A b12 serum level can’t tell you how a patient is feeling, only the patient can, but why is no one listening?

Is your doctor allowing you to sink or swim?

How are you feeling? Are your symptoms improving? Do you need more frequent B12 injections……? These questions are very rarely asked of B12 deficient patients regarding their treatment. Too many patients remain ‘seen’ but not heard. Never heard.

Why has the medical establishment become so averse to listening to B12 deficient patients?  To treating symptoms and to acknowledging this fundamental nutritional requirement?  Why are we not offered the same listening ear as those with other conditions might be?

The patient is ALWAYS the expert on how they are feeling, not some serum B12 level or any maintenance guidelines which bear no relationship to the patient experience.


Loss of a great relationship  

Any visit to the doctors can be an ordeal. You may be feeling, vulnerable, tearful, in pain, stressed, anxious and not wanting to waste the doctor’s time. But, the incredibly healing benefit of just ten minutes of really being heard, experiencing kindness and compassion and having a plan of action, is profound. We leave knowing our doctor is trying to help us. That ten minutes being reassured and cared for creates a phenomenal level of trust.

B12 deficient patients, in many cases, experience a completely different relationship with their doctor when requesting an increased frequency of B12 injections, finding that a couple of weeks after their injection their debilitating symptoms are back with a vengeance.

The very same Doctor who helped them through rough times, cared for them through pregnancy or trauma can become distant, defensive, unfeeling and even angry.  It’s as if an invisible wall is built,  eye contact is limited, and communication is almost strangulated. The usual empathy may be replaced by flippant, incorrect comments about B12 being a placebo, that B12 deficiency is ‘over diagnosed’ that people want too much, get addicted to it and that there is no evidence to suggest that it actually makes a difference! 

There’s an inability on the part of some GP’s to demonstrate compassion or understanding for a patient who is struggling to function on three monthly injections. The current situation means that some patients are able to function for only 8 weeks out of 52.  Many GP’s are refusing to treat symptoms, whilst concern with B12 serum blood levels takes precedence over common sense. Ignoring how the patient feels can lead to feelings of confusion, anger, desperation, and fear. What are they supposed to do?

Patient’s who are in pain, exhausted and confused need more B12, not less – but this fact is not understood by those who should be caring for us.

This ‘new’ attitude from the GP may cause fractures in, or even a complete death of their previous good relationship. For those patients who feel they’ve upset their doctor by asking for more B12 or who fail to articulate what they need it may mean that they will try to struggle on alone. This is a shocking and intolerable situation for a patient who previously had an excellent relationship with someone they completely trusted to care for them.

What usually happens in the UK ….

In the main GPs prescribe loading doses (6 injections over two weeks) and then automatically place patients onto three monthly injection regime regardless of the severity of their symptoms. This is very often done without discussion with the patient – in fact without any kind of consultation whatsoever. It might be a nurse who delivers this information and who sticks rigidly to the exact date three months later for the next injection. It is not uncommon for patients who try to have their injection a couple of days early only to be turned away distraught.

This situation can leave the patient bewildered about why their inexpensive injections are rationed, knowing their lack can cause widespread, permanent damage. This condition is so simple and easy to treat but B12 is withheld due to lack of education.

Patients restricted to 3 monthly injections are commonly offered strong painkillers, Gabapentin, amitriptyline, and other antidepressants, all manner of symptom modifying drugs in place of the vitamin needed to repair their nerves.  There’s something seriously wrong when a GP insists on exploring dementia in a symptomatic patient in their 40’s, rather than treating a B12 level which is just within range.

Retesting serum levels

Once a patient is being treated with B12 injections, it does make sense to check the serum B12 level in the beginning to confirm that the patient is responding to treatment. If there is a good response then no further testing is required. Continual retesting of serum levels prior to an injection (and in some cases just a few days after) is a total waste of time and money and it’s clear that some GP’s are mistakenly using a ‘within range’ result as a reason to stop B12 injections.

The sole reliance on B12 serum levels to decide whether a patient is well or not is entirely illogical given that many patients with a B12 level up in the 1000’s may still be experiencing incredibly painful and debilitating symptoms. They may be suffering from a failing memory, an inability to walk, to stay awake and terrible anxiety.

A high serum B12 level post injection is not showing any toxicity, it is also no indication of the level of nerve repair but repeatedly patients are told:

‘your levels are too high’,
‘we need to stop your injections until they come back down’
‘you no longer need B12……..’

There is a genetic problem which is thankfully highlighted by the NHS – ‘functional B12 deficiency,’  it would be helpful if our GP’s were all made aware of this;


‘Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood. This can occur due to a problem known as functional vitamin B12 deficiency – where there is a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord’.

B12 is a water-soluble vitamin, the vast majority of the injection is excreted via the bowel and bladder within 24 hours. B12 has to be replaced frequently in order to aid recovery of the myelin sheath. Serum levels can remain high for up to four months, this does not mean there is an accessible reservoir of B12 sloshing around the body.

If your GP or nurse continually suggest retesting your B12 levels, ask why? And feel free to refuse unless there is any clinical need. You will be saving your blood and your time and that of your practice too.

• A very high serum B12 level without any supplementation obviously requires investigation and I often wonder if this is where our GP’s are getting mixed up?

Superior treatment for other conditions, a stark contrast 

If you are a diabetic patient, the overwhelming difference in the level of care is plain to see. You will be checked, monitored, consulted. You’ll have regular retinopathy and foot checks. You may be assigned a specialist diabetic nurse and you will be asked how you feel.

