Tablets v Injections

[Redmusic]

Hi, After a few years of monitoring my B12 levels are now low enough for my GP to offer treatment. I was expecting injections but have been prescribed tablets. Is anyone else on these ? I assumed from what I had read that injections were the primary option. Thanks

[Sleepybunny]

Hi,

Welcome to the forum.

I was concerned on your behalf when I read your comment below.

"After a few years of monitoring my B12 levels are now low enough for my GP to offer treatment"

My understanding is that in UK if you have the symptoms of B12 deficiency, you should get treatment even if serum B12 level is within normal range.

I've posted a lot of info. Might be best to take several days to read it.

Some links may have details that could be upsetting to read.

If you have the time and energy, I suggest you search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly.

Try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare it with NICE CKS document.

Are your symptoms consistent with B12 deficiency?

Has your GP got a list of all your symptoms? I used PAS list below and added extra symptoms at bottom.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Have you been tested for PA and Coeliac disease?

These are two auto- immune conditions that can lead to B12 deficiency.

I'm assuming your GP has ruled out diet as a cause.

If you have a PA diagnosis or suspect you have PA, worth joining PAS (Pernicious Anaemia Society).

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

PAS website has lots of useful leaflets.

pernicious-anaemia-society....

Diagnosis of Coeliac disease

coeliac.org.uk/information-...

There are other possible causes of B12 deficiency besides diet, PA and coeliac disease. Has your GP ruled them out?

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-...

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

Unhappy with treatment?

How to write letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

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

It's vital to get adequate treatment. Delayed or inadequate treatment can put a patient with B12 deficiency at risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.

If you have neuro symptoms, I would definitely expect you to be on B12 injections.

If you have neuro symptoms and GP insists B12 tablets are okay then may be worth discussing article below with them.

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

pernicious-anaemia-society....

Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

Two useful B12 books

Published a few years ago so some bits may need updating.

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Your local library service may have copies of the books.

"I was expecting injections but have been prescribed tablets"

There are moves across UK to put more patients on oral B12 tablets rather than injections.

I'm deeply cynical and suspect this is mainly for cost cutting reasons. Nurses' time to give B12 injections is expensive.

Some forum members manage their condition with high dose oral B12 but this doesn't work for some (didn't work for me).

This blog post discusses a UK area where treatment guideline offers mainly oral tablets.

b12deficiency.info/gloucest...

Note on oral treatment - from B12 Institute (Netherlands)

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

Search online for "Cochrane review oral B12" which should show an article that compares oral B12 with B12 injections.

Wrong ideas about B12 deficiency

Many on here have met health professionals with a poor understanding of B12 deficiency. I hope your GP is not one of them.....

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

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

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

Help for GPs

Maybe point this out to your GP if they need help.

1) PAS website has a page for health professionals

They can join PAS as associate members, no charge.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors who are looking into B12.

They have regular zoom meetings.

club-12.org/

3) Good articles to pass to GPs

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

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

Recent BMJ article about B12 deficiency

bmj.com/content/383/bmj-202...

The author also wrote a blog post for PAS

pernicious-anaemia-society....

Some UK forum members resort to treating themselves if NHS treatment is not enough. Some get extra B12 injections from private GPs, some try high dose oral B12 (1000mcg or higher) and some as a last resort turn to self injection (SI). There is a pinned post that mentions SI.

Lots more B12 info in pinned post "various B12D/PA resources". Pinned posts are on right hand side of screen if on computer.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

[Narwhal10]

Hi Redmusic,

Welcome here. I have just seen your post from 5 years ago. Please get hard copies of all your blood results and notes.

You have positive parietal cell antibodies. Like Sleepybunny says symptoms are extremely important as opposed to an arbitrary figure on a screen.

Please consider joining the Pernicious Anaemia Society to understand that this disease is poorly understood by the medical profession. Plus, you can be properly educated.

Everyone of us has individual symptoms so keep a diary.

Is there any family history of P.A. or other autoimmune diseases ?

Do you have any other autoimmune diseases ? Hypothyroidism, arthritis, coeliac disease ?

Best wishes.

🐳

[Nackapan]

Have you trued b12 tablets you've bought? As years going on . hHave these helped?

If you've tried tablets and your Gp aware it appears to be an absorption issue .

So if b12 levels dropped again tablets not enough so b12 injections needed surley.

As a positive parietal cell antibody result more tests shoukd be done .

Hooe you get answers