Treating serious vitamin B12 deficiency: a case of risk-benefit balancing gone mad

By Jerome Burne

Have you heard about the NHS trust that recently introduced an incredibly brutal, and possibly illegal, form of drug rationing to save money? Patients suffering post -operative pain will get half the dose normally required to keep them comfortable, kidney dialysis will be done twice a week rather than three and all diabetics will get the same amount of daily insulin regardless of their blood sugar levels.

In fact there is no such brutal and dangerous rationing program in place but, remarkably, in GP’s surgeries all over the country patients who have been diagnosed with a deficiency that causes increasingly dangerous symptoms have their treatment routinely withheld on the spurious grounds that they don’t really need it. All that is wrong with them is that their bodies can’t absorb enough, or any, vitamin B12 from their diet; it’s a problem that should be extremely simple to solve.

Instead it has become another example of the disaster that can result from medics’ almost total ignorance of nutrition and the complex ways vitamins actually work in our bodies. Research carried out in last few months suggests that the official guideline limiting B12 treatment to just four injections per year has no evidence supporting it.

However the rule is firmly enforced. Doctors who inject more frequently because they believe it is vital for a patient’s health have been threatened with disciplinary action.

The nasty results of a deficiency

What actually happens appears even more implausible than the fantasy newspaper story but it is a daily reality for some of the two to three million people who, for a variety of reasons, have become seriously deficient in Vitamin B12 – essential for nerve function, DNA repair and making red blood cells.

Symptoms of the deficiency include widespread pain, depression, serious fatigue, increasingly poor balance and loss of sensation in the feet. This is the result of progressive nerve damage which, if undetected and/or poorly treated, can result in misdiagnoses of conditions such as diabetic neuropathy, bipolar disorder, Parkinson’s disease and dementia. Lack of treatment can eventually lead to blindness and paralysis. 

Most people get enough of this vitamin from their diet – it’s found in animal products such as meat, fish, dairy and eggs – but the process of extracting it from food in the gut and then getting it into tissues throughout the body can go wrong for a variety of reasons. These include faulty genes, frequent courses of antibiotics that damage the gut bacteria needed to process B12, drugs that lower stomach acid, prolonged use of the diabetic drug metformin and certain intestinal infections.

If your problem is spotted early enough and was the result of not getting enough in your diet, then buying a supplement over the counter may be all you need. But if you have a faulty gene or you don’t get treated for a long time, you will start to develop damage to nerves in the body and brain that eventually become irreversible. Something worth avoiding you might think and very easy to do.

Unfortunately, there is an extraordinary and nonsensical obstacle course between being diagnosed as deficient in B12 and getting the amount you personally need to recover.

Test that counts the wrong thing

Simply getting diagnosed throws up the first big obstacle, which is known as the Serum B12 ‘reference range’. In theory this shows how much B12 there is in your blood and whether it is too little, too much or just right.

Now this might make sense if the test was very reliable but as official review papers acknowledge it isn’t. For instance, the East Lancashire NHS trust, which has a very low reference range, would rate you as fine if you were over 110 while elsewhere could be diagnosed as needing treatment if you were below 220. This variation is scary because continuing to be deficient pushes up your risk of permanent damage and increased incidence of depression, chronic fatigue syndrome, congestive heart failure and chronic pain.

As well as the random nature of the reference range, what the blood test measures virtually guarantees the results will be an overestimate. This is because it picks up two kinds of B12 – active, which can be used and inactive which is useless. Trouble is that this test can’t tell the difference. It just bundles both of them together and gives you a total. The test could be recording as much as 80% inactive B12. The limitations of this test have been understood for decades but shockingly it is still being used with disastrous results.

The vitamin treatment where one-size-fits all

If you are fortunate enough to be correctly diagnosed, at first it looks as if you are going to be taken care of. You will get a series of six injections over two weeks to top you up. Many patients feel a real improvement early on but each patient is different and if you’ve been deficient for years, it will take a long time to reverse the damage and for the symptoms to disappear. If you can’t absorb B12 from food, you need regular supplementing for life.

But then the next big barrier looms up. Standard practice is to give everybody, regardless of individual differences, exactly the same amount – one injection every three months.

