#ProtectTheNHS #SaveLives and #MakeB12OTC

Making injectable B12 available over the counter from pharmacies will help save lives and will help to save money and time for the NHS.

You may have been denied your B12 injections due to COVID 19.

You may have failed to achieve a diagnosis due to your GP’s lack of knowledge of the condition.

You may be struggling with your symptoms due to under treatment of your deficiency.

You may be buying supplies from another country due to lack of treatment from your GP.

You may however, be in the enviable position of being allowed to collect your prescribed ampoule from a chemist and have been taught by your GP Practice to self inject.

Whichever bracket you fall into, can you help?

Do you want to be able to buy B12 OTC from your pharmacy?

Do you want to be able to treat yourself when you need to, rather than when restrictive guidance allows?

NOW is the time to act, to take your future into your own hands and try with me to make B12 OTC.

Our Struggling NHS

The NHS was in trouble long before COVID 19 arrived, it’s been under funded and under threat for a long time. We can all help to make a difference!

As stated in my previous blog there are estimated to be 5.7 million people with B12 deficiency in the UK, which is greater than the population of Finland!

The cost of mental health

Obviously B12 deficiency affects all body systems but lets just focus on mental health as an example.

Each GP appointment costs on average £30 say NHS England with 40% of appointments now involving mental health.

According to the Children’s Society UK there are said to be 16 million people, that’s 1 in 4 of us who will experience a mental health issue at some point in our lives and “the estimated costs of mental health problems in the UK are over £100 billion each year.”

Given that depression and anxiety are common first presenting symptoms of B12 deficiency then it could be that a considerable proportion of this figure may have this very common, easily and inexpensively treated, but commonly misdiagnosed condition.

The NHS state that an under estimate of 49,988 people were detained under the Mental Health Act in the UK between 2018-2019. The cost of an overnight stay on a psychiatric ward is said to be around £400, that’s almost £20,000,000 per night! but clearly this is not the whole financial picture.

The numbers

If just 1% of the 5.7 million people suffer with poor mental health caused by B12 deficiency and are sectioned and detained for 30 days under the Mental Health Act then the cost to the NHS is at the very least £684 million.

Of those thought to be B12 deficient in the UK, consider that if just 0.001% which is 57 people, each had a 30 day section, this would cost at the very least £684,000.

By comparison, if each of those 57 people were able to have a weekly B12 injection, even at the current cost to the NHS which is £8.80 per box of 5 ampoules, (£1.76 each), then each person’s cost per year would be only £91.52. So the cost for 57 people just £5,216.64.

I personally know 4 people who have had extended stays in mental health units averaging 4 months. Each of these people are B12 deficient, two were sectioned prior to diagnosis and two were sectioned when on restricted 3 monthly B12 injections. Three of them now self treat by buying online at a cost of around 60p per ampoule and are now doing really well. But how long will we be able to buy from online pharmacies with Brexit looming?

The cost of just one of these people hospitalised for 4 months reaches at least £48,000. These figures are of course a gross under estimate of the actual cost of a section under the Mental Health Act. At the very least the cost of the initial assessment and the time of 2 doctors required for detainment would need to be added. And in some cases there might be the cost of an ambulance and its team, the police, a social worker, a Crisis Team, and sometimes even a locksmith.

This of course can never reflect the impact of the emotional cost to the person detained, to their family and friends, their personal financial losses, their inability to work, potential loss of career, continued need for mental health support and the wider cost to society as whole.

Get involved!

Will you help?

This interactive tool from the Go Compare Bill of Health explained by Net Doctor allows you to add up your own cost and contribution to the NHS.

Consider calculating your B12 deficiency related costs and emailing any of the following with your B12 story and why you think injectable B12 should be made available over the counter, as it is in many countries in Europe and around the world:

The MHRA – engagement@mhra.gov.uk 
Your MP – Find your MP’s email address
The health minister – matt.hancock.mp@parliament.uk
The chief medical Advisor – c.whitty@nhs.net

You could also email marie.turner@dhsc.gov.uk. Marie wrote to me from;

The Department of Health and Social Care which in their words “helps people to live more independent, healthier lives for longer. It leads, shapes and funds health and social care in England, making sure people have the support, care and treatment they need, with the compassion, respect and dignity they deserve.”

Marie wrote;

“Ms Witty has corresponded with the Department on this subject over a number of years, and it may help if I summarise the advice we have provided to her over this time…….

