Have you been told to shut up about B12 deficiency?

Something happens to people who discover they are B12 deficient, it seems that an internal switch has been flicked and it leaves you with an uncontrollable urge to tell everyone you know and even people you don’t know about B12 deficiency.

Sometimes this has a positive outcome, sometimes what you say falls on deaf ears and sometimes expletives are involved. You may even experience stonewalling from you doctor.

Your B12 spotting radar becomes highly attuned and when you see a child with a few grey hairs or someone mentions they have fibromyalgia you feel compelled to explain about B12 to random strangers.

People outside our shared experience don’t understand the seemingly obsessive and bizarre behaviour they are confronted with.

They think that your focus in every living moment is infused with B12 deficiency. They hear B12 deficiency blah blah B12 blah blah blah B12 blah blah……

Over the years I have driven my family and many of my friends (who I felt could be B12 deficient) completely bonkers to the point where they ridiculed rather than listened.

They switched off internally and in panic, this made me ramp it up even more.  To see the symptoms, know the family history and not say anything, feels like walking by a person dying in the street and not helping at all.

This situation is hard to take, especially when it’s someone you love who is ignoring your concern and you are simply asking them at the very least, to have B12 deficiency ruled out.

The thing is that not everyone is confident about asking for anything from their GP, most people wouldn’t dream of questioning a doctor or suggesting something to them, they might feel rude and disrespectful – and after all, shouldn’t the doctor know best?

Even though we might think we’re discerning and can spot a mile off where we think B12 deficiency is occurring, our friends and family think we think it’s everywhere and everyone has it, even the next door neighbours budgie.

We know that B12 deficiency is very common and due to a lack of education and commonly misdiagnosed, so it’s natural that you will sound like you think everyone has it.

I want to make the point that I don’t think everyone has B12 deficiency at all and that I’m fully aware of its shared symptoms with other common conditions, but I can’t help but say when I see a situation where I feel it should be confirmed or ruled out.

We were sat in traffic the other day and I saw a super market lorry go by it’s sides featuring an ad with a smiling model. I could see her swollen tongue, it’s sides were indented just like mine gets when I need my injection . So naturally, I want to find her and tell her to get checked .

A friend of mine who is type 1 diabetic and a solicitor, was struggling at work through total exhaustion, she also had numbness and tingling in her hands and feet which the GP had of course told her this was due to diabetic neuropathy. (Why wouldn’t he? He’s never been fully trained in B12 deficiency). I nagged her to get tested. I knew she wanted a family and I couldn’t bear the potential that her fertility might be affected.

I was so happy that once her results were in, the Practice rang and asked her to go urgently for her B12 injections.

My grandma had a diagnosis of PA but my mum, who to me had a multitude of symptoms, was attributing those she recognised she  had, to pre-existing conditions. This is of course completely natural but very frustrating for those who recognise themselves in the one they are trying to help.

Breathing difficulties can be put down to asthma, COPD etc,

Back pain to wear and tear,

Incontinence to pregnancy,

Depression to work or family situations,

Tinnitus to loud music or noisy work environments

IBS to stress  – I could go on and on, and of course these can all be factors – but, what if they all improved with the right frequency of B12 injections?

Very often it’s quite clear that undiagnosed B12 deficient patients don’t recognise their own symptoms, it’s those around them who see that they are irritable, apathetic, depressed, and it’s when we are so poorly that we don’t want to be told we might have a ‘condition’. Certainly not one that requires injections.

The person you are trying to help might feel picked on or pressured to do something that they simply can’t tackle and they may feel totally out of their depth in discussing this alien subject confidently with a doctor.

They may get angry when you mention B12, they want you to stop badgering them and they may well decide that the doctor must know best.

I suggest you keep your B12 radar on but perhaps only say “I think you should have your B12 checked” just twice and then leave it.

If you can.

It will be very hard.

You will feel like you want to explode.

You will want to shout from the top of your lungs.

I’m finally learning that sometimes less is more, although I do feel as though I’m fit to burst each time I’m confronted with somebody who has a tremor, mania, stroke etc and has not had B12 deficiency either confirmed or ruled out or who is only receiving three monthly injections it still gets me – really gets me, and I ramp it up again. I’m sorry, I can’t help it.

What is astounding to the newly diagnosed and correctly treated, is the incredible flowering of their personalities, the clearness of their minds, the lifting of depression and an all round improvement in their well being. Their renewed ability to move more easily and have stamina where they thought it had gone for good and it’s only then, when we sigh with relief that the nagging – (even though it’s taken umpteen years), can stop because finally your loved one is safe B12 wise.

