A serum B12 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.

lifeboy-b12

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;

http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Causes.aspx 

‘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

 

B12 deficiency, the fantasy & the reality

The BBC came to the first day of the 2016 conference and as part of their report they needed to get a ‘balanced’ view of B12 deficiency so they interviewed a GP. This slide below shows the statement provided.

IMG_3100

As you can see, this GP from the RCGP (Royal College of GP’s) has stated that;  “GPs are highly trained individuals and I have absolutely no doubt of their ability to diagnose and thereafter treat vitamin B12 deficiency.”

The fact is that from experience, we know that this is a fantasy, many of our GP’s know that this is a fantasy and I’m sure that even the doctor speaking those words knows that the statement he gave (or was given) is a fantasy.

There is no doubt that GP’s are highly trained – but they are not highly trained in nutrition, and certainly not in B12 deficiency. How can they be when it doesn’t feature in their curriculum?

The stark reality for B12 deficient patients, not just in the UK but globally, is that for the vast majority of clinicians including consultants, doctors, nurses, medical students and even NHS Nutritionists,  education in nutrition is sparse and in the case of vitamin B12, it can be non existent. Even some privately trained nutritionists do not understand the essential need for B12 injections rather than oral supplements in those who cannot absorb B12 from food.

Unless a clinician has a personal interest; suffers from this condition themselves or they have a family member with it,  they very often have no idea of the many causes and symptoms of B12 deficiency or of the seriousness of it. They may be exposed to limited information on just pernicious anaemia which, in reality, represents the very tiny tip of the iceberg.

Myths are learnt or picked up during their careers;

That too much B12 is toxic, that levels over 2000 post injection are ‘dangerously high’

That the symptoms experienced are psychosomatic

That B12 is a placebo and that the more you have the more you want

That 4 injections a year means you have a vast store of B12 in your liver, enough to last you years

That even though you include B12 in your diet, that your deficiency is dietary

That you can now miraculously absorb B12 now because their computer says so.

This is all incorrect.

An example of the reality for many patients is contained in the letter below. This was sent to me (and launched my website www.b12deficiency.info) there are even worse examples contained within the letters page.

You can see from this letter that my GP contacted a gastroenterologist, a ‘Specialist’ who should (in an ideal world) know a little about B12 deficiency and the gut, however, he felt I should see a psychotherapist and be prescribed anti depressants for my B12 deficiency symptoms. He came to this conclusion without ever meeting me. Bizarre practice?

My GP perhaps contacted this gastroenterologist because she felt her own knowledge was not enough or she needed someone else take the responsibility? I feel she was let down by someone else whose knowledge ‘was not enough’ either.

Specialist letter (2)

My GP thought the suggestions in the letter were reasonable until I pointed out that yes, I could spend £50 talking to a psychotherapist but what I would be saying is “I’m here because my GP won’t give me the B12 injections I need.”  I also asked my doctor why she thought her memory was more important to her than mine was to me. Thankfully I was prescribed more frequent B12 injections.

Many people write to me to ask “who is the best specialist for me to ask my GP to refer me to regarding B12 deficiency”. The answer to that can only be; ‘the specialist who understands what it means to be B12 deficient’ and tragically, the experience for so many is that those are few and far between. Too many patients find themselves out in the cold, desperately under treated or misdiagnosed with other conditions simply due to a lack of education and awareness.
Our clinicians have been done a great disservice, it’s complete madness that nutrition is not the biggest part of medical training.
If we look at this from the GP’s point of view and consider the long years of intensive training,  a patient tries to tell them they’re missing something so fundamental.  They might think it ridiculous that this seemingly enormous potential for misdiagnosis of B12 deficiency were fantasy on the patients part. Surely if it was so important then surely it wouldn’t have been missing from their education, it would have warranted in-depth learning and be a part of all modules and not just the couple of hours they may actually spend on the subject?

How can our GP’s look for something they don’t know they should be looking for? If their eyes haven’t been opened by personal experience and their peers dismiss B12 deficiency as a nonsense afflicting hypochondriacs, then the chances are that they might conclude this too.

I want to share this Ted Talk on ‘The Power of Generalism’ by Dr Ayan Panja with you because it served to remind me of the daily challenges and wide ranging skills that GP’s have. Due to the my own experience and that of those who write to me, I am guilty of forgetting this from time to time.

 

In the UK the average GP is allocated around seven minutes to with each patient. This includes listening to the complaint, diagnosing and prescribing. This is unsatisfactory for both parties. Sometimes it is easy to forget the previous kindness and excellence of our individual GP’s when the gaping chasm of knowledge of B12 deficiency looms.

This situation can lead to a drastic change in the patient-doctor relationship. The emails I receive every day very rarely champion the GP or the specialist. They are from desperately ill people who are being, dismissed, under treated and generally given short shrift. This needs to change but the ‘system’ is not making this easy for either party.

