iron infusion on nhs in UK - any tips?

[Lacey_]

hi, I have been taking iron bisglycinate supplements (100mg on alt nights on empty stomach with vit C) for a year now and my ferritin and TS levels started to rise but are now dropping back (currently 50SF and 29% TS, originally 19SF and 24%TS). My RLS has definitely improved over this time but is becoming more problematic again over the last few weeks.

I seem to remember one of the neurologists suggesting that the body might reject raising iron levels derived from oral supplements if it believes levels are generally good enough and that infusion is a much more effective way of raising ferritin levels - can anyone recall who this was or where I might find a link?

I have never taken DA drugs, thankfully, and would like to try infusion before going down the gabapentin etc drugs route but can’t afford the cost of doing this privately. I have approached my local teaching hospital haemotology dept (as suggested on here) to request iron infusion but they do still require a referral from my GP. I am going to request a chat with my GP to request a referral and just wondered if anyone else on here had any experience of getting one on the NHS for RLS as I’m not expecting an enthusiastic response (my last chat with them proposed DA drugs as treatment!). Any further advice or tips would be appreciated, as ever this forum is SO helpful?

[Joolsg]

I wrote directly to the head haematologist at St George's in Tooting. I sent a few research papers which made it clear that iron infusions work for RLS.They called me and said they'd had a team meeting and agreed to give me the infusion on 'compassionate grounds'.

As we know, the UK is at least a decade behind in knowledge of RLS so iron infusions are not licensed for RLS.

And the NHS is currently falling apart/struggling to cope.

But- you're almost there! Your haematology dept has agreed if you get the GP referral.

Simply add all the research articles to an email and send to your GP.

Also print off iron therapy from RLS-UK website ( useful resources).

Here are some useful links.

rls-uk.org/useful-resources

sciencedirect.com/science/a...

If they refuse, you can get a private iron infusion for around £800 from the Iron Clinic in London or Manchester.

It is expensive!

[Lacey_ in reply to Joolsg]

That’s exactly the info I was after, thank you 🙏

[Joolsg in reply to Lacey_]

youtu.be/cNOGbqwrPUw?si=HUv...(Not working as expected?)

You could also send this YouTube video by Dr Andy Berkowski, one of the world's top RLS experts.

He recommends InFed as his number 1 iron formula.

[Lacey_ in reply to Joolsg]

Thank you I’m preparing my letter 🤞🤞

[Lacey_ in reply to Joolsg]

How long ago did you get your infusion on the NHS, Joolsg?

[Joolsg in reply to Lacey_]

2018. My serum ferritin was 145 before the infusion & shot up to 785ųg/L.Sadly it made no difference for me. I had hoped it would work because I developed RLS during my second pregnancy when I had anaemia. But I also had a major MS attack which caused my bladder to stop working & I developed uro sepsis/kidney problems so was hospitalised for 2 weeks. So my RLS might have been caused by anaemia OR new MS scars in the spine.

Or the iron infusion MIGHT have worked if I had been given an iron infusion while pregnant. Perhaps 10 years on dopamine agonists caused permanent damage to my dopamine receptors and stopped the possibility of an iron infusion working.

I'll never know.

But the odds are in your favour.

Iron infusions seem to help the vast majority.

Fingers crossed you get the infusion and it works.

[Lacey_ in reply to Joolsg]

Gosh you’ve had your share of problems without RLS and I’m sorry the iron didn't help! I’ve had it since a child but only seriously badly in my sixties, so feel luckier than lots of people. Thanks for your generous advice and good wishes.

[pianoplayerPLMD]

I've just had an iron infusion at the private clinic of Dr. Jose Thomas. Like you my GP couldn't do it on the NHS for me. I've been through the gamut of all the recommended medical treatments for RLS/PLMD, and none of it has worked. I just have to get up and do half-hour walkabouts every night. So on the basis that iron infusion can improve life for 60% of people who have it, I have my fingers crossed, and have to wait 8 weeks or so for any positive benefits. I try to keep cheerful. Yes it is expensive but I would cautiously recommend it to you.

[BPN28]

I had my iron infusion at St Thomas’ Hospital in London on the NHS. I was referred there by Guys Sleep Disorder Centre.

Good luck!

[Drls]

hello Lacey, I had a 500mg infusion ( half the full dose) at the iron clinic privately and it cost me around £500 not £800. I don’t know of that makes it any more accessible to you. After about six weeks my RLS was much improved however 3-4 months later it had got worse again so I had a second 500mg iron infusion at the iron clinic. Because I was already in the system I didn’t need the initial consultation which costs £200 and the infusion cost £360. I’m now waiting to see if my symptoms improve.

Hopefully you will be able to access one on the nhs however I thought I’d give you this information as well.

Good luck.

[Lacey_ in reply to Drls]

Thanks I didn’t realise there were these other options.

[Joolsg in reply to Drls]

That makes sense. But most doctors recommend 1000mg infusions- hence the £800.Hope it works.

[Niewiem in reply to Joolsg]

I had in australia, was like 150 aud.dollars

[Ced60]

I had an iron infusion on the NHS at Salford Royal arranged by Dr Murphy

[Niewiem]

I wish I knew what NHS is....google: National Honor Society

[SueJohnson in reply to Niewiem]

National Health Service in the UK