doctor who treats with i/v iron first?

[daisydaisy26]

Dear all, I remember one of the members mentioning here a doctor who uses i/v iron as first-line treatment, can you please remind me their name? Would be interesting to try to arrange a consultation with them or maybe read their papers if any are available online. Thank you to everyone who provides information here all the time, I appreciate it so much - if not for this forum and help of several members, I wouldn't know that i/v iron was an option. I have a feeling everyone could just try oral iron (my mother who is an RLS sufferer can't tolerate it because of GI issues) if it is available OTC, maybe it won't work in 100% cases, but if it works in 50-60% cases it's worth a try.

[Kaarina Administrator]

In June 2023, username joolsg recommended Dr Jose Thomas (NHS/Private) who treats with iron infusions first. He does phone consultations. He is based at Gwent Sleep Clinic/Spire Cardiff.

A Dr Sarah Jackson, neurologist at Royal Devon & Exeter hospital has also been recommended by a member of the forum but unfortunately I do not have their username. Apparently she recommended a patient's GP to arrange an iron infusion to be done quickly on the NHS. Hope that helps.

[Madlegs1]

IMHO I would be inclined to look at other factors before going for iron supplementation.First , a blood test needs to be done.

Then check for medications that might be triggering the RLS.

Such as antihistamines, antidepressants, statins and many others.

Also check foods, such as msg, high salt intake, inflammatory foods and most processed products. Keeping a food diary is a must.

Then -- by all means look at iron supplementation, with medical oversight, if serum ferritin is under 100.

[Joolsg]

Kaarina is correct. Dr Jose Thomas eliminates triggers first ( caffeine, alcohol, meds), treats sleep apnoea ( apparently many RLS patients also have sleep apnoea, & treatment lessens RLS). He will then treat iron deficiency with infusions, if needed, before prescribing RLS meds.

Having spoken to him at length, he's the first UK doctor I've come across who is fully up to date on RLS. He is aware of the Mayo algorithm and hasn't prescribed dopamine agonists for over 6 years because of the high rates of augmentation.

[Edengirl58]

Hi Daisy- Newcastle Foundation Hospital Trust (Freeman hospital) are using iron infusions if needed as first line treatment. They have mentioned dopamine agonists to me too though, as a possible treatment further down the line if needed, so just be wary of that. So they are partially up to date I guess.

[Munroist in reply to Edengirl58]

Hi, when you say they give iron infusions “if needed” does that mean only if you have low iron? If you had normal iron levels (normal for non-RLS) do you know if they would still give an infusion to take you above normal levels of ferritin e.g. 200-300 µg/L

[Edengirl58 in reply to Munroist]

yes my ferritin was 37 so classed as in the normal range ie not anaemic and the iron infusion took it to about 230. When I went for the infusion at RVI, the nurses asked if I was having it for RLS so it seemed to be standard practice to give them if iron levels were low in RLS terms

[Munroist in reply to Edengirl58]

Thank you very much. That’s great. In your first post you mention the Freeman Hospital, and then in the reply you said you had the infusion at the RVI (Royal Victoria Infirmary), could you please confirm that’s correct? Newcastle could be an option for me if my GP struggles in Nottingham although I’ve heard some hospitals don’t like looking after patients outside their area. Thanks again.

[Edengirl58 in reply to Munroist]

Yes that’s right- they are both part of the same trust so I see neurologists at the Freeman but RVI iswhere they give the iron infusions.

[Munroist in reply to Edengirl58]

Thank you very much

[Sunflower197]

My ferritin level was 7. My GP said that an iron infusion would not help because I’m not anaemic and I’m a neurology case and not haematology!. This goes against what has been said on here 🙁 Anyway I was prescribed ferrous fumerate which I have been taking for about a week and I am noticing the difference already. My gabapentin was increased from 300mg to 900mg as well. I was taking the increased dose for a couple of weeks before the iron and hadn’t noticed much difference but since the iron it’s been a game changer.

[DesertOasis in reply to Sunflower197]

Yes, the iron should be a game changer and you’re what I call an immediate responder. There’s no way you can raise your ferritin enough in one week to substantially improve your RLS. So what you’re doing is raising your “serum iron” on a day to day basis which is doing the trick rather than your ferritin. Your case is very similar to Sher78. Like you her ferritin was around 7 (or 17???) and she was prescribed ferrous fumarate 2x a day by her doctor. It helped her from day one. We suggested once a day to her but she continued on with 2x a day. About 2 years in she comes back on with complaint of early morning RLS awakening. We once again recommended only a night time dose and that seemingly has done the trick.