Can’t get b12 injection

[Spirit26]

Live in Gloucestershire, Gp not giving b12 injections. Have had b12 injections regularly before Covid. What’s going on. Pins needles, brain fog fatigue, headaches, Told by receptionist to call back in September to book appointment, apparently according to Gp, b12 lasts in system for 6 months. I feel the b12 only lasts for a maximum of 1 month. Can any one help please.

[Davepolo]

Same thing happened to me been advised to take supplements which are not working two bloods tests and ecg still no joy very disappointing from nhs

[wedgewood in reply to Davepolo]

You must send a letter to your GP ASAP , and to the surgery manager (much much better than a phone call — the letter has to be put on file ) . The “corvid” instructions re B12 injections , have been changed since they were first issued , and you should be able to get your injection because your symptoms are returning . You must say how worried you are and fear permanent damage .

But we do know that Gloucestershire is a county where, for goodness knows what reason , it is difficult to get correct treatment for P.A. ( I live there too) That’s why I have had to resort to self -injecting .

It is of course total nonsense to say that P.A. / b12 deficient patients with absorption problems , can store B12 in their systems for 6 months . There is no scientific evidence for that. Best wishes .

[Davepolo in reply to wedgewood]

Thanks for your advice I’m from Merseyside my wife’s surgery still give b12 injections mine has stopped I think it’s a financial decision

[Spirit26 in reply to Davepolo]

The Doctors don’t seem to know much about the condition.

[wedgewood]

Please read the reply that I accidentally sent to Davepolo insread of you ! ( I must need aB12 injection)

[Sleepybunny]

Hi,

I'm sorry to read you are having such a difficult experience.

Forum members from Gloucestershire often report problems getting appropriate treatment and the pandemic has made things even more difficult.

Have a look at this blog post about B12 treatment in Gloucestershire from B12 Deficiency Info website which may help to explain some of the difficulties you are having.

b12deficiency.info/blog/202...

Have you considered joining PAS (Pernicious Anaemia Society) ?

There is a PAS support group in Gloucestershire although no meetings at moment.

If you join PAS you can access local contact details.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

PAS website has section with useful leaflets eg "Treatment is for life" that PAS members can print out for themselves and for GPs.

pernicious-anaemia-society....

B12d.org has some online meetings during pandemic.

b12d.org/event

B12 Deficiency Info website has a lot of helpful info.

b12deficiency.info/

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of b12 deficiency with neurological symptoms.

You mention pins and needles and brain fog which are usually considered to be neurological symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs

Your local MP or representative of devolved administration in Scotland, Wales, NI should be interested in your story if you are struggling to get appropriate treatment.

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.

healthunlocked.com/pasoc/po.....

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

Warning

I believe that many UK patients who have been on B12 injections may find it difficult to get them reinstated even after pandemic is over.

There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.

Challenging GPs

If you want to challenge GPs decision to delay treatment, I suggest putting queries about treatment into a brief as possible, polite letter to GP.

Try to include extracts from UK guidelines etc that support your arguments.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

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...

Should be other useful info in the links to other threads I included in this post.

BSH (British Society of Haematology) has produced guidance for GPs to use during pandemic.

See next link to most recent PAS news item about this.

pernicious-anaemia-society....

If you read the comments under the above article, you'll see that you are not alone.

"apparently according to Gp, b12 lasts in system for 6 months."

I think your GP needs help.

Check that your GP surgery is using the latest BSH guidance. They could be using out of date BSH guidance.

You could ask for a copy of the guidance they are using.

You could draw GPs attention in any letter/phone call to the potential for permanent neurological damage if you are under treated. You could also write or ask to speak to practice manager.

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....

Blog post from Martyn Hooper's blog, mentions SACD

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

GPs can find it difficult to cope with assertive patients.

B12 article from Mayo Clinic

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

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Spirit26 in reply to Sleepybunny]

Thank you for all the information, I am really grateful.

[Hidden]

There is an update on the PA website insisting this must be given as live saving... please have a look and write to GP, and PCT. good luck. I am self injecting, although my nurse did injection last week, why is it so different across the country.

[Spirit26 in reply to Hidden]

Hi Gloucestershire seems to be one of the worst places to live if you need b12 injections.

[Sleepybunny in reply to Spirit26]

If I had to sum up what to say to people in Gloucestershire who wanted good treatment for B12 deficiency in one word, it would be "Move".

