Positive NHS Neurologist Appointment (IV Iron)

[Islay9]

Saw the neurologist yesterday, 6 months since first appointment when he put me on ferrous sulphate 200mg x 2 which I’ve been taking at night with vitamin C.

Whilst my symptoms have improved (38 to 24 on the RLS UK rating scale) this is most probably due to other changes I’ve made (dietary, will do a separate post at some point).

Blood test results: (annoyingly no ferritin done despite me specifically asking for it!!!)

Sept ‘24

Iron 22

TSAT 26%

Transferrin 3.4

Dec ‘24

Iron 15

TSAT 20

Transferrin 3.0

Now March ‘25

Ferritin 40.9 (apparently last time was 24 but he told me didn’t have ferritin levels done?)

Iron 7

TSAT 9.6

Transferrin didn’t tell me

Also mentioned low phosphate?

So despite being on oral iron for 6 months & my symptoms improving the results are getting worse.

We discussed IV iron infusion yesterday and he was open to it if needed, so when he phoned with the results today he was happy to refer me & I should get an appointment in 3 weeks in our local NHS hospital. (2 separate infusions?)

He’s saying let’s trial it and see if it helps the RLS and if it doesn’t then at least we’ll know. But if my levels are that low does that not mean there’s something else going on?!

Anyway. I’m happy I’m able to get the infusion and fingers crossed 🤞 that will help.

[Joolsg]

It can take years to get serum ferritin above the recommended levels. I would push for the infusion.

Often there is no reason why our iron and ferritin levels drop substantially. It seems common in RLS.

Who did you see so we can add to the 'good doctor' list?

[Islay9 in reply to Joolsg]

Yes, I was very proud that I managed to advocate for myself to get it!

It’s Dr Graham A Mackay, Consultant Neurologist, Aberdeen Royal Infirmary. I’ve been “guiding” him with all my knowledge 😂

There was a 76 week waiting list 😭

[Joolsg in reply to Islay9]

Well done. If we all do that- it will help the next patient they see. But it's scandalous that we have to 'educate' the UK specialists.

[Islay9 in reply to Joolsg]

Agreed!

[teakabeagle in reply to Joolsg]

As well as their American counterparts! Still advocating for Medicare approval of Buprenorphine ( hearing with a judge next week)

[Joolsg in reply to teakabeagle]

Wishing you the best of luck with that. Every country seems determined to create obstacles to prevent RLS patients getting the most effective treatment.

[teakabeagle in reply to Joolsg]

So true. I have reviewed Medicare Part D outcomes for Buprenorphine. No cases for RLS. Approval rate only 20%. Reason for denial not having tried other treatment/ medications and lack of medical necessity. I wrote the appeal going over all the meds and treatments( which they already had) and how the sleep deprivation affected me. We shall see. Even if the deny I have two more levels of appeal, but at least RLS and Buprenorphine will be in the records.

[marsha2306]

Just be aware that it can take 6-8 weeks for the IV iron to help your RLS.

[Islay9 in reply to marsha2306]

Thank you for this! I must do a bit of reading up.

[marsha2306 in reply to Islay9]

Research Dr. Christopher Earley at Hopkins. He is a huge proponent of iron infusions. There are also you tube videos by him about thisl

[Islay9 in reply to marsha2306]

Thank you! I’ll have a look.

[SueJohnson in reply to Islay9]

Wait 8 weeks after the infusions before testing your ferritin again. Otherwise it will test higher than it really is.

[Islay9 in reply to SueJohnson]

Thanks Sue!