Does anyone know how can I access an iron transfusion?

[Drls]

Hello,

My last ferritin level from a blood test in September was 73, since that date I have had a Tia ( mini stroke) and then when the medication given for that put my rls through the roof I was so sleep deprived I fell and broke my foot in three places…. I still can’t walk properly.

Things have been grim…

I started taking ferrous bisglycinate every other night but with the many tablets I currently take it is hard to fit it in… I feel I need an iron transfusion. I spoke to one of the gps at my surgery and they said to approach the private sector…but I don’t know where to start!

can anyone help?

I’m now on Targinact 15 mg ( a 5 and a 10) in the evening ( not in the day) plus I’m still on 150mg pregabalin which seems to help with the terrible withdrawal I get from the Targinact. It’s not great but a lot better than no sleep whatsoever which is what I was getting before.

Can anyone help with info about getting an infusion?

Thank you everyone - it’s terrible that so many of us suffer so much with this, it is truly terrible ! Best wishes to you all.

[ChrisColumbus]

I believe that you are in the UK (your profile doesn't say). Some NHS Trusts will only provide iron infusions for anaemia, not for RLS. Don't know about Private...

Joolsg : can you offer any advice?

[ChrisColumbus in reply to ChrisColumbus]

PS: just noted that 'The Iron Clinic' in London offers consultation plus treatment for £770. I don't know anything about the clinic, nor whether this is competitive, nor whether treatments are widely available privately 🙁

[Drls in reply to ChrisColumbus]

thank you, that’s very helpful ! I’ll look into that ( and yes I’m in the UK)

[SueJohnson]

Have you had your ferritin checked more recently than September?

[Drls in reply to SueJohnson]

No - the nhs surgery in the UK will not do it again as far as they are concerned it was ok. From all the info from the US I gather it would good to get it nearer to 200… and I really do need to get some control over my baseline rls - I doubt it’s raised much from then, I haven’t been taking the ferrous biscynarate -,I only managed it for a while, so I think it’s worth a try …..

[ChrisColumbus in reply to Drls]

Lack of iron might not be your problem. Admittedly your ferritin number isn't ideal (for RLS sufferers). But not everyone who has low-ish ferritin suffers, and not everyone who boosts their ferritin stops RLS.

My ferritin levels have always been high, but I still had RLS until I started supplementing with magnesium citrate and cut back on diet drinks and sugary foods etc. It was then pretty much under control.

This was until my own TIA, when a prescribed statin sent RLS through the roof. It was only when I came off this - after arguing with medics - that my previous regime worked again.

I'm not arguing against an infusion: it reportedly can help. But if not available on the NHS it could be an expensive experiment.

[Drls]

Hello Chris, I know it might not help, however it might just help a bit which might be enough to help me move forward. For about six weeks before Christmas I took everything out of my diet - caffeine, sweeteners, sugar, dairy, wheat and for about 95% of the time meat and fish. I lived off of vegetables, pulses, rice and fruit and sone ‘free from’ food. It didn’t seem to make my rls better at all! Plus with a broken foot i haven’t been able to go for walks which was always my saviour before.

I’ve tried magnesium - and many other things - nothing has helped significantly.

Since my ferritin is low I think trying to get an infusion is worth doing…… I’ll post it im successful!

[ChrisColumbus in reply to Drls]

Good luck (both with finding a good convenient place to have it done and with the treatment itself)

[DicCarlson]

This came up in a search...

ulh.nhs.uk/services/acciden...

[Munroist]

I think Yeovil will do them on the NHS if you are referred by a neurologist but this page also shows you can go private. I’d have a good look round their site. Even if you do have to pay for the first one, if you found it worked, then I can’t see how your local GP could refuse further infusions as and when your iron levels dropped back again.

yeovilhospital.co.uk/privat...

[Drls in reply to Munroist]

yes thankyou - I think it’s worth a try

[NonnieJ]

My ferritin went down to 7 and my doctor referred me to Haematologist at Hosp where I had an infusion, that was two years ago and it definitely helped.

Several years before that I had an infusion prior to an op, having no idea at that time that it would help my RLS.

However when my level was going down again I asked my G.P if I could have another one. She was sympathetic and referred me to the haematologist again but he refused.

It's around 70 now but evidently on the way down.

It is so frustrating when apparent experts in their field are still ignorant of vital facts.

I have now moved house away from my wonderful GP practice and my surgery is not manned properly, just a different locum each day, if at all, and there is no one to fight for me.

Why is there such ignorance of RLS in medical fields. As most , but definitely not all, sufferers struggle mostly at night, is it that doctors don't find a daytime surgery full of people with jumping legs waiting for appointments.

Nonnie J.

[Drls in reply to NonnieJ]

That is such an interesting argument! If my legs did consistently in the day what they do at night my GP would be shocked because they jump and fling all over the place. I just think the UK is so far behind in this area we can’t even get basic care because not many practitioners really know about the condition - I hope you find a GP locally who is at least sympathetic.

[NonnieJ]

Thank you. I hope that you can get some help too. When I had the infusion it worked wonderfully well. Such a simple thing.

[Drls in reply to NonnieJ]

thankyou it’s good to know it did work for you. I first had chronic rls when I was pregnant 31 years ago and my iron was low so even from that I would assume it would help to have a higher iron level.

[DataRN]

Please keep in mind that iron infusions are only effective for treating RLS symptoms for approximately 50% of patients. Sometimes this forum makes iron infusions seem as the holy grail for RLS treatment when in reality they are only beneficial for about half of those who receive them. They are worth a try but not necessarily the answer for all.

[Biscuitface]

I' waited 2 years for an iron infusion. Eventually having it this week. My local hospital would not allow me to have the iron infusion that my gp requested as my ferritin was in 50s. However Professor Walker kindly arranged for me to have the iron in London. I'm now waiting for it to start to show results.

[Biscuitface]

HiI am also in the UK. My doctors have been telling me for 3 years they were unable to refer me for an iron transfusion as the local hospital did not do these. However my Neurologist wrote to the gp and suggested they refer me to Gastroenterology. The consultant there had no problem ordering a transfusion which I had a week later. He has also arranged for me to have an iron transfusion every 3 months from now on without seeing anyone first. I hope you too manage to get one