Not so NICE guidelines.

[palmier]

The National Institute for Health and Care Excellence (NICE) has a page with "do not do recommendations". They recommend that b12 should not be tested unless a full blood count shows macrocytosis. Haven't they heard about the concern that folate and folate fortification may mask a b12 deficiency in the sense that enough folate may prevent macrocytic anemia so that macrocytosis is no longer a good indicator of a potential b12 deficiency?

Here's a link to the NICE Do Not Do Recommendation for b12 2020. It includes links to other do not do recommendations.

nice.org.uk/donotdo/tests-f...

"Tests for vitamin B12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis."

No wonder b12 deficiency diagnoses are missed and people develop associated neurological damage.

People today eat so much folate because of "five a day", fortification and multivitamins. How come they don't take this into account?

[wedgewood]

Thanks for that info . That is shocking . What to do in the face of such medical ignorance from an NHS body which should know better ? It leaves me utterly speechless ! I wonder if our Chairman , Martyn Hooper , knows about this ? I thought that it was a medical fact that patients could have P.A. without having macrocytosis . Must get hold of N.I.C.E. What a name to have !

[Survivorette]

Meet me on private Signal to discuss? If so let me know so we can give you phone number.

This is new.

[Gambit62 Administrator in reply to Survivorette]

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HU provides a chat facility if you want to contact someone outside of a post. This is not moderated in the same way as forums are, so I would recommend that you use this functionality with caution and do not share any personal details via chat either.

[Survivorette in reply to Gambit62]

Don’t know how to find private messaging here.

Offered to talk on private channel to help us all. I believe Signal is truly private.

[helvella in reply to Survivorette]

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[fbirder]

I see that recommendation is only for people with a possible diagnosis of CFS/ME.

Which means it’s still bad because so many of us with a B12 deficiency get misdiagnosed with CFS/ME.

[Gambit62 Administrator in reply to fbirder]

They are also from 2007 - before the BCSH guidelines were updated to recognise the limitations of serum B12 testing.

Unfortunately the processes for updating guidance on NICE is disjointed, so I'm not surprised that a reference to guidance/guidelines on another disorder hasn't been updated for changes in relation to B12 disorders.

[palmier in reply to Gambit62]

It acually says "© NICE 2020" at the bortom of the page, so it certainly looks more recent.

[Nackapan]

Needs addressing. Well done for bringing it to everyone's attention

[Marymary7]

This exact thing happened to my brother. Very low b12 but doctor just gave him folic acid which just made the damage continue. Mixed in with M.S. (Multiple Sclerosis )I don't think anyone knows what is actually going on. It's disgusting.

[Sleepybunny]

Hi,

PAS (Pernicious Anaemia Society) are trying to persuade NICE to produce guidelines specifically about PA.

pernicious-anaemia-society....

NICE guidelines on ME/CFS are mentioned in this blog post about misdiagnosis of B12 deficiency as ME/CFS.

martynhooper.com/2018/02/10...

NICE guidelines on MS are mentioned in this PAS news item which mentions misdiagnosis of PA as MS.

pernicious-anaemia-society....

[Sylvia22]

Just read the article and as far as I can see it is stopping supplements which could help unless people pay for them theirselves. Just another money saving scam. Same with blood tests.

[fbirder in reply to Sylvia22]

No it doesn't say anything at all like that.

It erroneously assumes that a B12 deficiency must, by necessity, be accompanied by macrocytic anaemia.

Hanlon's Razor applies - "Never attribute to malice that which is adequately explained by stupidity."

[Hoxo]

I’m sure I’ve read that 20 or 25% of people with B12 deficiency have normal MCV?

[Cherylclaire Forum Support in reply to Hoxo]

........... more than that, Hoxo :

In Martyn Hooper's latest book( "What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency") he says that macrocytosis (enlarged red blood cells) occurs only in around 60% of cases.

He then provides 4 quotes from relevant research, one of which likens the requirement for megaloblastic changes to be present for a PA diagnosis to only diagnosing liver disease if jaundice is present !

(Carmel R.)