There are GP’s who are able to treat B12 deficiency correctly as per patients symptoms, there are others who feel their hands are tied and there are some who presume that they know how the patient feels, better than their patient.

Some enlightened GP’s are fully aware of the terrible hand dealt to B12 deficient patients and if we could all work together on this then our relationships would remain intact.

I feel my job with the website is to help patients to remain under the care of their doctors. In order to do this, some patients have to try and educate, sometimes this is an insurmountable task and patients end up ‘going it alone’. This is far from ideal.

There are ‘powers that be’ in the NHS, the government and other agencies who are well aware of the situation and scale of the B12 deficiency problem. Thousands of us have reported it and there are countless journals spanning decades backing up what we say,  but so far it remains suppressed. The comment from the GP to the BBC bears this out.

By working together we can make a difference.

Best wishes Tracey

www.b12deficiency.info

Facebook – https://www.facebook.com/b12deficiency.info/

Twitter – @B12info

If you need any help or information, please email me at tracey@b12deficiency.info

If you are interested in attending next years conference (September) please register your interest via conference@b12deficiency.info

Remember there is no clinical evidence for our restricted treatment – your doctor may not be aware of this and might be inclined to increase the frequency if they were?

http://www.b12deficiency.info/blog/2016/09/28/the-tanks-empty-but-i-can-smell-petrol-so-you-have-90-days-more-driving-ahead-of-you/

 

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… 

Discussion

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.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1549043/pdf/bmjcred00570-0031a.pdf

.……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.

Method
……..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. 

Discussion

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!

Conclusion

… 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!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1549043/pdf/bmjcred00570-0031a.pdf

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

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

Abstract

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.

Introduction

…..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
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1967.tb08734.x/abstract

 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.

http://www.bmj.com/content/311/6996/28

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.

Results

…..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.

Conclusion

……….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……

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1230464/pdf/cmaj_161_2_146.pdf

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.

A very bright light at the end of a very long tunnel – Letter 7

The letters page http://www.b12deficiency.info/letters/ is full of examples of poor understanding of B12 deficiency…. but letter 7 is very different!!

If you are struggling to gain access to correct treatment and you have similar problems to this patient, maybe your GP or haematologist could benefit from reading this, frankly, amazingly supportive letter?

‘…….a treated case of pernicious anaemia and subacute combined degeneration of the cord. She requires high doses of hydroxocobalamin to maintain her general well being, i.e. 1mg intramuscularly daily.… I will leave it to yourself to make enquiries and discuss whether her hydroxocobalamin can be fully funded by the NHS.’

 

Many of us have problems with accessing correct treatment. Many of us try desperately to raise awareness of B12 deficiency.

If you want to learn more and know of others who do too, please share the conference information with them – http://www.b12deficiency.info/conference-2016/

Letter 7 Haem-letter-1200

Please note; This letter came to me fully redacted so I have no idea who wrote this letter or which NHS Trust they work for.

Dumb and dumber with NHS money to burn.

As usual, I want to say that I acknowledge there are some clinicians who treat B12 patients correctly, this sorry tale below only refers to those who don’t.

See below another shocker of a letter sent to a B12 deficient patient whose doctor is perhaps hard of hearing and it seems, in need of a little reassurance from a Consultant Haematologist. Lets be honest, he just wanted someone else to reinforce his own ignorant stance.

image1 2

Here you can see that the GP has noted that his patient ‘developed symptoms which occur pre -injection and are relieved post-injection and is receiving the B12 injections every four weeks.’

Clearly I am no rocket scientist, however this statement is clear as day to me.

Put simply;

Patient is in pain and suffering, B12 injection is given, pain and suffering goes away –

With any other condition than B12 deficiency it might actually be that a GP listens to the patient, adds two & two together and thinks for themselves. (Actually it’s a similar story for thyroid patients too).

What should happen is this –

The GP makes the connection that the treatment given at a 4 weekly interval is just not cutting the mustard and so should think; let’s try every 3 weeks – or better still, I’ll ask the patient to tell me at what point the pain and discomfort return post injection and try and nip it in the bud for them by giving the injection way before the pain becomes unbearable.  Simple eh?

The reality is that those long years of medical training regarding listening to the patient and powers of deduction appear to go out of the window with B12 deficiency and two and two for many doctors, cannot be added up at all. They feel they have to call in the ‘big guns’ instead of making a decision all by themselves.

It makes no sense to a B12 deficient patient that such a letter even exists, it’s ridiculous and a complete and utter waste of time for all concerned, including the secretary and the postman.

The reason this letter does exist is because NICE Guidelines direct the GP to refer to haematologists;

http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

In my opinion, It would be far more useful to add (fully educated) neurologists and psychiatrists to this section of the guidelines since B12 deficiency isn’t a blood condition. Many patients never experience the enlarged red blood cells (macrocytosis) which lead to this mistaken idea that a haematologist would be best placed to treat a neurological condition.

