Help please: Just collating info fof my... - Pernicious Anaemi...

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Help please

Nackapan profile image
5 Replies

Just collating info fof my daughter b12 injections stopped.

BSH

Source i used to get info on no more testing needed once on b12 injections fot G.p

Now states this;

Dated 20/11/24

Please note that this 2014 BSH guidelines hzvd now been superseded by the NICE guidelines published 6 March 2024

But on thd NICE guidelines all i can find is ;

Para 1.6.10

Do not repeat the initial diagnostic test in people who are having IM b12 replacement.

Is that it ???

Seems open to interpretation.

IFAB diagnostic test or ehat?? serum b12???

Have I missed something ?

Seems para 1.6.5 does not state serum b12 as states .

Diagnostic tests as;

Homocysteine

Serum MMA

A vital source I used lost ??

Any help appreciated

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Nackapan profile image
Nackapan
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5 Replies
PlatypusProfit8077 profile image
PlatypusProfit8077

does the PAS have any documents you can use as a template?

Nackapan profile image
Nackapan in reply toPlatypusProfit8077

Thanks. Need to format this.BSH statement of ovef to NICE 2024 guidelines only thrown me as all so vague and all over the place in NICE.

Nowhere a clear sentence ;

No more b12 serum testing needed once on B12 injections .

So many G.ps look at high levels if test and stop all injections.

The information on NICE open to different interpretations.

Far too wordy for busy G.ps !!

As for nurses 'feeling ' all these b12 injections not needed.

HCA,s can do them !!

Please will they stop meddling on limited training and understanding.

G.ps often will trust their judgement and sign it off.

More NHS money wasted as admin and a gp appointment to reinstate !!

Not to mention tome lost time and anxiety to patient 🙃

PlatypusProfit8077 profile image
PlatypusProfit8077

in the advanced treatment part for members, there’s some fact sheets and advice there.

pernicious-anaemia-society....

Sleepybunny profile image
Sleepybunny

Hi,

I have some concerns about the new NICE guideline, too much emphasis on oral B12 in my opinion.

I think this document is still current

NICE CKS Anaemia - B12 deficiency and Folate deficiency (published some years ago).

BNF (British National Formulary)

Just wondered if BNF entry on hydroxocobalamin has anything useful?

BNF also have a treatment summary for megaloblastic anaemia.

Might be something in

B12info.com comment on new NICE guideline.

b12info.com/first-nice-guid...

PAS articles on new NICE guideline

pernicious-anaemia-society....

pernicious-anaemia-society....

Is there anything in ICB/Health Board guidelines for her area?

I think you've seen these threads but putting them here in case they help someone reading this thread.

Patient Safety

healthunlocked.com/pasoc/po...

Is this the tip of the iceberg?

healthunlocked.com/pasoc/po....

Cherylclaire profile image
CherylclaireForum Support

NICE guidelines : Follow-up appointments for people receiving intramuscular replacement

1.6.10 Do not repeat the initial diagnostic test in people who are having intramuscular vitamin B12 replacement.

1.6.12 If a person has , or is suspected of having, an irreversible cause of vitamin b12 deficiency:

continue with lifelong intramuscular injections, even if their symptoms have improved or are no longer present, and

advise them to come back if symptoms get worse, reappear, or they get new symptoms.

You are right - "the initial diagnostic test" in 1.6.10 is vague, although 1.3 Diagnosing vitamin B12 deficiency starts with Initial tests 1.3.1 "use either total B12 (serum cobalamin) or active B12 (serum holotranscobalamin) as the initial test" - but maybe the "or is suspected of having ...." in 1.6.12 could be used, as her total serum B12 was initially very low. Malabsorption could not be ruled out as a cause unless this is "based on results of further testing or investigations" -1.5.17

Box 1 and Box 2 : There is a more useful list of common symptoms and signs of vitamin B12 deficiency, some of which no doubt cannot even now be ruled out as present, and common risk factors, which includes "family history of vitamin B12 deficiency or an autoimmune condition".

I think any GP would struggle to justify the nurse's opinion on this guidance alone, vague as it is ! Just awful that you keep on having to go through this - and certainly "lifelong" should require less opinionation.

If that's not a word, I've just made it one. Stick that in the guidelines !

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