Does b12 injections lower immune system?

[Hayzedawn]

Does b12 injections lower immune system? I was diagnosed about 15 years ago, I was on monthly b12 up till 4 years ago and it was put back to every 12 weeks. Cause of covid I do the injections myself, but last time I spoke to nurse she mentioned I'll need another injection for immune system? I wondered if anyone else has to support immune system with injections?

[Nackapan]

Bit confused .Do you mean the nurse said you woujd need more b12 injections?

The title' Do b12 injections lower your immune system '

No

However b12 def./ PA could.

I ferl my immune system has had a battering or I can't cope as well with an ordinary cold.

I had a dry cough throat thing that went on for 3 weeks .

Very very unusual for me.

I think more regular b12 injections support your immune system.

As does vitamin c and keeping other vitamins up.

Might be wrong??

[Sleepybunny]

Hi,

"Does b12 injections lower immune system?"

I am not medically trained but I think it's more likely that B12 deficiency affects the immune system.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

"up till 4 years ago and it was put back to every 12 weeks"

Why were your injections put back to every 12 weeks?

Do you remember what your GP surgery said at the time?

The link below outlines two patterns of treatment

1) for those without neurological symptoms

2) for those WITH neurological symptoms

BNF Hydroxocobalamin

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

Both patterns of treatment allow for maintenance B12 injections every 2 months.

If you had neuro symptoms at start of treatment or have neuro symptoms now then I would expect your GP to be giving you injections at least every 2 months.

Point 1 in link below is about writing a letter if under treated for B12 deficiency with neurological symptoms present.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Some forum members resort to treating themselves if NHS treatment is not enough for them.

Some doctors and other health professionals may have misconceptions about B12 deficiency.

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...

Two B12 books 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).

BNF treatment info in above book is out of date. See BNF hydroxocobalamin link for up to date info.

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

Very comprehensive with lots of case studies.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

[Hayzedawn in reply to Sleepybunny]

Thankyou so much, yes sorry I meant to say deficiency, I was told new guidelines had came out that said b12 only needed to be given every 12 wks, ive been taking them monthly again for last 10 months and difference health wise is night and day.

[hdroxo in reply to Hayzedawn]

Don't fall for the three monthly rubbish, they are abusing patients on cost cutting and the jab is about 80pence, you been on it so long monthly that you will get nerve damage if you go 3 monthly, a doc done it to me back in 2011, was going abroad to get married and there for 3 months, had it month before I flew, thought I was going to die, spoiled my wedding as stumbling around with stick, told her relatives I had back injury, never been right since, even though changed surgery and was put back on monthly. Tried to take legal action but the Ombudsman sided with GMC that it didn't necessarily help with nerve damage, B******s I now get from Germany and top up after 2 week as to not be short, you can't overdose as you just lose it when emptying your bladder.

[mcg-woo]

It has been my experience that since I began more frequent B12 injections and I also take a high daily dosage of vitamin D for previous deficiency plus a daily multivitamin— that my immunity has been the best it has ever been in my life. I don’t get sick (knock on wood) and have noticed other signs of good health as well. I do feel like I still struggle with low energy levels, especially when my shot is due, but that’s about it.

I have PA but no other health issues yet (maybe mild vitiligo) and I am relatively young. I agree it’s the PA that would trigger low immunity. I believe that would be the case with any type of autoimmune disorder.

[Sleepybunny]

Hi again,

"I was told new guidelines had came out that said b12 only needed to be given every 12 wks"

"up till 4 years ago and it was put back to every 12 weeks"

There were no new guidelines issued nationally in UK four years ago that said injections need only to be given every 12 weeks.

The BSH guidelines were published in 2014 and followed the BNF guidance on treatment at that time.

BNF guidance was changed in 2018 to allow for maintenance jabs to be given every 2 - 3 months in patients without neuro symptoms. For patients with neuro symptoms, guidance remained a maintenance jab every 2 months.

See PAS news item from 2018 below.

pernicious-anaemia-society....

See BNF/BSH links in my other reply for more detail.

I think what may have happened is that the local guidelines for your CCG (Clinical Commissioning Group) or Health Board on management of B12 deficiency changed.

Each CCG/Health Board/NHS Hospital Trust in UK is likely to have its own local area guidelines on treatment/diagnosis of B12 deficiency.

I suggest you track down the local guidelines for your CCG/Health Board and compare them with info in NICE/BSH and BNF links.

To find local guidelines

1) Try a search of forum posts with terms "local guidelines" as some have been posted.

2) Try an internet search using terms " name of CCG/Health Board B12 deficiency guidelines".

3) Submit a FOI ( Freedom of Information) request to your CCG/Health Board asking for a link to or copy of local B12 deficiency guidelines.

I hope you are not in the area below which has a poor reputation for treatment of B12 deficiency on this forum.

b12deficiency.info/blog/202...

My understanding of BNF/BSH and NICE CKS guidance is that if you had neuro symptoms before treatment started or still have neuro symptoms then you should be on the BNF pattern for those with "neurological involvement".

How many loading injections did you have when your treatment started?

[Hayzedawn in reply to Sleepybunny]

Thankyou so much for that and very interesting, I was at neurologist all the times with symptoms of deficiency, I didnt realise for last 4 years it was reducing the b12 that caused it, I had balance probs, memory problems and loads more, during first lock down I was given a what nurse called a b12 kit, she showed be how to do injections on thigh. I managed to buy ampoules from Germany, I do monthly injections and all they symptoms I had have gone. Its scarey to think if it wasn't for covid id still be ill, I had no idea about 99% of the information on here.

