I have heard that nhs are stopping b12 injections due to the work load on surgeries.the nurse said that people will have blood tests and those who are above the level will then go onto oral medication.my concern is if they give you a blood test just after your b12 injection then levels will be high and I was at the impression that if your body does not absorb b12 then how will oral medication work.isnt that the whole idea of b12 injection straight into your blood stream.!!!the nhs will be sending letters out soon to whoever gets b12 injections .another government cut back while normal people suffer.
nhs stopping b12 injections - Pernicious Anaemi...
nhs stopping b12 injections
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This is the first that I have heard of it. I think that they are hoping that giving large doses of oral B12 will give some passive absorbtion, which will keep levels up. About 1 % is supposed to get absorbed this way.
Great if you are one of the people that oral doses work for, but disaster for the many of us that it doesn't! I can see a great many people being damaged if this goes ahead.
For the last few years, whenever I have booked my jab, I get told to hold a moment while they check. I presume they are checking for a positive IFab, which I have, and they have always booked them, maybe that is about to change
Several other people have posted about this happening in their area. I am curious to know where you heard this please ? By this I mean, is it nationwide in the U.K. or just pockets of locations ?
Best wishes.
🐳
Yes I have heard this is happening all over the uk and in Australia the b12 is in short supply as I have heard people on this site saying so .
So from us lot on HealthUnlocked ? Not your Integrated Care Board/Trust or the news ? Getting the source is always important because of misinformation, disinformation and mal-information.
I think there are 2 different issues here :-
1) People in U.K. are being retested and put on tablets.
2) People in Australia are struggling to import.
I may be incorrect, please remedy my knowledge if what I have written is inaccurate.
Sending my best.
Our old surgery sent letters to everyone on b12 injections with a blood form.It stated those that tested negative for IFAb antibodiesznd b12 was in range ,B12 injections would stop.
People would thrn have to take b12 tablets bought otc.
Also said overdosing on b12 not advisable and coukd cause harm.
Needless to say I booked a G.p phone appointment.
Didn't have a blood test and mh prescription continued
Yes, massive cost-cutting exercises and lots of people do not know. They believe that doctors know. When they do not. This is why membership of the PA Society and the work of CluB12 and the other organisations must be passed to GP surgeries. Plus, information from here.
When I was told I had a positive Coeliac Disease blood test, the female GP admitted she knew very little about it. I told her I would use the appropriate organisation. Needless to say, I was very unimpressed to find that was the second result I had. It grew legs and walked off. Exactly, the same as the first. So, when I was rushed in, I was asked if I used nitrous oxide to explain why I had PA/B12D.
Fortunately, I spoke directly to the caterer then had to explain what POTS (Postural Orthostatic Tachycardia Syndrome which I know your daughter has) to a neurology nurse. They ran off to ask a doctor how to test for it, when I could have quite easily told them myself. Even better, I was discharged home in the same state still unable to sit, stand, walk without severe tremors and severe vertigo. I knew that my small intestine had totally and utterly finally packed up.
Coeliac Crisis is a life threatening event and it was not on my notes twice. 🙀🙀🙀
That's terrible. So dangerous 😳
I've had to block my daughters discharge from hospital in the past.
She couldn't sit up without passing out .one nurse thought she was putting on an act ????
How was i supposed to get her out of the hospital.
At that stage a mature intelligent woman not able to stand up for herself as simply too ill. ( quite literally stand up)
Ludicrous and cruel like in your case .
Not having the expertise on hand on the ward is not a reason to discharge .
In the end a general medical consultant who she has seen in A and E came to the ward.
He was a formidable no nonsense man .
He believed her.
The right tests done.
B12 tested at last.
Follow up ect
Treated her with care in A and E .
One of those moments she will never forget.
The severity of symptoms were not recorded on her notes .
It was unbelievable as it was in your case .
It was only pushing for a referral to Queens UCH that had the expertise and did gruelling tests daily for a week.
She was when able wrote an eloquent detailed account of how she was treated .
( A senior English teacher)
The physiotherapist exceeded the ignorance of others .
And learnt some new words of describing her bad practice and total brutality.
Only good adjectives.
That's when I knew my daughter was recovering. She had her vast vocabulary back.
Has far more patience/ calm dealing with people than me .
I never did know what that pysio did or said.
