Not so NICE guidelines.: The National... - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,984 posts

Not so NICE guidelines.

palmier profile image
15 Replies

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?

Written by
palmier profile image
palmier
To view profiles and participate in discussions please or .
Read more about...
15 Replies
wedgewood profile image
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 profile image
Survivorette

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

This is new.

Gambit62 profile image
Gambit62Administrator in reply toSurvivorette

Please note that you should be careful about sharing personal details. Feed from HU is available publicly - though you can avoid a post appearing on this feed by selecting the private option before posting.

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 profile image
Survivorette in reply toGambit62

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 profile image
helvella in reply toSurvivorette

How do I compose, delete and report private messages?

As well as writing and responding to public or community posts, HealthUnlocked members can also send private messages to other users.

You can send a private message to another user both from your inbox and from their profile.

Sending from your inbox:

1. Click "Chat" on the top menu. Alternatively, click here to access your private message page

2. Click the "Compose" button in the top right-hand corner of the page

3. In the "To" box, type in the username of the member you want to message and select it from the drop-down menu. You can add up to 20 recipients for each message

4. Type in your message!

5. Once it is ready, click the “Send” button

Sending from a members profile:

1. Go to the profile page of the user you want to message. You can do this by clicking on their name beside any of their posts or comments

2. Click the "Message" button on the right hand of their profile banner

3. Follow the steps for "From your inbox" from step 4

Reporting private messages:

If you receive a private message you believe to be spam or that is abusive, please report it to us by clicking "More" at the right-hand corner of any private message sent to you.

This will produce a drop-down menu; select the “Report” button and an email will be sent to the administrators of your community, and to our Help Centre, for us to investigate.

Deleting private messages:

To delete a message from showing up in *your* messages inbox, click "Chats" and select the message that you want to delete. Click on “Delete” and the message/s will be deleted. You can only delete the entire conversation and not single messages.

This does not delete your messaging history with that user. Please note that selecting “Delete” does not remove the message from the other user’s inbox, and does not prevent them from seeing the message. When you send another message to the same user, your entire message history will once again be shown.

If you have any questions or experience any issues with this article, please contact us below!

fbirder profile image
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 profile image
Gambit62Administrator in reply tofbirder

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 profile image
palmier in reply toGambit62

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

Nackapan profile image
Nackapan

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

Marymary7 profile image
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 profile image
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 profile image
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 profile image
fbirder in reply toSylvia22

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 profile image
Hoxo

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

Cherylclaire profile image
CherylclaireForum Support in reply toHoxo

........... 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.)

Not what you're looking for?

You may also like...

Burning Mouth Syndrome?

Hello, My first time here, searching for help and info. I have what seems to be "burning mouth...
minxabroad profile image

Am shocked to read that NICE ( National Institute for Clinical Excellence ) states that neither B12 or folate should be tested

Unless a full blood count indicates Macrocytosis. But I thought that it’s a fact that you can have...
wedgewood profile image

New BSH guidelines vs NICE guidelines

I went back to my GP today with the new guidelines from the PA Society. She said she'd never heard...
AmyG6500 profile image

Low ferritin, vitamin d deficiency and 'grey area' B12

I've just had the results of Friday's blood tests back (the IFA test is not back yet, but I had...
rebs48 profile image

Help and Guidance with blood tests results

Hi everyone, Need some help and advice before I see my GP on 12 January. These are the results:...
JGBH profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.