UK B12 deficient patients, paltry 3 monthly maintenance dose of B12 injections is based on cash not care!

Feb 16, 2016 | Guidelines, Misconceptions, Serum B12 test, Treatment | 20 comments

The question you will be asking of your GP after reading this is ‘show me the proof that 3 monthly injections are all I need’.

The biggest problem B12 deficient patients face once they’ve achieved a diagnosis is desperate under treatment. Our maintenance dose is listed in the NICE Guidelines ‘with neurological involvement’ at two monthly intervals and without at three monthly intervals. Unfortunately many doctors do not take into account neurological symptoms and the patient is automatically placed onto a three monthly maintenance dose of B12 injections after loading doses.

Vitamin B12 is water soluble. The rate of excretion is fast, there is no internal cupboard where we can pop a bit by for a rainy day. If we are lucky and our mother had a good supply of B12, we would be born with a store, but this eventually runs out or stops being accessible for many reasons.

Our maintenance dosage is based upon cost saving exercises and absolutely no care for the patient. Isn’t it time for a change in this old way of thinking?

The fact is that GP audits (and no clinical evidence or patient involvement of any kind) eventually made three monthly injections the ‘optimal’ maintenance dose of B12. These were purely designed to save money and had nothing to do with patient care, this situation needs an urgent overhaul.

It appears that without correct analysis, observation or consultation with patients many of our doctors truly believe we only need four injections a year because this is what has been repeatedly presented to them.

The content of these audits which I detail below, have become an intractable belief and have been cited by later research which then further eroded any good common sense. Worse still, other countries cite UK GP audits in order to back up rationed treatment for their patients too!

There would rightly, be an almighty uproar if every anaemic patient were told that they needed exactly the same amount of iron only 4 times per year, and all diabetic patients were told they need the same dose of insulin quarterly? Surely we’d think it crazy if it was suddenly decided that just 4 doses of vitamin C a year cured scurvy?

This post tries to detail how our three monthly injection regime was arrived at from  the first study and the following three GP audits.

This whole sorry tale below leaves patients without proper care and vital treatment and seemingly ties the hands of doctors.

None of the Marketing Authorisation Holders in the UK use any clinical evidence for ‘optimal dosage of 3 monthly treatment’ and base the information written in their Patient Information Leaflet’ upon BNF Guidelines and the Martindale Drug Reference book. Public Health England, NHS England and NICE have not been able to provide any clinical evidence either.

This is what the BNF said –

Thank you for your email to BNF Publications. 

Unfortunately we are unable to access our archives to check what evidence base was used to determine the 3 monthly dosage of hydroxocobalamin. 

BNF content will be reviewed in line with the SPCs for future updates of the BNF.

Rather like saying ‘the dog ate my homework’ don’t you agree?

No common sense has been applied in these audits and yet people adding their names to these are highly educated. When have patient voices ever been heard and acted upon in B12 deficiency?

• The first paper you see is from 1971 this discusses excessive prescription of B12 and seeks to ‘standardise B12 treatment’.  Like that would ever be appropriate!

• The next report in 1983 carried out in by a Leicester GP training practice. This decides that monthly B12 injections should move to ‘optimal’ 2 monthly frequency. It sets narrow and flawed diagnostic criteria and unfortunately set the tone for the following GP audits and it still largely influences diagnosis today.

• In 1985 a further study from Coventry was published titled ‘B12 injections: considerable source of work the district nurse’ this report tries to address the change from cyanocobalamin to hydroxocobalamin and just 2 years later decided that optimal B12 treatment is three monthly.

• The final audit took place in 1995 again in Leicestershire and this report used the same flawed diagnostic criteria and further reinforced the mad idea that humans only need vital B12 four times a year.

These repeated audits did not allow for GP’s to treat patients as individuals.

None of it is based on science or any clinical evidence – it’s based on pounds. The patients were dictated to, never consulted and neither were the nurses who administered B12 injections.

I have split this post into the four different reports and have highlighted extracts to demonstrate just how ridiculous and harmful they are;

First you will see a report from 1971 that in a study on excessive prescribing, B12 treatment was singled out, possibly due to the idea that GP’s were giving patients B12 injections, willy nilly as a ‘tonic’.

