B12 injections

[JP57]

My 24 year old daughter have been getting B12 injections for 3 years and feels so much better. She was also low in Folate. She has gone gluten free but can’t bear to get tests for coeliacs disease as she would have to eat foods with gluten for 6 weeks. She was told by GP that she would need injections for life. A new GP has now said she doesn’t think she injections, my daughter is now worried sick as she doesn’t want to go back to how she felt before starting treatment. How can someone just decide that she doesn’t need this treatment. This was all decided through emails. Any advice would be appreciated

[Nackapan]

Demand a consultation.

Have you dates she was told b12 injections for life.

This happens far too often

An email!!!

Get PAS involved.

Write to surgery.

[JP57 in reply to Nackapan]

Thanks, I appreciate the back up

[Nackapan in reply to JP57]

Unfortunately I've had to help my mu and daughtef and myself. Too many threats of stopping the frequency. Stopping abd given tablets.

Wd shouldn't have to fight all of tgd time.

What valid reading have they given.

If 'normal b12 levels.

Quote levels should be sky high on injections

Whole point

Anything else found to treat?

I actually bought my own when threatened ax with no b12 in me can't do thd fight.

I do subcutaneous at home

Have kept my 2 weekly prescription for now.

Mum 2 monthly

31 yesf old daughter 10 weekly

She's just moved

Sohope no trouble ahead.

Email!!!!

How ridiculous

[Polaris in reply to Nackapan]

I agree with Nackapan that this is happening far too often so it helps to have something in writing and also join the PA Society, where they have a page for professionals and may be able to support your daughter’s case for continuing her vital injections……

I had Dr Chandy’s book, “B12 Deficiency in Clinical Practice”, sent to my practice and was eventually offered an IF test, so at least they had bothered to read it. As Pickle500 says, unfortunately, many GPs are not educated in the complexities of B12Def/PA or aware of how very common it is.

Fingers crossed for a good outcome but try not to worry, as many of us have self injected with good results.

[Nackapan in reply to Polaris]

For JP57 I think

[Polaris in reply to Polaris]

PS Just seen, JP57 , that Dr Chandy’s B12d.org website will send a free copy of his book to professionals upon application. 🤗

b12d.org

[Pickle500]

Unfortunately it's a multi-faceted problem.

1. GPs receive minimal training on B12. They're trained to look for anaemia/macrocytosis and then prescribe a course of injections. They think that when the levels reach a certain limit that someone is cured and nothing more needs doing.

2. They don't understand PA/autoimmune gastritis or intrinsic factor antibodies, unless they've come across a patient with this before. So this new GP won't have an understanding of what your daughter is dealine with.

3. Some GPs believe Pernicious Anaemia is the same thing as B12 and folate deficiency anaemia. I think the term is outdated but probably remains to ensure awareness that lives are at risk for those who have the disease.

4, They're think they're trying to 'save money, time and resources' but in fact don't worry about that when dishing out pharmaceutical painkillers.

5. They think 'it's just a vitamin' and have no comprehension of the impact B12 deficiency has on someone. This is really so shocking in 2022.

As Nackapan says, you need a face-to-face. Or at the very least, a phone consultation with both you and your daughter present. Tell them B12 is for life when someone has autoimmune gastritis/pernicious aneamia.

I even saw one surgery mention on their website 'After loading doses, your pernicious anemia will be effectively treated. The liver can store enough for 2-4 years'.

So the whole thing is simply a catastrophe!

Good luck

[JP57 in reply to Pickle500]

Thanks for the advice, my daughter has managed to organise a telephone appointment for tomorrow with one of the other GPS so hopefully she keeps my daughter on her injections.

[Pickle500 in reply to JP57]

Great. Stand your ground. Push for what you need. No injections is not an option.

[Sleepybunny in reply to JP57]

Has she considered asking if she can record the appointment?

bma.org.uk/advice-and-suppo...

Or maybe having it on loudspeaker and having a supportive person in the room.

She should be allowed to on disability grounds as a reasonable adjustment if she has cognitive or fatigue issues but ideally would need to ask in advance and explain why she needed to record it eg memory issues etc

My impression after some very unpleasant experiences with health professionals is that they are likely to be kinder if a supportive witness is present. Even better if witness has some understanding of B12 deficiency.

I'd add that if there is any possibility of her making a complaint in the future then it's helpful to collect evidence .

She might want to follow up the phone call with a short letter expressing any concerns and backed up with evidence. Keep copies.

See letter writing link in my replies and if you have time, read the threads I've linked to.

Might be worth her having a short list of useful quotes from UK documents, PAS website and etc to refer to. Maybe a list of her symptoms especially any neuro symptoms/spinal symptoms. See Symptoms lists in my replies.

How soon after a B12 injection do her symptoms start to return?

I suggest she considers keeping a daily symptoms diary. It could be useful evidence of deterioration or improvement in symptoms to show GP and other health professionals.

NHS link about Peripheral Neuropathy (PN)

nhs.uk/conditions/periphera...

PN can be associated with B12 deficiency and folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

If all else fails then some UK forum members resort to treating themselves. There are threads about self injection on the forum but personally I see it as a last resort.

