Hello all,
I am seeing my doctor tomorrow morning about my very bad nights during the hot, humid weather
I would appreciate any advice on the best way to ask him about contacting the local hospital about having an iron fusion.
Thank you
Kind regards,
William Henry
I know that Joolsg has previously recommended asking your GP for a referral for an iron infusion, noted a couple of hospitals known to provide, and linked to an article supporting infusions for RLS.
Unfortunately some NHS Trusts will only give iron infusions against a diagnosis of anaemia rather than RLS.
If you get pushback, you might also reference this article in Sleep Medicine which concludes:
"Both the evidence-based conclusions and the clinical consensus indicate iron should be one of the options for first-line treatment for RLS. Oral iron treatment will often be the first choice. IV iron should, however, be considered whenever serum ferritin levels are too high for oral iron absorption, when oral iron is not tolerated or contraindicated, or when there is an inadequate response of serum iron levels to oral iron."
sciencedirect.com/science/a...
BTW, does your doctor understand that a 'normal' serum ferritin level can be inadequate for an RLS sufferer?
The quoted 'normal' range used by some doctors can be anywhere upwards of 15µg/l for men, but the majority of RLS sufferers need figures in excess of 100µg/l - preferably nearer 200 - after a fasting full iron panel. This doesn't guarantee no RLS, but it helps the majority.
If you can't get anywhere near these levels after prolonged oral iron supplementation, as Sleep Medicine says an infusion should be tried.
I wrote direct to St George's in Tooting, with copies of research articles. They were intrigued, having never given an infusion for RLS before. They held a team meeting and agreed. I then asked GP for official referral.My ferritin was 145 and went up to 785. I didn't respond at all. 3 people have since had infusions at St George's but they will only do them for local residents now.The Royal Cornwall in Truro and Sheffield hospital have given infusions for RLS.
Hopefully your GP and local hospital will agree.
I have just had a private appointment with a neurologist who has said he will recommend an iron infusion and and will write to my GP saying so and indicating how my GP needs to proceed. He is of the view that most hospitals should be able to do it although as above it feels like not all hospitals have the same view. The appointment was yesterday so I don’t have the letter yet and I don’t know how it’s going to work out but I will keep this forum informed.
The problem, here is that most haematology departments will not give you an infusion because your iron is probably in the “normal“ range, but for RLS, it has been found that it needs to be “supranormal”, which was the phrase my neurologist used. The normal range is 16-250 µg/L (micrograms per litre) and has Joolsg has indicated above it needs to be much higher, hers went up to 785 µg/L.
Brain iron vs Blood iron
Iron & levothyroxine.
Iron in the Brain not in the Blood
Iron Infusion coming up
Iron Infusion in the U.S.