You will not have restricted medication, you will be taught and trusted to self inject, and you may even be sent on courses to learn about your condition.

In stark contrast, the majority of B12 deficient patients are discriminated against whilst requiring exactly the same care. All clinicians need to grasp the fact that B12 deficiency is a real and serious condition.

One size treatment cannot possibly fit all

As many of us know and feel keenly, four injections per year cannot correct the body’s starvation of B12, just as only four buckets of water a year wouldn’t help a tree in drought and only four breaths of air wouldn’t help a deep sea diver. One size cannot possibly fit all for many medical treatments.

Reports of widespread pain, poor memory, poor mental health, balance problems, deafening tinnitus, fatigue, and incontinence are totally ignored as if the patient is totally mistaken about the state of their own health. If they happen to have existing diagnoses of fibromyalgia, depression, CFS, diabetes (etc) or they’re menopausal or even a new mum – their symptoms may be attributed to these conditions instead of being recognised as under treatment of B12 deficiency.

B12 injections are safe, life saving, non-toxic and inexpensive. There is no clinical evidence for this restricted regime, it is entirely based upon cost saving audits.

Bizarre letters stop B12 treatment

You can see the situation which affects so many patients from this letter below. These letters which stop vital B12 treatment, are randomly sent out and are expected to be met with compliance despite the fact that without any solid evidence or consultation, it has been decided the patient can miraculously absorb and utilise B12.

tracey letter

The statement “Evidence has come to light that in many cases B12 injections are given too easily, or are inadvertently continued after the loading dose injections.” is ludicrous.

I hope that recipients of these letters ask to see the source of this ‘evidence’ and I wonder what it is. The idea that B12 injections are ‘given too easily’ is a bizarre comment given that so many patients probably feel that completing the Krypton Factor, running ten miles through quicksand whilst wearing high heels two sizes too small, might be an easier challenge than ‘qualifying’ for an essential vitamin injection.

There may be some odd formula for sending out these letters – there is no clue as to why this practice have decided the patients can now absorb B12, what test they used. Perhaps a mistaken reliance upon post injection serum B12 levels to determine that patients have enough B12 and are now ‘cured’ – perhaps even picking names out of a hat?

They state “we need to prove that people cannot absorb the carrier across the stomach membrane.”  The sentence itself doesn’t make sense. What is the ‘carrier’? Do they really believe that by simply telling the patient “You are one of a cohort of patients who have been tested and should be able to absorb B12” the job is done?  They are placing the onus on the patient to prove they can’t absorb B12 without any discussion whatsoever.

There seems to be a movement towards only treating patients who are confirmed to have pernicious anaemia, (this may be what this letter is about). This is totally ridiculous given the many causes for B12 deficiency. Each is serious and each requires treatment by injection unless the deficiency is of proven dietary lack. The reality is that the test for pernicious anaemia (Intrinsic Factor antibody) has low sensitivity resulting in many false negatives. This information escapes too many GP’s.

The sad fact is that some who receive these letters will believe what is written – or may not have the strength to fight for their health.

Deterioration caused by B12 deficiency is slow and insidious, it takes a while to repair the fatty coating of the nerves (myelin sheath). Six injections over two weeks cannot possibly reverse all the damage in every patient even though we all wish they could.

Me and millions of others would be ecstatic to find that suddenly we really could absorb B12 simply because we received a letter saying so – but this letter and all the others like it are complete poppycock, not to mention harmful. As usual in B12 deficiency, the PATIENT IS NEVER CONSULTED, everything is decided without their input.

Oral supplementation for patients who cannot absorb B12 from food would be a futile exercise. We urgently need our clinicians to understand that this can lead to permanent neurological damage, raising serum levels but allowing deterioration to continue.

This letter states that: “If you are taking folic acid then it’s important to take vitamin B supplement to prevent damage” the author is apparently ignorant of the harm that will follow without B12 injections.

The one sensible statement included in the letter is that vitamin B12 “is water soluble and therefore not dangerous to take in excess,” very refreshing.

It is vital that all primary care doctors, nurses ,midwives and specialists in all areas of medicine are educated about the seriousness of B12 deficiency and the fundamentals of nutrition.

If our doctors are unable to feel that they can take clinical responsibility for frequent B12 injections (even though this is what is stated in both BNF and NICE Guidelines) then it becomes even more urgent that UK patients are able to buy injectable B12 over the counter in order to look after their own health.

Isolation and hopelessness

There are many things that patients who are B12 deficient can’t understand about the way they are treated once they become diagnosed with vitamin B12 deficiency.

Of course some doctors do treat their patients correctly and fully support individualised treatment. For the rest, B12 is restricted and the battle for treatment begins in those who have the strength and/or the support of loved ones.

Some patients believe their GP is correct when told that too much B12 would be harmful.  Others feel forced to accept the situation because their partner or family member insists the GP must know best, finding themselves totally isolated and without hope.

Nobody wants to have to fight for health especially when they are on their knees, mentally and physically.

If you are a patient who needs more B12 and face the challenge of requesting this, taking somebody with you to the doctors for support can be invaluable. Just a squeeze of a hand and reassurance that you are not alone can make the world of difference when trying to communicate how you feel in pleading your case. Writing down what you need to say will help you to remember all your points. The NHS constitution may be a useful tool to help in accessing better treatment for UK readers.

The very least a patient can expect is to be listened to and taken seriously. Ensuring that this happens would make the job of the GP easier and their overall workload lighter, saving the NHS millions. It would be interesting to know just how many appointments are taken up by undiagnosed or under treated B12 deficient patients. Now there’s a research project worth carrying out.