Just saw the letter of apology.
Must've been bad to get that!
I've passed on what I can to G.p surgeries.
The posters never made the walls .
So in my car window .
Notice boards seem 'out of fashion.
Only poster was ;
Will not tolerate verbal abuse.
On a broken surgery door window !
I was saddened to see this but not at at all suprised .
It seems wholly unacceptable that this might be happening in what must be the last few weeks before publication of the brand new NICE guidance:
Vitamin B12 deficiency in over 16s: diagnosis and management
In development [GID-NG10176] Expected publication date: 06 March 2024
nice.org.uk/guidance/indeve...
There is a standard text included in NICE guidelines which on the one hand allows departure from them on good grounds, but on the other hand expects both doctors and patients to be supported in choosing to follow them:
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.
Have to ask, if this change is happening right now, is it because some people are trying to undermine the implementation of the guidelines in full by stopping injections before NG10176 is published and therefore in force? Or am I tending towards the paranoid end of things?
“ Have to ask, if this change is happening right now, is it because some people are trying to undermine the implementation of the guidelines in full by stopping injections before NG10176 is published and therefore in force? Or am I tending towards the paranoid end of things?”
Helvella …. Have to agree I had the same question
As far as I can understand it, the draft has now gone out to stakeholders for scrutiny. The guidelines are expected early March. At the moment, that is what my GP is waiting for before, I hope, he makes some good decisions about my future care. I self inject EOD and I’ve told him, he doesn’t object but won’t sanction it as he says it would be untenable for the surgery to cope. Well we all know the answer to that….think diabetics. 😏
Seems that we might all be needing to cluster together after the event to try to bring some sense to it somehow.
The intrinsic factor is a forerunner to the b12 deficiency so how can oral be considered an alternative ???
I question the logic ?
These suggestions were made by who I wonder ?
Thank God everyday for the group here and its knowledge
❤️
I am Pernicious Anaemia and need my B12 injections. I am also primary hypothyroidism plus later Hashimoto.
This illness also depends on healthy B12 plus other vitamins and minerals.
Hopefully, this is just a rumour otherwise I will be in serious difficulty.
Over in the thyroid chat, they are discussing a research study asking people to stop taking thyroxin for 6 weeks .
What is happening, do we have rights to defend ourselves under some kind of international convention?
That is a trial which is voluntary.
Other than some who are desperate to get off levothyroxine, and we have seen a few, I think they will struggle to recruit participants.
If we are all "tending towards the paranoid end of things", it could be because over the years we have been pushed into being suspicious of primary and secondary care decisions surrounding B12 deficiency treatment - due to evident lack of information, withholding of information, misinterpreting information, misunderstanding information and downright scaremongering.
I am of the belief that if enough people find the same concern uppermost in their minds, there may be a ring of truth about it.
Either that or we are all suffering from paranoia as a B12 deficiency symptom !
For the first time since I was prescribed B12 injections the ampules suddenly disappeared off my prescription list, just as some other things keep doing. I called up my surgery to ask why and ask for them to be put back on, a very flustered clerk said it was a mistake and had them reimplemented. Can't help thinking that it was yet another GP Pharmacy "review" looking for anything they could take off my prescription list! 🤬
Hi Star13,
‘I was prescribed B12 injections the ampules suddenly disappeared off my prescription list, just as some other things keep doing.’
There is your answer. Why is data not being transferred ?
So, I tell most people on here to apply for hard copies of their Health Data or Medical Records for a reason and be in charge of it. Most people nowadays, access their information through an App but lots of people have said it only has half the information or information is missing. Computer Systems have glitches, gremlins and they crash.
So, every time information is not correctly transferred, it can be deemed as a Data Breach. (The Records Management Code of Practice for Health and Social Care, updated 7 August 2023.)
😉
In my case it was the pharmacy as a bulk order refused despite its my prescription.I wax told everyone had 3 monthly at the surgery and the one ampoule sent there.
My individual prescription ignored then removed by the pharmacy admin.
Reinstated for this time.
Hi,
When you say data (GP records), what do you mean? Medical history not updated, scans and reports not added to patient data etc?
It really feels like the nhs are doing anything to reduce..everything tbh. I’m tired of the workload excuse. Too many don’t work to their time capacity and the attitude within their so called vocation in medical care is sadly lacking by many (not all).
