Refused B12 Inj at Drs

[LJH50]

I went for my 12 weekly b12 at the Drs this eve. I SI twice a week at the moment and had mentioned it to the nurse the last time I went there. Her Sister has PA so she completely understood my regime. Tonight however a different Nurse refused to give me it for 'over dose' reasons. I tried to explain but she wasn't prepared to listen. She said she wanted to double check with a Dr and came back a few minutes later and confirmed it. So I have now lost my right to one every 12 weeks thro the NHS. I'm happy to continue my regime by SI but it is so frustrating. 😕

[clivealive Forum Support]

I think you need to try and get an appointment with your doctor LJH50 and see if you can get your NHS regime restored. This "one size fits all" syndrome need to be addressed.

I wish you well.

[LJH50 in reply to clivealive]

When your Dr advises you to take b12 tablets to 'top up' I don't hold out much hope for anything helpful. Getting an appointment with a Dr is almost impossible too at the moment but I will try.

[clivealive Forum Support in reply to LJH50]

Do you have a diagnosis of P.A.? No doctor worth his salt would prescribe oral B12.

I had a similar experience many years ago. I have been on cyanocobamalin injections prescribed for "every four weeks" since 1970 and because I occasionally "felt the need" down the years to have them more frequently used to "sneak in" a couple of three week ones each year. I made the mistake of saying to my nurse one one occasion "see you in three weeks" - she said she would refuse to do the injection and reported me to my GP who hauled me in for an interview.

He didn't stand a chance - and anyway I stand six feet four tall - but since then my prescription has been changed from "every four weeks" and now reads "As directed" and I now have them permanently injected - every three weeks and more often if necessary - by my wife.

In fairness to the nurse back then she was applying "best practice"

Take care now

[LJH50 in reply to clivealive]

Yes I was diagnosed with PA a few years ago. My Drs offered me 5 loading injs then proposed one every 12 weeks for life. Armed with info from research mostly from this invaluable supportive forum, I said it should be 6 loading injs not 5 as that was the NHS guidelines for Gloucestershire. It was upped to 6 and as I felt absolutely no improvement I was offered another 6. My symtoms were a little better but still there. It was at this point I was told to take b12 tabs to keep me going between my 12 weekly injs. I asked the Dr why would b12 tabs help as I can't absorb it that way, the reply I had was 'oh yes you have a point' It's just a battle. I started to SI 3 x weekly and after a while things improved significantly. I've been honest in my self help journey. I now wish I had said nothing at all to my surgery staff.

[clivealive Forum Support in reply to LJH50]

Maybe there's a lesson for all our "dear readers" not to volunteer that we are doing what we need rather than what we are told.

[WiscGuy in reply to clivealive]

It's so sad that, instead of regarding medical professionals as our colleagues in our fight for the best possible health, we are forced to regard then as morons from whom we must prudently hide information.

[wedgewood in reply to WiscGuy]

Spot on !

[Miss-guineapig in reply to clivealive]

yes, I agree. X

[Nackapan]

Ive had that happen.I didn't accept it though and stayed in the surgery .

How dare they turn you away when booked in.

The nurse shoukd follow instructions from the Gp.

Write in.Simply request your b12 injections to be reinstated as you need them.

These nurses are way out of order, don't read the notes and wade in .

What they do not realise is once on injections few can then do without.

The body needs high levels as pushed on overide with the loading.

I've had to fight on alot of occasions.

It's easy for them if 3 monthly.

Clearly in their guidelines.

I thought I'd had a good rappor with the new nurse .

Only to discover she's put on my notes . Review needed in January .

To discuss with Gp.

Nothing said to my face!!!

Next time I see her will have to question it.

Never ending.

Do write .

It has to be scanned on your notes.

You also need an explanation/ reasons for any change in medication.

I demanded to discuss it with a doctor.

He then sought a neurologists advice .

Nurses have meddled with my NHS prescription.

How dare they .

Yes they have to only inject what's prescribed .

Not question the prescription!!

As we know 'overdose ' not applicable.

Its 'as directed '

On my prescription too.

I wish it simply stated 2 weekly.

It recently was just cancelled by a Gp I had a telephone consult with ,not even concerning B12.

[Jillymo]

How incompetent of your Dr to withdraw your injections when your diagnosed with PA. I would be furious and stuffing guidelines under their ignorant noses. Unfortunately for you Gloucestershire has a bad reputation for this sort of thing - mind you having said that it is wide spread throughout other counties.