[Blake55 in reply to Hayzedawn]

This sounds good. My wife has three monthly injections and sleeps a lot, has balance and memory problems, and gets very irritable. Her quality of life is not good and I long for us to be like it was before she took this worse than awful condition. She has a nodule in her lung and is susceptible to winter chest infections. I worry about her and long for things to improve.

I am glad to hear about you improvement and best wishes.

Tom.👍🏼⭐️⭐️⭐️⭐️⭐️⭐️

[Hayzedawn in reply to Blake55]

I was exactly like your wife, I had those symptoms too, does she self inject her b12? I bought ampoules of b12 solution from site that was recommended in this group, i do injection every month every 3 months just isn't enough. Hope things get better for her

[Hayzedawn in reply to Sleepybunny]

I was given daily injections for 7 days then it was monthly, thankyou for the information and your time D

[Sleepybunny]

Hi,

Many years without treatment brought me almost to the point of dementia and spinal damage. I think I was lucky to escape SACD, sub acute combined degeneration of the spinal cord but I do have some symptoms that appear to be permanent.

I was forced to treat myself as NHS refused to treat me.

"I had balance probs, memory problems and loads more"

You clearly had neurological symptoms so there's no way they should have reduced your treatment to every 12 weeks.

You could talk to PAS about your experience. Some forum members have been supported by person who runs B12 Deficiency Info website.

"I was told new guidelines had came out that said b12 only needed to be given every 12 wks"

You could ask your GP surgery for a copy of the guidelines the nurse referred to 4 years ago.

I suspect there won't be any or if there is, they will be local guidelines, only applicable to your CCG/Health Board and not to the whole of UK.

I suggest putting any request in writing to GP and practice manager, as harder to ignore. Some GPs find it hard to cope with assertive patients who ask questions.

[Hayzedawn in reply to Sleepybunny]

I'll do that thankyou, even my vision was effected, ive got arthritis too but I seem to have more movement in joints too with monthly injections, definitely going to look more into it thanks again. D

[Sleepybunny in reply to Hayzedawn]

May be worth if you submit a request stating it is a Freedom of Information request and State clearly in letter that you would like a link to or a copy of the new guidelines on B12 deficiency from 4 years ago, which changed your treatment from monthly to every 12 weeks.

There are rules on how a GP surgery should respond to a Freedom of Information request. Search on your GP website for "Freedom of Information" .

Keep request brief and polite. Keep copies of all communication.

If you start asserting yourself the GP surgery may not like it.

Be prepared for GP/patient relationship to come under strain.

I had some very unpleasant experiences and pressure was put on me to leave one surgery.

[Hayzedawn in reply to Sleepybunny]

I will, yes I guess I'll get same, I'll be ready though, I kept asking my GP if symptoms I had could be to do with b12 deficiency, I was told a firm no and I got same answer when I asked neurologist, so glad I found this group on line. Thanks again I really do appreciate it. D

[Litatamon in reply to Hayzedawn]

My neurologist told the doctor shadowing him that I need to eat more meat and that he never sees patients with b12 deficiency, as GPs take care ot it all.

My GP thinks b12 deficiency comes down to fatigue only. And has little interest of any other symptom, which she needs to understand better - to help in the diagnosis of other patients. And in order to not waste our health care dollars with unnecessary testing.

It is ridiculous.

[Hayzedawn in reply to Litatamon]

I agree, ive learned more in this group than I have from my GP or anyone else, I didnt even realise all the health issues neuro symptoms I had were to do with the deficiency, they were treating each sympton rather than cause, I definitely better than I was with monthly injections.

[mountainice]

Hello -

"I was told new guidelines had came out that said b12 only needed to be given every 12 wks"

"up till 4 years ago and it was put back to every 12 weeks"

I wrote to the Pernicious Anaemia Society and there have been no new guidelines - I was just checking with them because our surgery carried out an 'audit' and changed people's injection regime if they thought it was too much. I am still battling with them because the neurologist said I should only have 3 monthly injections even though at diagnosis I had neurological involvement. Unfortunately, most GPs just don't understand about B12 deficiency, neither does my neurologist !

Everyone is different as to what regime they need - unfortunately this was thrown back in my face as a letter from the GP said my treatment is 'individual person-centred recommendation from a Consultant for your treatment'.

I do my own injections too but I still want to have the correct treatment from the surgery.

[Hayzedawn in reply to mountainice]

I agree, that concerns me too. Ive seen a nurse twice in last 2 years and only spoke to gp on phone 3 times in that time too. 1 of the GP's at my practice actually stopped my b12 he said I didnt need it, that was after being on it 10 years, I was in terrible state by time they decided I still needed them. It really isn't fair especially the way the deficiency effects the body, I hate doing my own injections but its small price to pay, its over in a minute and that 1 wee injection is pure gold to me. D

[mountainice in reply to Hayzedawn]

You would think with all the people they must see or be in contact with who tell them they need more injections and how much better they feel, they would look into it themselves! I sent Dr Chandy's book into the practice, I don't know if anyone ever read it. I have been self-injecting since April '19, still not keen, like you, but we do it to keep well. Best wishes.

[Hayzedawn in reply to mountainice]

They just treated the symptoms and kept sending me for CT scans, crazy it really is. Thankyou and stay well too. D

[mountainice in reply to Hayzedawn]

Yes, they waste such a lot of money testing for unnecessary things when all it needs is a simple injection. I've had so many tests when I knew it was thyroid I had wrong too, proved them wrong on that when I started self-treating. For some things we really do have to be our own doctors. All the best for keeping well.