To see the full text follow this link –

I have chosen some parts to highlight below;

1971 Expected and Observed Values for the Prescription of vitamin B12 in England and Wales

A.L. Cochrane and F Moore M.R.C. Epidemiological Research Unit

(For your info – Epidemiology is the study of how often diseases occur in different groups of people and whyEpidemiological information is used to plan and evaluate strategies to prevent illness and as a guide to the management of patients in whom disease has already developed. – I add this meaning since the study below and the following audits, had the very opposite effect on preventing illness in B12 deficient patients.)

This report states;

There is considerable literature about the oddities of the prescribing habits of British doctors, the factors influencing them, and the attitudes of doctors to prescription, but there have been as far as we know, no attempts to compare quantitatively the expected amount prescribed, on the basis of good clinical practice, with that actually prescribed. There are in general three reasons for this ignorance of the prevalence of common diseases, the lack of specificity of particular drugs for particular diseases, and the lack of standardisation of therapy. Such a study requires a drug which is practically specific for one condition whose prevalence is known, and the one which approximates most closely to this appears to be vitamin B12. We should like to stress that B12 was selected for these purely epidemiological considerations and with no malice aforethought. This paper describes an attempt to measure the expected and observed values for the prescription of B12 in England and Wales for the year 1966.

Can we really expect that any B12 therapy can be totally standardised? Aren’t all humans different? Aren’t the severity and the variety of symptoms different in each patient? The length of time the ‘illness’ has progressed undetected surely would be taken into account if logic were applied?

Isn’t the statement ….’with no malice aforethought’ akin to saying I don’t wish to be rude, but….’

Why make a point of such a statement when the irony is that the whole study is designed to cut down on perceived (and not scientifically backed up) ‘excess’ treatment which served to harm patients and did not, by any stretch of the imagination – ‘prevent illness’?

Estimates for observed Prescriptions for parenteral B12

……It is clear that there is a considerable excess of observed over expected.

Reasons for Excessive prescription

a survey of the prescribing habits of a 2000 random sample of general practitioners in England and Wales in 1967 showed that 33% of all prescriptions for cyanocobalamin and hydroxocobalamin in 1967  were for conditions other than ‘pernicious anaemia and other hypochromic anaemias… 


We are very conscious of the imperfections of our data……..We are also aware in retrospect that 1966 was not a good year to choose as it was a period of change in ideas about the correct dosage of B12 for pernicious anaemia……
………we still however believe our exercise to have been worthwhile as it has shown how substantial financial saving could be made at no cost to health and a considerable saving of inconvenience to patients, doctors, and nurses.

Is it really an inconvenience to the patient to have a life-saving injection at the correct frequency for them? We don’t think so. But of course by not giving injections money was indeed saved.

No B12 deficient patient wants to have more injections than they need, they simply want a frequency that keeps them well and completely able to function. It has always been a very small price to pay in the grand scheme of things. It would be an even smaller price to pay if;
a – patients were taught to self inject
b – we could buy injectable B12 OTC

This paper from 1983 focuses on pernicious anaemia rather than the many other causes of B12 deficiency, much like today, patients who do not have a definitive diagnosis of PA are considered to be in need of less treatment (or none at all) despite the severity of symptoms being exactly the same.

1983 BMJ Practice Observed Volume 287 –
Audit of the use of Vitamin B12 in general practice.

.……It has been shown that the observed use of vitamin B12 in general practice in England and Wales greatly exceeds its expected use and that it is widely prescribed by general practitioners for non-specific indications. Further evidence suggests the need to rationalise the use of vitamin be 12 in general practice.

…… The aims of the study were (1) To examine the present use of vitamin B12 in our practice and (2) To achieve a more appropriate and efficient use of it.

……..The medical records (FP5,6) of all the patients were then reviewed to identify reasons for the use of B12 and the extent to which diagnostic criteria were established and appropriate management and follow up undertaken. ….. The results of the initial data collection were then presented to all the partners at a practice meeting. All the doctors agreed to change to the criteria identified by the authors, the practice nurses were advised accordingly, and a follow-up collection of data was undertaken.
In all cases where changes in treatment or management or both were introduced the patients received both written and verbal explanations from the practice doctors or nurses or both.

Note that the patients are not consulted they are just dictated to. I wouldn’t mind betting that some of the GP’s and nurses were concerned at this change in treatment being imposed upon them. Note that the nurses ‘were advised accordingly’ rather than being asked their professional opinion as the frontline workers.