In fact if you are suffering from neurological symptoms suggesting nerve damage, NHS guidelines say that after the initial six injections ‘loading dose’ you should get an injection every other day until your symptoms are no longer improving. This is often ignored however, and you may be immediately put on the standard three months regime. This practice seems blind to the fact that patient’s needs can vary greatly, that B12 is a remarkably safe water soluble vitamin that needs to be replaced regularly by injection when it can’t be absorbed from food.

Such a one-size fits-all restriction doesn’t apply to people with severe pain or to diabetics who are encouraged to adjust their insulin doses to ensure excess glucose is effectively cleared away, so where’s the evidence that this arbitrary regime is beneficial for these patients? It seems there isn’t any.

‘It’s quite obvious that a great many patients do extremely badly on 3 monthly injections,’ says Tracey Witty, a campaigner who runs an information website at www.b12deficiency.info who explains that she has had to become very well informed about her condition since there is such a lack of knowledge amongst healthcare professionals.

‘We know this because patients email me regularly with phrases in the subject line such as; ’Desperate’, ‘Please help’ or ‘Am I going mad?’  And then there are the tens of 1000′s of members of online support groups who angrily discuss the same problem.’

The damaging effects of this policy, on individual patients and NHS finances, shows up very clearly patients who have been diagnosed as B12-deficient and who are also in poor mental health. Giving them only four injections a year means they have no chance of reversing their many neurological symptoms such as a tremor. Rather than being given injections until it disappears, they are given lithium, a drug which makes it worse and requires regular monitoring and testing – a far more expensive and less effective option. The link between poor mental health and B12 deficiency was discovered over 100 years ago and yet it doesn’t appear to have made it on to the psychiatric curriculum.

At first Witty, understandably, assumed there was proper research that justified the three month rule. ‘So I began asking the various organisations a simple question: Please can you show me the clinical evidence which states that the three monthly maintenance dosage for B12 deficiency is optimal treatment.’

Nobody knows why we do this

It’s difficult to know whether to laugh or cry at the answers she got. This is what the team around Dr Sarah Wollaston, Chair of the Parliamentary Health Committee told her: ‘…unfortunately between us all we can’t track this information, you will need to contact NHS England/Department of Health.’

But NHS England was also unable to help: ‘We are ‘unable to advise regarding this matter and it is recommended you contact National Institute for health and Care Excellence (NICE).’

But turned out NICE had nothing either: ‘We produce clinical guideline topics are referred to us by the NHS England,’ a spokesperson explained. ‘I can confirm that we have not been asked to develop a guideline relating to the care of people with B12 deficiency.’

Maybe Public Health England could come up with something? But no; ‘This falls outside our remit. It might be something NHS England can help you with.’ And so the circle closed.

A last try was the BNF (British National Formulary) who came up with the dog-ate-my-homework explanation: ‘unfortunately we are unable to access our archives to check what evidence base was used to determine the 3 monthly dosage of hydroxocobalamin (vitamin B12).’

Witty also asked all the firms which provide injectable B12 in the UK. ‘Each of them drew a blank too’ she says.

But even if it is just an administrative rule, surely there is some provision for people who relapse during the three month period and start to feel dreadful again?

There is, but unfortunately it involves the flawed reference range test. And if you’ve had the loading dose that is virtually certain to classify you as within the range. This tells an unaware doctor that you don’t need another injection even though you may be showing such symptoms of deficiency as extreme fatigue, memory loss and depression and your useable B12 is on the floor. (Read more…)

So the obvious question: why do you need a doctor to give you B12? Why not get it from any chemist or health food store? Many do but for various reasons not all benefit from an oral supplement; they need injections. And if you are one of them – and so most at risk of long term damage – this is where you will meet the biggest obstacle of all.

It would be simple and cheap to make B12 injection kits available over the counter, as they are in most countries around the world including Australia, Canada, Germany, France and Spain. But in the UK you need a prescription to get the injection and if the flawed blood serum test says you are OK you are unlikely to be eligible. That’s why there is a campaign to make them available over the counter.

Tiny risks trump big benefits

‘With treatment so illogical and not based on either evidence or physiology it becomes even more essential for patients to be able to access injectable B12 over the counter in the UK,’ says Witty.

‘Patients don’t want more injections than they need, they just want to be able to function and get on with life.’