Can you not reach out to who diagnosed your PA ? If me I would stand firm and fight my corner. Only a complete imbacile would sigest oral B12 to a patient with PA. I would be asking where he tdid his raining in nutrition and B12 deficiency. You must feel deflated.

[LJH50 in reply to Jillymo]

Deflated & frustrated for sure.

[andepande]

some nurses think they know everything and like to play god 🤬

[Miss-guineapig in reply to andepande]

I am a retired nurse, and yes I have met nurses like that. I used to get so angry…it was like ‘one size fits all’ x

[andepande in reply to Miss-guineapig]

I’ve had some lovely nurses who fully supported me . You can tell when you have a don’t question me I know best nurse then I shut up and say nothing and leave xx

[Miss-guineapig in reply to andepande]

So sad but true, thankfully most nurses listen properly and help the patient to meet their goals x Wishing you the best ande x

[andepande in reply to Miss-guineapig]

you too x

[Luac]

Do you have a PA diagnosis? Ask the practice management to put in writing why they have refused treatment against NHS guidelines whilst also requesting in writing their evidence for b12 toxicity so you can share it with the PA society. I am angered for you!

This will hopefully require them to reflect and look at the evidence, prompting the correct treatment.

[LJH50 in reply to Luac]

Yes I have a confirmed diagnosis of PA. I am composing a letter to my practice today.

[Cali25]

Hope you get it sorted, the very reason I don’t tell my practice about my SI

[wedgewood in reply to Cali25]

Yes , and because no one owns up to self -injecting , my GP said that I was the only P.A. patient in the practice that was not satisfied with one injection every 3 months . I was helping to get b12 ampoules for 2 other PA patients in that surgery , who would not confess to self-injecting ! That’s how not owning up to self-injecting works against us .

[Cali25 in reply to wedgewood]

I agree with you wedgewood but I had to battle for 18 months with belligerent doctors to get my B12 injections @1 every 8 weeks. So not willing to get my gp injections revoked because I SI

[wedgewood in reply to Cali25]

I understand Call25. I don’t blame you for that . Because I told my GP that I self-inject , I am now denied my NHS injection . I was also told that having injections more often than once every three months ,was “toxic” and that I woukd regret it ,! Best wishes .

[Cali25 in reply to wedgewood]

Shows how ignorant the GPs are obviously don’t read there own guidance! It clearly states every 8 weeks if you have neurological symptoms. Best wishes to you too.

[ACritical]

😖🤷🏼‍♀️You could invite them to a zoom session of b12deficiency.info/courses/

[Sleepybunny]

Hi,

Apologies for any abruptness but busy with other things.

I'm assuming you're in UK.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering various situations linked to B12 deficiency.

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.

Try to find out what's in the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board.

Should be some useful info in threads below.

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 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

"a different Nurse refused to give me it for 'over dose' reasons."

There are some articles in the threads about common wrong ideas health professionals have about B12 deficiency.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

See this link to thread I started on Patient Safety.

Has useful links/contacts for people who've had difficult health experiences in UK.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Sleepybunny in reply to Sleepybunny]

If you're in Gloucestershire, you may find this blog post about B12 deficiency guidelines in Gloucestershire interesting.

b12deficiency.info/gloucest...

[LJH50 in reply to Sleepybunny]

This is extremely helpful, thank you. My surgery rang me to say that if I stop my private/SI b12 injections they would reinstate my 12 weekly injections. I have a phone appt with my Dr mid January to discuss. In the meantime I have no option than to continue SI twice a week as normal.

I wrote a letter to them but it's all fallen on deaf ears.

[Sleepybunny in reply to LJH50]

I'm think PAS would be interested in hearing what has been happening to you.

pernicious-anaemia-society....

Tracey Witty from B12 Info.com (formerly B12 Deficiency Info) might also be interested.

b12deficiency.info/

Do you have any neurological symptoms?

If yes to neuro symptoms, my understanding is that you should be getting B12 injections every 2 months according to BNF (British National Formulary) and NICE guidance. See links below.

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

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

Have you looked at BSH Cobalamin and Folate guidelines?

onlinelibrary.wiley.com/doi...

If you have neuro symptoms, especially if you have any symptoms affecting your spinal area, you may want to point out to your GPs that inadequate treatment can lead to permanent neuro damage and in some cases can lead to spinal cord damage.

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

pernicious-anaemia-society....

My experience was that many health professionals had little understanding of the potentially severe affects of inadequate treatment for B12 deficiency.