Setting standards

In setting standards we decided that our criteria should be explicit – that is, identified before collecting evidence of performance – and that our criteria should be appropriate for British general practice, safe, realistic, and achievable.  In arriving at our criteria we consulted three standard textbooks of medicine (Alstead, Davidson and Price), a consultant haematologist, the librarian at the Royal College of General Practitioners, and the Monthly Index of Medical Specialities.

The following standards were set;

(1) Criteria for the use of vitamin B12
(a) approved value in the treatment of pernicious anaemia only (other conditions are very rare in British general practice).
(b) May be necessary prophylacticly after surgery – four example gastrectomy, resection of the terminal ileum.

For all the good their method of ‘arriving at our criteria’ did for patients, they might just as well have consulted the butcher the baker and the candlestick maker. Note they didn’t consult a psychiatrist despite the link between low B12 and poor mental health being discovered over a hundred years ago.

This reduced regime did not make anything ‘safe’ for patients. In fact it served to  make the situation dire.

This intervention took away the GP’s chance to use deductive reasoning, to draw on experience of the past, to treat the person and not the ‘numbers’. It completely and firmly made treatment of B12 deficiency ‘one size fits all’ and woe betide anyone who does not toe the line. This is why the situation for patients still remains in a sorry state today.

As I said before PA is still thought to be the primary culprit here, other causes of B12 deficiency such as malabsorption caused by metformin, H2 blockers, PPI’s, parasites, etc. are completely ignored due to lack of knowledge.

The prevalence of PA against other causes of B12 deficiency these days is diminished. The genetic problems associated with B12 deficiency are not widely understood amongst health professionals despite their effect on a huge percentage of the population.

(2) Diagnostic criteria for pernicious anaemiathere must be
laboratory evidence of
(a) macrocytic anaemia;
(b) a low serum concentration of vitamin B12 with a normal folate concentration;
(c) a reticulocyte response to B12 treatment.

• All the criteria is based on blood values. We know that macrocytosis is a very, very late stage of B12 deficiency and that severely deficient patients may not present with this sign, the administration of folic acid also masks macrocytosis by normalising the size of the blood cells. Some GP’s still adhere to this criteria and NICE Guidelines bizarrely reinforce it for patients diagnosed with CFS and ME too. Quite ridiculous.

• Why on earth would any one with half a brain think that a high or a low folate concentration negates the need for B12 when the serum B12 level is low?

• We also know that the serum B12 test is inaccurate and cannot tell us what is happening at a cellular level. Using a serum B12 test in a patient on B12 injections to confirm ‘B12 levels are replete’ is incorrect, but it happens. Too many patients have their injections stopped because the doctor thinks they are cured once serum levels are above the low reference range. Unless the cause of B12 deficiency is temporary i.e. parasitic infestation which has been eradicated then treatment will be for life.

(3) Treatment and management Criteria – The optimum dosage is 1000 µg at intervals of eight weeks.

We need frequent B12 in order to keep brain and body healthy. For many patients today this frequency however, would be a miracle.

Results – (Be warned this is a tiny study!)
• 31 patients were in the study, 21 were women, 19 of them were over 65 years old.
• 22 patients (73%) were being treated for PA
• 5 were being treated post surgery.
• 1 for multiple sclerosis
• 2 for diabetes mellitus
• 1 for ‘no discernible reason’

In the interval between the two data collection dates 11 patients had died or left the practice, this included both patients with diabetes.

I wonder what these patients had recorded as cause of death? Of course we can’t know if this imposed reduced frequency had any impact however the word ‘pernicious’ springs to mind.

Vitamin B12 injections had been stopped for the patient with no discernible indications but the person with MS continued to have injections as she had become dependant on them.

Oh dear. Many severely deficient patients today would have ‘no discernible indications’ based on the sketchy criteria used in this survey and absolutely no comprehension of the ‘need’ of the MS patient, rather that she is ‘dependant on them’!

‘In all, in 17 patients injection frequency changed between the two surveys. 


We make no claim to have identified definitive an immutable criteria for the use of vitamin B12 in general practice. We believe, however, that the standards that we set for ourselves are not only realistic and achievable but also reasonably reflect the current state of knowledge. We could discover no evidence to suggest that vitamin B12 having effective therapeutic role be on the correction of a specific or potential vitamin B12 deficiency state.