Are you in a situation where you are not being heard and feel isolated? Please don’t give up, join this fantastic support group where you will find help from so many members in the same boat.

REMEMBER this is your life, your health and YOU MATTER. You are the expert on how YOU feel, no one else.

Are you a doctor reading this, do you know how we feel?

How would you cope with your job, family, home if for  only 44 weeks out of 52 you were unable to function? Can you give us your side of the story? Anonymously?

If you can, please email in confidence to tracey@b12deficiency.info.

www.b12deficiency.info Twitter – @B12info Facebook


‘The tank’s empty but I can smell petrol so you have 90 days more driving ahead of you’ …..

If this advice were given by a garage we’d know they were kidding –  but a similar instruction is given in the UK to too many B12 deficient patients regarding their treatment.

NICE and BNF Guidelines advocate a maintenance dose for patients with neurological symptoms is one injection every two months. This is very often ignored and a move straight to a three monthly maintenance dose (after a 6 injection loading dose), is the norm. This is based on NO CLINICAL EVIDENCE whatsoever yet it appears to be set in stone.

I have spent quite some time trying to find the research for the bizarre idea that four B12 injections per year as a maintenance dose is ‘optimal treatment’, since this restricted regime harms those who are in dire need of a nutrient their systems are starved of. The term ‘optimal treatment’ is used to describe our quarterly maintenance dose in a series of GP audits which I blogged about earlier this year.
It was decided that district nurses time could be saved by lessening the frequency of B12 injections given, so this was eventually adopted nationally without any care for the patient. Our UK maintenance dose guidelines are based on cash saving exercises.

At the end of this blog post are the replies I have from various agencies; NHS England, Public Health England, Health Select Committee, British National Formulary, NICE, to the question;

“Please can you show me the clinical evidence which states that the three monthly maintenance dosage for B12 deficiency is optimal treatment.”

You will see that everybody addressed passes the buck and thinks that someone else has this elusive information which so many doctors adhere to. The emails take a circular route which, of course, yield no result whatsoever since there is no clinical evidence.

In a letter to my MP, Sir Bruce Keogh of NHS England stated “Most patients respond well to quarterly injections”, but where is his source?

It’s quite obvious that a great many patients do extremely badly on 3 monthly injections. Patients who email me with the subject line; ’Desperate’, ‘please help’ or ‘Am I going mad?’  And the 1000’s of members of online support groups are also testament to this.

A serum B12 level can show as ‘within range’ for weeks or even months after a single B12 injection or even a single oral supplement.  This can fool doctors into thinking there is plenty of B12 circulating and available to draw upon when, in reality, there isn’t any B12 available to the patient.

If you want to understand the complexities of B12 deficiency then this document on the enterohepatic circulation of B12 will help.

This is what Kevin Byrne (author of the above) states –

“The problem arises when you start to believe that the damage accruing from a long term deteriorative process can be fixed with a handful of injections, and when you take serum levels as a direct measure of the functioning of a distant, complex organic process.”

Many clinicians do not understand that;

• When a B12 injection is given, the majority is excreted via the bladder & bowel within 24 hours.
• B12 is water-soluble, non toxic & costs pennies.
• Progression of nerve damage is inevitable in patients who are starved of B12.
• B12 is vital for life, is required to produce healthy red blood cells and for DNA synthesis.

Both patients and clinicians are being led up the garden path;

The vast majority of GP’s are not fully educated on this very common, debilitating condition and they think they are advising patients correctly based on the limited information they were taught.

There are enlightened doctors who know that 3 monthly injections are a tortuous proposition for many patients they see and they treat appropriately by symptoms.

Worryingly there are also doctors who are informed, who want to treat patients appropriately but feel their hands are tied, either by their colleagues or by even more restrictive ’practice guidelines’ which appear to take precedence over National Guidelines. Or, these doctors are terrified of being reported to the GMC for ‘unusual prescribing’, quite bizarre when what we are discussing is a non toxic essential vitamin.

Evidence of this clinical evidence is nowhere to be found, It simply does not exist. It is a myth generated to save time and money and has had the opposite effect, costing the NHS and in turn society, millions if not billions of pounds. This is due to the inevitable misdiagnoses that occur when doctors fail to understand that four injections a year will never be enough to heal damaged nerves in many patients.

Trying to put a forest fire out with a teaspoon of water would be just as futile.

What other group of patients with a serious debilitating condition would be subjected to the same illogical and harmful treatment regime?

Whilst the vast majority of clinicians lack up to date knowledge of B12 deficiency & whilst treatment of this condition remains so illogically and harmfully restrictive, it becomes even more essential for patients to be able to access injectable B12 over the counter in the UK.

Patients don’t want more injections than they need, they just want to be able to function and get on with life. It is time once again, to shine a very bright light on exactly why UK patients are kept chronically ill and unable to work on this ridiculously low frequency, based on no clinical evidence whatsoever.

If you are in the UK, you can help by sharing this information with your MP and by asking them to contact my MP, Nicky Morgan (nicky.morgan.mp@parliament.uk) so that they can work together on this urgent issue.

Many thanks Tracey

Emails below;

To: Health Committee <HEALTHCOM@parliament.uk> (Dr Sarah Wollaston)
Subject: Re: Clinical evidence for B12 treatment

Dear Victoria

Thank you for your email and the link. However you misunderstood my question. I am asking for “clinical evidence” not “clinical guidelines”.
Please can you point me in the direction of the clinical evidence that states that a three monthly maintenance dose of a 1ml b12 injection is optimal treatment for B12 deficiency? I recall Sarah stating to one of her constituents that she is aware of this evidence.

