Hi all I've just been for my 3 monthly injection only to be told that I might not be able to have them anymore!!! The nurse said that everyone who currently has B12 Injections are being assessed through there notes as to whether they can continue having them or have to take them orally,I have been having the Injections for the past 8 years so don't get what they are trying to do? Has anyone else had this?
Stopping B12 Injections : Hi all I've... - Pernicious Anaemi...
Stopping B12 Injections
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A lot of G.Ps are doing this. If patients don't have a positive intrinsic factor test, they are giving tablets instead of jabs. Unfortunately, intrinsic factor tests are unreliable, so having a negative test doesn't automatically mean that you don't have P.A. I would hope that people that are changed to tablets are tested for B12 levels in a few months, to make sure that they haven't dropped, meaning that the person isn't absorbing them and needs to go back on jabs.
Hi Topazrat thankyou for your reply I just don't understand how they can suddenly say we might be stopping you injections after 8 years I just doesn't make sense and like you say who's to say they will retest me or any of us to see if the oral medication is working
Pure cost cutting. B12 injections cost the surgery a lot, as there are many people having them - the price of the prescription, dispensing it, the cost to the NHS of the B12, the time that the nurse takes to give it etc, the costs mount up. Telling patients to go and buy their B12 pills from the chemist costs them nothing.
Sorry to be picky, but IFAb tests aren't unreliable. If they were, they wouldn't be used. It's just that they are only detected in around 50% of patients with PA, and regrettably, GPs don't understand this, or choose not to understand it.
Some patients who have been on B12 injections for many years can cope admirably with tablets, but some can't as they can't absorb. These decisions sound like they're actually 'Clinical Trials', and as such ought to be implemented using informed consent, not simply started to reduce the nurse's workload. There are ethical standards involved, not simply a case of 'oh, let's try this'.
I would love to be a fly on the wall when a patient is told that their treatment is being changed after many years, and they then enquire about the details of the 'Clinical Trial' and where's their informed consent?
It's absolutely disgusting that they put the cost of them before the health of the patients!!! I wouldn't be able to afford them so hopefully I will get them on prescription if I have to
If you have had a negative test for the Intrinsic factor Antibodies that cause P.A. , and that they are using that as a reason to stop injections , please point out that a negative test does not rule out P.A. . This is mentioned in the latest guide lines on the subject . The injection itself is not expensive. An injection costs me about £2.00 at the most . ( ampoules from Germany. Needles and syringe from U.K. suppliers). The NHS must be able to get them even cheaper. The surgeries want to employ as few nurses as possible , as nurses are paid out of the sum that the surgery gets from the NHS . So what is left over after paying for the running of the surgery , is allocated to the GPs ………….. That’s it . Draw your own conclusions .
PA patients could self-inject just like thyroid patients do , using the sub-cutaneous method . It works as well as the I.M. method, which is the only method that the NHS allows . (Sub-cutaneous is a suggested method printed on the B12 packets from Germany)
This started to happen just prior to covid. I was at a GGC meeting where it was announced that anyone without PA but low B12 could have injections until blood within range and then encouraged to buy their own B12 tablets if they wished to maintain. I had been having injections, for diagnosed PA, for 17 years. They suddenly stopped my injections telling me I do not have PA. Three years later, when I had all the symptoms back, they did parietal cell antibodies and Intrinsic Factor and it seems I do have PA after all. I have been restarted with injections. You can imagine how furious I am, because you do not get better and stopping me by saying I did not have PA has to be a lie. The GP even got a haematologist to phone me (not see me), to tell me I do not have PA. How can you trust any of them.
This is exactly what happened to me. I was on monthly injections after being diagnosed with PA in 2005. The Gp that diagnosed me, retired. As soon as he retired, and after treating me for 15 years with monthly injections, I was told I didn't need a monthly injection and it would be every 3 months. They requested a blood test the day after my b12 injection and tried to stop them all together as my b12 was elevated (obviously)I fought and fought to keep the 3 monthly injection. It's no where near adequate and my symptoms now, are debilitating. Now I fear they will try to palm me off with b12 tablets. They do absolutely nothing for me. It's terrifying that they're now trying to stop giving b12 injections to those who need them.
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This is happening to a lot of people lately.
Since an IFab test only returns a positive result when the Intrinsic Factor antibodies are active, there is no guarantee that this will happen on cue, when being tested. Martyn Hooper - the founder of the Pernicious Anaemia Society (PAS) - had to have three IFab tests to get a positive result, and therefore a PA diagnosis.