They certainly expected this criteria to be immutable though! The ‘current sate of knowledge‘ has moved on in 30 odd years and yet B12 ‘maintenance dose’ has since worsened.

…. A substantial and necessary reduction in the high number of injections of B12 administered to the patient was also brought about. The average number of injections per patient per year was almost halved 12.7-6.9 by greatly increasing the proportion of patients receiving injections at two monthly intervals 13%-84% the resulting savings in the cost of drugs and syringes, for example, are self evident and enabled nursing staff to devote the time saved to more important activities such as routine monitoring of patients blood pressures.

So this audit achieved its goal, life saving B12 injections were cut, at this point, from monthly to one injection every two months. They saved some cash on syringes and the nurses got to do ‘more important activities‘  – they did routine monitoring of blood pressure. Now I am no medic and although I know that monitoring blood pressure has its merit, but if we were to ask the simple question of ANYONE –‘What’s more important, is it (a) a routine blood pressure check or (b) a life saving injection? I think we can safely say the overwhelming answer would be (b).

In changing the frequency of the patient’s treatment regimens and we were conscious that we were disturbing what for many had become a regular part of their lives, often over many years. We had previously agreed that if any patient show distress at the prospect their current regimen should be continued. In the event no problems were encountered and no increase in consultation rates and ensued. This may have been due to the detailed explanations given to the patients, who were also reassured that no recorded instances of relapse had occurred in a two monthly schedule of injections.

‘No problems were encountered’ – ‘detailed explanations given to the patient’  I’d love to know what these detailed explanations involved. The problem is that patients don’t want to argue with doctors, they don’t want to challenge what they have been advised, they think ‘doctor knows best’.  The majority of patients may well have suffered in silence. REMEMBER there were only 20 patients alive at this point, probably barely alive and unable to cause problems!


… By collecting objective evidence of our use of vitamin B12 the differences between the medical care that we assumed we were providing and the care that we were actually providing we are made of this. This stimulated changes in Doctor behaviour and lead to improvements in our standards of clinical practice and patient care. Furthermore, all doctors agreed to follow the criteria identified in our future use of vitamin B12.

So the conclusion meant that the 2 monthly regime was solidified, the doctors who were previously prescribing to patient need, probably had their wrists slapped for not putting cost first. It also ‘fixed’ the terribly narrow diagnostic criteria.

Tragically this next audit published in 1985 only two years later, makes things a whole lot worse ; –

Putting money before health is a complete disgrace especially when, with a little lateral thinking, there was a perfect alternative solution to ‘the considerable source of work for the district nurse’ detailed below. Instead of teaching the patient/a family member to self treat they decided to just cut  the injection frequency and to hell with the consequences!

Vitamin B12 injections: considerable source of work for the district nurse 

It’s title should really be ‘arbitrary rationing of B12 injections’.


Between June and September 1984, district nurses who worked in Coventry were asked to submit returns giving details of the patients for whom they administered vitamin B12 injections. Of 492 patients identified, 382 (78%) were receiving injections more frequently than the recommended three monthly dose of hydroxocobalamin. And extra 3751 injections were being administered a year. Four hundred and thirty (88%) of these patients have conditions for which the drug is a proven benefit, so the increased frequency of injections accounts for most of the observed excess. A total of 200o hours a year district nurse time is spent with these patients. The nursing services under increasing strain. Changes in vitamin B12 prescribing alone could make between 600 and 1470 hours available for other patient needs.

In the main this audit is trying to address the move from administration of monthly cyanocobalamin to three monthly hydroxocobalamin. Again there appears to be no clinical evidence for such bold statements.

This audit also uses the same flawed diagnostic criteria used in the Leicester study.


…..Only a three monthly dose is needed.” It is therefore more convenient for the patient and cheaper by dosage regimen and in the time required of nursing staff to administer injections.

So now, just two years later we have moved to 3 monthly injections – WHY?!

In order to arrive at these treatment regimes you’d think they would have asked and recorded how hundreds of patients felt on this frankly, woefully inadequate level of B12 supplementation, but they didn’t.

Where exactly is the patient centred, solid, qualitative, peer-reviewed research from back when this ridiculously illogical idea originated? NOWHERE.