I'm sad to say that many people from across UK on forum (and elsewhere in world) report that their doctors do not have a good understanding of B12 deficiency.

Compare link to Gloucestershire's current B12 treatment pathway with the older local guidelines on B12 deficiency that I think some GP surgeries in Gloucestershire may still be using.

Gloucestershire treatment pathway (introduced in 2020)

g-care.glos.nhs.uk/pathway/...

There is a statement about B12 treatment in Gloucestershire during Covid pandemic on this page.

Click on the blue words in the box about Covid which takes you to a statement.

It also refers to out of date BSH advice. See link in my other post to up to date BSH advice.

The statement says that the CCG in Gloucestershire is strongly encouraging the use of oral supplements rather than injections and it means not just in pandemic.

Gloucestershire guidelines from 2004 which were not updated for many years.

gloshospitals.nhs.uk/our-se...

[Hidden]

My doctors also not giving injections and patients have been advised to buy tablets.

I was pleased not to have to visit the surgery at that time but now have not had an injection since January and am not feeling well so I have doubled the dose to see if that will help but not sure if ok to do that does anybody know

[Traceee in reply to Hidden]

Hi

Yes it is absolutely fine apparently to double the dose as this is actually what my doctor advised me to do , although like you I haven’t had an injection since January and doubling up doesn’t seem to have helped . Good luck !

[Hidden in reply to Traceee]

Thanks for that I’ll persevere til they’ll start doing the injections again

[Allyma in reply to Traceee]

You can buy a b12 spray from boots think you have to order it I had to its called vitzspritz it costs £10 its better than the tablets.

[Traceee in reply to Allyma]

Oh ok thanks for that. I will look into that

[DeeD123]

I have just had a drive through jab in the surgery car park. Two weeks overdue and definitely needed. I told them I was sending off for supplies To self inject as they were Refusing to treat. Delayed but it Worked

[Traceee]

I have had the same problem, terrible symptoms. Telephoned my dr 3 times but have been told to just double the supplements and that it is a financial decision because the injections are not coming back after covid because apparently they have been proved to make no more difference than the supplements. They obviously don’t suffer!!!!!!!

[Hidden in reply to Traceee]

Ask GP for copy of proof that injections don't work,so that PA and NICE can update their guidelines!?

[Laura1961]

I live in Dorset and my injections have been stopped also. I have written twice with copies of the new guidelines and phoned and have received a letter telling me that they are following guidelines and will not reinstate B12 jabs until they are told that they are able to. I was told to take supplements which i did not at its pointless and had to pay privately to have my injection. I have to have them 8 weekly and it looks like the next one will have to be privately also. My surgery are now seeing some patients face to face but still will not recommence injections. The whole thing has been such a worry.

[Catsgalour]

I live in Gloucestershire to but don't think it will matter where you live Spirit26 ..? We are not regarded as urgent or ill despite so many people suffering so badly with this condition! I think my life would have been a lot different had it been diagnosed when I first had problems when I was very young ..? Now almost 70 finally diagnosed by a lovely doctor when I was in my 50's! However NHS do not give you anything like enough B12 to help you live well or recover so strongly suggest you take matters into your own hands and Self Inject! Can't tell you what a difference it makes and you are in control so it liberates you so much! Take Care and stay Safe xx

[Spirit26 in reply to Catsgalour]

Hi Thank you for your reply, I am going to self inject, The jab the doctors give out doesn’t last.

[Catsgalour in reply to Spirit26]

Good for You .. You won't regret it and so much help and advice on here! Take Care x

[Spirit26 in reply to Catsgalour]

Thank you

[TFH1]

Hiya I also live in Gloucestershire and was told that all b12 patients were being swapped to high dose tablets. I refused and explained that as I had tested positive for intrinsic factor antibodies, I would not be able to absorb and they reinstated them with very little fuss. I basically just said a clear NO! and they accepted that.

[Spirit26 in reply to TFH1]

Hi I don’t absorb the b12, going to self inject told to wait till September, as I would have a six month supply stored in my body. Doctors need more education on b12.

[Retteacher in reply to Spirit26]

Ask them to explain how the B12 stored in the liver is released. As I understand it, the stores are released into the bile and then has to be reabsorbed via the gut which in PA doesn't exactly work well.!!!! In Dr Chandy's book , he talks about the effects on his patients when he was forced to stop giving them injections. Symptoms returned surprisingly quickly ,well before six months.