So the consultant haematologist gives us the answer in the first paragraph but then concludes something entirely ridiculous in the rest of the letter – all that time at university and still not able to understand something so simple, it’s a travesty.

The haematologist doesn’t understand B12 deficiency at all, doesn’t understand that serum B12 blood values when on treatment mean nothing. They will almost always be what a doctor considers ‘normal’ even 4 -6 months post injection or even oral supplementation. This serum value does not indicate what is happening at a cellular level.

Both doctors completely forget the patient’s suffering and ignore what the patient reports.

The haematologist, clearly without any correct training on B12 deficiency regurgitates the same old rubbish peddled by so many clinicians;

no value in increasing the frequency of injections’ – Even though they solve the problem!

these are recommended to be given only every three months’ – Check again – this patient suffers from neurological symptoms so should be treated on ‘alternate days until there is no further improvement’ and then the maintenance dose is 2 monthly. (still not nearly enough for many)

she is being significantly overdosed’ – Completely impossible.

highly unlikely that this is related to B12 deficiency or B12 administration’ – I refer this dumbo to the first paragraph where the enormous clue lies.

The haematologist suggests, in their infinite wisdom, that the patient be referred ‘to a medical clinic for investigation’ – doesn’t this beggar belief??!

The cost involved in these unnecessary referrals just because there is a gaping hole in the curriculum for all health professionals is phenomenal, but it’s not the haematologists money being thrown down the drain is it? They still get paid for not being able to read, research or comprehend simple information and for taking the time to commit this rubbish to paper.  Outrageous.

 

B12 Reminders

B12 is required by the body every day

B12 is a water soluble vitamin

B12 is not addictive

B12 cannot be overdosed

B12 is not a placebo

B12 is essential to life

 http://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/treatment-with-high-dose-vitamin-b12-been-shown-to-be-safe-for-more-than-50-years/

If you want a crash course in B12 deficiency click here;  http://www.b12deficiency.info/what-to-do-next/

If you think all clinicians need to be educated on vitamin and mineral deficiencies click here;

https://www.change.org/p/dr-margaret-chan-who-niall-dickson-gmc-make-the-study-of-nutritional-deficiencies-comprehensive-and-compulsory-for-our-doctors-in-10-years-of-training-our-doctors-may-never-study-key-information

If you think our treatment would be better placed in our own hands please sign this too!

https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

B12 and Thyroid conference 2015 – an enormous success, incredible feedback and a game changer!

 

I want to say a huge thank you to the fantastic four; Sally Pacholok, Lorraine Cleaver, Umahro Cadogan, and Dr Malcolm Kendrick – who all have more than one thing in common;

A passion for educating and exposing truth, unflappable tenacity and humour!

Sally Pacholok, as we with B12 deficiency know, is an inspiring educator who diagnosed her own condition and is completely dedicated to raising awareness of this condition. The vast amount of information Sally imparts in just 2 hours, is incredible.

Her time in the UK was spent working almost solidly and even during her sparse free time managed to help patients in a profound way. Anyone reading this who would like Sally to speak at an event then please get in touch, you won’t look back!

Lorraine Cleaver told us of her shocking experience of thyroid disease, her planned suicide and her road back to health after appalling treatment due to ignorance. She also recounted Jill’s story, which echoed her own experience as Jill remained undiagnosed with B12 deficiency and Graves disease for years. Jill was subjected to ECT (Electroconvulsive therapy) in place of what her body required. This presentation was profoundly moving.

Umahro Cadogan became so ill in his teens that he too had to become his own doctor. He has made it his life’s work to educate himself and others on nutrition and nutrigenomics. His presentation on methylation, a hugely complex subject, was expertly delivered making it accessible to all.

Dr Malcolm Kendrick talked about the shocking state of accepted medical data. He is the kind of GP we all want, sensible, caring, humorous. He sorts the wheat from the chaff and is determined to shine the light on the dark corners of medicine. I have followed his blog for years and if you don’t already, then sign up!

IMG_9888

Pic. Dr Jeffrey Stuart, Sally Pacholok, Umahro Cadogan and me.

Just a couple of hours after the conference emails started to arrive from delegates and I was stunned and delighted, here is the first;

“ Thanks for organising the excellent conference today. I was delighted to attend and learnt a lot and met some lovely people. The speakers were all very engaging and enthusiastic.

I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday! That is testament to the line-up you organised. Well done. I hope it makes a difference.“

 Dr J Younge –

Well, judging by my inbox there has already been a huge shift – the day really can be labelled ‘A Game Changer’!

Dr J Younge sums it up perfectly, the delegates were completely engaged right up until the end.