There is no proof that ‘optimal treatment’ for all UK patient’s is four B12 injections per year and there never will be. FACT.

This study below, published in 1967 carried out trials to determine how long cyanocobalamin and hydroxocobalamin B12 injections lasted before excretion in urine but you can see from their summary that it would be unreliable to assume that one size fits all.

Patient Variation in Pernicious Anaemia, as Shown in a Clinical Trial of Cyanocobalamin, Hydroxocobalamin and Cyanocobalamin–Zinc Tannate

 Variation between patients makes it impossible to anticipate the duration of effect of a single injection of one of these drugs in any patient.

B12 is a complex vitamin, it does amazing work in the body, but it can’t miraculously eek itself out over 3 months, it is excreted quickly as is the nature of all water soluble vitamins. This fact doesn’t change just because someone, somewhere wrote down that we only need four injections a year in an attempt to try to balance the books.

Psychological dependence is often mentioned as a reason for more frequent dosage. Fraser et al, however, reported no resistance by patients to reducing the frequency of their injections. Careful explanation was sufficient reassurance that there would be no untoward effects.

How patronising to dictate such a thing to patients. ‘Placebo’ or ‘somataform‘ are words often used when trying to persuade a patient that they have no need for B12 injections despite the fact they can’t walk or think or breathe without them.

Pressure on district nursing services in Coventry means that there is rationing by decreasing the time available to each patient and by longer patient waiting times. Optimising treatment should be a more acceptable means of rationing.

The word rationing tells us what is really going on here

Even if treatment for such conditions was given “ideally” the saving would be roughly only 18 hours per nurse a year. This is a small absolute amount for an initially understaffed group who cope with an expanding elderly population as well as the consequences of changes in hospital practice. Allied to other improvements in the use of the district nurse’s time it might contribute to appreciable savings.

Money Money Money.

This last paragraph was clearly not kept in mind when decisions on cost saving were made;

District nurses are respected and trusted members of the community health services. Their role in supporting elderly people in their own homes and in preventing handicap is largely undervalued -and unmeasured. Overall, costs for the population of patients in this study are about £18,000 a year. For patients with proven indications for vitamin B12 supplements this represents roughly £42 a year each. In times of high technology medicine and economic appraisal of health care this is a small cost indeed “to save a life.

Remember – they state ‘proven indications’- based on flawed criteria used but the authors here know that B12 injections save lives. The fact is that the frequency of one injection every three months means that the quality of life for many patients is considerably compromised by gross under treatment.

These audits and no doubt countless associated studies, have encouraged GP’s to reduce the number of B12 injections and in some cases stop them altogether. This is harmful, but they think IT SAVES MONEY. Only it doesn’t really does it?

These patients who do not fit the criteria but who remain undiagnosed B12 deficient patients become very expensive for the NHS to look after. Without B12 supplementation, their deterioration may have meant and still means that they would be subjected to countless pricey investigations, scans and procedures, visits to psychiatrists, neurologists, gastroenterologists, and other ologists.

These audits NEVER advise that they will monitor and record the effect on the patient by asking how they feel – only that they may look at blood levels annually, odd isn’t it?

There may well be some patients who feel they do fine on 4 injections per year (or don’t want to say otherwise) – however those patients don’t write to me or join support groups. The point is we are all different. ONE SIZE FITS ALL cannot ever be possible in this situation?

A further nail in the coffin came in another later audit carried out in Leicestershire in 1995.

The message is clear – ‘you are giving too many patients B12 too often. Stop the patients who you don’t think need B12 from having it and those that may need it make them wait a few more weeks. If they whine give them some but tell them they don’t need it, it’s just that they have become dependent upon it’. In a nutshell this is how all the audits worked. They have successfully saved money and harmed patients with no basis of clinical evidence.

General Practice
Use of vitamin B-12 in Leicestershire practices: a single topic audit led by a medical audit advisory group

I have highlighted key points below but to read full text please use the link above.

Abstract Objectives: To encourage active participation of Leicestershire general practitioners and their staff in audit; to examine the use of vitamin B-12 injections and to achieve a more appropriate use.

Setting: All 147 Leicestershire practices.

Main outcome measures: Participation in the complete audit cycle, comparison of actual use of vitamin B-12 injections with agreed criteria of use, and assessment of improvement in use.