I have never managed to mention B12 just twice yet – but I am working on it.

The message is never give up, keep your B12 radar on but use your judgement on how far you can push it with your friends and family. At some point (and it may be years in the future) they will be grateful for your persistence.

So really this post is an apology to anyone out there who has wanted to gag me, but it’s also a message to everyone like me who does this – that we want everyone we’ve driven to distraction, to know that all the nagging comes from a place of love and care.

It’s also a thank you to Damian, who has never once told me to shut about B12 deficiency and helps this cause immensely.

And for all those who can get their loved ones to read this post – they may want your help in getting to the place where you are.

Wishing you all the very best.

Tracey x

 

Sally Pacholok mentions this phenomena in Could it be B12? An Epidemic of Misdiagnosis

Pat Kornic’s open letter may help to share with your families too.

A huge thank you to Dr Marjorie Ghisoni, who gets what I do and why I do it! Read here.

If you think you may be B12 deficient PLEASE DO NOT supplement before testing. Please see this page and use it as your crash course!

 

70th Anniversary of the NHS. North Wales RCN fly the flag for B12 deficiency once more

On Tuesday this week I spoke in scorching North Wales about B12 deficiency to a group of nurses from different disciplines who attended an RCN Event which celebrated 70 years of the NHS.

The hope is that they will be able to take the information gained and make a difference to the patients under their care.

Those present at the event, some who were diagnosed with B12 deficiency, totally understood the situation that many patients face. Nurses are always shocked that they haven’t received any training on this very common condition.


Tracey witty  & Sandra Robinson-Clark

Nurses are the ones who administer injections, hear the complaints from patients who can’t cope on the restricted three monthly regime and who are best placed to report back to the GP’s what the reality of the situation is for a patient who does not fit into the the ‘one size fits all’ treatment regime.

And it’s very clear that many nurses struggle in the same way that patients do in communicating their experience of B12 deficiency (either personally or professionally) effectively with doctors they work with.


RCN members and Kate Parry, Dr Marjorie Ghisoni, Sandra Robinson – Clark 

One nurse told me that when she asked if a patient who was exhausted could have her injection earlier than 3 monthly, the reply was ‘No, it’s all in her head’. This attitude is not uncommon and even though this nurse could see the need for more frequent B12 for her patient, the door was slammed shut. This situation is ridiculous and harmful and desperately frustrating for both nurse and patient.

The reference range for North Wales is set too low at 150ng/l so consequently many deficient patients will be missed. Point 4 on this page will help you to see how harmful it can be to ignore the clinical picture and base treatment solely upon serum results.

Of course not every symptom is due to B12 deficiency but our nurses can see the benefit of being educated about this very common and commonly misdiagnosed condition. They can see that considerable cost savings can be made by screening those at risk and by giving B12 injections based on individual requirements rather than the bizarre idea that each patient’s need is the same.

I posted the following on facebook on the 3rd of July;

This week the NHS is 70 years old.

If we can help to stop the misdiagnosis of vitamin B12 deficiency, the savings for the NHS and for society as a whole would be phenomenal.

Too many patients remain mentally and physically ill and unable to work.

Image may contain: 7 people, text

 

So far it has been shared 608 times.

My hope is that maybe some of our doctors see this post and take action to make sure that their  ‘at risk’ patients have this deficiency ruled out prior to using expensive and invasive procedures that may not be required.

Thanks again to Dr Marjorie Ghisoni and the nurses of NorthWales RCN for their commitment to the cause!

If you and your team require training on B12 deficiency please contact me here
I’d be very happy to help.
Best wishes

Tracey

 

The North Wales Branch of The Royal College of Nursing leads the way!

On October the 2nd 2017 the first North Wales RCN CPD Conference, included B12 deficiency thanks to
Dr Marjorie Ghisoni.

This fantastic CPD Conference offered a range of inspiring talks for the nurses in attendance.

I was honoured to be speaking on a subject I’m so passionate about and just a stones throw from my first school.


Dr Marjorie Ghisoni, Kate Parry, Tracey Witty, Susie Griffiths.

During my presentation – ‘How often is B12 deficiency missed?‘ I used case studies and documents which detailed the many issues B12 deficient patients face, including the limitations and low reference ranges of the serum B12 test and the harmful, restricted UK treatment regime. Explaining that severe neurological and psychiatric symptoms of B12 deficiency very often precede anaemia and the misconception that only patients with a confirmed diagnosis of pernicious anaemia need B12 injections.