Others will have been told by less-informed doctors that they do not have PA- as their single negative result was erroneously taken as proof.
Still more patients being given regular B12 injections for a deficiency will never have been told a cause and never been tested - as the same treatment and frequency is often used (6 loading injections, maintenance at 1 injection every 3 months), whatever the cause, once a B12 deficiency has been identified.
Take a look at the NICE guidelines : published 6/3/2024:
"People have the right to be involved in discussions and make informed decisions about their care" is the first sentence.
1.4.3 : "When interpreting anti-intrinsic factor antibody test results: ....... be aware that a negative test result does not rule out the presence of autoimmune gastritis*."
1.5.3: "Offer lifelong intramuscular vitamin B12 replacement to people if ....autoimmune gastritis* is the cause, or suspected cause, of vitamin B12 deficiency ...."
* ...which is just PA rebranded.
FlipperTD is right - this looks like an experiment; a clinical trial but without patient consent.
I would ask how they have ruled out PA as the cause - or possible cause - of your B12 deficiency. Why do they think they were giving you 8 years of injections, and why do they now believe these may have been unnecessary ? The onus is surely on them, as they are now considering withholding what has been a long-term successful solution to your condition - not a cure - and potentially putting you at risk of deterioration.
Exactly I have no idea all I was told when I went yesterday for my injection was that they were referring everyone at the surgery to the doctor so she can look through our notes to see whether we still need to have the injections or not or whether we can manage on oral medication,as you said why do they think it's now ok after 8 years to possibly stop the injections?
It's good practice to review what we're doing clinically rather than simply blunder on. It is unlikely that the medical records will give them the information they seek unless there's a Positive Schilling Test report they've overlooked.
[Narwhal10 would certainly have something to say about this!]
There is a chance that some patients won't actually need on-going injections because they weren't diagnosed properly in the first place, simply put on life-long injections. That's how progress is made. There are ways and means of going about this. Simply stopping injections and substituting an alternative approach without informed consent or adequate research isn't good practice [in my book.]
Thankyou everyone for your replies I'm not sure how they can find all the information in my notes as they'll be plenty and loads of blood tests to look at as that was one of the things the nurse mentioned (8 years worth) I also have multiple other conditions.
They'll be lucky to find all the reports. Plus if your pre-diagnostic reports were clear, and DIAGNOSTIC then you do have to wonder what they can find by looking at post-treatment blood results. They should be seeking your informed consent to change any long-standing treatment like this.
my wife has been on 3 month injections for over 30 years in 2018 she was told the same thing and the service was withdrawn
In 2022 she eventually ran back into a low B12 situation- guess what - they have now put her on 2 monthly injections!!!
Oh wow that exactly what I'm dreading if they decide I don't need them and I go back to how I was 8 years ago that is something I definitely don't want!!! I think it's going to take 1 doctor quite awhile to look through all the patients who are currently on B12 injections and decide whether we need to keep have injections or not it almost feels like a lottery!!!
Hi,
Apologies for any abruptness, just having a brain dump of things that might be useful.
Do you have a PA diagnosis or do you suspect you have PA?
If yes to a PA diagnosis, can you find proof of it in your records?
Might be worth joining PAS (Pernicious Anaemia Society), a UK charity.
You do not need a PA diagnosis to join PAS.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
Lots of useful leaflets
pernicious-anaemia-society....
including......
"Treatment changed – What can you do?"
"Helpsheet for Patient-GP Discussion"
"Treatment is for life"
Page for health professionals
pernicious-anaemia-society....
PAS support groups.
Most meet online.
pernicious-anaemia-society....
These can be good places to swap information.
I think you can attend some support meetings without being a PAS member but check with PAS or Group Co-ordinator.
B12info.com website has lots of helpful info.
It's run by a UK campaigner on B12 issues.
I left other detailed info which I think might be useful in this thread eg links for those struggling to get adequate treatment.
Some links I post may have details that could be upsetting.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
There are many forum threads about B12 injections being stopped. Might be worth searching "Posts" using terms "injections stopped".
I was left untreated for years and believe I have suffered some permanent damage as a result.
Hi thankyou for your reply Sleepybunny yes I have a diagnosis of PA and I wouldn't know were to look for proof in my records?
Hi,
Accessing medical records
nhs.uk/nhs-services/gps/vie...
patients-association.org.uk...
