Ferritin Levels

[Jimbo77]

Hello all. I have just visited my neurologist to review my ferritin levels. I was at a 99 ng/ml. She is under the impression this is adequate. I explained that I had read on here that RLS sufferers have experienced relief with levels closer to 250-300 ng/mls and she said she did not see a benefit from that. Does anyone have any supporting documentation that I could send her to possibly change her mind? Thank you in advance 😊

[Hidden]

This may be of some help

sciencedirect.com/science/a...

[Jimbo77 in reply to Hidden]

Thank you Manerva.

[YodaDog in reply to Jimbo77]

You're lucky in one aspect in that I think that report says that IV iron is not recommended for those with ferritin levels of 100 or higher. I've been considering asking for IV iron but the last time I was tested I was at 137. Good luck.

[Netball-50]

This is not giving me much hope for my neurologist appointment on the 24th Feb 🙈 any questions u should b asking them I will mention ferritin levels but anything else? People on here more knowledgeable probably thank you. Thanks to you lovely people I took my gabapentin at night 900mg still with half a pramipexole 0.088mg darent go down to 1/4tab just yet but seem to bit better fingers crossed. I ♥️ this forum xx

[Graham3196]

The problem is that the only document is apparently the one from the IIRLSSG.

You need to ask the doctor to consider the information from Doctor Buchfuhrer and the Team at Johns Hopkins Hospital in the USA. From what I have read it appears that Doctor Buchfuhrer's ideas are based on Johns Hopkins work so its really only one source. Its easy for a GP to dismiss Doctor Buchfuhrer as an internet "quack" however much we respect his opinions and experience. Johns Hopkins seems to be more believable because of the size of the organisation and their long and broad history of research.

There is a lot of confusion about the safety of IV. It is a very common procedure for a variety of patients without RLS, mostly they can be described as anemic by some definition. Most of the GPs I spoke to about this when I was looking for an infusion could not say what the danger was of an infusion if you are otherwise healthy. One said that he would not like to go above 1000 but couldn't foresee any specific problem. Just a feeling of unease about aiming so high. In other words it was against his professional judgement. You can say the same thing about any doctor who refuses to prescribe an IV and we pay for their opinion. That's why you might ask for a second opinion of search for a doctor who's opinion you respect. Most of the hundreds of anemic patients raise their ferritin level very quickly with no ill effects.

In the end the dangers these GPs suggested were the routine risks of any intravenous injection such as infection or misplacing the injectant.

You have to balance the apparently very low risks of an IV against the considerable risks of living with RLS. For me this is no contest.

[Jimbo77 in reply to Graham3196]

Thank you Graham. I really appreciate the response.