For those of you who attended you will know that there was an impressive (and surprising) number of health professionals across all disciplines who attended and who thankfully took the time to write;

“Congratulations on organising a really interesting day.

The speakers were excellent and inspiring and gave us plenty to think about!”

Dr S Williams

For those of you who couldn’t attend – I promise there will be more events in the future. (I have never done this before, but I really enjoyed it!)

It worked because of the quality and mix of the speakers, and because of the connection between all of the subjects. Those who came are now determined to make a change.

It was a fantastic day and I have learnt a lot about how to make it even better next time.

Heartfelt thanks to Dr Jeffrey Stuart and of course to Damian Witty.

Thanks to all who supported me in organising this event – you are priceless!

Tracey x

www.b12deficiency.info is my passion, highlighting mental health, fertility, pregnancy and children is a must.

 

For more information on the speakers please visit – http://www.b12deficiency.info/conference/

If you want to help us to access Hydroxobalamin OTC please sign and share this petition.

If you want to make the education of nutritional deficiencies for doctors compulsory and comprehensive please sign and share this petition too.

Lets continue to work together, we will make a difference.

http://www.b12deficiency.info/how-you-can-help/

The pernicious ignorance of B12 deficiency in patients with poor mental health.

Despite the general misconception that B12 deficiency only affects women over 60, this condition does not discriminate. It is those who train our health care professionals and consequently our health care professionals who do. The neuropsychiatric symptoms of B12 deficiency are many and as with all symptoms they can manifest at any age and in either sex.
These include –

• The unborn child
• Babies
• Children
• New mothers
• The middle aged
• The elderly

It appears that very few doctors understand the need to rule out this debilitating neurological disorder once a mental health condition is diagnosed. Of course there are many reasons for poor mental health but to ignore nutritional deficiencies is ridiculous.

One of the most common presenting symptoms of B12 deficiency is depression and yet the chances of a doctor exploring this symptom further to see if there might be a physical cause appears to be very slim.

How many children are incorrectly diagnosed with Bipolar, psychosis, depression when B12 deficiency is the root cause?
How many undiagnosed B12 deficient mothers find themselves devastated by post natal depression following nitrous oxide administration during labour?
How many cases of ‘early onset Alzheimer’s’ remain untested for this easy to treat deficiency?
How many newly diagnosed dementia patients have been taking metformin, or acid suppressants such as Omeprazole?
How many patients live in total confusion when all they lack is the ability to absorb vitamin B12?
How many stroke victims struggling physically and mentally because it never occurred to the clinicians to test for low B12?
How many students unable to complete their studies?
How many lives lost through suicide?
How many careers ruined?
How many lost livelihoods?
How many families broken?
How much money wasted on psychiatric drugs when a vital nutrient is the solution?
How many undiagnosed prisoners are ‘detained at Her Majesty’s pleasure’ for actions and behaviour induced by low B12?
How many patients hospitalised with eating disorders remain undiagnosed with B12 deficiency?
How many patients tested but by clinicians who fail to understand that the B12 serum test is inaccurate?
How many patients rattle with numerous antidepressants given in mega doses due to their reduced efficacy in B12 deficient patients?
The information below is taken from the ‘Fundamental Statistics on Mental Health 2007’  

All these statements and statistics have a potential relationship to B12 deficiency and we can only assume that these figures are perhaps even worse now…….

The Fundamental Facts 2007: The Latest Facts and Figures on Mental Health
http://www.mentalhealth.org.uk/content/assets/PDF/publications/fundamental_facts_2007.pdf?view=Standard

How many people experience mental health problems?
• The Office for National Statistics Psychiatric Morbidity report found that in any one year 1 in 4 British adults experience at least one mental disorder, and 1 in 6 experiences this at any given time.

• It is estimated that approximately 450 million people worldwide have a mental health problem.
• 1 in 4 families worldwide is likely to have at least one member with a behavioural or mental disorder.
• The World Health Organisation forecasts that by 2020 depression will be the second leading contributor to the global burden of disease.

 Suicide and history of using mental health services
• 42% of people who took their own lives in England and Wales were diagnosed with either a depressive illness or bi-polar disorder, and 20% had schizophrenia or a related disorder. 

Postnatal depression
• Post-natal depression, also known as post partum depression, is believed to affect between 8 and 15% of women. Post-natal depression is not the same as the ‘baby blues’ which are very common, but last only a few days.

Dementia
• Dementia affects 5% of people over the age of 65 and 20% of those over 80. About 700,000 people in the UK have dementia (1.2% of the population) at any one time.
• About 60% of dementia cases are caused by Alzheimer’s disease.
• About a fifth of cases of dementia are related to strokes or insufficient blood flow to the brain, these cases being known as vascular dementia.