Too much has and is going badly wrong sadly.
Hi Confused01,
So, in writing - hard copy apply for ALL your medical records. There is a standard letter called a Subject Access Request on the Information Commissioner’s Office.
You will receive your notes in hard copy - paper. Old fashioned and should have everything in them. Read them, you will invariably find errors but you will find dates and times of diagnoses, treatment.
When you are in control of your Medical Records, it puts you in a better position.
Gp records are available on Patient Access. Unfortunately it seems they are poorly or incorrectly kept.
My Mum requested corrections and they just made it worse. Important diagnosis dropped off completely. They just didn’t care or seems to realise the importance of.
Yes Confused01,
That is exactly what I am telling you. Get away from the computer, there are problems with the computer package Patient Access.
Your Trust or Integrated Care Board have an Information Governance Team and a Data Protection Officer (DPO) for a reason. So, when ‘the important diagnosis dropped off. ‘ Data was not transferred so it is a data breach.
‘They just didn’t care or seems to realise the importance of. So, who is they ? GP Surgery ? No, because you are reporting to the wrong person. It is knowing who does what.
You can make an internal complaint via the DPO and Information Governance Team. They can also amend your records. Please note that I.G. is a legal framework. When data is not stored or transferred accurately and correctly this can impact on Patient Care and Safety.
Please guard your Medical Records like your bank account. I am sure you would kick up a fuss if someone took £1500.00 out of your account. Exactly the same principle. You can report it to the Information Commissioner’s Office too.
🐳
Thank you.
One of the problems is that GP users don’t set the info as permanent. If not set correctly info/data drops off. What a mess!
As stated, there are problems with the computer package Patient Access. Similarly, doctors, nurses, midwives can only see limited information which impacts Patient Care. They are not computer experts, they are clinicians. Every Trust, ICB or Health Board also has an I.T. team.
By you being in control of your Health records, any appointment with a clinician, if they get things wrong, you can say, ‘No, I have my accurate and correct notes here. This is what happened, this is the diagnosis or treatment on this time, date, by whom and where. The computer has not stored or transferred my data correctly.’
If I went into one my bank’s branches and asked to see all transactions on 24 August 2008 they would be more than obliging.
It’s Secretary’s that aren’t system savvy, so computer literate..it’s one click.
No excuse there. They basically didn’t want to know..no excuse there too lol.
Narwhal10 is so right!! Ask for medical visit summary immediately after your visit as well a report of any type of labs or diagnostic testing. I recently found two major mistakes on my GI medical visit summary: mistake #1 I’m 5’7 the nurse input 5’1, mistake #2 I’m not a recreational drug user never have been and nurse input I was a recreational drug user. These are legal documents. So frustrating but where there is an overwhelmed human there lies a high probability of mistakes.
If you have time Narwhal can you mention this on thread below. Thanks.
Thread about Patient Safety, has useful links for those in UK having difficult health experiences with b12 deficiency.
healthunlocked.com/pasoc/po...
Sure, I need to link how poor Record Keeping is impacting Patient Safety.
I can't remember the last time I went to my surgery for a b12 injection. The ampoules are on my repeat list and they will prescribe them sometimes and sometimes they won't. Will only issue every 3 months - received one ampoule last time, but 5 the time before. Can't work it out.
For the rest of the time, I'm injecting weekly at home, from my own supply.
This has come up on a few other posts although I’ve not heard it directly myself. But from a friend that works at a local surgery it’s clear that scheduling and giving B12 injections is a massive challenge. She’s says that some days it’s non stop people coming in for injections. The clear worry is for those that have a condition, such as PA, that rely on injections that they may have to fight to keep them if it proves to be true that the NHS is looking to make savings.
Given the random variability in prescribing b12 and it's chaotic management this seems to be the usual chaos rather than some dastardly master plan by " government " or "big pharma". Not that this makes it any more acceptable - on the contrary evil is often a byproduct of bureaucratic incompetence - just ask your local sub post office master,
Absolutely - byproduct of bureaucratic incompetence. Horizon had massive ‘curve balls’. Any idea what the NHS computer systems are like ? 😱😱😱
Is this in Scotland? I haven’t heard about this but for a year now we have to go to the Treatment Room nurses for the injections as they were stopped in the GP surgeries. Used to get a box of 5 ampoules on repeat prescription, but due to the lockdowns this was changed to 2 because the use by dates were short . I think many more people will resort to sourcing them themselves
Thank you Dham,
There are wider issues. I feel it very important that people keep up to date with current issues within the NHS which include junior doctors striking, community pharmacies closing down which are struggling to source medications. These impact ALL patients not just those with particular diseases or who live in certain areas.