Ms Witty believes there are fundamental problems with the diagnosis and treatment of vitamin B12 deficiency and pernicious anaemia. When vitamin B12 deficiency has caused anaemia, its diagnosis is not generally difficult, and the Department is not aware of significant problems of under-recognition.”

Obviously the age old problem of incorrectly assuming anaemia is always present with B12 deficiency rears it’s ugly head in this letter, but it’s the bold text I’d like you to write to Marie about because she needs to know that as we are fully aware, B12 deficiency is absolutely under recognised, under treated and continually misdiagnosed to the detriment of the NHS and society as a whole.

If you need a little help with your email please find sample text here.

Your voice matters!

Best wishes,

Tracey
www.b12deficiency.info

Please consider signing and sharing the B12 OTC Petition.
PLEASE NOTE make sure you don’t pay to sign, the money goes to Change.org and not to the cause you are supporting.

 

Now is the time to make B12 injections OTC, GET INVOLVED, email the MHRA with me!

What’s the kindest, simplest and cheapest way forward with B12 injections?

By removing barriers and making B12 injections available over the counter, that’s what. Simple.

Will you join me in emailing the MHRA (Medicines and Healthcare products Regulatory Agency – Gov.uk) so we can make this happen?

This one act would save lives, unburden the NHS, free up time in GP Practices and give a sense of peace and wellbeing to B12 deficient people across the UK.

After all dear regulators:
B12 is safe – B12 is inexpensive – B12 cannot be over dosed
We are adults, we can do this, we will be fine.

YOU CAN TRUST US!

Lets remove barriers and make B12 injections available OTC.

There are estimated to be 5.7 Million people in the UK with B12 deficiency, this is more than the entire population of Finland! Just imagine this many people being allowed to look after themselves, inject when needed and no longer feel a burden or irritant to the NHS. Just imagine the enormity of the potential financial savings, to the NHS and to society as a whole.

Our current situation
The COVID 19 pandemic has made a great many B12 patients feel that they don’t matter, that our health system doesn’t care. The recent letters received by many patients from their GP Practices show just how little so many health professionals understand about B12 deficiency. You can read more about the impact here along with bizarre changing advice for GP’s here and the patient comments at the foot of previous blogs.

The NHS 

Just about everybody in the UK knows of someone who works for the NHS and fully appreciates what they are up against. The very last thing anyone wants to do is make things worse but the situation some B12 deficient patients find themselves in currently is intolerable.

Some GP’s are helping patients to self inject,(as instructed by the BMA) but others are point blank refusing to engage at all with their anxious, depressed and desperate patients. Some feel they have no choice but to buy injectable B12 from abroad to keep themselves safe. This can’t be right can it?

After all ‘B12 clinics’ hairdressers and beauty therapists can get away with selling B12 injections at vastly inflated prices as a “health boost” or “health benefit’ when the real price of the ampoule is around 60 pence. Isn’t this odd when those of us who need it as a ‘medicine’ can’t buy it safely from pharmacy in the UK when many other nations can?

The MHRA are the organisation who hold all the cards, who can help us to make this happen, they are the people we are petitioning to make B12 available OTC.

The solution?  MAKE B12 injections available OTC. SIMPLE.

What we need is an urgent reclassification of B12 injections from Prescription-only medicine (POM) to pharmacy (P) medicine  this could and really should be easy, especially now when it seems these days, hard fast rules can change with a blink of an eye.

Years ago I wrote to all the Marketing Authorisation holders of hydroxocobalamin in the UK. I know that to reclassify our B12 injections from a POM to a P would usually require some form filling an exchange of funds and removal of the over riding one small, but obstructive statement in the current legislation, detailed below.

I was told; “Before a medicine can be reclassified from POM to P, Ministers must be satisfied that it would be safe to allow it to be supplied without a prescription. This means that it is a medicine which no longer meets any of the following criteria (Human Medicines Regulations 2012, regulation 62(3)).

This below is one of the criteria which applies in our case and what so far has stopped us from buying B12 injections OTC and self treating.

3 (d)is normally prescribed by a doctor or dentist for parenteral administration.

During the present crisis, wouldn’t now be a sensible time to cut through the red tape for the good of all and future-proof our access to this essential medicine?

You can find the Reclassification criteria here

and  HOW TO CHANGE THE LEGAL CLASSIFICATION OF A MEDICINE IN THE UK 

The underlying principle for classifying medicines is to maximise timely access to effective medicines while minimising the risk of harm from inappropriate use.

Making medicines available over-the-counter: the trade-offs (see page 4)

You see, our B12 injections are perfect for this!