Children and young people 
• The British Medical Association estimates that at any point in time up to 45,000 young people under the age of 16 are experiencing a severe mental health disorder, and approximately 1.1 million children under the age of 18 would benefit from specialist mental health services.


Older people 
• Depression affects 1 in 5 people over the age of 65 living in the community and 2 in 5 living in care homes. However, it is likely that only a small proportion of older people with depression are in contact with their GP or mental health services. 
• An estimated 70% of new cases of depression in older people are related to poor physical health.

The prison population
• 72% of male and 70% of female sentenced prisoners have at least one mental disorder and 1 in 5 prisoners has four major mental health disorders. 

People with poor physical health are at higher risk of experiencing common mental health problems, and people with mental health problems are more likely to have poor physical health. 
• Depression affects 27% of people with diabetes, 29% of people with hypertension, 31% of people who have had a stroke, 33% of cancer patients and 44% of people with HIV/AIDS.
• People who experience persistent pain are four times as likely to have an anxiety or depressive disorder as the general population.




Primary care
• Approximately 30% of all GP consultations are related to a mental health problem.
• On average, a person with severe mental health problems has 13 to 14 consultations per year with their GP.




Hospital provision
• The NHS spent about £575 million on acute psychiatric in-patient hospital care in 2005/06,188 about 68% of its budget for clinical mental health services.




Treatment and coping
• According to an online survey by the Mental Health Foundation, of those visiting their GP with depression, 60% were prescribed anti-depressants, 42% were offered counselling and 2% were offered exercise therapy. 




Medication

• In 2004, GPs wrote a total of 63.9 million drug prescriptions for mental health problems in England, representing 9.3% of the total prescription by volume.
• Approximately 2 million people of working age in Britain are currently taking psychiatric drugs, most prescribed by their GPs.




 

•••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••

Family doctors in England are to be paid £55 for each patient they diagnose with dementia, NHS bosses say.   (http://www.bbc.co.uk/news/health-29718618)

If we gave GP’s just £1 to test ALL mental health patients for B12 deficiency and then another £1 to treat that Patient properly the cost savings could be phenomenal, not just to the NHS but to society as a whole. If only 10% of all the above statistics were found to be B12 deficient it would have a profoundly positive impact on NHS resources.

If you or anyone you know suffers with a mental illness, please have look at this list which is just the neuropsychiatric portion of the common B12 deficiency symptoms. You may be surprised and relieved to find that B12 injections could be the answer to restoring your own or a loved ones health.

• Confusion/disorientation
• Psychosis
• Post natal depression
• Hallucinations
• Memory loss
• Delusion
• Depression
• Suicidal ideation
• Mania
• Anxiety
• Paranoia
• Irritability
• Apathy
• Personality changes
• Inappropriate sexual behaviour
• Violent/aggressive behaviour
• Schizophrenic symptoms
• Sleep disturbances
• Insomnia
• Changes in taste, smell, vision, and sensory/motor function which can be mistaken for psychiatric problems

For more information please visit  www.b12deficiency.info/b12-and-mental-health/

Every part of society is affected by mental illness, and every part of society is affected by B12 deficiency. Our health care professionals need to keep this in mind, from midwives, to paediatrician’s, oncologists to psychiatrists. All medical disciplines need to be made aware of the facts.

Even those psychiatric patients who are known to be B12 deficient may still remain very unwell due to the high level of under treatment for this condition. Just four injections per year are not enough to repair those damaged nerves. Far more B12 is needed for this important job.
Unfortunately your doctor may be resistant to your request for testing for B12 deficiency.

Over the past couple of years I have been met with the following statements, from GP’s and psychiatrists;

‘They have no symptoms so it would be a waste of NHS funds to test for low B12 ’.
‘B12 deficiency does not affect mental health’.
‘Tremors and tinnitus are not cause by low B12’
‘They already have a diagnosis of Alzheimer’s and poor mental health runs in the family’.

It appears that once you have a diagnosis of mental illness you may be effectively tidied away and forgotten about.

And if you don’t have a mental health diagnosis your doctor might be keener to find one for you,  than to give you the vitamin you desperately need.

I’ll leave you with the letter I was sent following my request for more B12 injections.

letter-1-14.08.28

 

 

‘Sally Pacholok’ – A film based on the true story of an ER nurse who takes on the medical establishment when she uncovers an epidemic of misdiagnosis.

It is with great pleasure that I post this Press release below for the film ‘Sally Pacholok’. The feature film, based on Sally’s life, has been entered to the Sundance Film Festival and will make its UK premiere in cinema’s next year.

Thanks to the drive and foresight of Director and Producer Elissa Leonard, ‘Sally Pacholok’ is set to to shine a bright light on B12 deficiency and change the current, limited understanding of the devastating effects of this condition.

