B12 shortage and anti-body test? - Pernicious Anaemi...

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B12 shortage and anti-body test?

JodieLouise profile image
10 Replies

Hi, I would really appreciate some advice.

I rang my GP surgery today to book my routine 12 weekly appointment for my B12 injection only to be told there’s a current B12 shortage and they are only administering injections to those deemed urgent enough to need them.

My doctor has told me that I need to be tested to check my anti-bodies because if they are fine then I can be on tablets for B12 instead.

I am completely confused and feel very lost, I don’t know enough about this condition to understand but why was I put on injections a few years ago if I didn’t need to be? I am extremely worried that if my anti-bodies come back normal, I will be put on tablets and my health will take a rapid decline.

If my antibodies come back normal, do I have a leg to stand on to be able to fight for injections?

Thank you for any help!

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JodieLouise
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10 Replies
Nackapan profile image
Nackapan

The same happened at my surgery but without a shortage of b12in the equation. Once on Injections its stated in 'their' guidelines blood tests for b12 levels are not needed.

If you've had a PA diagnosis do not do anything apart from asking fof your due b12 injectiin as they are for life.

If you have a negative IFA test it does not rule out PA.

I would personally ask the pharmacist about shortages of b12.

Theh are up to date and go the ordering

Get help from PAS ?

Sleepybunny profile image
Sleepybunny in reply toNackapan

Good suggestion about asking the pharmacist....

Sleepybunny profile image
Sleepybunny

Hi JodieLouise,

I think many forum members get exasperated when there's yet another story like this on the forum.

I'm assuming you're in UK.

My experience has been difficult and I feel that many UK health professionals do not understand PA and B12 deficiency so I try to supply lots of information that might be useful.

"There’s a current B12 shortage and they are only administering injections to those deemed urgent enough to need them."

I suggest contacting your ICB(Integrated care Board) or Health Board and asking if there is a shortage of injectable B12 in your area.

List of ICBs in England

nhs.uk/nhs-services/find-yo...

"My doctor has told me that I need to be tested to check my anti-bodies because if they are fine then I can be on tablets for B12 instead."

I suggest you consider challenging what your GP said (politely) in writing after reading the info I and other forum members post.

Are you a PAS member?

They can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

When they mention antibodies, I assume they mean Intrinsic Factor Antibodies (IFA or IFAb) which is a test for PA (Pernicious Anaemia).

Having a negative test result in IFA test does not rule out PA and your GPs should know this (sadly some don't).

Testing for PA

pernicious-anaemia-society....

Above link has a useful quote from BSH Cobalamin and Folate Guidelines which says

"“…and the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia”."

Maybe show them this flowchart or include it in a letter as it mentions Antibody Negative PA.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

I think letters are likely to be more effective as I think they are harder to ignore.

Maybe worth sending a copy of letter to practice manager as well as GP.

Link to a thread I started on Patient Safety which has lots of useful links for those who have had difficult health experiences.

healthunlocked.com/pasoc/po...

I'll add more to this thread later but just wanted you to know that someone is thinking of you.

I am not medically trained.

I suggest taking at least a week to look through the info so that it doesn't become overwhelming, maybe a bit every day.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

When you have the time and energy, have a look at these documents and articles.

Maybe find some useful quotes to put in a letter to GP/practice manager.

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

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

Local B12 deficiency guidelines

I urge UK forum members to find out what's in local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.

List of ICBs in England

nhs.uk/nhs-services/find-yo...

You might find this blog post interesting to read.

It's about a UK area where most people seem to be on oral B12 supplements.

b12deficiency.info/gloucest...

Try a search online to find local B12 deficiency guidelines for ICB/Health Board or submit a FOI (Freedom of Information) request to ICB/Health board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

Self treatment

Some UK forum members as a last resort turn to treating themselves if NHS treatment is not enough for them.

Some get extra injections from private GPs or beauty salons, some try high dose oral B12 but this does not work for some people and some turn to self injection (SI) using injectable B12 from Europe.