Then as the old saying goes Plan for the worst, hope for the best. Contingency plan.
🐳
My surgery has also subcontracted B12 injections to the Treatment rooms. Luckily I drive as it is a distance and difficult to get to on public transport. I used to get 5 ampoules prescribed; this!was reduced to just 1 before each injection. I had to email numerous times insisting that I need injections for life. I am now prescribed 3 at a time for now.
Interestingly, the local area health group guidance on B12 gives the cost to the patient per year and this cost ois based on being prescribed 5 ampoules each time.
Yes my mum was prescribed one ampoule each time. This became impossible to organises with a District nurse .
I had to chase all of he time to make sure it was there in time. .
Now get 5 after chasing +++
Then have to check exp.
dates .
Wouldn't it be wonderful if the HCA of nurse couid bring it with them like they do many other meds or vacs!???
Also frustratingly deemed of very very low priority and attempts to stop it without any consultation many times bt that team lead.
I self inject NHS prescription that's what the pharmacy I.T cant cope with ..
Its assumed injected at the surgery every 3 m.
A single ampoule prescription sent directly to the surgery !
You are right. They stopped my B12 about three years ago after having it for 17 years with a diagnosis of PA. They are supposed to give injections if you have PA. So they told me I did not have PA and it must have been a misdiagnosis. My symptoms were coming back gradually, so I did not notice too much, but last year some of the neurological symptoms came back. I asked GP to do B12 blood test. After stopping the B12 they never did any tests. Anyway tests showed B12 under range and intrinsic factor low (considered borderline). GP told me I did not have PA but prescribed pills. About a month later I looked at my notes and they have put that I do have PA and they are arranging for District Nurse to come round to give me injections, but I see another doctor has signed it. I know that the CCG as it was then, ordered doctors to give injections until B12 was within range and then tablets for maintenance, which patient can buy themselves over the counter. I was at a meeting of the CCG when they announced this. They did say that people with PA had to have injections, so I thought I would be fine, so my crafty GP got round it by saying I did not have PA, but now it seems I do.
Lilian15,
This is very serious. I am pleased that you went to a CCG meeting.
You were diagnosed with PA seventeen years ago.
Your GP has made a grave Data Breach by telling you, you do not have P.A. and stopping injections.
Each CCG has an Information Governance Team and it needs to be reported to the Information Commissioner’s Office.
Please think of your Health Records as more important than your Bank Account.
Date of diagnosis is synonymous with putting a £20,000.00 deposit on a house. I cannot imagine ANY bank turning around and saying, no you did not pay anything or that transaction did not occur.
Information Governance is a massive legal framework regarding data. Does not matter what industry or where you are in the world.
That's disgraceful!!
My mums b12 was tested without her knowing what the blood test was for.She's deaf. She also would not refuse but was shocked to suddenly see a stranger in her front room.
No appointmenr just walked in.
Keysafe used .
That and my mum worried about who coming in security ect
Now a new keysafe installed .
I'm on her notes to contact with a date/ day for anything .
I then had a phonecall from team lead wanting the new code .
It was bordering on scaremongering and harassment.
I live up the road from her.
The keysafe is for Aid call( pendant ambulance entry ) not their convenience . ( normally district nurse team only go 8 weekly)
She can get to the door to open it.
They only have to ring her landline( if she doesn't hear doorbell) or me the day theve booked to get entry .
Although I had answers for all the scenarios this lead gave it ended up a stressful long telephone call.
Triggered by me checking thrvee still got my mobile number and chasing the date for next b12 due .
I removed the old keysafe number from her notes.
In alot of their patients with dementia or daily visits needed I get the need for keysafe entry.
If they hadn't abused it .
It would've saved yet another job !!
Her b12 had dropped again despite a b12 I jection 12 weeks previously.
I used this to up her frequency via her G.p to 8 weekly .
I'd tried a few times as recorded dementia/ memory symptons occurring at least 3 weeks before next Injectikn.