Sally’s name will be firmly cemented into the minds of the public and healthcare professionals alike, and will be made synonymous with vitamin B12 deficiency. The impact of this film will play an important role in helping to save even more lives.

Elissa’s earlier documentary, ‘Diagnosing and treating B12 deficiency’, demonstrates exactly how dire the situation can be for B12 deficient patients. The hard hitting image of a paediatrician who is near death, clad only in a nappy, is one which stays with the viewer for a very long time. He was seriously B12 deficient but was misdiagnosed with a rare neurological disease.   https://www.youtube.com/watch?v=BvEizypoyO0

Thank goodness Sally Pacholok has the passion and generosity required to work tirelessly to educate both health professionals and the public about this life threatening neurological condition.  Her ability to impart clear concise information both in person, and in the written word, (Could it Be B12? An Epidemic of Misdiagnosis – co authored with her husband Dr Jeffrey Stuart), has already saved many lives around the world. Could It Be B12? has been translated into Dutch and Slovenian, and has recently been published in India.

If you think you may be B12 deficient please visit: http://www.b12deficiency.info/what-to-do-next/

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please also consider joining Pat Kornic’s life saving support group

Press release below;

Leonard Spends Summer Making Dramatic Feature

Elissa Leonard produced and directed a dramatic feature film in May and spent the summer in post production.  The film is a 90-minute whistle-blower/romance written by Elissa Leonard and Patrick Prentice.  Sally Pacholok is based on the true story of an ER nurse who takes on the medical establishment when she uncovers an epidemic of misdiagnosis.  (Think Erin Brockovitch about healthcare.)  Elissa bought the life story rights to Sally Pacholok in 2012.

Annet Mahendru and Elissa Leonard

Annet Mahendru plays the title role of nurse Sally Pacholok.  Ms. Mahendru is a break out star on The Americans on FX, where she plays sultry Soviet spy Nina Sergeevna.    Andrew Ballard plays Dr. Jeff Stuart, the real life husband of Sally Pacholok.

With the exception of Annet Mahendru, cast and crew were from the Baltimore and DC areas.  The local SAG casting was done by Pat Moran and Associates.  Jeremy Morrison was the line producer and editor.  Nick Gardner was the director of photography, Dave Cross was the AD, Alex Jennings was the location sound mixer,  Angela Ratliff was the production designer, Julie Bent was the costume designer, and Pickles Kinion was lead hair and makeup.  Paige Gold was the production’s lawyer and Judy Walder the accountant.  Charlie Barnett wrote the film score and Studio Unknown did the sound design.

The film was shot in 19 days in the MD/DC area and you can see more of it here.  Expect to see a Power of the Purse announcement soon!

Please stop treating vitamin B12 deficiency as the poor relation to pernicious anaemia, this discrimination can seriously harm patients!

Autoimmune pernicious anaemia (PA) is just one of many causes but it’s clear that many doctors consider it to be the only serious cause of B12 deficiency and therefore the only one worth treating with B12 injections. This is due to lack of education on this subject which for most, is usually lumped in with anaemia. It is important to note that anaemia (macrocytosis) is not always present in B12 deficient patients.

In fact ALL causes of this debilitating condition require correct and adequate treatment and it is ALWAYS SERIOUS if it remains undiagnosed and untreated. Remember this condition attacks the central and peripheral nervous system, all body systems and all ages, not just elderly women. B12 is vital for the production of red blood cells and for DNA synthesis.

It seems the majority of doctors – worldwide, have only really learnt about PA and limited information at that. This means that they can neglect and under treat seriously B12 deficient patients. Up to 60% of patients who fail to achieve the correct diagnosis of PA due to the inaccurate diagnostic tests (gastric intrinsic factor antibodies & parietal cell antibodies), may be given an extremely poor deal along with those of us who do not have PA but are B12 deficient due to other causes.

The widespread use of Metformin and Omeprazole to name just two drugs, which stop absorption of B12 from food, cause untold damage. In the case of the diabetic drug Metformin, a doctor may confuse the tingling and numbness in fingers and toes caused by B12 deficiency with diabetic neuropathy, thereby potentially condemning the patient to serious and permanent nerve damage.

Neither of these drugs (and many others) fully warn the user, or the prescriber, on the ‘Patient information leaflet’ (PIL) of prolonged usage causing B12 deficiency.

Most patients with B12 deficiency will require B12 injections FOR LIFE, whether they have; coeliac disease, have had a gastric bypass, atrophic gastritis, Crohn’s disease, genetic mutations, advanced liver disease they all need injections and NOT the low dose cyanocobalamin oral tablets which doctors with lack of knowledge prescribe. Please note there are many more causes of this condition.

There are however some causes of B12 deficiency which CAN be temporary;

• Helicobacter Pylori – Provided this bacterial infection has been short-term and that
H-pylori lesions have not damaged the wall of the stomach or duodenum the patient can recover from this deficiency. If damage has occurred then B12 injections will be required for life.