Results:  In total 1714 patients received B-12 injections. Appropriate use increased from 62% in phase 1 to 72% in phase 2 of the audit; there was a 32% reduction in the number of patients inappropriately receiving B-12 (521 to 352), and the proportion of patients receiving B-12 at the correct frequency rose from 58% to 72%.

Conclusion: Our study suggests that single topic audits organised by a medical audit advisory group can encourage large numbers of general practitioners to participate and can bring about changes in behaviour resulting in improvements in standards of care…..

The specific aims were, firstly, to examine the use of vitamin B12 injections in all the Leicestershire practices; and, secondly, to achieve more appropriate and efficient use.

Criteria for treatment and management

• Optimum maintenance dose is 1000 µg at intervals of 12 weeks

• Follow-up annual blood count is required to avoid relapse

You see the obsession with blood values and yet no instruction to listen to patients, some of whom relapse only a matter of days post injection.


…..There was a 32% reduction in the number of patients receiving B12 for non-valid reasons (from 521 to 352). 

….. This study is the most extensive assessment of the use of vitamin B12 in general practice yet reported. It has confirmed the findings are previously that B12 is still used inappropriately.

Nevertheless involvement in the audit stimulate a considerable change in behaviour among participating doctors, leading to subsequent improvement in their use of vitamin B12. For example the use of vitamin B12 for correct reasons improved by 10% (62% in phase 1 to 72% In phase 2) resulting in a 32% reduction in the number of patients inappropriately receiving it (521 to 352). Indeed some practices achieve dramatic change: One practice reduced the number of patients on B12 injections from 53 to just two…..

The proportion of patients receiving B12 injections at the correct frequency also increased by 14% (58% to 72%), which resulted in fewer patients receiving unnecessary injections.


……….It also provides further evidence that participation in audit can bring about change in clinical behaviour leading to improvements in standards of care

I am sure that your average B12 deficient patient wholly disagrees with this conclusion.
You will see that the British audits mentioned above reach and infect other countries……

Use of vitamin B12 injections among elderly patients by primary care practitioners in Ontario

 “although therapy for vitamin B12 deficiency prevents serious morbidity clinical audits in Britain have shown that approximately half of the patients receiving regular vitamin B12 injections do not meet explicit criteria supporting its use and up to one fifth of patients receive unnecessarily frequent injections. “
The situation is totally unacceptable and yet the solution is so easy;
• We need to be listened to and treated based upon our individual need without any  fear of the GP being penalised.
• Those who want to, should be taught to self inject saving time in the practice.

• Our GP’s need to get behind the B12 OTC petition so we can manage our own condition properly removing the cost burden to practices.

If you think you may be B12 deficient please see this page;

Best wishes

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  1. Tanya

    At my last injection, my practice nurse told me they were being audited for frequency of administering B12, and that I would no longer be able to get mine at 10 weekly intervals, as I was prescribed by an enlightened GP in 2008, after seeing that I could barely think, talk or function in the last few weeks of the injection cycle. I know I can’t go back to 12-weekly injections, but it seems like the practice’s hands are tied. She said it was because of evidence of B12 storing in/damaging the liver and said my only hope was to plead my case to the GP just before my next shot is due.

    • traceywitty

      Hi Tanya, perhaps you should demand to see this ‘research’. Have you seen this page point 1 here details under treatment.
      Do you mind telling me where you live? It would be interesting to gather the info on this audit too, it’s a complete disgrace that they don’t teach patients to self inject but just keep on trying to frighten patients with tales of ‘damage’!. Please email me at [email protected] if you want to share the info, no pressure though. Best wishes Tracey

      • Pat Steer

        Tracey these are the answers I have bern looking for.

        I had crohn’s disease in my late teens and 20’s and told I would need monthly B12 injections for life. I was not happy at this but my doctor said without them I could become very ill.

        I had them regularly for about 6 months then suddenly he said that the one I had would be my last injection. I questioned what he had said previously.

        He actually said he did not want to stop them but was told they could not provide them anymore. He also said if I had any unusual symptoms to come and see him.

        In those days the word of doctors were absolute. I was also on steroids and think an initial symptoms would have been masked by these powerful drugs so did not return.