The flawed protocol that relies on unreliable reference ranges and evidence-free injection regimes has become established because most clinicians, lacking any nutritional training, have a very poor understanding of even the basics of vitamin biochemistry. The risks of additional supplementation are very small but the benefits are huge.

B12 is essential for making healthy red blood cells and without it nerve damage will inevitably get worse. Prescribing drugs with a range of nasty side-effects is normally justified on the grounds that the benefits outweigh the risks. How irrational then to reverse that equation with vitamins; protect against very remote risks at the expense of very large benefits.

__________________________________________________________________

If you think you maybe deficient in B12 go to: http://www.b12deficiency.info/what-to-do-next/

For more details on the campaign please see; https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

If you are finding it impossible to get level of supplement you need, consider asking your MP to contact Nicky Morgan MP.

 

Jerome Burne

Jerome Burne

Jerome Burne is the editor of HealthInsightUK. He is an award-winning journalist who has been specialising in medicine and health for the last 10 years and now works mainly for the Daily Mail. His most recent book “10 Secrets of Healthy Ageing” was written with nutritionist Patrick Holford. He blogs at “Body of Evidence” – jeromeburne.com. 2015: Finalist for 'Blogger of the Year' award from Medical Journalists' Association.

23 Comments

  • Should a vegan with a history of low b-12 take supplements up to and on the day of blood testing or should the vegan stop taking supplements for a certain time in advance?

    • Editorial

      I’m not a clinican but will ask Tracy Witty to point you in the right direction for a reliable reply

      • Hi Gail, this could lead to a ‘within range’ serum B12 result for around four months, this is, I understand due to the turn over of red blood cells. Your result would not give any indication of what active B12 is available to you.
        Obviously if you are benefitting form your supplement (and your deficiency is solely due to dietary lack) it would be unwise to stop supplementing for four months for this test.

        Have you seen this page? http://www.b12deficiency.info/vegetarians-and-b12/

  • This is well written and accurate . Wish it could be sent to all doctors .

  • There are a number of “over-the-counter” versions of Vitamin B-12 that work well

    This is despite the protestations of http://pernicious-anaemia-society.org/ that only injections work

    Lozenges that dissolve under the tongue and capsules of Methylcobalamin are effective

    Check out the Vitamin B-12 Methyl product at Amazon by searching for B-12 Methyl from Bio-Tech
    .

  • This is scandalous! They are playing with our lives :(

  • Only injections work for people that have the intrinsic factor and no amount of over the counter supplements etc will work !

  • I am so confused, I have been told that i have Pernicious anaemia it b12 deficiency, i have had a course of injections. as far as i know i am not having any more treatment.

  • My personal experience the only healer is myrself .As I eat my health is made with my feet under the table .There is so much misinformation is up to every person to take active interest .What suit me dont suit everybody your health the length of time you are going to remain on top of this earth ,is strictly up to you must decide which road you are going to take.Question everything seek the best information the duty of any expert is to give you accurate information if you are confused is because you are not getting it at the moment .Perhaps you need a good Book about nutrition.

  • I was told I must have pernicious anaemia, and would need B12 injections for the rest of my life! However, a little later I was able to come off omeprazole (which I was prescribed to counter the acidity caused by diclofenac, which I was taking to counter the pain created by simvastatin, which lingered for a bit even after swearing off statins for life…). I asked the doctor if my low B12 might have been caused by my low stomach acidity caused by the omeprazole – so he had me re-tested, and my B12 level was normal!

    So if you are taking a proton pump inhibitor, this may be the cause of low B12 levels!

    • If you was having treatment at the time your levels would be normal your meant to be of all treatment before testing and have a gap period I have had to have my b12 removed for 7 -8. Months b4 being tested and my level at the time was only 250 when they removed it it had taken over a year to get that level and my b12 def caused my major strokes so don’t always trust your doctor

    • If you have classic PA David you will need B12 for life, your GP may have thought all was well but as Tracy says, the blood values stay high long after your B12 injection has left your body. Please see point 6 here http://www.b12deficiency.info/what-to-do-next/ for more information.

