B12 the Antidote – joining up the dots

We may be exposed to poisonous gases and chemical toxins to different degrees at some point in our lives, whether it be from air pollution, exhaust fumes, pesticides, cleaning products or from faulty or poorly fitted appliances within our homes or workplaces.  Flood, fire and warfare are all situations where potential exposure to toxic gases can occur.

However, B12 in the form of hydroxocobalamin is an excellent toxin scavenger, this means that if you are exposed your levels of B12 could be inactivated and depleted.

Could you be an unknowing victim? Do you have diagnosis of CFS, ME, fibromyalgia, depression, Alzheimer’s and have not had thorough screening for B12 deficiency?

Late last year I met Belinda Goldsmid, she and her family were chronically exposed to products of combustion, including carbon monoxide (CO). It was leaking into their home from a poorly installed and situated boiler flue. This had devastating health and social effects. Continual low level exposure can can lead to chronic ill-health, poor mental health and extremely debilitating symptoms.
Belinda is now experiencing phenomenal improvement of her previous debilitating symptoms with the use of B12 (hydroxocobalamin) injections. Following this, Belinda asked for my help in finding research papers documenting the use of B12 as a treatment for toxic exposure, including the silent killer carbon monoxide.

Maybe the origin or the exacerbation of your B12 deficiency can be traced back to toxic exposure?

For more information please see our new page, www.b12deficiency.info/b12-the-antidote

Belinda was helped by the charity CO Gas Safety, you can find more CO charities here.

If you think you might be B12 deficient the What to do next page is your starting point.

If you want to learn more about B12 direct from Sally Pacholok please see our Conference page

 

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.

Dennis Skinner MP for Bolsover has signed the B12 OTC petition!! Will your MP do the same?

B12-life-web
Just in case you don’t receive the update for the petition, see below;
After a call out to B12 deficient patients to sign and share this petition (https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?)to get us over the 10,000 signature threshold I am delighted that we have 11,341 supporters as I write this update.
Huge thanks to each and every one of you!
Your sharing of this petition does a fantastic job of raising awareness of B12 deficiency every day.
Steph Whiting, a B12 deficient patient struggling to access B12 injections, sent the petition link to her MP, Dennis Skinner. Dennis was completely unaware of this very common condition and the awful predicament of under treatment that UK patients face, so he signed to show his support.
I badger my local MP and MEP regularly, but more help is needed and if UK and international supporters could take the time to email or tweet we can really make a difference in moving this campaign forward!
May I suggest Tweeters use the following;
@DennisSkinnerMP has signed this injectable B12 OTC petition http://chn.ge/1phNgE6, will you? #B12 OTC petition
Please target at the very least, the MP’s listed below via Twitter. (Twitter names listed below for your convenience).
David Cameron – Prime Minister
Jeremy Hunt – Secretary of State for Health
Jeremy Corbyn – Leader of the Labour Party
Jane Ellison  – Parliamentary Under-Secretary (Department of Health)
Luciana Berger MP – Shadow Minister for (mental Health)
UK Tweeters, please add your local MP and MEP to this list too.
You can find your MP’s contact details by using this tool;
and your MEP contact details here;- http://www.europarl.org.uk/en/your-meps.html
@jeremy_hunt
@david_cameron
@jeremycorbyn
@janeellisonmp
@lucianaberger
Please consider emailing too – there is a template at the bottom if you wish to use it,  please add your own experience/reasons for asking for support. You may care for someone who is B12 deficient so this may need re wording for your particular situation.
UK supporters please contact all the above and your own MP and MEP
Please email;
Jeremy Hunt –
huntj@parliament.uk
Jeremy Corbyn –
corbynj@parliament.uk
Luciana Berger –
luciana.berger.mp@parliament.uk
Jane Ellison MP –
jane.ellison.mp@parliament.uk
David Cameron- sadly no direct email address exists publicly so there is a form to fill in here;   http://www.witneyconservatives.com/contact
UK supporters – Perhaps you could give your local MP a call too?
Lets not restrict this campaign though – tweet, email or call anyone you can think of who may help to spread the word and make this happen.
Celebrities are powerful so let’s try to get them on board too!
Finally, when you receive your email replies please consider forwarding to me at tracey@b12deficiency.info
Again, huge thanks to all 11,341 supporters – you are amazing!
Tracey witty
www.b12deficiency.info
EMAIL TEMPLATE
Dear *
Dennis Skinner MP, has signed this petition;
https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter? in support of UK B12 deficient patients who are unable to buy their life saving, Injectable vitamin B12 OTC. We cannot absorb B12 from food so injections are essential for life.
Most countries around the world allow their citizens to buy this essential, harmless injectable vitamin without prescription, from pharmacies.
Due to out dated NICE Guidelines and GP’s (and other health care professionals) lack of knowledge of B12 deficiency, many patients are restricted to just four B12 injections per year, even though the body needs B12 every day! This level of treatment is clearly nowhere near enough to maintain health and consequently many patients remain mentally ill, bed bound, cognitively impaired, and unable to work or look after their children.
Please sign and show us your support;
If you have the time to watch even the first 5 minutes of this film;
You will see just how devastating the effects of B12 deficiency can be. It is an easily treated, serious neurological condition but patients are very often dismissed, neglected and labelled hypochondriacs.
Just imagine the health care savings if you can help to make this happen.
For more information on this very common neurological condition please see www.b12deficiency.info
Yours sincerely