The Gp listened .
District team not happy.
Wanting this PA diagnosis is worrying .
Retesting b12 worrying .
Retesting IFAB worrying
How can they use a test result that only picks up 50% of thise with PA ???
Then often ignore a positive result ??
Do they really think people choose to have b12 Injections for the 'hell of it'
Have they had a painful one ????
I'm so glad your b12 injections reinstated.
An HCA can do them.
A trained nurse has never given my mums.
Just under orders to reduce workload and stop 'unnecessary ' b12 injections
Even better if sc .
Not looking at the bigger picture of suffering and their workload increased by lack of b12 in the housebound !!
Obviously one of the points I made when she stated several times that b12was very very low priority
I'm amazed at the time she had on her mission. When phoning me !
Disgraceful doesn’t even cover this!
This is something that is of concern to many PA suffer's. Rather than put patients lives and wellbeing at risk by giving oral B12 which they are unable to obsorb it would make sense to show patients how to self inject. This would surely take the strain off of our surgerys and community nurses ! Of course that is far to obvious answer.
I was told when the nurse came out to me that they would be rechecking my blood levels. I asked them to refer to the guidlines and refused the test.
At present my B12 is still being prescribed. 🤫 🤞
It would indeed reduce pressure at the GP surgery this was part of my discussion. In my case after a bit of a to do with the practice I requested to be shown how to self inject & it was agreed, I only go to the surgery when I'm at home & due my injection. Thankfully I have a confirmed diagnosis of PA & hold a hard copy of the results as advised by the forum. I sincerely hope this is only a review & not applied accross the board in NHS practice
I’ve not gone in for my B12 in years, was shown how to self inject & do my own. Just picked it up this week, no way I’ll be letting them put me on tablets. I self inject anyway after years without. Testing on injections is crazy & some use it as an excuse to stop them. At start of pandemic some surgeries stopped doing & offered tablets.
Yes. I started self injecting in that period .I still do .
Wasn't shown though .
I do sc at home.
Have IM 6 weekly at the surgery
I was offered b12 tablets to try and reduce my frequency of b12 injections.
I agreed .
The trial didn't work.
My Gp put this on my notes.
My NHS prescription is 2 weekly .
I've had this challenged too many times.
I also have my own supplies
Hi,
I left a few links that might be of interest to you in my reply in the thread above yours "NICE Guidelines Delay?".
Unhappy with treatment?
How to write letters to GP about B12 deficiency
b12info.com/writing-to-your...
See link about Patient Safety in my reply to Narwhal10 on this thread.
I suspect your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland is running a review of patients on B12 injections.
Search online for "(name of ICB/Health board) nhs review B12 injections".
You could also contact ICB/Health Board directly and ask them if they are reviewing patients on B12 injections.
ICBs and Health Boards usually have a medicines optimisation team who look into ways to make treatment more "efficient".
Maybe submit a FOI (Freedom of Information) request if they are, asking for details of the review process and a link to or copy of it.
Also possible to submit FOI to your GP surgery. This might irritate them but you are entitled to do so.
You could mention that nurse said "people will have blood tests and those who are above the level will then go onto oral medication" and you would like a copy of the review process for people on B12 injections.
People facing a major change in treatment should give informed consent.
Have you given informed consent for this change?
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 (possible another health professional) should have discussed the pros and cons of changing to oral treatment with you, made sure you understood the issues and got your agreement before they changed your treatment.
I'm assuming you have not given informed consent to a change to oral treatment previously.
Some GP surgeries might argue that changing from B12 injections to oral B12 is not a major change.
If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter you write to GP that you have not given your informed consent for the change in treatment.
If the change to oral treatment is part of a study the GP surgery or ICB/Health Board for the area 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.
Studies involving patients usually need ethical approval.
BMJ article on ethical approval from 2009
Note on oral treatment - B12 Institute (Netherlands)
b12-institute.nl/caution-no...
This (in my personal opinion) excellent article mentions oral B12 treatment.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Search online for "Cochrane review oral B12" which should show an interesting article about comparison of oral B12 treatment with b12 injections.
May be more useful info in pinned post "Various B12D/PA resources" on right of screen if on computer.
