Update on neurology appointment

[Islay9]

Saw the local consultant here in Aberdeen (not a RLS specialist) had a thick pile of paperwork, journals etc to give him.

However, these were not needed (yet!) I gave him my last week symptom severity scale and monitor (from RLS-UK.ORG) which he will scan into my notes and encouraged me to bring new ones next time for comparison.

He looked at my iron tests for the past 4 years and saw there has been no consistency or following up after treatment etc and only ever measured my ferretin so decided to start there.

Took my bloods there and then (unfortunately not fasted of off my new iron regime of 1 x 210mg ferrous fumarate but he knew that. Has said he will get GP to up the tablets to 3 times a day (as I had had before) and add in vitamin C and then recheck bloods.

It wasn’t appropriate to bring up Buprenorphine at this time but I will next time if things haven’t improved. I told him I wasn’t going to take DA’s and apparently it says that in my GP notes so wasn’t surprised (or bothered by it).

So back to the start we go. 🤞

I would love it if this was the cause because then we can address it accordingly.

I feel stupid knowing what I know now about iron that I didn’t pursue that more or insist my GP did follow ups, but it is what it is. One of the reasons I let it go at the start of my journey was because I was still getting symptoms despite my ferritin being at 100. Anyway, you live and learn.

Thanks all for your continued support and guidance. X

[SueJohnson]

There is no advantage to taking iron 3 times a day as when you take iron, hepcidin is released which prevents you from absorbing any more iron for the next 24 hours.

Since you didn't stop taking your iron tablets before the test the results will show your ferritin higher than it really is.

[Islay9 in reply to SueJohnson]

Yeah, I’ll be interested in seeing the result compared to last month because of that.

[Simkin]

Sounds as if he was very thorough.