Long term B12 injections should they be stopped

[Jims62]

My mum was diagnosed with pernicious anemia 15 years ago, she has her B12 injections every 3months, her new GP has stopped her having her injections the last 2 months saying her blood test was normall, I’ve explained that’s because she has been taking the b12. She is now getting really tired sleeping all the time she’s showing some memory deterioration need advice, GP not listening to our concerns

[Gambit62 Administrator]

Sorry to hear about what is, unfortunately, not an uncommon predicament.

If your mother has a diagnosis of pernicious anaemia her injections should not have been stopped. The BCSH guidelines changed a number of years ago - as did the NICE guidelines - to recognise that management based on serum B12 levels just doesn't work after loading shots. The best you can probably do is to write to the GP, copied to the practice administrator, requesting that your mother's GP reinstates her treatment based on BCSH and NICE guidance, which are that treatment should be for life and that further testing of serum B12 levels post loading shots is not recommended.

I would also suggest that you request a referral to a memory specialist as a matter of urgency if your mothers memory is deteriorating - this should be preceded by a set of tests that would look for common problems that cause memory deterioration - including retesting serum B12. If that shows a significant drop (>20%) from the test that her GP did before erroneously withdrawing injections - then that would be good evidence of an absorption problem that needs treatment by injections, confirming an original diagnosis of PA even if the original details have been lost.

onlinelibrary.wiley.com/doi...

[Jims62 in reply to Gambit62]

Thank you this really helps, I have shown the GP the guidelines but they have just ignored me so far. I am now going to change GP, thank you once again

[wedgewood in reply to Jims62]

That’s a shocking situation . I could not trust a doctor who was so ignorant . He/she hasn’t taken the trouble to be well- informed on Pernicious Anaemia, and is risking your mother’s health. I would say that to change your doctor is the best action to take . But I worry for other P.A. patients of your G.P. Some people think their doctor can do no wrong - a dangerous assumption , as you know .

That doctor needs to be educated on P.A. . But some of them are so arrogant. If you have no luck with a new GP, join the PAS . They can help you . Best wishes . .

[clivealive Forum Support]

P.A is for life - I've had it for over 47 years and without the B12 injections I certainly wouldn't still be "clivealive" aged 78.

I wish you and your Mum well

[Davy28]

I agree it's for life when diagnosed and I disagree with any doctor who says that because your levels are fine to stop injections that is wrong , I would change doctor if he/she doesn't keep them going , good luck.

[fbirder]

Ask the idiot doctor if he stops diabetics having insulin injections because their blood sugar is now ‘normal’.

[jointpain]

Must be the same doctor as my mother has. Her B12 injection every three months because she has pernicious anemia was stopped thirty months ago. Due entirely to having a B12 serum blood test shortly after an injection, which showed that the Dr had cured her of PA. She is now bed ridden for the past 14 months and getting weaker as each month goes by. I am not allowed to intervene, and she won't ask questions, or complain. This Dr reminds me of Shipman, as he is untouchable, and a one man practice, with no other Drs on the payroll.

[wedgewood in reply to jointpain]

As you are a member of P.A.S., you can get help for your mother . Get in touch with them - I can’t remember the times they are available . They will help you . There is a complaints procedure . Shipman was not untouchable and he was caught . You mother will die slowly and horribly . You must take action PLEASE . PLEASE - ASAP .

[jointpain in reply to wedgewood]

In Wales, the complaint procedure requires the permission at the very least of the person affected, I have written and phoned Betws Cadwallader health authority (excuse spelling) but without a signed authorization by my mother for any investigation into her health care they will not do a jot. She says she is frightened of the repercussions by the Doctor if he is investigated.

[wedgewood in reply to jointpain]

I’m really sorry to hear that . She should be worried about her health . You could also tell her , that he /she is damaging other people’s health with his/her ignorance , and it must stop. That might persuade her to sign . You have right on your side . At the very least , can you persuade her to either self-inject or let you inject her with B12 ?

[jointpain in reply to wedgewood]

Persuading my mother is a complete no no, she is 92 and as stubborn as they come. I self inject and have been for nearly two years now. The difference I and my wife have noticed is astounding. I was going the same way as my mother, in that my walking days were virtually over. I was tested with B12 serum blood test of 176 after using spray and sublingual tablets for around 6 weeks. The lowest limit was 170 so the doctors said I was fine. Tested last year at over 2000 and warned how dangerous too much B12 is.

Talk about ignorance.

[wedgewood in reply to jointpain]

I’m so pleased that you have had the benefits of self - injection . So sorry that you cannot persuade your mother that doctors are not always correct . Yes I had that daftness about” too much B12 is toxic”:. When asked to see evidence of that I was just met with stoney silence . Also I asked how much is too much .? Enough said !

Your mother should ask for proof that she is “ cured “ of Pernicious Anaemia . Has she been retested after 30 months of no injections?

She must be low again , proving that she has not been cured .

I’m sorry to go on so , but I’m concerned . But if she is so convinced that doctors cannot be wrong , there is nothing more that can be done .

[Chance15 in reply to jointpain]

That sounded like my mom she was scared and didn’t trouble.Mom passed away last year.

She ad other problems to.

Chance

[wedgewood in reply to jointpain]

Your mother may well have the mental problems associated with longer - term B12 deficiency as she won’t ask questions or complain .

[Brainfoglady]

Hopefully this type of ignorant GP will be a thing of the past one day. In the meantime pernicious anaemia needs life long treatment. Good luck

[Sleepybunny]

Hi Jim62,

Please think about joining PAS on your mum's behalf soon.

PAS office is open today (Thurs) and some other mornings.

They can offer support , pass on useful info and in some cases intervene directly

I'm assuming you are in UK.

PA treatment is for life and should never be stopped.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

If you join PAS you can print out some of their useful leaflets eg

"Treatment is for life"

"An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

If treatment is delayed or stopped it can result in severe mental health issues, possible dementia and possible spinal cord damage among many other symptoms.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... see page 2.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

B12 article from Mayo Clinic (USA)

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

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 book I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

I wrote a very detailed reply on another forum thread which has links to more B12 books, B12 websites, UK B12 documents and other B12 info.

healthunlocked.com/pasoc/po...

I hope you'll find some useful info in it .

[Dee011960]

I have had this problem with GP'S too, one surgery said l had too much B12 in my system and therefore l didn't need the injections and stopped them, oral tablets and sprays don't work on me as l have absorption issue and no intrinsic factor, unfortunately the original surgery who diagnosed me has lost the blood results from 2003 it took them years to discover, so the surgery l transferred to last year (2019) have given me injections until my August dose this year when they said it has been cancelled due to Covid-19 but l can have a blood test and follow appt to discuss my options, the gp said it was the Head Nurse who was making the decision, the Head Nurse the gp! I have managed to get patches but it not helping with the migraine type headaches or the diarrhoea after eating something that has B12 naturally!! I am at a loss at why gp's are doing this? Why can't B12 injections be done at pharmacies (like flu jabs), if they are routine and gp's don't have time for them or show patients how to self inject, like diabetics are shown! But the bottom line is gp's just don't listen to their patients who are best to let the gp how their bodies are coping without their injections and not just rely on keep doing unnecessary blood tests once you have been diagnosed, unless of course your body can repair or grow intrinsic factor!!