Hi , I had an iron infusion In September and recently had my levels checked they have improved but not sure whether they would be considered high enough now for RLS ?
My results pre and post infusion are
Serum Iron
Pre infusion 10.1 umol/L
Post infusion 17.8 umol/L
Serum Transferrin
Pre Infusion 2.36
Post infusion 2.11
Transferrin Saturation
Pre Infusion 17%
Post Infusion 34%
I would be really grateful for any advice re these levels ?
They look OK, but what was your ferritin which is the most important measure?
We need serum ferritin as well. Serum iron needs to be above 60.What formula did you have and what dose?
The Mayo suggests repeat bloods and, if levels are still low, as yours are, a repeat infusion.
Ferric carboxymaltose is the most widely used formula, usually given in one dose of 1000mg.
Sorry serum Ferritin had gone from 70 to 225 - I think it was CosmoFer , it was a slow infusion which took around 7 hours
cochranelibrary.com/web/coc...
Cosmofer was one of the formulations used in the above Cochrane Study.
Cochrane is regarded as the Gold Standard of research articles. If a study makes it into Cochrane, it has to be reviewed extensively.
The studies all used 1000mg infusions.
If you don't feel an improvement, then you should push for another infusion.
I know some people do not see any benefit until their serum ferritin is above 300.
thanks Joolsg , I think that’s what I will do , I do have some improvement after the infusion and starting Buprenorphine but still far from eliminated.
What dose of Buprenorphine are you on?
plus give it time to work - sometimes up to 8 weeks
Morning. Hope you slept ok. I see you are in the UK. Can I ask if you had an NHS transfusion or did it privately? My ferritin level is 48 after months of oral iron but am struggling to get infusion on NHS.
Have a great day x
No it was on the NHS . I paid to go and see a consultant privately after having been on the NHS waiting list for over a year … things then happened really quickly through the NHS.
That’s very interesting. Glad you got some help. Do you mind me asking which hospital it was? Like others I’ve found it almost impossible to get an infusion.
Ahhh interesting. I am calling GP again today. I was thinking of going private. Maybe I’ll mention it and see if it gets the ball rolling 🤞 Thanks
I’m in Stockport but my GP referred my to Salford Royal and I saw a consultant from there at the Alexandra in Cheadle privately and then went back through the NHS and had my iron infusion at Salford Royal . I didn’t have to push for it at all it was his suggestion.
That is very helpful to know. Very slowly, word is spreading that iron infusions help RLS. There are a few 'pockets' throughout the UK where doctors and haematologists are up to date and aware of the link between RLS and low brain iron.We will need all these doctors to speak up for us when NHS & NICE guidance are updated.
I can highly recommend the consultant I saw if anyone is the North West.
Definitely name him as Kaarina, the moderator, can then add him to the 'good' doctors list. We have far too many on the bad list.
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