Best wishes

Health Select committee (Dr Sarah Wollaston)

<HEALTHCOM@parliament.uk> wrote:

Dear Tracey

I have asked Sarah’s office but unfortunately between us all we can’t track this information, you will need to contact NHS England/Department of Health.

Sorry I couldn’t help.

Best wishes


Public Health England;


Thanks for your email to Public Health England. This falls outside our remit, however we are unsure who you should approach. It might be something NHS England can help you with.


PHE Enquiries.

NHS England:

Dear Tracey

Thank you for your email of 8 August within which you requested information about the clinical evidence regarding the two and three monthly maintenance doses for B12 deficiency.

NHS England is unable to advise regarding this matter and it is recommended you contact National Institute for health and Care Excellence. Contact details are available at: https://www.nice.org.uk/guidance
Further information regarding B!2 can be reviewed at: https://www.nice.org.uk/search?q=b12

I am sorry I am unable to assist you further and trust the information above is sufficient to progress your enquiry.

(Please note I cut a whole load of this enormous email out to save you falling asleep – It was the text from the page highlighted)

Dear Tracey

Thank you for contacting NICE.

NICE produces a range of guidance and information products, including clinical guidelines, which are recommendations on how healthcare and other professionals should care for people with specific conditions. Our clinical guideline topics are referred to us by the NHS England. I can confirm that we have not been asked to develop a guideline relating to the care of people with B12 deficiency.

I believe that the resource that you have located is clinical knowledge summary (CKS) on Anaemia – B12 and folate deficiency. CKS are developed by an external company and we work with the publisher to make them available on the NICE Evidence Services website, as a source of advice for health professionals working in primary care, while they may refer to NICE guidance (if there is any that is relevant), they also use many other sources. It is important to note that they do not constitute NICE guidance.

The evidence behind the recommendations in the CKS is presented underneath the recommendations under a subheading ‘Basis for recommendation’. I hope this is helpful.

Kind regards

(I didn’t find it helpful obviously, they point towards lots of journals who don’t have the evidence we require and to the BNF; here is their response below; )

BNF British National Formulary

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.

Kind regards,

BNF Publications

You will see from my previous blog on this subject that I also asked all the Marketing Authorisation holders  who provide injectable B12 in the UK where their evidence for the three monthly maintenance dose came from and each of them drew a blank too.



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

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 – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC478645/pdf/brjprevsmed00003-0029.pdf

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; http://www.b12deficiency.info/what-to-do-next/

If you want to learn more about B12 deficiency as a patient or a healthcare professional please consider attending our conference and hear the truth about B12 deficiency from both medical experts and patient experts.

‘Please don’t trust me – I am a doctor with a fundamental lack of knowledge of B12 deficiency, sadly my ignorance will harm you!’

Sadly the letter below is typical of those sent out to B12 deficient patients, full of incorrect information.
letter Y
This shockingly ignorant doctor, who has spent a fair old time at medical school still hasn’t grasped the basics. He states that ‘The blood tests that we have taken to work out why you had a low B12 have shown that the B12 has come back up to normal as has the folic acid. Therefore you can stop both of these.’
The doctor came to this bizarre conclusion even though the the patient was given a B12 injection 2 days before the blood was taken for the tests. This means that OBVIOUSLY it will show a much higher level of B12 than the patient had upon diagnosis. The doctor sadly doesn’t consider that this is a foolish statement and forgets that his patient will require injections for life.
It is all very simple in his world.
He goes on to say that ‘ …..there is a possibility that the low B12 was possibly caused by coeliac disease…..’
And so in his mind, the patients B12 deficiency is now miraculously cured. This would of course be akin to pumping up a punctured tyre and declaring it fixed.
B12 serum levels mean just about nothing once a patient is undergoing treatment with B12 injections. It is pointless to continually waste NHS funds to keep re checking B12 levels of a deficient patient just so that it can be used as an excuse to stop injections that the patient desperately needs.  It would however be appropriate to check once in a new patient to see if they are responding to B12 injections but this is all that’s required.
This doctor correctly identifies the fact that the body may not be able to absorb ‘certain nutrients’ if they have coeliac disease but totally misses the point that the patient has autoimmune pernicious anaemia and it won’t go away just because the doctor has found another autoimmune condition.
Autoimmune conditions like to keep each other company in certain patients.
The doctor kindly states that if the patient has any questions to contact him –
Pertinent questions for him might be;
• When are you going to reinstate the patient’s urgent injections?
• Will you treat the patient as per NICE and BNF Guidelines?
• Will you check the patient for other nutrient deficiencies and treat them properly?
And finally – During your medical training, how much time was spent on the complexities of B12 deficiency and  pernicious anaemia?
If you think you may be deficient please visit –

If you think you may be vitamin B12 deficient – please read for ‘What to do next’

This is a page direct from www.b12deficiency.info

DO NOT SUPPLEMENT at  all BEFORE TESTING – This could skew results and make diagnosis difficult.

 1. Make a note of your symptoms.

Click here to check your symptoms or click here to check your child’s symptoms.

Click here to read about causes of B12 deficiency.

Note anything that relates to you.

There is a downloadable poster which demonstrates some of the conditions which can occur with low B12 or indeed may be misdiagnosed in place of B12 deficiency. You will find this on our ‘Very Useful Links’ page.

