendation - I’ll have a look on Amazon & put it on my Xmas list!
That’s unfortunate. By the sounds of it it’s highly individual as to who it does work for & doesn’t seem to replenish iron stores in the way you’d think/hope.
Interesting re role haemoglobin may play - guess will just (if I can actually get one) have to give it a go & see.
Have you considered writing direct to the haematology department at your local hospital? Iron infusions are safe so your GP is wrong. I have monthly infusions of a monoclonal antibody at my hospital for my MS & the risk of infusion side effects is way higher than for an Injectafer infusion.
Bear in mind that iron infusions and raising levels dramatically helps 60% of RLS sufferers but does nothing for 20%.
I know several UK hospitals have done the infusion on the NHS but by pass your GP to stand any chance.
Well when I asked for a 2nd opinion they reiterated why I couldn’t have one but said they could, if absolutely necessary refer me to haematology but that it is an 8 month wait ATM.
Because I’m desperate (due to CFS/ME, depression, PLMD that interfere with my sleep also & chronic in nature) I can’t wait that long.
However I intend to request to be referred because I want them to see that it is serious enough to warrant the correct treatment!
Although with Covid & my own inner not wanting to take up services when others far worse off than me need them talk, I’ve scuttled off to try privately.
From what I gather - the risk of adverse reaction is the scare tactic they use & having read up on my local haematology department, they use the safer Monofer infusion which is like I believe Ferrinject & Injectafter (but just enables a larger dose to be delivered than the others in one sitting, for px’s who need >1000mcg apparently).
I did not know you could write directly to haematology however! Maybe I could ask the neurologist to refer me direct as they are on the same site & she has been more helpful in arranging blood tests in lockdown there & in requesting my Gp get my levels up. Either way it’s worth a shot.
I would push for the Injectafer infusion as Dr Buchfuhrer & US experts confirm this is the best solution to treat RLS. I have read on other help forums that only Injectafer infusions are helpful. Definitely write direct to your local hospital as I'm pretty sure you wouldn't have to wait 8 months. Here in London, all my hospital appointments for scans, MS infusions etc have taken place earlier than expected.
If you go private, ask for Injectafer. I often bypass my GP by writing direct to specialists and they agree to see me but ask for a GP referral letter. It is more difficult for the GP to refuse a referral then.
Have a look at infusion risk and you'll see that Injectafer is very low risk. It's annoying that GPs give us incorrect information to dissuade us from certain treatments.
One word of caution - if you do have a mild allergic reaction, the standard treatment is IV intravenous anti histamine and this will actually bring on a bad RLS attack. Mention it to the nurses administering the infusion and ask for IV steroids instead.
Wow that’s really helpful to know Joolsg how the antidote can bring on a bad case of RLS & to ask (should it happen) for IV steroids. Really invaluable info - thank-you!
Ok. From what I can see Ferinject is commercialised under the brand name Injectafer. And it’s manufactured by
Where it’s being offered privately closest to me uses Ferinject which is ferric carboxymaltose.
However my local hospital use Monofer which is different & iron isomaltoside.
In which case I’ve probably got no choice but to go privately as I want to follow advice of an established authority than rely on what my local hospital say!
I could only get Iron Sucrose. It helped. I know two people who have done both, Injectafer and Iron Sucrose. They both agree Injectafer works better for RLS.
You are in good hands, the comments are great.
BTW, I found I respond very well to Liquid Ferrous Sulfate with Vitamin C on an empty stomach. So I do believe oral supplementation does work, it takes a long time. If you are low in iron it is a double whammy, you body needs the iron before it can make it to the brain.
I guess the question is why are you so low? Do you have any other deficiencies? Vitamin D, B Vitamins etc.
I don’t know how long I’ve been deficient but only discovered it a year ago (along with vitamin D which I am on maintenance for life) when I requested my blood test results as I was concerned I may have pernicious anaemia (family history). GP ruled out PA, coeliac & thyroid but I still suspect subclinical thyroid & possible functional b12 deficiency so taking steps to address this.
Made changes to my diet & SIBO test next on the list.
I’m hoping that if I ever get down to why it could help me beat CFS. But I’m aware too that many don’t ever get any definitive answers as to why levels fluctuate so much.
At least I now know & have the tools to be in control and self test & supplement in critical areas & to optimise my nutrition so that I don’t get deficient again.
Several years ago I signed up to participate in a RLS study. They did a full work up and found my iron low so they put me on upped dosages of ferrous gluconate for a couple weeks. When I when back for follow up work my iron was improved and my RLS had resolved.
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