Whenever someone tells you "I hear that" .. . . . Before ye go any further ask them who told them and how did they know.. . . . . . If the answer is less than required then probably the best thing to do is ignore whatever it is . . . . . . . These things get spread around and come back around time and again. . . . . . . If you have any doubt ask your own nurse. . . . . .
Like I wrote the nurse told me at last injection.
Bad nurse. . . . . . . Should not be so
I have it on my blood test result notes every time they get a blood test that as I have Pernicious Anaemia then testing for B12 should not be done.
As a retired nurse, all I can say about the nurse who said is….she has little knowledge of PA. Its do maddening isn’t it 😡
In all fairness to the nurse, I don’t think the current teaching does cover the ins and outs of B12 and The various causes of deficiency.
This is very scary. Something has to be done to get them to allow us to self inject legally. They're letting people inject ozempic and Insulin why can't we inject our B12? If they don't want to do it, let us do it legally! Don't make us jump through hoops like this anymore. If they don't want to pay for this, the next step is to allow us to treat ourselves. Maybe that's where this is heading. This is the time to fight to get the right to buy our own B12, in our own country, to treat ourselves! If they don't want to do it, we are happy to do it ourselves. Just allow us the right.
I dont that it is "illegal as such". . . . . . . . . . Frowned upon yes. . . . .
Injecting subcutaneously is different than injecting intramuscularly. The risks and side effects are different and the injection sites need to be considered seriously.
Buying B12 is not a problem on the global market therefore, I don’t understand your comment.
You can treat yourself with B12 but if you get infected injection sites or hit a nerve when you inject, will you expect the NHS to carry the costs?
For these reasons, it’s important to discuss treating yourself with your GP. If you are trained and monitored then you have backup support if something goes wrong.
Think about it!
My comment is that I have to buy my B12 overseas because I can't get it from my doctor everyday in the US. So therefore I can't actually legally, through my medical doctor, get an injection every day. I have to buy it from Germany, have it shipped over here to inject myself against what my doctor would like me to do. I'm not really sure what the big deal about my comment is it was just a simple comment that I have to buy my B12 from Germany because if I could legally get it here I would. But I don't know where to buy it in the United States that it doesn't cost me $135 a vial. Are you saying that it's not a problem to get B12 anywhere because as far as I know I've been struggling for two years trying to get B12 so I'm not real sure what your comment is about. I think I'm going to stop coming on here because everything I say lately people have been questioning it so evidently I guess I just don't know what I'm talking about anymore so I think I'm going to not comment too much anymore. It was just a simple comment not sure what all the answers are about it
Perhaps people assume you are in the UK, as I did and therefore answer in accordance with NHS or NICE guidelines?
One thing that puzzles me, is why you think you need an injection of B12 daily? Do you have a deficiency or diagnosed illness?
Yes, I have PA and SACD and everything that comes along with it. I inject daily. Many of us do, sometimes more. I'm in the US. Not everyone is allowed to ship here. Buying b12 is a challenge and when NHS say they are going to cut patients off, it is a scary situation. It makes you wonder when it will happen here. Or when they will stop allowing Germany to ship to the US. Some of us need injections more than once a day. So buying b12 and shipping it and all the drama that can come with that, like lost packages, extra duties, being out of stock, and all that, make getting b12 a challenge for some of us. Not to mention cost. It's $30 to ship to the US. So perhaps illegal isn't the exact word to use, but what is, then?
Totally agree with you it’s ridiculous that we have to buy B12 abroad because it’s not available otc as it is in some countries. The problem is Drs don’t have a clue that we need it as frequently as we do because of the damage caused. It’s hardly an expense when you think of what they have to pay down to the damage caused by neglect. I know I’d be a lot better if my B12 wasn’t stopped & I’m furious that I had to find out & treat myself.
I was on B12 injections for 13 years until Covid came along and my Doctor asked for a blood test and because my levels were high he stopped them! I tried to go without but it was impossible so I have been paying £30 to get it done privately for the last 3 years.
That’s a shockingly high price to pay for an injection that should cost no more than £3.00 if self injected
Have you considered self-injecting? If you are put off by the thought of Intramuscular Injections ? ( 1 inch needle into your thigh muscle ) you can use the sub-cutaneous method (sub-cut ) using a much shorter injection needle into the fat layer just under the skin of the front of your thighs or your tummy fat .
