B12 Injections

[Pollyanna23]

Hi. I used to be on B12 injections but when the Covid Pandemic happened my GP switched me to having aB12 tablets. I had side effects from taking the B12 tablets and explained this to my GP but they seemed to ignore my concerns with the side effects. I now am on no B12 supplement quite concerning because I suffer with a cold nose irritable leg syndrome and sudden sharp noises in my head of which my GP is aware of but also chooses to ignore. If anyone could advise me on what my next move should be I would appreciate it. Thank you.

[Nackapan]

Write saying you are suffering.Say the b12 tablets are not enough to kerp symptoms at bay

Get b12 injections reinstated

[Pollyanna23 in reply to Nackapan]

Thank you I will try tomorrow when I telephone my surgery.

[Pickle500]

When was the last injection you had?The lockdowns are long over and you really should have injections reinstated. Call the surgery and ask them if they're doing B12 injections or talk to your regular Doctor.

If you have an absorption problem then you need to be on injections for life.

[Pollyanna23 in reply to Pickle500]

That’s what I thought. I will ring my surgery tomoz hopefully the GP will reinstate my B 12 injections.

[Pollyanna23 in reply to Pollyanna23]

Thank you.

[Dee011960]

GP surgery did that to me during lockdown but I didn't use the tablets as I know I have absorption issues. I waited 2 days after 'my' injection was due and called GP surgery for an appointment, duty GP called me back, I told them that I couldn't live with the symptoms anymore and that I'd rather be dead (a bit extreme I know), but it worked, they reinstated my injections, as they know if it came up in an inquest that they had taken away B12 injections (that are meant for life), it would reflect bad on them! What the GP doesn't know is I don't believe in suicide but they couldn't take the chance!! I hope you get your injections reinstated.

[Pollyanna23 in reply to Dee011960]

Thank you.

[Sleepybunny]

Hi,

If you have queries about treatment then I would always recommend putting them in a letter to GP and keeping a copy.

Info passed on verbally may get forgotten or not recorded.

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.

1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

2) Keep letters brief, to the point and polite. Harder to ignore a letter in my opinion.

3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.

4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.

"when the Covid Pandemic happened my GP switched me to having aB12 tablets. I had side effects from taking the B12 tablets and explained this to my GP but they seemed to ignore my concerns"

Have you accessed your medical records from this time to see what was written about this decision?

Accessing Health Records (UK)

patients-association.org.uk...

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

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

If you're a PAS member, worth ringing their helpline.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS Contact Details

pernicious-anaemia-society....

PAS website has a page for health professionals that your GP may find useful.

PAS have a leaflet "Treatment is for Life"

pernicious-anaemia-society....

See this PAS news item from 2020 about treatment during pandemic

pernicious-anaemia-society....

It suggests that once injections can be given safely again (which of course they can be in 2023) then IM B12 injections should be started again.

Try to track down the local B12 deficiency guidelines for your ICB (Integrated care Board) or Health Board.

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

List of ICBs in England

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

If you can't find them online or in forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of the local guidelines.

See blog post below if you want to know why I urge UK forum members to find local B12 deficiency guidelines. I sincerely hope you are not in this area.

b12deficiency.info/gloucest...

UK B12 documents

There may be useful quotes in these articles/documents that you could include in a letter to GP.

NHS article about B12 deficiency (simply written)

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

BSH Cobalamin and Folate Guidelines (detailed/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...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in Nov 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 (lots of pages).

Privacy

I suggest that people are careful with their privacy as threads from HU can appear on NHS website and possibly other websites but if you don't mind people knowing your ICB or Health Board then maybe forum members can help you to track them down.

If you want to change your post to a more private setting...

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, next time you log in and visit the thread, it should have the word private in the webpage address.

Patient Safety

See this thread about Patient Safety which has lots of useful links for those who've had difficult health experiences.

healthunlocked.com/pasoc/po...

Self Treatment

Many UK forum members on here turn to self treatment as a last resort when NHS treatment is not enough or they cannot get any treatment.