        Change of doctor came when I got married in 1985. Still on steroids all seemed well a routine gastro appointment resulted in a planned bowel resection in 1995. Again I was told I would need B12 for life I think this stopped about 2 ot 3 months later.

        18 months after stopping my steroids I developed hyperthyroidism (in line with steroid withdrawal time lines) at the same time my B12 was also low and this was ignored.

        At 39 my periods stopped I was told I had early onset menopause. No family history for this or symptoms.

        I continued on my thyroid treatment but still had many otber symptims. I did not know any better and just put it down to weight issues but even afte loosing weight the tiredness was there.

        There is a long history since then but am now on 8 weekly injections after discovering my long term low b12 through my doctor. It us not enough. My gp asked if through research I could find a b12 specialist he would refer me to for more frequent injections and I looked and of course there are none.

        I will be SI soon. But I followed what I thought I should do.

        Reading this I now understand why and what happened.

        I did look at legal action but no one can be identified to sue could a class action be brought against the people who did these audits.

        I also as an ex data analyst feel that identification of people suffering because of this and their experiences could easily create very interesting data information to counter all this work. I know on one website there are over 40k members even 10 would be more than most trials.

        This needs urgent change.

  2. Rachel

    I was diagnosed around 5 years ago after persistently gong to my gp with severe symptoms for nearly 2 years. My memory was terrible and I was worried there was something seriously wrong as I had only been like that for about 2 years. Exhaustion from doing absolutely nothing at all, depression, fatigue, anxiety. My symptoms were so bad I wouldn’t go outside unless I needed too. Finally I was diagnosed with a severe case of b12 deficiency. I was given treatment every other day for 2 weeks, then every month then on to every 3 months. I felt great back to my normal self, apart from my memory. That’s never been the same since. But now 5 years on, 4 times a year is nowhere near enough, after about 6 weeks I go down hill and have to wait desperately for my next injection. Things need to change this isn’t right to be left to feel like this when things could actually change our day to day lives.

  3. Helen Glanville

    I am slightly deficient in B12, not to the extent of needing injections, but when I was tested my GP said uncategorically that he would not prescribe it. Now I know why. Thanks for your hard work bringing this to the attention of the public and good luck.

  4. pat eden

    I moved home 6 months ago and my new GP has refused to continue with my monthly B12 injections which I have been receiving with no problems for nearly 20 years. I’m being treated as a drug addict. I have symptoms of deficiency but they are ignored so just don’t know what to do!

    • traceywitty

      Dear Pat

      This is ridiculously common, have you been in touch with you old practice to ask for support in this? Have you put your complaint in writing to the GP and the practice manager? Your MP could also be of help here. The awful thing is the GP is influenced by these audits and they probably have no idea of the damage they do to patients with restricted treatment. Please see this page too Best wishes Tracey

  5. Philippa Nightingale

    my daughter aged 17 has just died. I have been diagnosed in the past with pa . I began to recognise smiler symptoms in my daughter. Her GP was very negative and I had to really pus to get her tested. Results showed 180 ng/L . he gave her 50 ug tablets. I knew this would not be of any use but hesitated to inject her myself and also was finding it difficult to obtain any but cyanocobalamin which I think is not a good choice compared to hydroxocobalamin. Her anxiety and panic attacks and exhaustion had not improved so as she was becoming distressed at not being able to think properly and had AS level exams coming up we asked for antidepressants. They refused to prescribe amitryptylin which I felt would have calmed her and enabled her to sleep better but did prescribe fluoxetine.
    Her sleep difficulties became insomnia. She could not think coherently enough to study.
    I have severe spinal cord damage and take morphine. she had watched for 12 years this cause me to dose off easily. she obtained a supply (not my own) and began to self medicate.
    Four weeks prior to her death she began dropping off mid evening as she was revising. I was relieved to see her sleeping. three weeks before her death she developed a severe hives outbreak covering her legs from thigh down. I had previously had a similar outbreak with no ill effect so as it was very hot and exams were stressful I just got her ointment to ease the itching.
    her GP saw her 4 days before her death and made no comment on it, just gave her more prozac. she died 4 days later suffering from respiratory difficulties and a cardiac arrest. She had swelling and bleeds on the brain and a measles like rash on her forehead which had appeared a couple of days earlier.
    because she had morphine in her blood they have put this as cause of death despite a low free to total morphine ratio.
    I know if her pa had been properly treated she would not have taken this extreme action of taking morphine. ashe was a highly motivated girl with plans to work in psychiatry with traumatised youngsters. she was a young leader at guides, mentored yr 7 & 8 students at school, and was influenced I think by prozac.
    it makes me and the Nerdsquad (her friends at school) extremely distressed that her inquest will just present her as a drug abuser, nothing could be further from her character.