Link to article that discusses patients who self inject B12 in UK and their reasons for doing so.

Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey

Natasha Tyler, Alexander Hodkinson, Naeem Ahlam, Sally Giles, Andrew Zhou and Maria Panagioti

British Journal of General Practice 2022; 72 (725): e891-e898. DOI: doi.org/10.3399/BJGP.2021.0711

bjgp.org/content/72/725/e891

Petition

There is currently a petition to get injectable b12 available over the counter in UK

change.org/p/dr-june-raine-...

Tracey Witty of B12 info.com (formerly B12 Deficiency Info) has campaigned on this issue for 8 years.

b12deficiency.info/eight-lo...

Help if treatment is changed

b12deficiency.info/are-your...

PAS members can access an article "Treatment changed – What can you do?"

pernicious-anaemia-society....

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Sleepybunny profile image
Sleepybunny

A bit about oral B12 treatment

Note on oral treatment - from B12 Institute (Netherlands)

b12-institute.nl/caution-no...

Look up the Cochrane Review of Oral B12 treatment and read the report's conclusions.

My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the change.

Of course GPs may argue that changing from B12 injections to oral B12 is not a major change in treatment.

As I understand it (I'm not a scientist or medical professional)this means that the GP should have discussed the pros and cons of changing to oral treatment, made sure patient understands the issues and got patient's agreement before treatment changed.

I'm assuming informed consent to the change to oral treatment has not been given previously.

If unhappy with a change to oral treatment, might be worth pointing out in any letter to GP that informed consent for the change in treatment has not been given.

Keep copies of any letters sent or received on this matter in case there is a need for formal complaint in future.

If a change to oral treatment is part of a study the GP surgery or ICB/Health Board is taking part in, has this study got "ethical approval"?

People might want to ask if they are part of a study and if yes, ask further questions about whether the study has "ethical approval" from an ethics committee.

Most studies involving patients need ethical approval.

BMJ article on ethical approval from 2009

bmj.com/content/338/bmj.b450

JodieLouise profile image
JodieLouise in reply toSleepybunny

Hi Sleepybunny,

Wow, thank you so so much for all of your information. I am blown away by your kindness.

I will have a good read through all of the info over a few days like you suggest.

Again, thank you for your time & sharing your knowledge, I really appreciate it!

Sleepybunny profile image
Sleepybunny

Hi again,

Might be worth trying to find out if there is a review of patients on B12 injections going on in your area.

There are reviews in some areas of UK.

An online search for "nhs review b12 injections uk" should show some current documents.

CCGs (Clinical Commissioning Groups) were replaced by ICBs in England in July 2022.

ICBs are likely to take on the clinical guidelines of the previous CCG so a document from previous CCG could still be current.

I'm quite cynical after my experiences and these days try to check things I'm told by doctors myself.

Have you found the local B12 deficiency guidelines for your area?

I think people should protect their privacy but if you don't mind people knowing your ICB/Health Board then maybe forum members can help you to find them.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

Posts from HU can appear on NHS website.

You may want to change the setting of your post to a more private setting where only visitors to this forum can see it.

To do this....

1) Go to original post, click More then click Edit.

2) Scroll down post to Share, click Community Only then click Post.

If that's worked the next time you sign in to your thread you should see the word private in webpage address.

FlipperTD profile image
FlipperTD

Aged scientist, not medic.

[This is an attempt at humour. Don't take it too seriously]

It's good to see that the argument used by Henry Crun in The Goons 'Can't get the wood, you know' as a post-war excuse for the inability to fix something lives on. [Some of our older members might appreciate this.]

I suspect the supposed 'B12 shortage' is in the same category as Henry Crun's wood.

The suggestion of asking a pharmacist is a good one, SleepyBunny!

Auburn9144 profile image
Auburn9144

I'm no expert; but I know that, if you have pernicious anemia, tablets are useless because we cannot asorb them properly. Injections are required, but doctors are very uninformed sadly.

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