Understanding what it feels like to be B12 and folate deficient

Over the weekend I was ambushed by a sickness bug, I was in pain, exhausted and miserable with a screaming headache – however I knew it would pass and that I would be free of feeling like a rag doll in a matter of days.

It occurred to me that what I was experiencing would be just a tenth of what some B12 deficient patients suffer every day of their lives, particularly those who remain undiagnosed, misdiagnosed or indeed those who remain desperately under treated on the paltry 4 injections a year that they are allowed.

I consider myself incredibly lucky that my B12 and folate deficiency symptoms never caused me to experience chronic fatigue but there are thousands of people who live with this every day.

I have no children to look after, but can you imagine feeling like death and having to carry on and look after a family, hold down a job, function when it is almost impossible to breathe, think, walk or stay awake? Many struggle to hold onto their jobs and their families when they are not treated correctly.

When asked to describe how it felt to be B12 deficient a friend, Lynne Wood, described a scenario which perfectly illustrates this, she explained that if you were to tie a sack of spuds (potatoes) to the back of each leg, each arm and to the back of your head and then go about your working day it may come close to what she felt like. I am sure many will identify with this.

I heard an account of a GP being asked (in a social setting) if he gave B12 injections to patients who requested them earlier, his response – “It depends what they’re like”,  so he based medical judgement and treatment on whether or not the patient was to his liking rather than on the manifested pain and suffering. Surely this disgustingly sadistic approach is rare and the neglect B12 deficient patients face is usually as a result of ignorance.

What continues to floor me everyday is that thousands of B12 deficient patients are neglected and refused additional life saving B12 injections despite pleading for respite from their symptoms. I know of patients who are sent away for being even two days early for their quarterly injection, can you imagine this? What caring person in their right mind, would keep someone in pain and suffering when the treatment is so simple, cheap and effective?

This deeply ingrained ignorance which filters down from doctors to nurses creates a barbaric situation for patients.

A dog taken to the vets in such a terrible state might actually be put down – however we all know that a vet is taught far more about B12 deficiency than many of the doctors that B12 deficient patients encounter.

On a lighter note – although a little disturbing, someone wrote to tell me that the health food shop had run out of B12 supplements and so she was advised to take double the dose of B6……… Unbelievable!!

 

If you need an excellent support group please consider joining Pat Kornic’s group – https://www.facebook.com/groups/PAB12DSupportGroup/?fref=nf

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

If you want to be in charge of your own health please sign and share this petition – https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

 

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

 

 

B12-life-logo

Please make our life saving injectable vitamin B12 (hydroxocobalamin) available over the counter.

Please sign and share this petition as far and wide as possible wherever you are from. You will be helping to save lives.

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

 

Raising awareness – how YOU can help

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I could of course go on…… and on …………

Here are the symptoms of B12 deficiency

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

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

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

Vascular Problems
• Orthostatic hypotension / Postural hypotension

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

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

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

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

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

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

Raising awareness – How you can help

Please consider signing and sharing our petition – you will be helping to save lives
http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter