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

Sep 28, 2016 | Guidelines, Misconceptions, Treatment | 23 comments

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, Jane Hunt 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.



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  1. lorraine cleaver

    Not a bit surprised Tracey. Same thing happened when i sought evidence for their steadfast insistence that Levothyroxine was all a hypothyroid patient needed. A Byzantine in it’s complexity search began and i was passed from pillar to post, not least because the evidence is so utterly patchy and unscientific.

    Great job though and keep on bugging them!

    • traceywitty

      I know you know just how exhausting this ridiculousness is Lorraine. One day we’ll get there, surely!

    • Lyn

      Hi Lorraine
      I note you have knowledge regarding Thyroid condition and Levothyroxine
      My daughter has suffered for years and this is what she has been prescribed for her under active thyroid condition. She is always
      exhausted and I wonder if could advise whether she should be taking
      something in addition to the above medication. Regards Lyn

  2. Cindy Stirrat

    Wow Tracey, you put so much hard work in to this for us all! Thank you for all your efforts, and as Lorraine stated, I am not surprised in the slightest by this. It’s just another piece of weaponary to add to our ever growing arsenal that will one day win us the appropriate treatment we need. Well done and hat’s off to you!

    • Tracey Witty

      Thanks for your kind words Cindy, lets hope we can get the ‘powers that be’ to listen to us!

  3. Sally

    It’s a joke and the more people you talk to the more not very funny it gets. Pernicious anaemia is a life threatening condition, even worse the increased probability of neurological damage first means a low quality end of life which will cost the NHS tens of thousands to ‘treat’. I’ve given up trying to get what I need and buy the same prescription injectable B12 from Amazon.de I don’t like injecting myself but have little choice.

  4. Clivealive

    This “One size fits all” syndrome goes back beyond Hydroxocobalamin.

    I was diagnosed with P.A. in 1972 and put on cyanocobalamin every four weeks and I have been on that regimen until July this year when I finally (after six years of trying) “persuaded” my doctor that I needed B12 more frequently because of the return of neurological symptoms in the run up to my next injection.

    I now have my cyanocobalamin injections every three weeks

    • Tracey Witty

      Thank goodness you are being treated well Clive. We need more GP’s to recognise that one size does not fit all any day of the week!

  5. Wendy Mackie

    Don’t blame the doctors, they are constrained by the “establishment”. I first started receiving B12 injections 10 years ago from an enlightened private GP, who was eventually struck off after a witch hunt for mal practice. I have been self injecting ever since at great expense. Whether I can afford this after retirement is another matter and will no doubt cost the NHS more than the B12 injections in treatment of numerous lack of B12 consequences!

    • Tracey Witty

      Agreed Wendy, there is an element of ignorance and arrogance amongst some GP’s but I fear most of our problems are related to the ‘hand tying’ of GP’s who want to treat patients correctly but are penalised for doing so. It’s a shocking situation and I’m sure leads to many sleepless nights for those who are aware but are feel unable to go against their colleagues or other involved parties.

  6. Janice Mallett

    I was diagnosed in 1981.
    I did OK on monthly cyano cobalamin injections.
    I didn’t need a calendar, I knew I was due for an injection when my symptoms returned,
    In 2000 I saw a specialist who recommended that rather than wait for my symptoms to return, I have my injection three weekly. That meant I could be symptom free, rather than struggle through a few days of fatigue etc every month.
    This is an illness that should be treated by symptoms.
    Our bodies know us better than any text book. Listen to your body!

  7. Sarah

    No medic believes me when I say that my symptoms return within three days of an injection and that’s not even including the symptoms that seem to be permanent.

    What options do I have? Deteriorate or treat myself?

    • Tracey Witty

      Unfortunately your dilemma is one that too many patients face Sarah. There is so little help for patients whose GP’s have ignored their pleas for more frequent injections. Nobody should have to source a lifesaving vitamin themselves. All patients deserve to be treated as individuals.

  8. Penny

    Thank you for your continued hard work Tracey. As a sufferer myself and a health professional, I am using every opportunity possible to ask these questions and advocate for my patients. Unfortunately I seem to hit a brick wall in every conversation with GPs. I will keep trying though, we have to.

    • Tracey Witty

      We do indeed Penny. I think many GP’s would be shocked to realise that there is no evidence for the restricted regime. What a completely mad situation we all find ourselves in!

      • Shona mackenzie

        Two years of illness. Having to give up my job through mental health, cognitive decline, neurogenic bladder, left side body numbness and much more. Tests at gynaecology, procedures, meds, and bladder specialist nurse.
        All my symptoms were put down to menopause! I thought I was dying! Or had MS.
        One day I mentioned to my gp my tongue was half numb, she ordered bloods and my b9 was deficient at 2.7 my b12 lower end of NORMAL!! 233. I was given tablets for both. I had some recovery after a couple of weeks and bladder working again completely after 2 months!
        I am still on tablets but my symptoms come and go mostly my feet and bladder. The scary thing is I was told only a major bladder operation was next for me! My daughter has infections eventually 10 weeks and starts to suffer after 4 weeks.
        We need to address this! It’s cheap and available so why are we being made sick?
        Is this to keep other departments busy with fake illnesses? When simple tests can be done and health is fixed.
        Please, please the system needs to change before more of us are disabled, permanently damaged or die at this negligence.

        • Tracey Witty

          Shona, thank you for taking the time to comment. Yes our symptoms are often attributed to something else that may be going on in our lives rather than the deficiency which would be obvious if our healthcare professionals knew enough about it.
          Have you never had B12 injections?

  9. Cheryl

    Tracey, not sure if I managed to get through to you before, bit new to all this. I have been firstly diagnosed with B12 def. and put on the usual regime, ending in 3-monthly intervals – only lasted till the 2nd one, then found to have blood swimming in it (2000+) but high MMA (351) so diagnosed as having ‘Functional B12 deficiency at tissue level’- for which there seems to be no professional guidelines for long-term treatment. At present, am still improving slowly on 2 injections per week, but neurological symptoms persist. Any advice where to look? Dr is trying hard to help, but it’s like this doesn’t exist if not PA.

    • Tracey Witty

      Dear Cheryl,

      I am so pleased you are getting regular injections. Obviously it can take some time to repair the damage to nerves.
      Your level could be at 2000 for months after a B12 injection. Mine is consistently over 2000 as I have a weekly B12 injection. Has your doctor checked your folate and ferritin levels? Please see points 10 – 13 here, it may help to answer some of your questions, http://www.www.b12deficiency.info/what-to-do-next/.
      Are you in the UK? Are you having hydroxocobalamin injections? If you would like to contact me please use http://www.www.b12deficiency.info/contact-me

      Best wishes

  10. Ruth Truswell

    Thank you for your work and dedication. Have just sent an email to my MP Ben Bradley, citing this article and naming your MP, with my personal journey on this road to discover. Let’s hope we can get this matter into the public domain and understood

    • Tracey Witty

      Thank you Ruth I sincerely hope you are heard, Best wishes Tracey

  11. Jennifer

    Do we have any chance at calculating the estimated cost to the NHS of all the unnecessary appointments and procedures with neuro/gastro/haemo? And then can we put an estimate on cost to the NHS of treatments for misdiagnosed dementia, MS, etc?
    I’d be interested to know how much the NHS are saving themselves by not giving us more frequent injections.

  12. jencwarr

    PS: shared with my MP in Cambridge, thanks Tracey!


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