NHS refused to treat me, despite me having 50 plus typical symptoms and asking for treatment numerous times and supplying lots of relevant info, so I had to self inject. I count myself lucky to have avoided dementia and SACD (sub acute combined degeneration of the spinal cord). I had already developed dementia symptoms and pins and needles in the spine by the time I started treating myself.

[Nackapan in reply to Pickle500]

Yes i was told treatment thd same

For life

I do not have a PA diagnosis

Never even had a IFA test.

That's a lottery in its self .

An absorption problem gives the same symptoms

Treatment fir life

Not reaching cell level

More accurate

They do not know why.

But must treat symptoms.

Rule out other things .

I'm on no other medication.

Have nothing else found.

So must be included on guidelines.

Treat an absorption problem thd same ac PA

[Pickle500 in reply to Nackapan]

Did they not give you an IFAB test Nackapan?

Do you have a sense of what it was that set it off?

[Nackapan in reply to Pickle500]

Menopause I think . Ax with many other women.

My level was 106 range (200-900)

So got treated .

Didn't know about IFA test

Then when I did realised treatment exactly the same.

So didn't ask wasn't offered

Ax if negative can be used against you.

If it is an accurate test fir diagnosis without 50% of thise with PA bring missed or needing 3+ tests I would've pushed for it.

On my notes b12 injections fof life.

Nothing else found apart from low b12

[bookish in reply to Nackapan]

Probably genetic metabolism issue. There are so many. Still hoping to pin mine down x

[Sleepybunny]

Hi,

I've assumed you're in UK.

"new GP has now said she doesn’t think she injections,"

Have I understood correctly ....that the new GP has said she doesn't need injections any more?

What reason has the GP given for stopping injections?

I suggest asking the GP a direct (but polite) question , preferably in writing as harder to ignore.

Some links I post may have details that could be upsetting.

UK guidelines on coeliac disease suggest that people with suspected coeliac disease who have cut out gluten from their diet should be referred to a gastro-enterologist.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

More info on Coeliac UK website

coeliac.org.uk/home/

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates that cover a variety of situations linked to B12 deficiency.

Point 1 is about being under treated for B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for B12 deficiency with

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Local MP or devolved representative may be worth talking to if struggling to get adequate treatment.

A few people got to the Press/other media

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

Has she been tested for PA (Pernicious Anaemia)?

PAS membership is separate to membership of this forum.

A confirmed diagnosis of PA is not needed to join PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

I have also read that a pepsinogen test may be helpful in diagnosing PA.

PAS website has a page for health professionals that her GP may find useful and lots of useful leaflets/articles that PAS members can print off.

pernicious-anaemia-society....

pernicious-anaemia-society....

I will add more to this reply so check back later.

Do any of these risk factors seem likely?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

UK B12 deficiency guidelines

UK guidelines indicates that patients who are symptomatic for B12 deficiency should be treated even if serum (total) B12 is within range.

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

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

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Link below outlines two patterns of treatment for B12 deficiency

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Read guidelines below is you want to know why I suggest finding out what's in the local guidelines.

b12deficiency.info/gloucest...

Misconceptions (wrong ideas) about B12 deficiency

B12 deficiency is not always as well understood by health professionals as it should be.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

BNF treatment guidance has changed since above blog written.

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

"She was told by GP that she would need injections for life"

Might be worth her accessing her medical records to see what was written down.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

"This was all decided through emails."

Has she got copies/screen shots of the emails so she can check exactly what was said.

Blog post about help if B12 injections stopped.

b12deficiency.info/are-your...

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 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Tanyanarialucia1965]

I’m lucky enough to have a good doctor who understands that being a coeliac I need injections for life, my son is also coeliac and in a similar situation as your daughter, ( undiagnosed but clearly is coeliac)he pays to have monthly injections as some beauty salons ect now do them for 30 quid a shot, alternatively join the pernicious anaemia site and you can get guidance on how to buy and self inject.. don’t be fobbed off by the doctor, this is serious, there’s plenty of information if you google to support the fact that supplements do not work for people with stomach conditions!

[Sleepybunny]

Hi again,

I'd urge her to find out what's in her local B12 deficiency guidelines.

Sometimes these are not helpful.

If she can't find her local guidelines, best bet is to submit a FOI request to her CCG (Clinical Commissioning Group) or Health Board, asking for a copy of the local guidelines. She can also submit a FOI request to GP surgery.

Some CCGs have started reviewing the numbers of patients on B12 injections and it's possible that there is a review going on in her area. Where this happens I suspect it is primarily a cost cutting measure.

It would be really helpful to know the reason why the GP has said she doesn't need them as it would help forum members to post the most relevant info.

If she doesn't mind people knowing which CCG or Health Board covers her area, you could mention it on the thread and someone could try to help you find the local guidelines.

I always suggest people are careful about revealing personal information to protect their privacy/identity.

Threads from HU can appear on other websites eg NHS website.

If you want to change the setting of this thread to one where only visitors to the forum can view it....

1) Go to original post, click "More" tab.

2) Click Edit, scroll down post until you reach "Share".

3) Tick "Community Only" then "Post".