You can obtain b12 depot ampoules ( hydroxocobalamin) from certain German online pharmacies . Syringes , needles etc can be obtained from U.K. medical supply firms .
this is what they did to me three times the Dr’s told me my levels were fine after just having a b12 injection. Even had a dr tell me years ago when they 1st diagnosed me as b12 deficiency that since he told me to do my own injections at home. He said if I missed or didn’t want to inject myself “you’ll just feel tired!” BS
I’m 55 yo male finally diagnosed at my insisting on further testing with PA.
This past year and already 3 upper endoscopy they have found complete distruction of my parietal cells, multiple polyps with low grade dysplasia, metaplasia, gastritis and inflammation. The lining of my stomach has changed to that of intestines and all the images the show looks bad. I am not well and when I asked dr in his best medical condition how many years I had left, he reluctantly replied 10 years maybe longer and that they could take sections out. I don’t think I want ten more years feeling like this and all the pain, dr and therapist couldn’t keep my 32 year marriage together and now I’m alone depressed and in horrible body pain, nerve pain, spine pain, etc… it’s a damn vitamin that they hold out on us as much as possible, I never have been able to convince them to give me more than 1 shot a month, now look at me. My 26 year old daughter has b12 deficiency and the won’t do tests for PA!
Medical system in the USA sucks at best!
Without parietal cells you will never absorb oral b12!
I believe Doctors are ranks 6th leading cause of death in the USA, but my therapist says she thinks it’s more like 2nd or 3rd leading cause of deaths here!
Good luck all!
I could post photos of what happens to your stomach if interested!😁🙏
God bless us all🙏
Many will believe you. . . . . Everything in the US has to be Numbers and Procedures are very important . . . . . . . They can charge for procedures. .. . . . We have no such nonsense and I'm glad of that. .. . . . I had the opertunity of living in either Canada or the US and it didnt take e long to book my flight home. . . . . . Lordy. . . . . Everything was money and the taxes were as bad as here. . . . . .
So sorry to read that. Terrible we have to beg for treatment. They wouldn't treat a diabetic like that. It's just a water soluble vitamin they treat it like a controlled substance. I would like to see the pics. Docs in UK were dire. In UAE found a great doc but he moved abroad. He said I could have injection everyday if I wanted it was good for me. Came across a new doc who wants to test my levels as it's dangerous if they are too high omg here we go!!! Said I couldn't afford test just now. I can I just don't want it
I would love to get them to you, but I’m not sure how to do it. I can always email them I suppose? Let me know, chris.
this is exactly what happened to me a few years ago.
I had my b12 then routine blood test and this young doctor told me after 40 years I didn’t need them anymore. I nearly died but thankfully changing health centres and a new doctor he stated me on them again and I’ve picked up but never to be the same.
It’s so wrong and happens to so many of us.
Fortunately there are so many kind, caring and clever people on this forum to keep us going. I wish you well x
Randomly I received a text from my local pharmacy recently to inform me I had a prescription ready to collect. Which actually turned out to be a B12 ampoule?? This has never happened before. I have had no contact from my Gp practice and still have an appointment booked for a couple of weeks (so far) for my next injection (8 week intervals). Prior to this appointment I will be visiting the practice for a blood test so will clarify the situation then.
I wonder if your post explains why?
I am more than happy to administer my own injections as a retired nurse but concerned for others who may be convinced that tablets are an adequate alternative!!!
They tried this a couple of years ago. I really could not cope with the pills so I was allowed back on the injections. Surely the extra blood tests etc would use up just as much of the nurses time? I will go and do it myself if it happens again and I will warn my practise that I will sue if anything goes wrong!
They shoukd know once b12 levels are kept high on injections they need to stay high for your body to utilise it
12 months ago I mentioned to the nurse that gave me my 12th weekly B12 that I self inject weekly for then to be told my surgery refuse to give me any more injection so I'm on my own now. The NHS in the UK is on its knees! 🙄
Here is the problem. The tests doctors order are extracellular tests meaning the test picks up residuals from supplements and food. An intracellular test confirms whether or not the nutrients are entering the nucleus of the cell for delivery. If they base results on an extracellular test, it is erroneous. Many people have partial blockage in the cell receptors which prevents absorption of B complex and other vitamins and minerals. This is why people lose muscle mass due to malabsorption.
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