It was important to make the point that all cases of B12 deficiency, whatever the cause, are serious and require correct treatment. Unfortunately letters like the one above are regularly sent out to patients to stop vital treatment with a lack of knowledge of the harm they will cause to the recipient.

It was crucial to me that delegates were given tools to help identify B12 deficiency in their patients. The presentation helped to give the nurses an understanding of how to advocate for their patients who were diagnosed but under treated and for screening for those they think may be at risk of B12 deficiency.

To finish off the morning, Susie Griffiths then spoke about her personal experience of B12 deficiency and it’s effect on her family.

If you’d like more information on the education of B12 deficiency, please contact me.

Afternoon Workshop

Most of the discussion in the afternoon workshop was centred around the shock these nurses felt that this vital information was missed from their training and that of most clinicians.

What they learned meant that there was a realisation that so many of the patients they work with are at huge risk of B12 deficiency, due not only to their poor mental health, but also due to the wide use of metformin in this group of patients.

It was a surprise to many that the reference range in North wales is amongst the lowest at 150 ng/L and that ranges all over the UK differ. They left knowing that this complex condition is simple and easy to treat and could clearly see why lack of education and current practice leads to common misdiagnoses.

These nurses, who are passionate about their patients well being, will take this newly acquired information into practice and the patients under their care will directly benefit. The RCN North Wales Branch is proud to be leading the way!

A few evaluations from the day;

Must learn more about this subject. Extremely interesting, very knowledgeable speaker who is obviously passionate about raising awareness of B12 deficiency. I had a lack of knowledge before this session, it has encouraged me to research this topic.

Would be good to present to a multidisciplinary forum including GPs and junior doctors.

I found your session absolutely fascinating and I will visit the website to further my understanding. I had no idea how serious B12 deficiency was, so much of what you explained/shared resonated with me.  Thank you for sharing your experience with us all.

So informative, I will be discussing this at our team meeting including our consultants – looking forward to looking at the website.

Inspirational and thought provoking and will consider in my work.

 

Another opportunity to raise awareness

In the evening the film ‘Sally Pacholok’ was screened for the villagers of Rhosneigr, Anglesey. If you haven’t seen this film yet it offers a great opportunity to be educated. Please follow use this link to watch.

Bangor University.

The following day Dr Marjorie Ghisoni had arranged for the second and third year Mental Health Nursing Students at Bangor University to be educated about B12 deficiency.  These students will now be able to apply this knowledge to their clinical practice.

From the questions taken afterwards, it was clear just how many of their lives were already effected by ignorance of the condition and the resulting under treatment of B12 deficiency. For so many, the new information provided a huge missing part of a jigsaw. It was heartening to hear that so many planned to further study B12 deficiency in their research projects.

The emails I received within hours of the talks are testament to the fact that if you give people the right information and tools they need, they can achieve a diagnosis and correct treatment. There’s now a whole new band of people badgering their colleagues, friends and family about B12 deficiency and this really is something to celebrate!

The hits on the website and the signatures on the OTC petition show just how inspired they were to make a difference.

It was an honour to be part of helping RCN Members in North Wales Nurses and our future Mental Health Nurses to take the lead in education of B12 deficiency.

Heartfelt thanks to Dr Marjorie Ghisoni for recognising the great need for this training and for making this happen!

Perhaps you need comprehensive training on B12 Deficiency and how it affects patients, or are looking for speakers at your event? If so please get in touch via; tracey@b12deficiency.info

Best wishes

Tracey
www.B12deficiency.info

Refs;

2015 Vitamin B12 Deficiency: An Important Reversible Co-Morbidity in Neuropsychiatric Manifestations
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4341306/

2015 Vitamin B12 deficiency: an important reversible co-morbidity in neuropsychiatric manifestations.
https://www.ncbi.nlm.nih.gov/pubmed/25722508

2009. Malignant catatonia in a patient with bipolar disorder, B12 deficiency, and neuroleptic malignant syndrome: one cause or three?
http://www.ncbi.nlm.nih.gov/m/pubmed/19820558/?i=1&from=b12%20AND%20catatonia

2009 Psychotic disorder and extrapyramidal symptoms associated with vitamin B12 and folate deficiency.(B12 deficiency-psychotic disorder, extrapyramidal symptoms in a 12-year-old boy)
http://www.ncbi.nlm.nih.gov/m/pubmed/19095695/?i=2&from=b12%20AND%20catatonia