2. Ask your doctor to test serum B12, folate, ferritin, and a full blood count.

Please note, it would be advisable to have a thyroid function test too, they share many symptoms! It is recommended that these should be fasting tests so ask for an early appointment. Sometimes doctors are reluctant to carry out these tests, however they can be done privately. For more information on testing please click here.

3. Once your results are back it is very important to obtain a copy.

You are legally entitled to these.

4. Learn to interpret your test results.

If you are symptomatic your B12 level could still show as ‘within range’ this test is known to be inaccurate. Click here.

Please note that if you suffer psychiatric symptoms of B12 deficiency they too are reversible with correct B12 treatment. Psychiatric symptoms can manifest at higher levels than the lower reference ranges of the B12 serum test. In these cases it would be entirely appropriate for your doctor to carry out a therapeutic trial of B12 injections to confirm a deficiency.

An extremely high B12 level without supplementation requires investigation.

These particular test results are important in B12 deficiency;



Red cell folate






 Click here for excellent information on optimum levels.

 It is important to remember that B12 deficiency cannot be ruled out in the absence of anaemia and / or high MCV. Click here for more information compiled by @b12unme.

 5. If you have results which confirm a deficiency, do not accept cyanocobalamin tablets unless you know that your deficiency is due to a dietary lack of B12. Remember B12 is only available from animal products!

A deficiency, even if caused through a vegan or vegetarian diet, should still be treated by injections in the first instance, in order to build levels fast.

You can also join this support group. Urge your family members to check the symptoms and causes page too, this deficiency could also be affecting your loved ones.

 6. You should be given loading doses by injection. If you have neurological symptoms then your doctor must treat you as per NICE and BNF guidelines these state that you must stay on loading doses until symptoms stop improving, see NICE Guidelines here. You may have to remind your doctor that there is no known toxicity of hydroxocobalamin and that it is used in huge quantities to treat

cyanide poisoning. Once treatment starts you may notice certain reactions during or soon after the loading doses click here for more information. During early intensive B12 treatment potassium levels may fall, causing hypokaelimia, so please increase your intake of potassium rich foods. Many people are not treated adequately enough for B12 deficiency, please see the Scottish Petition here.

7. Your doctor should adhere to these guidelines but sometimes this doesn’t happen. The BNF (British National Formulary) Guidelines state how Hydroxocobalamin should be administered and each practice has a copy of this book. Register here and print off section 9.1.2 to show your doctor if they are non compliant. Nerve damage takes a long time to heal that is why there is no limit on the administration of B12 injections in those suffering neurological symptoms. Four injections per year will not heal nerve damage, they will keep you alive but deterioration will continue!

8. Ask your doctor/nurse to teach you how to self inject.

This will save you and your practice time and money, if you have neurological symptoms you could be injecting every other day for months. Please click here for the NHS injection guide.

9. If you are B12 deficient and it is not due to a dietary lack of B12 or due to a parasite or other curable forms, you will require injections for life. In these cases, ask you doctor to write this in your notes.

10. If your results show that you are low in folate your doctor may  prescribe a higher dose folic acid tablet than the 800mcg that is available over the counter. Your serum level should be at the upper end of the range. Some patients cannot tolerate synthetic folic acid and therefore would require supplementation of the naturally occurring form of folate please click here for more information on this.

11. If you are low in ferritin you will require supplementation. Iron supplements come in tablet and liquid form and as an infusion. Your doctor should advise what is best for you here and monitor levels accordingly. Please note doctors do not routinely test for haemachromatosis (iron overload). My local lab has a reference range of 10 – 450, the optimum level here would be around 80 -100.

12. A good B complex will be required alongside your injections as all the

B vitamins work together. Make sure the B6 in the B complex is under 60mg. Please note, the folate contained in B complexes and multivitamins is commonly folic acid. Please see point 10 above.

13. In some patients potassium levels can drop with increased B12 loading doses. Your doctor should keep an eye on this and you can help yourself by eating potassium rich foods.

14. If you doctor feels that you are not B12 deficient based on ‘within range’ results you must push for other tests. Click here.

If you have neurological symptoms and a doctor who is non compliant you must assert yourself, and take someone with you who can support you.

15. Your ferritin and folate levels will require periodic monitoring. It would be pertinent for your B12 levels to be monitored in order to ascertain that you are able to metabolise your injections. Iron must be kept at an optimum level and not become too high. Once B12 treatment has commenced B12 levels may remain high but it is the symptoms which are the marker for your treatment. Do not let your doctor stop your injections if you have a malabsorption problem and there is a mistaken belief that your levels are replete.


Please sign our petition – you will be helping to save lives

Neurological symptoms in B12 deficiency are routinely ignored.

I do acknowledge that there are some of us with doctors who know exactly how to treat B12 deficiency, but evidence shows that we are not all that lucky.

Most of us with this condition suffer neurological symptoms. Our problem is that many doctors don’t recognise our symptoms as such and consequently they continue to worsen. The NICE and BNF Guidelines state that if neurological symptoms are present that B12 injections should be given every other day until the symptoms stop improving.

It’s also important to note that many of us are ‘within range’ on a serum B12 test result, but still heavily symptomatic.

When I was diagnosed with Vitamin B12 deficiency my doctor wasn’t really interested in my symptoms, they weren’t discussed and I don’t think they were even noted. I was given my loading dose injections every other day for two weeks and then I was supposed to manage on one injection every three months.

I couldn’t.

I have neurological symptoms. My myelin sheath, the protection for my nerves, has been nibbled away.

My memory was terrible, my bladder let me down, my tongue was sore and swollen, my vision was blurred, my bowel couldn’t muster up the strength to work, my neck, back, and toes burned with pain, and I felt anxious, I could go on and on. I thought I might be one of those people who end up in the news, with ‘early onset’ Alzheimer’s.

I have an injection every week now, but I have fought tooth and nail for this. I have never been treated as per the guidelines regarding neurological symptoms and I am not alone. I have cried with frustration during my GP appointments. I have asked my doctor why she thinks her memory is more important to her than mine is to me. I have been enraged by letters sent to me from experts I have never met, telling me I need antidepressants and psychotherapy instead of this 55 pence injection. Where is the sense in this? I know that antidepressants are not going to heal my damaged nerves – it is the little red B12 vial, cheaper than a chocolate bar, which does this job, perfectly.

B12 deficient patients are routinely under treated, neglected and ignored. It’s clear that we must all suffer some degree of nerve damage, with different sets of neurological problems and yet for some bizarre reason we are largely, all treated the same – poorly, and sparsely. We are all unique, we all have different B12 requirements. Many of us suffer returning symptoms within days of our injections, some of us can go longer, some of us can’t. I know members of the support group I belong to who are ecstatic when their doctors agree to give them their much needed injections every 10 weeks rather than every 12 but we all know that this frequency is enough to keep to us alive but not to repair the damage to our nerves. We need our doctors to give us a chance for optimum healing by listening to us, by taking our health seriously, by not filling us with chemicals we don’t need, but by giving us an essential vitamin.

A newly diagnosed patient should be given B12 loading doses over two weeks and following these, the patient, who suffers neurological symptoms, may be euphoric at being able to get out of bed for the first time in months or even years. This same patient who may feel a zest for life in place of deep depression, could then be told that they now only require one of these life saving, vital, water soluble injections, every three months. This incorrect statement is rolled out to countless devastated and desperate patients with the added untruth, that too much B12 can be harmful. There is barely any recognition of our symptoms, except for, it seems the depression we sink into when our lifeline is cut. Our request for more frequent injections falls on deaf ears but we are freely offered antidepressants as an antidote for our despair.

The depression induced by lack of B12 has one cure alone, tragically this cure for most, is rationed to one tiny vial only four times a year. This is madness.

B12 deficient patients should also have had their folate and ferritin levels checked. If these levels are too low our B12 can have a pointless journey through our systems and leave us without improvement.

Some doctors feel that our neurological symptoms are not B12 deficiency at all and so will continue to test, scan, prod and poke saying it is important they don’t miss anything ‘more serious’. We don’t mind this process as long as you continue with our essential injections, they can do only good. Vitamin B12 stops us deteriorating, stop our brains from shrinking, it don’t interfere with any other drugs and there is no known toxicity.

We need the treatment that the NICE Guidelines and BNF guidelines 9.1.2. allows us, injections every other day until our symptoms stop improving. There is no restriction on this – and there shouldn’t be.  Nerve damage takes a long time to heal, ask a neurologist – but not these two jokers, see letters 3 and 5 http://b12deficiency.info/letters.html.

Many of us with this condition have soaked ourselves in research in order to be armed with information to keep ourselves alive and well. Numerous occasions arise when this information we collect needs to be regurgitated for our doctors. We remind them of the guidelines repeatedly due to the simple fact that our neurological symptoms are continually misunderstood or ignored.

We don’t understand the confusion our health professionals suffer with the treatment of B12 deficiency because it is SO SIMPLE. Those of us with this condition are fully aware that it affects all body systems, that B12 deficiency affects our brains. It attacks both our central nervous and peripheral nervous systems and that these nerves run throughout our bodies from head to toe the damage wreaking havoc with our daily lives.

Yes it is this serious, but tragically our doctors feel we are making a fuss if we want –

to stay awake for more than three hours a day,

to move without pain,

to walk without wobbling,

to conceive without IVF,

to have a tongue that fits,

to empty our bowels from time to time,

to speak without forgetting,

to hear without constant ringing,

to see without blurring,

to feel calm and relaxed,

to hold down a job,

to have a day without tears,

to remember our loved ones names,

to feel like death isn’t a better option. . . . . . . . . . .

Is this really asking too much?

The guidelines regarding neurological symptoms are plain to see, so all we ask is that these are followed.

Our doctors take the Hippocratic Oath, it states “And I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them.”

What happens every day in reality, is criminal.

Please consider signing and sharing our petition – you will be helping to save lives

Newly diagnosed? Please visit – http://b12deficiency.info/what-to-do-next.html

Raising awareness – How YOU can help

To join Pat Kornic’s Life saving support group

NICE Guidelines

BNF registration – http://www.bnf.org/bnf/registration.htm

See Andrea McArthur’s Petition.

Dear Doctor, have you been giving vitamin B12 deficiency another name?

You could probably visit ANY street in the world and find B12 deficient residents. In 20 homes you may find eight people who are deficient, and this may be just two families, including the children of course.  B12 deficiency is very common, however it is very commonly given another name.

My symptom list overlaps with those of my loved ones, however some we don’t share at all. Please remember we don’t all present in the same way.

What we need our doctors to recognise is that misdiagnosis of B12 deficiency is, in itself, an epidemic. Please visit www.b12deficiency.info/misdiagnosis.html

We need our doctors to diagnose correctly and of course to rule out what may be considered to be ‘more serious’ conditions. Please start by ruling out B12 deficiency, make this condition your first port of call. After all, it’s safe, it’s exceedingly cheap to treat and it does not interfere with any other treatment you might feel it appropriate to explore.

I know a B12 deficient patient who has been restricted to quarterly B12 injections. They have also been given, lithium and its associated monitoring, anti psychotics, anti epileptics, anti depressants, MRI scanning, CT scanning. We know she deteriorates because those in charge of her care refuse to recognise the vital importance of this essential vitamin and that each of her symptoms traces it roots to B12 deficiency. Tragically this is not an isolated case.

In the face of flawed serum B12 tests, using a therapeutic trial of B12 loading doses whilst you spend the time ruling out, or confirming other illnesses is quite simply, common sense and good medical practice.

We need our doctors to KNOW the symptoms of B12 deficiency, yes there are a lot, but you have been trained to retain information, learning the symptoms of this condition will save more lives than you can imagine, I list them below.

Remember, this deficiency affects ALL body systems but not every sufferer will present in the same way, each family member can have a different set of symptoms and please don’t forget the children!  If you diagnose a mother, make it your job to screen any children too.

Make it your job to listen to your patient’s when their symptoms return only a week after an injection. Make it your job to follow the BNF guidelines and give the injection every other day until the patient’s symptoms stop improving.
Make it your job to understand the need for optimum ferritin and folate levels. Treat your patient’s as individuals, teach them to self inject, as you do your diabetic patients, just think of the nurses time saved! Put their B12 on repeat prescription so they don’t need to plead for health,  this will free up more of your time.
Please, please, please,  skip the cyanocobalamin tablets unless you KNOW, without a doubt, that your patient’s deficiency is due to diet alone.

Many with this condition have been misdiagnosed, they become expensive to treat, some cannot contribute to society and this costs the NHS a fortune.   You will see that the following conditions share many vitamin B12 deficiency symptoms.

I hope you will look closely at the diagnoses you have made for your patient’s and that you can find it within yourself to revisit the treatment prescribed.

Multiple sclerosis
• numbness and tingling
• blurring of vision
• vertigo
• tremor
• ataxia
• fatigue
• chronic pain
• muscular spasticity
• muscle weakness and tightness
• bladder incontinence
• constipation
• cognitive problems
• anxiety
• depression
• erectile dysfunction

• forgetfulness
• mood swings
• speech problems
• vision problems
• delusions
• incontinence
• weight loss
• loss of appetite
• dysphagia
• memory loss
• increased vulnerability to infection
• difficulty moving
• disorientation
• difficulty performing spatial tasks

• tremor
• stiffness of muscles
• dystonia
• postural instability
• depression
• anxiety
• cognitive impairment
• delusions
• sudden outbursts of emotion
• poor concentration
• psychosis
• urinary incontinence
• constipation
• erectile dysfunction
• dysphagia
• orthostatic hypotension

• fatigue
• forgetfulness
• confusion
• palpitations
• dizziness
• balance problems

Congestive heart failure
• fatigue
• breathlessness
• ankle swelling
• a persistent cough
• lack of appetite
• weight loss
• tachycardia
• depression
• anxiety

• slowed or confused speech
• cognitive impairment
• widespread pain
• stiffness
• fatigue
• inability to regulate body temperature
• tinnitus
• tingling and numbness
• anxiety
• depression
• painful periods

I could of course go on…… and on …………

Here are the symptoms of B12 deficiency

• Tinnitus.
• Tremor.
• paresthesia – numbness, tingling and pain.
• Confusion / disorientation.
• Weakness of legs, arms, trunk.
• Impaired vibration – position sense.
• Abnormal reflexes.
• Unsteady or abnormal gait / falls.
• Ataxia (Neurological disorder affecting balance, coordination and speech).
• Balance problems.
• Difficulty walking.
• Dizziness.
• Restless legs.
• Visual disturbances / decreased-blurred vision / damaged of optic nerve.
• Forgetfulness, memory loss.
• Dementia / intellectual deterioration.
• Impotence.
• Paralysis.
• Impaired fine motor coordination.
• Muscular spasticity.
• Bladder or bowel incontinence.
• Impaired pain perception.
• Nocturnal cramping.
• Disturbance in taste and smell.
• Optic atrophy.

Neuro psychiatric
• Psychosis
• Depression / suicidal.
• Post natal depression.
• Irritability.
• Paranoia.
• Mania.
• Hallucinations.
• Violent behaviour.
• Personality changes.
• Apathy.
• Anxiety.
• Delusions.

Haematological signs and symptoms
• Anaemia
• Macrocytosis (large red blood cells).
• Hyper segmented neutrophils.
• Generalised weakness, fatigue.
• Breathlessness.
• Pallor / jaundice.
• Chronic fatigue.

Vascular Problems
• Orthostatic hypotension / Postural hypotension

• Infertility.
• Recurrent miscarriage.
• Abnormal PAP smears.

• Infertility.
• Impotence.
• Low sperm motility.
• Low sperm count.

• Loss of appetite/weight loss or anorexia.
• Epigastric pain (poor digestion, bloated feeling after eating small or normal sized meals).
• IBS – Irritable bowel syndrome.
• Constipation.
• GERD – Gastric reflux disease – ulcers / mouth ulcers.

Additional Signs and Symptoms
• Dry cracked corners of the mouth.
• Premature greying.
• Glossitis – swollen / sore tongue, geographic tongue.
• Fainting/light headedness.
• Osteoporosis.
• Symptoms mimicking Parkinson’s and MS.
• Nominal aphasia – difficulty recalling names or words.
• Radiculopathy, spinal nerve pain – commonly in lower back and neck.
• Increased susceptibility to infections.
• Poor wound healing.
• Loss of appetite.