• Parasites, such as fish tapeworms, or Giardia lamblia – ONLY IF these infestations are correctly diagnosed and effectively eradicated B12 deficiency can be corrected with appropriate treatment. Unfortunately parasitic infestations are hard to confirm as the diagnostic tests for these are also prone to flaws and frequently miss ‘host’ patients who would otherwise be able to absorb B12 from their diet.

Patients using stomach acid lowering drugs (H2 Blockers, PPI’s and antacids) have a secondary problem alongside a resulting B12 deficiency; a greater vulnerability to parasites which can unfortunately lurk undetected for years. These patients may have a very poor chance of naturally ridding themselves of these invaders who interfere with normal B12 absorption and compete for any B12 present in the diet. A healthy level of stomach acid is required to kill off these parasites.

Many B12 deficient patients, whatever the cause, are discriminated against and treated as second class citizens every day, in treatment terms, but a doctor who does not understand the myriad of causes of this condition could cause serious harm by assuming oral tablets will be absorbed and correct a deficiency.

If Type 1 and Type 2 diabetes patients were treated with the same level of discrimination, there would be uproar. Imagine doctors only allowing type 1 patients insulin but sending all type 2 patients off to simply look at a pig?

If you are a doctor who has learned only about PA and your patient does not test positive for IFA or PCA then you must still treat this patient properly whilst exploring other causes, and remember they may have a parasite that tests can’t detect.

•  If you can’t find the cause please remember this is not the fault of the patient

•  Treat their symptoms, and don’t assume it is ‘all in their mind’

•  Give them loading doses (6 injections over two weeks)

•  And if they have NEUROLOGICAL symptoms REMEMBER to continue their loading doses until their symptoms STOP IMPROVING, as per NICE and BNF Guidelines.

The difficulties with vitamin B12.
We discuss the management of patients who present with neurological manifestations of vitamin B12 deficiency; highlighting the fact that parenteral replacement is needed in such cases, even if the serum vitamin B12 level appears to be normal.
http://www.ncbi.nlm.nih.gov/m/pubmed/27009308/?i=5&from=b12

http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

Information on PA Tests – http://www.b12deficiency.info/assets/pat-kornic-testing-f.pdf

http://www.b12deficiency.info/what-are-the-causes/

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

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please sign and share our petition;

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

An obvious history of neglect – please help us to buy injectible B12 OTC, many doctors cannot or will not help us!

‘Somataform autonomic dysfunction in the form of neurosis’ or longstanding B12 deficiency?

Below you will see this patient’s medical history is clearly affected by B12 deficiency and yet over 30 years on, still NO ONE will listen and treat her accordingly.

You will see that from an early age (4 years) there are clear signs of B12 deficiency which sadly elude each clinician the patient comes into contact with – instead of vital B12 treatment this patient was subject to repeated consultant appointments, repeated accusations of hypochondria, desperate under treatment and over medication of drugs. Weigh all this up against ampoules of B12 costing just 55p –  the cost is phenomenal not just in life terms to the patient and her family –  but also the cost to the NHS.

If all our doctors left medical school with a full grounding in the very basics of Vitamins, minerals and enzymes then this enormous waste of NHS funds demonstrated here could be largely avoided.

The first red flags of B12 deficiency in the summary of notes are that the patient suffered;
• Faecal soiling
• Constipation
• Behavioural concerns

The treatment the patient received was;
• Lactulose
• Referral to a paediatrician
• Referral to educational psychologists

What the patient required was – to be tested for B12, folate and ferritin and then appropriate supplementation.

At age 22 the patient presented with;
• Palpitations
• Dizziness
• SOB (Shortness of Breath)
• Sweating
• Nausea

The treatment received was;
• Detailed cardiological investigations
• 24h tape and Echocardiogram
• Beta blockers – The clinician’s findings were – ‘No abnormalities detected’
• Referral to a psychiatrist
• Offered appointments to consider SSRI’s – The clinician’s findings were – ‘somataform autonomic dysfunction in the form of cardiac neurosis’

What the patient required was, to be tested for B12, folate and ferritin and then given appropriate supplementation.
The doctor summarising the notes states that ‘The issues regarding her B12 started around 2000’ Finally the patient is tested for the real problem.
• A ‘routine’ blood test noted a raised MCV of 102
• B12 level was recorded at 160
• A few months later these tests were repeated
• MCV recorded at 103
• B12 at 211 ‘slightly low’

Instead of appropriate treatment for low B12 the patient is;
Referred to a cardiologist to ask an opinion on palpitations and this led to a referral to a consultant haematologist
This clinician notes the low B12 and a strong family history of autoimmune disease, sadly this CONSULTANT haematologist ’suspected that the B12 issue was nothing significant; however he repeated the B12 and measured intrinsic factor and parietal cell antibodies…’
When these results came back they were reported ‘FBC was normal, the MCV was only 94 and vitamin B12 was normal at 500. NO mention of intrinsic factor antibodies and parietal cell antibodies.
During pregnancy over a year later the patient was seen in an Obstetric Haematology clinic and the conclusion was that there was ‘no evidence of pernicious anaemia’ despite tests earlier in the year recording the following levels;
• HB 12.3
• MCV 110
• B12 – 192

Note that there is still no folate or ferritin mentioned here.

