I had b12 injections stopped during covid I’m now getting them again

[bigE20]

I was diagnosed with pernicious anemia many years ago I was put on b12 injections,some years later I started experiencing numbness in my left leg burning sensation in my hands was sent to see a neurologist who did MRI scans and told there was degeneration in the nerves in my spine which was due to my b12 deficiency I continued with my life coping with the symptoms then covid came along I was taken off injections and put on tablets when I questioned this the doctor told me that he’ll be the judge of me coming of them so I did what he said so slowly my symptoms got worse tired not feeling myself so I made an appointment at my GP surgery they did blood tests I am now a diabetic and I was told my b12 levels were low and the doctor would be monitoring this and to carry on taking tablets last year I started to experience memory loss not concentrating which has got me in bother with my employer I moved to another GP practice they did blood tests I was put on b12 injections straight away my new GP has told me I will never be taken of injections again and he couldn’t understand why I was not put back on injections straight away or taken off them as it was a waste of time me taking them orally he has told me I’m on the right track now and my symptoms should ease but it might take a couple of months it has been a real struggle physically and mentally for many years as sometimes I think people look at you and don’t understand what you are going through I read other people who have this condition and it appears we’re all experiencing the same fight

[Narwhal10]

I am so sorry to read bigE20,

I do hope you recover well. Please apply for your Medical Records using standard documentation from the Information Commissioner’s Office. It is called a Subject Access Request.

ico.org.uk

I do hope you are member of the Pernicious Anaemia Society. I am aware that lots of people were moved from injections to tablets due to COVID which in my humble opinion is not a sound rationale.

You are within your rights to complain to the Trust or Integrated Care Board. However, there are other systems that you can (also) report to. If a medication is mis-prescribed, even if it is the wrong dosage, wrong route, wrong formula the Medicines & Healthcare Regulatory Agency’s Yellow Card Scheme is available.

yellowcard.mhra.gov.uk

There are drop-down boxes but some where you explain what happened. It is entirely up to you if you wish to give the name of :-

The doctor that would judge you coming off them.

I do hope that you are able to explain to your employer that you have 2 chronic illnesses, you are trying your best. They do have a Duty of Care towards you and you are protected by the Equality Act (2010).

[wedgewood]

Thank you for telling us what you have been through . It’s truly shocking to hear about the crass ignorance that is displayed by the medical profession regarding Pernicious Anaemia . So glad that you have now found a doctor who has put you back on B12 injections . You have been lucky at last thank goodness . I hope that you get the injections regularly enough and also. take a daily modest folic acid tablet. ( works with b12 )

Good that you have joined PAS . You will always get help here . You have had an excellent response from Narwhal10 . Very best wishes .

[Kittykat50 in reply to wedgewood]

Hi B.

I'm so glad you got to talk to your GP.

Sound like you went thru hell.

Such alot to deal with

I came on here few yrs ago and only for people on here I wouldn't gone back on my B12. My reasons were different.

Its great to hear you've now picked up.

Its Amazing what a jab like these can do.

And I'm really happy you got to feel much better.

Take good care.

Kitty x

[Sleepybunny]

Hi,

I am so sorry to read about what you went through.

"neurologist who did MRI scans and told there was degeneration in the nerves in my spine which was due to my b12 deficiency I continued with my life coping with the symptoms then covid came along I was taken off injections and put on tablets ".

Were you diagnosed with SACD, sub acute combined degeneration of the spinal cord?

Might be worth accessing your medical records to find out if you have a SACD diagnosis if you're not sure.

If you have a SACD diagnosis, I cannot see why you were taken off B12 injections even during Covid.

Have you considered making a formal complaint about what happened?

PAS article about SACD

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society) membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring

.pernicious-anaemia-society....

There are some PAS support groups in UK.

pernicious-anaemia-society....

PAS website has a section on personal stories.

pernicious-anaemia-society....

Person who runs B12info.com might be interested in writing a blog post about your story.

b12info.com/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neurological symptoms present.

Link to thread about Patient Safety, has links that might be useful for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

I wish I could say that your story is rare but from what I see on this forum I don't think it is.

Search forum posts for "injections stopped" and you'll see other similar stories.

"my new GP has told me I will never be taken of injections again"

How often is GP going to give you B12 injections?

After a long period without injections I would expect them to repeat loading injections at start of treatment.