"The nurse said that everyone who currently has B12 Injections are being assessed through there notes as to whether they can continue having them or have to take them orally"
In a similar situation I'd be asking practice manager whether the assessing of patients on B12 injections is
a) a review started by the GP surgery
b) a review started by the ICB (Integrated care Board) in England (Health Board Wales/scotland)
I'd also be tempted to submit a FOI (Freedom of Information) request to ICB ( or Health Board ) asking for a copy of review process documents for assessing patients on B12 injections.
You could also submit a FOI to GP surgery.
Being assertive may affect GP/patient relationship.
Many on this forum resort to treating themselves when NHS treatment is not enough.
I've gone on my GP records and it only goes back till last year no further,I will certainly bring your points up as the doctor is supposed to be ringing me to let me know the outcome
The archived NHS records should go back many years. It's worth applying as you'll have the opportunity to find the info for yourself. I've known members of other groups resolving their arguments with the facts!
Hi,
Just wondered if you were diagnosed with PA by a GP or specialist at a hospital.
If diagnosed by a specialist or if at some point you saw a specialist about PA then it might be worth accessing your hospital records as these may have a record of your PA diagnosis.
england.nhs.uk/contact-us/c...
To access your hospital records, you would need to make a SAR request (Subject Access Request).
england.nhs.uk/long-read/su...
ico.org.uk/for-the-public/g...
My understanding is that personal medical records made by the NHS should be retained for a minimum of twelve years and in some cases it's longer.
It's also my understanding (I could be wrong) is that there will be a paper medical file for patients at GP surgery. You could ask for access to this paper file. I suggest putting request into a brief letter to practice manager.
Informed Consent
My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the change.
As I understand it (I'm not a scientist or medical professional) this means that the GP should have discussed the pros and cons of changing to oral treatment, made sure patient understands the issues and have got patient's agreement before treatment was changed.
I'm assuming you have not given informed consent for the change to oral treatment previously.
It's possible that GPs may argue a change to oral treatment is not a major treatment change.
If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter to/conversation with GP that you have not given your informed consent for the change in treatment.
Keep a copy of any letters you send or receive.
Could be useful in case if there is need for formal complaint in future.
If the change to oral treatment is part of a study the GP surgery or ICB/Health Board is taking part in, has this study got "ethical approval".
You might want to ask if you are part of a study and if you are, you might want to ask further questions about whether the study has "ethical approval" from an ethics committee.
Most studies involving patients need ethical approval.
When you have time, have a look at this Patient Association article about Informed Consent. I think you'll find it useful.
patients-association.org.uk...
Neurological Symptoms
Did you have or do you have neuro symptoms eg tingling, pins and needles, tremors, twitching muscles, incontinence, eyelid flickering, tinnitus, memory problems, poor balance, clumsiness, bumping into things, dropping things etc?
If yes to neuro symptoms, does your GP have a list of all your symptoms including every neuro symptoms, especially any affecting spinal area?
See lists below.
I used PAS checklist below and added extra symptoms at bottom of list.
Symptoms lists
pernicious-anaemia-society....
b12info.com/signs-and-sympt...
theb12society.com/signs-and...
The reason I'm asking about neuro symptoms is that the BNF (British National Formulary) outlines a different treatment regime for those with B12 deficiency with neuro symptoms which has more loading injections and maintenance injections every two months.
Search for "BNF hydroxocobalamin" and look in section on Indications and Doses.
Your GP can find the pattern for treating those with B12 deficiency with neuro symptoms in their BNF book Chapter 9 section 1.2
If you have the energy, look up these UK B12 documents. Maybe you can get someone to help you.
1) "NICE B12 deficiency guideline" - published March 2024.
There are PAS articles about this.
pernicious-anaemia-society....
I have reservations about the new guideline. To my mind there is too much emphasis on treating people with oral B12.
2) "NICE CKS Anaemia - B12 and Folate deficiency" published a few years ago.
Some of the guidance in this older document differs from that in new guideline.
3) "BSH Cobalamin and Folate guidelines" published 2014
4) Try to find local B12 deficiency guidelines used by your ICB (England) or Health Board (Wales/Scotland) as your GP may look at these.
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them. Try to get exact title of the document.
Some local B12 deficiency guidelines in UK are not helpful. See blog post below.
b12info.com/gloucestershire...
Blog post was written before CCGs (Clinical Commissioning Groups) were replaced by ICBs.
Consequences
There may be severe consequences if treatment is delayed or inadequate including increased risk of damage to spinal cord.