The patient at this point was discharged from the haematology clinic but was ‘started on vitamin b12 injections with a label of pernicious anaemia, although this was never proven’.

We readers at this point think the patient and her growing baby might at last have the chance after all these years of neglect to be treated correctly,  but as is very common for a B12 deficient patient there is NO COMMON SENSE in the vicinity!

What happens next is that two consultants get their heads together – they ask again for intrinsic factor and parietal cell antibodies to be tested. These results are recorded as ‘normal’ and ‘the vitamin B12 injections are stopped’. Couldn’t you just put your head in your hands and cry? These people are paid vast amounts of money to save lives but they do great harm to B12 deficient patients time and time again!

This poor patient was then retested for B12 another year later and found to have a B12 level of 137, this time someone lets the patient have B12 injections for 3 years, not enough B12 mind, but enough to keep her existing. Low folate is finally mentioned here now but it appears the GP is completely ignorant of the problems associated with folate deficiency too. The summary states that the GP is reluctant to treat with folic acid because of ‘precipitating neuropathy’.  It seems that not one clinician up to now, has given ‘two hoots’ about the neurological damage occurring due to the continual negligence concerning this patients OBVIOUS B12 deficiency induced neurological symptoms.

The notes summary show that the patient is fully aware of the problem her B12 deficiency causes, she rightly asks for loading doses to be given since she has neurological symptoms and knows that this is what the NICE and BNF guidelines dictate.  The way this patient is written about is appalling, at best she is an irritant at worst she is a hypochondriac who requires a mental health diagnosis.

The GP states that since joining the practice the patient has been;
• Seen by a rheumatologist
• Seen by ‘the’ psychiatrists
• Has had advice from haematologists
• Seen by endocrinologist
• Seen a couple of times by neurologists

The GP further states that ALL investigations have been NORMAL the GP goes on – ‘In conclusion I concur with the haematologist that pernicious anaemia has never been proven ……..and that he is inclined to believe the psychiatrist who diagnosed her as having somataform autonomic dysfunction in the form of neurosis. However, at this time I do not think it is just cardiac neurosis I think it is more generalise neurosis.’  The GP continues to be even more patronising in stating ‘I will await the full complement of investigations by the Endocrinologist and the neurologist before taking any further action. It might well be that she will need to be re directed to the psychiatrist …………She is very fixated on vitamin B12 being the cause of all her problems.’

Funny that, the patient is right, she knows that B12 deficiency is indeed the cause of her problems.

If we look at the evidence – this patient has presented with a mass of B12 deficiency and folate deficiency symptoms from a very young age, she has a ’strong’ family history of autoimmune conditions and she has had low serum B12 results and high MCV’s.  It really is very simple if you look in the right place for something and you LISTEN to your patient.

It is very unwise for clinicians to become fixated with inaccurate blood test results which are continually reported as ‘Normal’ despite being miles away from NORMAL. The fact is that there are many causes for B12 deficiency, pernicious anaemia is just one cause. This deficiency is VERY SERIOUS and requires exactly the same treatment whatever the cause!  It is clearly a good bet that pernicious anaemia is the cause in this patient’s case due to the family history of autoimmunity,  just about all the clinicians involved in her care prefer to think it is all in her mind.  This sort of neglect is not an isolated case and just goes to prove how important it is for UK patients to be allowed to buy B12 over the counter in order to be in charge of their own healing.

These clinicians have spent so long trying to prove something which is very difficult to prove in many patients due to the unreliability of diagnostic tests that it has meant that the patient has suffered and continues to suffer. Writing patients off as mentally ill,  when as a clinician you are failing to understand B12 deficiency and it’s affects, is a sign of a very poorly educated doctor.

Doctors please make sure you rule out B12 deficiency FIRST to save your patients from permanent neurological damage and our NHS a fortune!

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

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Pat Kornic’s excellent information on blood tests.

http://www.b12deficiency.info/assets/pat-kornic-testing-f.pdf

Please sign and share our petitions

https://www.change.org/p/dr-margaret-chan-who-niall-dickson-gmc-make-the-study-of-nutritional-deficiencies-comprehensive-and-compulsory-for-our-doctors-in-10-years-of-training-our-doctors-may-never-study-key-information

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

 

Summary of notes