If you have time, search for UK document "NICE CKS Anaemia B12 and folate deficiency" and read it thoroughly if you have the energy. It outlines patterns of treatment in the Management section.

With neuro symptoms present and restarting B12 injections after a long gap, I would expect you to have the following pattern ......

A B12 loading injection every other day for as long as symptoms continue to get better (could be weeks even months of these) followed by a B12 injection every 2 months.

GP can see this pattern of treatment in their BNF (British National Formulary) book in Chapter 9 section 1.2. It's also in online BNF, see Indications and Doses section in link below.

bnf.nice.org.uk/drugs/hydro...

You could look for 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 I mentioned above.

Try an online search for "(name of ICB/Health Board) b12 deficiency guidelines" or "(name of ICB/Health Board B12 deficiency treatment algorithm)" or search forum posts here. If still no luck finding them, try submitting a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.

NICE (National Institute of Health and Care Excellence) are developing a new B12 deficiency guideline to be published in March 2024. Search for "NICE draft B12 deficiency guideline" if you want to see what they are working on.

If you have spare time, this document is also worth a look.

BSH Cobalamin and Folate Guidelines

(Aimed at doctors)

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

I have written many detailed replies recently on this forum which may be of interest.

See thread below.

healthunlocked.com/pasoc/po...

More B12 information in pinned forum post "Various PA/B12D resources".

I am so pleased you found a kind GP.

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

[Cherylclaire Forum Support]

Sleepybunny is absolutely right:

You had a PA diagnosis. Your initial treatment was not controlling your symptoms ("...some years later I started experiencing numbness...") which caused degeneration of the nerves in your spine.

Then it was stopped unnecessarily during Covid, and replaced by tablets. This ineffective solution continued, due to the lack of understanding of the severity of your lifelong condition.

Your new GP is trying to help you repair the damage caused by all this. Considering the neurological element and the amount of time that you have gone without treatment (I'm not going to count the tablets as treatment!), the frequency should now be every other day injections until no more improvements can be gained. Nerve repair can take a long time.

The maintenance injections should pre-empt return of symptoms after that. For some, that could be monthly or less often, but for many, more is needed for preventing a cycle of deterioration and reparation - which can't be healthy for anyone and would make you struggle at work. For some, every other day injections are the maintenance dose.

That is all some way off right now - but please ensure that your current GP is aware of the NICE medical guidelines for B12 deficiency, due to be published in March this year. Worth reading the draft document.

People do not always understand what you are going through. We need to help them with that - let's start with the doctors ! Sorry to hear your story, and hoping you now get the treatment you needed.

[JanCymru]

Hi bigE20, what a horrendous state of affairs you've been through - the one redeeming feature is you finding a different GP able to understand and support and treat you as an individual with PA. Excellent responses from Narwhal10, wedgewood and sleepybunny with copious information for you to access. Wishing you well now that you have a fair chance of better health.

[Hockey_player]

It's so sad that so many doctors do not understand PA and that you had to suffer so much before getting injections again! I hope you make a speedy recovery. How often are you getting them? At least every other day would be a good idea until your symptoms have cleared up. It would be wise to learn to self-inject in case you have this problem with doctors again.

[Hectorsmum2]

I would consider claiming compensation, there are legal forms advertising for people who have not had proper treatment for pernicious anaemia.

[Sleepybunny]

If your current GP needs some help with patients with B12 deficiency ...

these links might be useful

1) PAS page for health professionals.

Your GP could join PAS as an associate member at no charge.

pernicious-anaemia-society....

2) Tell your GP about Club B12.

It's a worldwide group of researchers and doctors who are looking into B12.

They have a regular zoom meeting and have hosted a UK conference.

club-12.org/

3) useful articles to pass to GP

B12 article from Mayo Clinic US

pubmed.ncbi.nlm.nih.gov/311...

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

Affiliations expand

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Free PMC article

Recent BMJ article Vitamin B12 by B. Wolffenbuttel

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

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

Dr Wolffenbuttel also wrote an article for PAS in Jan 2024 which your GP should find interesting.

Only One Chance

pernicious-anaemia-society....

In my personal opinion he's one of the few doctors who understands B12 deficiency.

[Countrylou]

that doctor needs to be struck off, they play God and get away with it, no consequences to their actions…. Thankfully you are now getting the treatment your body needs