It may be worth discussing these with GP or mentioning them in a letter as may make them think.
PAS have an article on SACD, sub acute combined degeneration of the spinal cord which might be worth passing to GP.
pernicious-anaemia-society....
PAS members can access the complete article.
pernicious-anaemia-society....
Link about writing letters to GP about B12 deficiency.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
b12info.com/writing-to-your...
Other UK B12 websites
The B12 Society
B12d.org
This one has some interesting online talks.
There should be other useful info in the thread I linked to at bottom of my first post.
Updates
If you want to update this thread in the future, it may be better to start a new thread and include a link to this one.
Responses on older threads sometimes get missed.
This is terrible. I don't get it. If they don't want to help us anymore than just give us our prescription so we could go about our lives without all this trouble . This is ridiculous . Recently, last week, I was doing some research to find some information about loading doses for my two friends who just got diagnosed with PA. The only thing I could find was one injection a week for 3 weeks and then to be put on sublingual high dose B12 tablets or another injection every 2 to 3 months. If I'm mistaken please correct me. I think they're trying to Gaslight us and change this again. When I first started 3 years ago, when I did a search for loading doses it was different. The information I found was twice a week for 4 to 6 weeks and then once a month injections. I can't even find that information again to send to my friends. I even went on to PAS and it has the same thing listed with a side note. Id have to go read it again, but I was surprised. I got the impression they had to post the legal doses, but didn't agree.
One friend has had one injection and now has to wait a week. Her body is reversing out and she is scared. She should be getting at least 2 a week if not more.
All we can do is self inject. My GP is finally on board and even agrees with me that we should be able to get a daily prescription to self inject. Why can't we? Grrrrr SI is our only recourse!
Good luck. We all need to somehow fight this. Picket the medical board, Someting!
It's simple. You go in for shots, that costs money. You can take oral on your own. Problem comes when you are a pernicious anemic. The 1% of an oral dose that is absorbed when you no longer have the body's absorption system due to PA is just not enough. Ask if you can do your own injections at home. Request insulin syringes with the small needle. Works well. I've used them for years.
I had a trial of B12 tablets under G.pbut only ad an attempt to reduce b12 Injections. It failed I lasted 3 weeks then I sister on a b12 injection.
I'd tried b12 tablets after my initial loading doses.
As was supposed to wait 3 m for next b12 Injection.
I lasted 5 weeks then went back on EOD as severe neurological symptoms.
My prescription was cancelled twice.
Opposed to many times to count .
Our surgery sent out a letter to everyone on B12 I jectiibs with a blood form.
If in 'range ' to be put on injections.
Can't find old post with wording.
Was very flawed
Was from ignorance .
I booked a g.p telephone consult .
It got resolved.
Apparently a letter shouldn't have gone to me ????
I've nevef had an IFAB test.
I knew nothing about it to ask for it BEFORE injections started .
As on no other medications.
Nothing else found to treat to date and B12 injections are the only thing that's helped I continue with my 2 weekly prescription.
Will no doubt be challenged again.
It helped as 1 neurologist proposed B1w frequency.
1 neurologist ( never met by partner Gp emailed fir advice)
'Okayed it '
To cover Gos back no doubt.
If you've seen a specialist who supported B12 injections 💉
Quote that in a short letter to surgery .( include practice Manager)
Ask for a reason why stopping them.
Ask why NICE guidelines are not being followed .
Ask why a prescription that is working is being withdrawn.
You don't need a blood test .
We do not need this stress .
Whilst I was in this situation I bought my own .
Needed that reassurance .
Mine prrscriotuon never actually stopped...so far!!
My mums prescription wax opposed by the district nursing team twice.
Low priority .
All done without Consulting my 94 year old mum.
During all thus I got them changed to 8 weekly from 12 .!!
G.p eas good as rang me saying the district nursing team had approached her wanting to stop them.
I was furious .
An HCA does the b12 between other patients in the area .
I have the B12 ampoules in the house ready as sort mums prescription.
I timed it once .
4mins .
Fight your case .
This must stop .
A trial of b12 tablets has to be an informed choice with consent .
All down to one thing cost and time ...cost of medication is more important than some ones qauity of life....
I have had injections for years, 18? Positive for Intrinsic Factor - Found out it was synthetic B12 - decided to try sublingual liquid - I haven't felt better in years! I haven't had an injection in 3 months! May be it's a blessing if you can't have the injections?
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