2012. Psychotic disorder, hypertension and seizures associated with vitamin B12 deficiency: a case report.(“…..vitamin B(12) level should be checked in patients who do not have an obvious cause for psychosis, seizures or hypertension.”)
http://www.ncbi.nlm.nih.gov/m/pubmed/22027500/?i=2&from=B12%20psychosis%20AND%20%22blood%20was%20normal%22

2013. Association between vitamin b12 levels and melancholic depressive symptoms: a Finnish population-based study.(“The vitamin B12 level was associated with melancholic DS but not with non-melancholic DS.)
http://www.ncbi.nlm.nih.gov/pubmed/23705786

2013 Vitamin B12 deficiency presenting as an acute confusional state: a case report and review of literature. (With anaemia)(“Total resolution of the psychiatric symptoms occurred following parenteral vitamin B12 replacement therapy.”)
http://www.ncbi.nlm.nih.gov/m/pubmed/24250331/?i=1&from=b12%20and%20delirium

2013 Polyglandular autoimmune syndrome disguised as mental illness.(“The diagnosis of her endocrinopathies were likely delayed for many years due to the psychiatric disorder….”)
http://www.ncbi.nlm.nih.gov/pubmed/23632176

2013 Delirium as a result of vitamin B12 deficiency in a vegetarian female patient. (“The neuropsychiatric symptoms may be concurrent or precede the other symptoms.”)
http://www.ncbi.nlm.nih.gov/pubmed/23859997

2013 Cobalamin deficiency: clinical picture and radiological findings. (“Neuropsychiatric symptoms may precede hematologic signs”)http://www.ncbi.nlm.nih.gov/pubmed/24248213

2013 Decreased whole-blood global DNA methylation is related to serum hormones in anorexia nervosa adolescents.
http://www.ncbi.nlm.nih.gov/pubmed/24286295

2013 Vitamin B12 supplementation in treating major depressive disorder: a randomized controlled trial.
http://www.ncbi.nlm.nih.gov/pubmed/24339839

2013 Vitamin B12 deficiency presenting as an acute confusional state: a case report and review of literature.
http://www.ncbi.nlm.nih.gov/pubmed/24250331

2014 The neurology of folic acid deficiency.

(“In both deficiency states [b12/folate] there is often dissociation between the neuropsychiatric and the hematologic complications.”)
http://www.ncbi.nlm.nih.gov/pubmed/24365361

2016 Long-term Metformin Use and Vitamin B12 Deficiency in the Diabetes Prevention Program Outcomes Study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4880159/

2012 Metformin associated B12 deficiency.
https://www.ncbi.nlm.nih.gov/pubmed/22799121

2014 Vitamin B12 status in metformin treated patients: systematic review.
https://www.ncbi.nlm.nih.gov/pubmed/24959880

2016 Association between metformin and vitamin B12 deficiency in patients with type 2 diabetes: A systematic review and meta-analysis.
https://www.ncbi.nlm.nih.gov/pubmed/27130885

2016 Study of Vitamin B12 deficiency and peripheral neuropathy in metformin-treated early Type 2 diabetes mellitus.
https://www.ncbi.nlm.nih.gov/pubmed/27730072

2017 Developing a metformin prescribing tool for use in adults with mental illness to reduce medication-related weight gain and cardiovascular risk.
https://www.ncbi.nlm.nih.gov/pubmed/28747113

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 contact me here.

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/

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Many clinicians do not understand that;

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

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

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

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

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

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

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

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

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

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

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

Many thanks Tracey
www.b12deficiency.info

Emails below;

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

Dear Victoria

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

Best wishes
Tracey
www.b12deficiency.info

Health Select committee (Dr Sarah Wollaston)

<HEALTHCOM@parliament.uk> wrote:

Dear Tracey

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

Sorry I couldn’t help.

Best wishes

Victoria

Public Health England;

Hi

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

Regards

PHE Enquiries.

NHS England:

Dear Tracey

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

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

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

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

Dear Tracey

Thank you for contacting NICE.

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

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

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

Kind regards
Janet

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

BNF British National Formulary

Thank you for your email to BNF Publications.

Unfortunately we are unable to access our archives to check what evidence base was used to determine the 3 monthly dosage of hydroxocobalamin.

BNF content will be reviewed in line with the SPCs for future updates of the BNF.

Kind regards,

BNF Publications

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

http://www.b12deficiency.info/blog/2016/02/16/uk-b12-deficient-patients-paltry-3-monthly-maintenance-dose-of-b12-injections-is-based-on-cash-not-care/