Blood results

[Islay9]

Blood results from the local NHS neurologist say:

“Iron level 22 falls within normal range”

Is this ferritin?! This was after 2 weeks of being on ferrous fumarate and it was 24! 🙄🙄🙄

I know the levels should be over 100 at least as per Mayo. 😡

Transferrin Saturations 26%

Transferrin level 3.4

He wants to change my tablets to ferrous sulphate 200mg x 2 then repeat bloods in order to get my Transferrin Saturations “up to about 45%”

Anyone know what these other numbers mean or should be?

And also is ferrous sulphate the right thing?

It’s so hard because I have to follow this pathway for now.

Thanks.

[SueJohnson]

Ferrous sulfate is fine. 24 may be ferritin. Ask him. If it is ask him for an iron infusion to quickly get it up as 24 is very low.

[Islay9 in reply to SueJohnson]

Thanks Sue. I already asked about infusions and they said they need to do tablets first.

What’s concerning is he is saying 22 is normal 😭

[Joolsg]

There are 2 tests. Serum iron and serum ferritin. Many doctors don't ask for ferritin. That's the number you need. And as you discovered, tests always say 'normal' but RLS numbers have to be higher.

[Islay9 in reply to Joolsg]

So this was a “full iron panel” as opposed to just ferretin which is what I’ve been getting from GP. I wonder what the difference is between it and serum iron. My ferritin from my recent GP blood test was low at 24.

It’s like pulling teeth!

[Joolsg in reply to Islay9]

Tell me about it! A neurologist should get off his backside and at least look up NHS & NICE guidance which clearly state serum ferritin should be above 75ųg. That's very Conservative and the top US experts want to see levels above 100ųg, preferably 200ųg.So your neurologist is actually negligent in not looking up the UK guidance on RLS!

The ONLY UK doctor I trust is Jose Thomas in Wales. He stopped prescribing dopamine agonists 10 years ago, does his own research and travels to Sleep conventions in USA. He is currently updating RLS treatment algorithms for the South Wales area.

I don't trust any UK neurologist. They're all still dishing out DAs and switching patients suffering augmentation to the Rotigitone patch.

It has to stop!

[DicCarlson]

My Ferritin was 49 with raging RLS - docs said nothing to see here! Raising it to 105 with Ferrous Bisglycinate. Normal is a huge range and that's what they see. Article on iron status...

bloodtestsresults.com/iron-...

[Islay9 in reply to DicCarlson]

Yes, mine has been bad when it’s been at 100 before.

Great link, thank you!