Gloucestershire is due to review its guidelines on treating B12 deficiency soon so keep an eye on them.

Probably after the new NICE guidelines on PA and B12 deficiency are published in 2023.

nice.org.uk/guidance/indeve...

Click on Project Documents then Consultation Comments and Responses (42 pages)

nice.org.uk/guidance/gid-ng...

You may be interested in this survey of patients who self inject B12 in UK.

Interesting to read about their reasons for doing so.

Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey

Natasha Tyler, Alexander Hodkinson, Naeem Ahlam, Sally Giles, Andrew Zhou and Maria Panagioti

British Journal of General Practice 2022; 72 (725): e891-e898. DOI: doi.org/10.3399/BJGP.2021.0711

bjgp.org/content/72/725/e891

"a different Nurse refused to give me it for 'over dose' reasons. I tried to explain but she wasn't prepared to listen. She said she wanted to double check with a Dr and came back a few minutes later and confirmed it"

Maybe you could ask them for evidence that it is possible to overdose on B12?

As far as I know (I'm not a health professional) I don't think it is.

You could point out to them that Hydroxocobalamin is used in doses thousands of times stronger than that given in a B12 injection to treat cyanide poisoning.

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

Could be some useful quotes in these documents/articles to help you argue against them if you want to.

From Stichting B12 Tekort - a Dutch B12 website

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

From B12 Institute - Netherlands

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

From Mayo Clinic in US

This article discusses common misconceptions that health professionals have about B12 deficiency. Might be a good one to pass on to GP/nurse.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H.R. Wolffenbuttel, MD, PhD,a,∗ Hanneke J.C.M. Wouters, BSc,a,b M. Rebecca Heiner-Fokkema, PhD,c and Melanie M. van der Klauw, MD, PhDa

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

You could point your GP and nurse to the PAS page for health professionals.

pernicious-anaemia-society....

"I'm happy to continue my regime by SI but it is so frustrating."

I agree ...it's incredibly frustrating.

[LJH50 in reply to Sleepybunny]

Update.Had my telephone appt with my GP who originally diagnosed me with PA. She has referred me to a neurologist. She will not budge on giving me more frequent injections. Offered me a blood test to check levels but I said that was pointless as I had been SI as I'm desperately trying to feel OK. She won't reinstate my 3 monthly injections until I've seen a Nieurologist. Now saying it's not confirmed I have PA although she said originally I had and I have seen my blood results. Very confused. This sure is a lonely journey (apart from being part of this forum and hearing others experiences and invaluable knowledge)

[Sleepybunny in reply to LJH50]

Hi,

I'm sorry to hear the GP won't budge on reinstating your injections.

Have you talked to PAS?

They have a helpline that PAS members can use.

pernicious-anaemia-society....

PAS membership

pernicious-anaemia-society....

"I am composing a letter to my practice today"

Have you expressing any concerns you have about treatment in a letter to GP?

See letter writing link in my other reply.

This may not change GPs mind but it does mean that it is on record that you have queried your treatment. I would include a request to file letter with medical records.

Might also be worth looking into asking to record appointments.

I don't think GPs are keen on this but if you have symptoms that affect your memory and cognitive abilities then I think you would have good reasons in terms of disability. I suggest any request to record is sent in written form several weeks prior to an appointment to give GP chance to consider it and include reasons why recording is helpful/necessary eg memory issues, brain fog, concentration problems etc.

bma.org.uk/advice-and-suppo...

Have you discussed SACD with your GP? Maybe worth passing on PAS article about SACD to GP.

Responses on older threads often get missed so I think if you post this update as a new thread along with a link to this thread you will get more responses.

[Sleepybunny in reply to Sleepybunny]

If you haven't already read it then have a look at the link to my thread on Patient Safety which may give you some ideas as to who to contact if GP continues to be unhelpful.

The person who runs B12 Info.com (formerly B12 Deficiency Info) has helped some people on this forum.

b12deficiency.info/

[Nackapan in reply to LJH50]

Get the neurologist to listen.I got 2 weekly as I think the neurologist wanted to discharge ne as nothing found for him to work with.

Another neurologist was emailed by a new partner as practice changed management .

Again he sanctioned 2 weekly if I benifit. !!

So in the letter ro go I'm hoping they suggest getting your NHS ones back.

If you've a copy of your PA results take them with you on paper.

Also your initial blood results thst got you b12 injections in the first ace.

I did.

I was amazed the NHS had no copy of my brain mri result.

I took that as well.

DIY as usual.

Also ask to be copied into letter sent to gp.