Please click here to see the signs and symptoms in children http://b12deficiency.info/children-and-b12.html

Please also see this page http://www.b12deficiency.info/what-to-do-next/

Raising awareness – How you can help

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‘Vitamin B12 injections are a placebo’ the ignorant doctor said . . .

Obviously to those enlightened health care professionals who understand the role of vitamins and minerals, this commonly spoken phrase is of course a completely ridiculous statement.

To those of us who suffer from B12 deficiency it’s infuriating to be told this by someone who studied long and hard to become a doctor.

The mere fact that some of our doctors haven’t a clue about the very foundation of all human and animal life is astounding.

I learnt about vitamins and minerals at school, it appears that for some doctors this may constitute the entire learning on nutrition – we really are stuffed if our particular GP happened to be ill that week. I don’t actually remember much of the detail but I do remember how important they are. Sadly it seems that even some of our newly qualified doctors replace their old knowledge with the following ridiculous ideas-

Vitamin B12 = Broccoli
Vitamin B12 injections = Placebo
Vitamin B12 deficient patient = Lazy, whiny, hypochondriac requiring antidepressants and a thorough dressing down.

Vets, in contrast, are taught properly on this subject and know when an animal is deficient. How strange it must seem to vets that some doctors try to treat this condition with antidepressants!

A placebo is ‘a substance that has no therapeutic effect’ or an ’innocuous or inert medicine’

Food is ‘any substance containing essential nutrients such as vitamins and minerals’, or ‘a nutritious substance that people or animals eat or drink or that plants absorb in order to maintain life and growth’.

B12 is essentially food, we starve without food, quite quickly as it happens.

‘Starve – to suffer or die, suffering or death caused by lack of food’ Our cells starve without B12.

Quite simply – we need food everyday to sustain a healthy life, we need all vitamins and minerals regularly to maintain optimum health. We cannot survive if we eat just once every three months so why do some doctors think we can manage on any vitamin if we were only able to access it once every three months?

Vitamins are food, they are essential to life, accessing vitamin B12 is very complex so injections are required unless the deficiency is diet related.

‘Dear Health Care Professional please learn this and act accordingly, your patients need you to update your knowledge urgently!’

The text below is taken from NHS Choices (link below) -It’s a shame it is misleading and incomplete in parts. I have taken the liberty of adding some improvements in BOLD CAPS. Although thankfully, nowhere, does it say ‘Vitamin B12 is a placebo’!


Vitamins and minerals are essential nutrients your body needs in small amounts to work properly.
Most people should get all the nutrients they need by eating a varied and balanced diet. HOWEVER, IF YOU CANNOT ABSORB  B12, YOU WILL REQUIRE HYDROXOCOBALAMIN INJECTIONS FOR LIFE IN ORDER TO ACCESS THIS VITAMIN. If you choose to take vitamin and mineral supplements, be aware that taking too many or taking them for too long can cause harmful effects. THERE IS NO KNOWN TOXICITY OF VITAMIN B12, IN FACT HYDROXOCOBALAMIN IS SAFELY USED IN LARGE QUANTITIES AS TREATMENT FOR CYANIDE POISONING. 
Some people may need to take vitamin and mineral supplements. For information on who could benefit from supplements, see Do I need vitamin supplements?
The pages in this section contain advice and information about vitamins, minerals and trace elements essential for health, including:
▪ what they do
▪ how much you need
▪ what happens if you have too much
▪ safety advice about supplements
For information about nutrition for children, see vitamins for children.

What are vitamins?
There are two types of vitamins: fat-soluble and water-soluble.
Fat-soluble vitamins
Fat-soluble vitamins are found mainly in fatty foods such as animal fats, including butter and lard, vegetable oils, dairy foods, liver and oily fish.
While your body needs these vitamins every day to work properly, you do not need to eat foods containing them every day.
This is because your body stores these vitamins in your liver and fatty tissues for future use. These stores can build up so they are there when you need them. However, if you have much more than you need, fat-soluble vitamins can be harmful.
Fat-soluble vitamins are:
▪ vitamin A
▪ vitamin D
▪ vitamin E
▪ vitamin K
Water-soluble vitamins
Water-soluble vitamins are not stored in the body, so you need to have them more frequently. BINGO ! LOOK AND REMEMBER IGNORANT DOCTORS – WATER SOLUBLE VITAMINS ARE NOT STORED IN THE BODY SO YOU NEED TO HAVE THEM MORE FREQUENTLY!!!!!
If you have more than you need, your body gets rid of the extra vitamins when you urinate. As the body does not store water-soluble vitamins, these vitamins are generally not harmful. However, this does not mean that all large amounts are necessarily harmless.
Water-soluble vitamins are found in fruit, vegetables and grains. HANG ON A MINUTE,  VITAMIN B12 IS WATER SOLUBLE AND IS ONLY AVAILABLE FROM ANIMAL PRODUCTS!

Unlike fat-soluble vitamins, they can be destroyed by heat or by being exposed to the air. They can also be lost in water used for cooking. This means that by cooking foods, especially boiling them, we lose many of these vitamins. The best way to keep as many of the water-soluble vitamins as possible is to steam or grill foods, rather than boil them.

Water-soluble vitamins are vitamin C, the B vitamins and folic acid. Folate is Vitamin B9
There are also many other types of vitamins that are an important part of a healthy diet.

Please visit www.b12deficiency.info

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