    • Tracey Witty

      Dear Philippa, I am devastated to read your post, my heart goes out to you and your family. Do you mind my asking have you got a full copy of your daughters medical notes? Best wishes

  6. Kathryn benham

    Hello it is refreshing but also frightening that there are so many people like me battling to have my injection at 8weeks instead of the 10 weeks I am currently on. I have recently been to my gp and explained I have lost two jobs and was afraid of losing this one, sure enough a week later I was told I had made too many mistakes all in the two weeks prior to my injection. He was not interested but he did offer to increase my antidepressants paroxatine which I have been trying to come off for 3years and has to be done very slowly as it is highly addictive.

  7. Sarah

    BNF advice on treatment of B12 deficiency changed at end of 2018.

    Doctors are now told to give injections every 2 or 3 months after loading injections.

    I don’t know when this new advice will appear in the BNF books that doctors in UK have but it can be seen on BNF website.

  8. Anne Liljeblad

    And here we are, almost seven years later, and nothing has happened to ensure the safety of patients with B12 deficiencies of any origin. We see it all the time – injection frequencies spaced out, or withheld altogether, diagnoses “mysteriously” disappearing, the handing out of anti-depressants like candy instead of optimal B12 treatment and the total lack of regard for patient’s quality of life.

  9. Rachel

    Hi I live in Lincoln and I’ had low b12 9 months ago after having colitis in the bowel. I had to chase my diagnosis – because they forgot about me 9 months on and have now advised I get three monthly vitamin b12 as my b12 is low. Today I tried to book my first dosage with GP as advised by the hospital and have symptoms such as tingling in hands and I have to wait 2 weeks to get my injection

    • Tracey Witty

      Hi Rachel, sadly this is not uncommon behaviour even before 2020. I hope you are starting to feel the benefit now?
      Best wishes

  10. Catherine

    I have been having my b12 injection on a monthly basis for many years
    This is due to my ulcerative colitis as My body doesn’t absorb vitamins
    Then 3 months ago I received a letter from my docters practice saying that they are changing this to every 3 months due to study’s apparently we don’t need the b12 every month
    I disagree it’s only been 6 weeks and already I have no energy no motivation and low mood
    I have rung the surgery on 2 occasions and spoke to the gp about my concerns on my mental health and the benefits off receiving the b12 however I was told that I have to wait for my 3 monthly b12
    I explained that I work 40hrs week and pay my national insurance and that it should be individual to the person not waiting till I’m to unwell to go to work that this would then cost them more however I not listened to
    This is not health care it’s saving money however I was told that this isn’t the case and that study’s show that the b12 benefits 3 monthly injections
    I have asked to have bloods done however I was told I could off bloods don’t the same day as my b12 injection so they can check if I need it more frequently
    This is disgraceful
    I told the gp I go and have the injections privately as I can’t go on like this he said you can do that however when we take your blood prior to your b12 iit won’t be a true reading
    I explained so I have to go on like this for another 6 weeks to have true reading off the bloods
    I’m sorry looks like I’m going to have to pay privately as my mental health is more important

    • Tracey Witty

      Catherine I am so sorry to hear you are experiencing this appalling ignorant behaviour from your GP. I wonder if you can ask to see this research that states all with B12 deficiency are exactly the same and have the same level of need.

      There is absolutely no need for them to test your blood at all and only a requirement for them to LISTEN to you.They need to understand that you can give vital information about your own state of being and you are not a piece of paper with a number on it. Have you complained to the Practice Manager? I would be happy to help you tackle this, please see:
      Very best wishes

    • Karen Hughes

      It’s now September 2023 and things are even worse. People without a PA diagnosis are having their injections stopped regardless of their symptoms and told to take otc tablets. PA diagnoses are being deleted from patient records (it’s happened to me) and they’re told they no longer need injections. This has to stop, but as long as doctors think that B12 is ‘just a vitamin and therefore unimportant’ things will only get worse.


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