Iron infusion help please

[Jumpey]

Hi , I would like to request an iron infusion and want to be armed with the research on this for RLS.What is the best research article that any of you have used to obtain a referral? I would appreciate some suggestions.Thanks.x

[SueJohnson]

the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[Jumpey in reply to SueJohnson]

Thanks do much Sue.x

[Joolsg]

These are the articles I used to persuade St George's in Tooting to give me an infusion.

sciencedirect.com/science/a...

sciencedirect.com/science/a...

And a more recent case study from the Royal Cornwall Hospital

ncbi.nlm.nih.gov/pmc/articl...

I sent an email and attached the articles to the haematology department. They called and agreed the evidence was compelling and asked me to swnd a GP referral letter.

I had the infusion in 2018 and serum ferritin went up to 785. I'm in the 20% that shows no response.

But the odds are in your favour.

[Jumpey in reply to Joolsg]

Cheers Jools.Really helpful.x

[SueJohnson]

P.S. They will need your ferritin level to show you really need it.

[Hidden in reply to SueJohnson]

I had 5 infusions, bringing my ferritin over 400 (didn't help). I went to a cancer center and the doctor there lied to my insurance company, saying I was anemic and that I needed the infusions. I think they mostly do that: say you're anemic when you aren't in order to proceed with the treatment.

[Jumpey in reply to Hidden]

I'm so sorry it didn't work for you. X

[Hidden in reply to Hidden]

Hi Fancy, I believe for those receiving infusions they need to shoot for 600. At 400 we have the same amount of brain iron as a non-RLS person who has a ferritin of 0. This is based on tests of cerebral spinal fluid. At 600 we have the same amount of iron in our brain as a non-RLS person with Ferritin of 100. So 600 seems the way to go. “Go heavy or go home” as they say in the world of weight lifting. See graph in this link about mid-way down

sciencedirect.com/science/a...

[Hidden in reply to Hidden]

This might make life easier

How high our serum ferritin has to be to have the same amount of brain iron as a non-RLSer

[grassgree in reply to Hidden]

Yes, that's the problem. I was told that an iron infusion couldn't be done for RLS because Medicare won't cover it and the hospital won't proceed without insurance coverage. I worked with three different doctors, showing them the Mayo study and all, but it was no go.

[marsha2306]

Look up Dr. Christopher Earley at Hopkins. He is an RLS expert and huge proponent of iron infusions. I’m having one later this month.

[Jumpey in reply to marsha2306]

Good luck.x

[marsha2306]

Thanks. I had one a few years ago. It brought my ferritin up to 650. Helped for a while.