Has anyone seen this yet? Could be beneficial, maybe.

[Espeegee]

thepharmacist.co.uk/clinica...

[Alanna012]

I'm confused. Was it not in guidelines before🥴 How wasn't it in guidelines considering the wide range of symptoms arising from B12 insufficiency?

Gp's weren't recommending B12 supplementation before?

Mine never have, and I've always tested privately but I assumed that was because my GP's are less on top of things.

[helvella Administrator Thyroid UK in reply to Alanna012]

There are no NICE guidelines for B12/Pernicious Anaemia.

This is the draft of the very first such guidelines.

There is a Clinical Knowledge Summary

Anaemia - B12 and folate deficiency

cks.nice.org.uk/topics/anae...

But a CKS isn't a full NICE guideline.

[Espeegee in reply to helvella]

And of course they are guidelines not directions so GPs don't have to action them.

[Alanna012 in reply to helvella]

Thank you for explaining. But I'm still very surprised that there were no NICE guidelines for pernicious anaemia!

[helvella Administrator Thyroid UK in reply to Alanna012]

There seems to have been a tendency for NICE to get involved in new things - new medicines, new procedures, etc. Where, obviously, there will be nothing to go on.

So NICE gets told to create some guidelines. Which, in itself, is reasonable. But vast numbers of "older" things, even those with large numbers diagnosed, like thyroid disease and B12/PAS remained unaddressed. Consider thyroid:

Thyroid disease: assessment and management

NICE guideline [NG145] Published: 20 November 2019

nice.org.uk/guidance/NG145

That is less than four years old.

I'm not really wanting to defend the situation - which is awful. But point out that decisions have some rationale even if we disagree.

(But don't get me started on the waste of time and money producing poor quality guidelines in every tin-pot establishment across the country. All different enough to confuse. None with real authority. And often in conflict with those for neighbouring organisations and up and down the scale.)

[jade_s in reply to Alanna012]

There are guidelines/recommendations from the British Committee for Standards in Haematology (BCSH) stichtingb12tekort.nl/engli... / onlinelibrary.wiley.com/doi...

and the British National Formulary (BNF) but I can't link to it, not being in the UK I can't access it .

I never realized NICE was altogether something different.

[helvella Administrator Thyroid UK in reply to jade_s]

The BNF is, really, very much an aide mémoire (or crib sheet!) for doctors and nurses. It has its place and can be a useful starting point, but on any individual subject it can be very thin indeed.

NICE was set up to be the over-arching body and has a status which makes it very important.

The BCSH guideline is available here:

b-s-h.org.uk/guidelines/gui...

But it is from 2014. Which was around when Active B12 test was just becoming available (though rarely within the NHS).

[Alanna012 in reply to jade_s]

I see, thank you, that makes sense that there were B12 guidelines for doctors somewhere, although they are perhaps without much substance. It's really surprising NICE have only started drafting guidelines themselves...

[Jaydee1507 Administrator]

That will help but they also need to adjust the reference range for B12.

[humanbean in reply to Jaydee1507]

I agree.

I first took a supplement containing high dose B12 in about 2010, but I had never been tested as far as I know. I just knew that some of the symptoms I had might be caused by B12 deficiency and that B12 was considered to be safe in high doses and at high levels. But the B12 I was taking was cyanocobalamin and it never made me feel much better, because this was before I got involved in looking at my thyroid and found out about the different types of B12.

I don't have a result for B12 until 2012 and it was over the range.

I started taking methylcobalamin for the first time when I started getting interested in my thyroid in roughly 2013.

It had an amazing effect.

I had had spots since puberty and they never went away, which is embarrassing when you're a teenager, but even more embarrassing when you are middle aged. The spots got worse temporarily after starting the methyl-B12 but then they got better and they have stopped being a problem ever since.

I also developed eczema as I was approaching puberty and sometimes it was very severe. It did improve as I got older but it never went away completely. Then I took the methyl-B12, and again it got slightly worse in the early weeks and then got better than it had been since before it developed to begin with, and most of the time is now completely gone.

Just a few days ago I happened to see a video of a doctor who warned people about the side effects of taking B12 - and one that he mentioned was spots. I wonder how many people give up B12 before they have topped up their reserves because of spots not realising that with persistence they might go away completely.

If people rely on B12 reference ranges then I imagine lots of people never top themselves up enough because they ( the ranges) are so low.

I still take methylcobalamin but not every day. If I stop taking it for a few weeks I get mild attacks of spots and eczema.

[SlowDragon Administrator]

methylmalonic acid (MMA) should be used to confirm diagnosis, if initial testing is inconclusive.

How many people ever get offered MMA testing!

Many GP’s don’t even know what test that is

Still ….it’s a step in the right direction

[Espeegee in reply to SlowDragon]

I've not been offered it despite my B12 slowly dropping and having 2 female family members with PA. I paid for one myself but misread the instructions so I can't be sure the results were accurate. It had to be sent to Germany for testing and it wasn't cheap, of course.

[SlowDragon Administrator in reply to Espeegee]

was it via Medichecks

medichecks.com/products/met...

[Espeegee in reply to SlowDragon]

Almost certainly but I can't 100% be sure.