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.

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

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

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

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

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

Myths are learnt or picked up during their careers;

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

That the symptoms experienced are psychosomatic

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

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

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

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

This is all incorrect.

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

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

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

Specialist letter (2)

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

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

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

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

 

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

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

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

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

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

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

By working together we can make a difference.

Best wishes Tracey

www.b12deficiency.info

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

Twitter – @B12info

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

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

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

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

 

B12 deficiency at the heart of the matter

This little fella spent a long lime in hospital as a child following a diagnosis of Perthes disease (Legg-Calvé-Perthes disease).  Perthes is a childhood hip disorder caused by a disruption of blood flow to the ball of the hip joint.

By the time he was 30 years old he had suffered his first heart attack.

He died aged 37 following his third.

Born 1937 - Died 1973

 Born 1937 – Died 1973

 

Just prior to his first heart attack he experienced intense jaw pain whilst digging the garden and his face drained of colour. In between the 2nd and 3rd attacks he experienced flu-like symptoms but no chest pain and none of the other classic symptoms associated with heart attack. These details were a surprise to me and may be to you too.

This handsome young man was my dad and I inherited many things from him including his hair, a love of woolly jumpers and furniture making skills. (I don’t make a habit of keeping model aeroplanes under my bed though).

Amongst those interesting traits, I also inherited a clotting disorder; Factor V Leiden (FVL) and a myriad of genetic polymorphisms many of which are connected to B12 and folate methylation. (MTHFR, MTRR, MTR,CBS, and BHMT, to name a few).

No one knew why my dad had heart attacks and died so young and it has long remained a mystery, apart from his limp left over from Perthes disease, he appeared to be a fit and healthy young man.

I learned that I had FVL when I was trying to conceive and found that Perthes’ disease also has a connection to FVL. (see refs below).

With the help of genetic testing and the unravelling of my own medical history since being diagnosed as B12 deficient, there are now clear indications of  my dad’s underlying B12 and folate methylation problems.

These coupled with an undiagnosed clotting disorder could have contributed to – or could perhaps be the cause of his death? I wouldn’t mind betting that he had a sky-high homocysteine level but it’s doubtful that testing for this would have been on any radar and even today it’s tricky (if not impossible) to persuade a GP to test.

High homocysteine is known to be strong risk factor for cardiovascular disease, it is a an amino acid which rises to a toxic level in patients with low, B12, B6 and B9 (folate).  If a high homocysteine level is present and the patient also has FVL then research shows there is an even greater risk of Cardiovascular problems.

I was thankful that the GP I saw upon diagnosis of my B12 deficiency seemed to understand the problems associated with FVL and low B12 and I was reassuringly told -‘We’ll have to look after you’. Sadly this statement was quickly forgotten and the silly games regarding strict rationing of life giving B12 injections began.

I contacted many cardiologists to invite them to the conference we held in May but there was a total lack of interest. They receive millions of pounds in research grants but they don’t appear to want to look at the basics. It is a crying shame they didn’t hear Sally Pacholok and Malcolm Kendrick speak, but when their research money comes from pharmaceutical companies I expect they feel their hands are tied.

On health questionnaires we are often asked if we have a history of certain conditions, it seems that with a shrug of the GP’s shoulders, you must understand that you may succumb to heart attack, Alzheimer’s, or bipolar if they are prevalent conditions in your family (they are in mine). That you just have to take it on the chin and await what comes your way.

Many of us who read and research B12 deficiency, join up the dots early. We know that these conditions and many more can all be related to low B12 and that if we are given vital B12 injections at the frequency we need then we can live healthily and happily. We may also feel that the outcome for many of our loved ones might have been different had the full knowledge of B12 deficiency been available to the clinicians in charge of their care.

We want our doctors to discover and understand this too so we send them journals, advise them to read ‘Could it be B12?’ We lay the facts out in black and white, but we are often ignored, ridiculed and neglected. We understand that this action of trying to educate is irritating to doctors but what else can we do?

We are fighting for our lives whilst we wait for the medical community to catch up.

To see who is at risk of B12 deficiency, please click here http://www.b12deficiency.info/who-is-at-risk/ 

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

Please sign and share this petition, let’s get it over 10,000 signatures; https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

Ann Intern Med. 1997 Nov 15;127(10):895-903.
Factor V Leiden mutation and the risks for thromboembolic disease: a clinical perspective.
Price DT1, Ridker PM.
http://www.ncbi.nlm.nih.gov/pubmed/9382368
J Orthop Res. 2014 Jan;32(1):1-7. doi: 10.1002/jor.22473. Epub 2013 Aug 27.
Meta-analysis of hypercoagulability genetic polymorphisms in Perthes disease.
Woratanarat P1, Thaveeratitharm C, Woratanarat T, Angsanuntsukh C, Attia J, Thakkinstian A.
http://www.ncbi.nlm.nih.gov/pubmed/23983171
J Bone Joint Surg Am. 2004 Dec;86-A(12):2642-7.
Legg-Calve-Perthes disease and thrombophilia.
Balasa VV1, Gruppo RA, Glueck CJ, Wang P, Roy DR, Wall EJ, Mehlman CT, Crawford AH.
http://www.ncbi.nlm.nih.gov/pubmed/15590848
Acta Orthop Belg. 2007 Oct;73(5):612-7.
Thrombophilia and Legg-Calvé-Perthes disease: is it a causative factor and does it affect the severity of the disease?
Moens P1, Defoort K, Vancampenhout A, Peerlinck K, Fabry G.
http://www.ncbi.nlm.nih.gov/pubmed/18019917
J Pediatr Orthop. 2007 Oct-Nov;27(7):834-7.
Legg-Calve-Perthes disease, venous and arterial thrombi, and the factor V Leiden mutation in a four-generation kindred.
Glueck CJ1, Tracy T, Wang P.
http://www.ncbi.nlm.nih.gov/pubmed/17878795
Thromb J. 2014 Dec 16;12(1):30. doi: 10.1186/s12959-014-0030-0. eCollection 2014.
Severe hyperhomocysteinemia due to cystathionine β-synthase deficiency, and Factor V Leiden mutation in a patient with recurrent venous thrombosis.
Awan Z1, Aljenedil S2, Rosenblatt DS3, Cusson J4, Gilfix BM2, Genest J5.
http://www.ncbi.nlm.nih.gov/pubmed/25516723
Clin Chem Lab Med. 2003 Oct;41(10):1357-62.
The risk of venous thromboembolism associated with the factor V Leiden mutation and low B-vitamin status.
Obeid R1, Hakki T, Jouma M, Herrmann W.
http://www.ncbi.nlm.nih.gov/pubmed/14580166
J Med Assoc Thai. 2000 May;83(5):536-42.
Association between serum homocysteine, vitamin B12, folate and Thai coronary artery disease patients.
Leowattana W1, Mahanonda N, Bhuripunyo K, Pokum S.
http://www.ncbi.nlm.nih.gov/pubmed/10863900
Mini Rev Med Chem. 2012 Sep 1;12(10):997-1006.
Role of polymorphisms in factor V (FV Leiden), prothrombin, plasminogen activator inhibitor type-1 (PAI-1), methylenetetrahydrofolate reductase (MTHFR) and cystathionine β-synthase (CBS) genes as risk factors for thrombophilias.
Miranda-Vilela AL1.
http://www.ncbi.nlm.nih.gov/pubmed/22512572

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?

 

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