iron clinic - transfusions

[Drls]

hello - has anyone accessed an iron transfusion via the Harley street iron clinic? Despite all my other iron readings being fine my ferritin level remains at 56 …. I have tried repeatedly to access a transfusion via the nhs but to no avail - has anyone had experience of going privately via this London clinic?

thanks Dawn

[SueJohnson]

That is the one that Joolsg suggests. I believe you need to bring them a copy of your iron results and it costs around £800

[ChilliChocolateLover]

hi there, yes I recently got an iron infusion through the Iron Clinic. I actually had it in Manchester as they have a clinic there too. It was a professional outfit and the prof who does the consultation and gave the infusion was very honest and said it may not work and I will need to wait 6 weeks to find out. He mentioned that his correspondence with RLS-UK had informed his practice

[Drls in reply to ChilliChocolateLover]

Thank you - I have two questions - was your iron all ok apart from your ferritin? And have you had any improvement in your rls since?

My ferritin is 56 - everything else is fine.

Thanks

[ChilliChocolateLover in reply to Drls]

Yes all the rest of my blood results were fine but my ferritin was 59. I only had my infusion last week and the dr said it would take 6 weeks before I could see if it has been beneficial. No benefit as yet

[ChilliChocolateLover in reply to Drls]

in terms of cost. I was charged £200 for the consultation (non negotiable) and £370 for the infusion. I had expected £570 for the infusion but he said that at my ferritin level, a lesser dose was required.

[Drls in reply to ChilliChocolateLover]

Hello , Chilli Chocolate Lover, do you remember the name of your Dr who gave you the infusion ? I am trying to book the initial consultation online …. The Dr that Jools suggested is not listed - I want to make sure I pick a Dr who understands about RLS and ferritin …. If you could remember that would be great -Dawn

[ChilliChocolateLover in reply to Drls]

Yes, it was Prof. Toby Richards, The Iron Clinic, 101 Harley Street, London. Phone [phone] or you can email [e-mail]. Good luck

[Joolsg in reply to Drls]

It's Prof. Toby Richards. I've spoken to him & know at least 2 people who have had their infusions at his clinic.

[Joolsg]

Bear in mind that iron infusions do not work for everyone. I had mine in 2018 on the NHS at St George's in Tooting.There are theories that years on dopamine agonists cause permanent damage to dopamine receptors. Healthy receptors are needed to uptake iron in the brain.

[Drls]

yes I know it might not work - I was only on roprinirole for about six months I think ( it’s a while ago now) but I know it’s a gamble …. So only time will tell