  • YOU HAVE DESRIBE YOUR PERNICIOUS ANAEMIA Who is the healer?There is always more to disease than the mere physical diagnosis ?You are a human being your physical condition is curable.My experienced tells I am 65 years of age the last time i got ill twenty-five years ago I start taking active interests. You cannot get something for nothing .Health must be earned …No one can cure you .Health building requires individual discipline .Your mind and brain must take over the operation of your body you cannot expect to build a high vital force on poor chronic malnutrition.
    We must have hope and devlop habits that help to cure us We have to be realistic when our time comes…No one is going to get out alive for sure .

  • YOU HAVE DESRIBE YOUR PERNICIOUS ANAEMIA Who is the healer?There is always more to disease than the mere physical diagnosis ?You are a human being your physical condition is curable.My experienced tells I am 65 years of age the last time i got ill twenty-five years ago I start taking active interests. You cannot get something for nothing .Health must be earned …No one can cure you .Health building requires individual discipline .Your mind and brain must take over the operation of your body you cannot expect to build a high vital force on poor chronic malnutrition.
    We must have hope and devlop habits that help to cure us We have to be realistic when our time comes.

  • I can’t even get the NHS Guideline treatment. B12 103ng/L <180 – 1000
    with neurological symptoms. I was given 5 loading injections, I was then retested after 3 months B12 343ng/L you are now normal we will retest in 6 months.

    I was lucky enough to be able to go to a private neurologist who confirmed my neurological symptoms, but this still did not get me the NHS treatment. I had to get injections privately, which I can afford at the moment, what happens when I can't?

    My GP does know what the Guidelines are, I printed a copy of the BCSH Guidelines for him.

  • The power of hope
    B12 103ng/L <180 – 1000,cancer heart disease,diabetes we always have an option.There's always room for hope.If we love ourselves we don't repress we seek knowledge and the best neurologist,or whatever expert to help us.Nobody can tell the future from a pathology report.A good doctor gives hope.I am not going to die because of statistics.And hope you won't either

  • The power of hope
    Hope that your GP will see sense, that you need B12 injections more than the walking stick offered for your balance problems and numb legs.
    Hope that you would be referred to a knowledgeable neurologist.

    Of course writing on paper won’t kill you, but what it represents can. Please don’t bother to ‘comfort’ me.

  • There are no miracle cures…except the miracle cures that nature performs

    I am not interested in convincing anybody or lecture about health and exercise.I am a humble person who has a passion for prevention it doesn’t matter what disease is there is always room for hope.
    The various disease and disabilities associated with lack of exercise the hypokinetic disease are described as are consequences of lack of exercises in terms of reduced health and quality of life ,increasing disability and premature ageing .The advantage of regular and adequate physical activities are include:
    Musculoskeletal efficiency and fitness.
    Continued efficiency of heart and lung function.

    The maintenance of satisfactory metabolic function,including normal blood fats,blood sugar ,blood pressure,and easy weight control.
    Psychological benefits ,including self-image stamina self-confidence and ability to deal with stress,and greater immunity to depression .
    Doctors are not God,the various techniques they suggested can allow you to be comfortable. I work at list five miles everyday and exercise regularly I don’t just write on paper.The hope of humanity lies in the prevention of degenerative and mental disease ,not in the care of their symptoms. Seek the best information question everything.

  • My hubby & I have both permanent nerve damage thanks to the Australian low range of serum b12 & lack of vitamin deficiency education In universities.We are both MTHFR A1298c which thanks to holistic GP we are now having accurate treatment after I had seen 15drs including 7 specialists who didn’t have a clue why I was suffering severe fatigue & neuro symptoms.My ultimate goal is like American nurse Sally Pacholok to make an awareness & educate the medical fraternity to stop the needless suffering Australia wide in the community .Blood tests like activeB12 Or holo ,folate ,ferritin,iron, MMA ,homocysteine which causes (blood clots,heart attacks ) should all be attended if mental illness,fatigue or neuro symptoms present.

  • I have had an awful couple of years trying desperately to regain my health.

    Despite being referred to medical experts from a number of specialisms (haematology, neurology, dietetics, gastroenterology), the only effective treatment was initiated by my GP. Unfortunately, once specialists are involved, the GP is unable to act autonomously.

    I only gained any real understanding of my condition through reading Martyn Hooper’s book, Sally Pacholok’s book, Tracey Witty’s blogs and via the Pernicious Anaemia Societys health forum on Health Unlocked.

    I only started seeing improvement once I started self-injecting. This was not an easy choice but, regretfully, inevitable.

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