I was forced to treat myself as NHS refused to treat me and I realised that if I didn't, the dementia and spinal symptoms I had were going to become permanent.

Some get B12 injections from private GPs or beauty salons (expensive), some try high strength oral B12 but this doesn't work for some and some turn to self injection (SI).

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 links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

The next thread was started by someone whose doctors insisted on treating them with oral tablets and not injections so might be relevant to you.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

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

[Budsa]

The tablets you were prescribed would likely have been cyanocobalamin. You could always try Adenosylcobalamin or Methylcobalamin tablets which may have fewer side effects.

[Pollyanna23 in reply to Budsa]

I believe that was the name of the tablet I was on. I have had no B12 supplement for over a year and yet when I mention the on going symptoms I am experiencing the GP seems to be ignorant to the fact the symptoms could be related to my B12.

[HeartyGilly]

You need to be assertive and denand eight weekly jabs as per NICE guidelines. You can say you tried the pills and they didn’t work, which they won’t if yiu have absorption issues. .

[Pollyanna23 in reply to HeartyGilly]

Thank you for the advice but I have already explained to the GP side effects I have encountered taking the pils.They are aware I am on no B12 supplement but choose to do nothing or even check my B12 levels. I have booked some private blood test for next week and one is for my B12 so it will be interesting to see what the results are.I actually have had no B12 supplement for over a year.

[HeartyGilly in reply to Pollyanna23]

it is pointless retesting if you are taking B12. Just say you need them 8 weekly as NICE states,

[Sleepybunny]

Hi again,

Link that describes UK B12 deficiency treatment, perhaps you could show this to your GP.

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

Do you have a confirmed PA diagnosis? Worth checking your medical records.

Some forum members have had their B12 injections stopped due to there being no mention of a past PA diagnosis in their records.

Testing for PA

pernicious-anaemia-society....

A pepsinogen test may also be helpful in diagnosing PA.

I have posted before about UK areas that were reviewing patients on B12 injections...I strongly suspect this to be a cost cutting exercise.

Some reviews may be linked to treatment during pandemic but some may be ongoing.

Article about the review process for patients receiving B12 injections in a Scottish Health Board.

guidelinesinpractice.co.uk/...

and another one from Scotland

nhslguidelines.scot.nhs.uk/...

some from England

westsuffolkccg.nhs.uk/wp-co...

leedsccg.nhs.uk/content/upl...

sandwellandwestbhamccgformu...

Sussex had a "Review of Vitamin B12 treatments in accordance with NICE" a few years ago.

Might be worth you trying to find a document from the CCG (or Health Board) for your area that covers B12 injections during pandemic. You could then check if the guidelines were applied correctly in your case.

CCGs have been replaced by ICBs in England. Some ICBs have adopted the clinical guidelines of the CCG they replaced.

Might be worth you contacting your ICB and the practice manager of your GP surgery to ask why B12 injections have not been restarted in your case.

This should mean you at least got an explanation why. I strongly recommend that requests like this are put in writing and keep a copy.

Knowing the reason why can help to argue your case to get them reinstated.

Bear in mind that some health professionals and possibly some ICBs/Health Boards might find it difficult to be challenged by a patient.

[Hockey_player]

I was using the B12 that you dissolve under your tongue. It worked for awhile and then it stopped working. I now need injections. A doctor taught my husband how to do them. It is much more convenient than going to the doctor to get them. I tried every 4 weeks but my toes would get tingly so I now do them every 3 weeks. I live in Victoria, BC and we are lucky that we can get injectable B12 without a prescription.

[Pollyanna23]

I am hoping the GP will reinstate my B12 injections not sure I could Administer them myself. I am 65 and and are fortunate to get free prescriptions due to my health issues. I can’t understand why the GP would not try any other form of B12 supplement other than the one tablet of which made my whole body itch. The fact I was having B12 injections and they were just stopped because of the Covid pandemic is quite bizarre not to mention how now my health is being affected with different symptoms.