 

More from the MHRA, they say:

Public and professional input
We are committed to widening access to medicines for the benefit of public health when it is safe to do so, and we are seeking input from patients and health professionals into the reclassification process. In addition to safety considerations, a key factor in the reclassification process is focusing on issues that matter to patients and health professionals. In order to understand those issues we run stakeholder groups and public consultations.

So here’s your call to action!

On this page the MHRA ask patients to get involved, inviting us to email them, they state:

Get involved!
“We would like to hear from patients with an interest in medicines and self-care, and community pharmacists, GPs, nurses and healthcare professionals who are currently working in a patient-facing role and who are willing to reflect on professional issues and attend a short meeting if required. If you are interested in taking part, please email engagement@mhra.gov.uk We will keep your details and contact you when a specific product is under discussion.”

So PLEASE do this! Ask them to help us to access what we need and to remove the barriers to our well being.

Please email them, engagement@mhra.gov.uk telling them why you want Hydroxocobalamin B12 injections reclassified.

You can cut and paste the sample text below by using this link:

Please urgently reclassify Hydroxocobalamin B12 injections from a POM to a P.

COVID 19 has meant cancelled or restricted injections for B12 deficient patients even though Hydroxocobalamin is listed as an essential medicine by WHO

Please see; https://www.b12deficiency.info/blog/2020/04/18/covid-19-is-leaving-b12-deficient-patients-unprotected-traumatised/

Please see this petition for all the many reasons why they should be made OTC:

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

Please remove the barriers to me being well. B12 is safe, I cannot overdose. I am an adult. Trust me as others in the world are trusted to self inject.

Yours sincerely ………………

 

Please get involved and make your voice count! Just think of the relief for all concerned if we could be in charge of our own healing.

Best wishes
Tracey

www.b12deficiency.info

If you haven’t signed yet please join the 90,567 people who have.

Incontinence in women, men & children

One of my symptoms of B12 deficiency was bladder incontinence, I had to keep going to the loo and there was no let up during the small hours either.

Thankfully this was one of my symptoms which corrected within the first weeks of regular B12 injections. Had I not realised I was B12 deficient, I may have believed it was due to my age or my shoe size or my eye colour and perhaps even ‘perfectly normal’. Some of us have difficulty seeking help for incontinence and see it as something to ‘put up with’ rather than something that could and should be treated.

Each time I see TV adverts for companies selling incontinence pads (or those weird ‘pretty??!’ crepe britches) showing young women stating that incontinence is ‘perfectly normal’ I’ll ask the telly, “what if it’s caused by B12 deficiency?”

Apparently 1 in 3 women experience bladder leaks, this is a massive number, some of whom might potentially be in need of B12 but may be unaware of low B12 being a cause.

This report from the BBC shows that the Royal College of Nursing (RCN) has issues with these adverts. They criticised TENA for not highlighting to mothers that treatment for the condition is available.

The RCN said: “Incontinence is known to be under reported due to the embarrassment experienced by women living with the condition.

Female incontinence
As you’ll see from the information on the NHS link below, there are a few causes for bladder incontinence related to the pelvic floor muscles, and although they do list ‘neurological conditions that affect the brain and spinal cord such as Parkinson’s disease or multiple sclerosis’  –  just think how helpful it would be if they could alert people by adding B12 deficiency to this list?

  • damage during childbirth – particularly if your baby was born vaginally, rather than by caesarean section
  • increased pressure on your tummy – for example, because you are pregnant or obese
  • damage to the bladder or nearby area during surgery – such as the removal of the womb (hysterectomy), or removal of the prostate gland
  • neurological conditions that affect the brain and spinal cord, such as Parkinson’s disease or multiple sclerosis
  • certain connective tissue disorders such as Ehlers-Danlos syndrome
  • certain medicines

Male Incontinence
Men also experience incontinence and it’s no surprise that they are even worse than women for talking about it or seeking help. Naturally there are some different causes listed for males (please see below), but would it be on the radar of the GP to test for B12 deficiency even if the subject of incontinence arose at an appointment?

  • chronic cough
  • constipation
  • obesity
  • bladder or urinary tract infections
  • an obstruction in the urinary tract
  • weak pelvic floor or bladder muscles
  • loss of sphincter strength
  • nerve damage
  • enlarged prostate
  • prostate cancer
  • neurological disorders, which can interfere with bladder control signals

Other lifestyle factors that may lead to UI include:

  • smoking
  • drinking
  • not being physically active

A tale of two nurses – threat and resolution

Nurse one
My lovely mum is a retired District Nurse. Her job involved giving B12 injections to her patients at 3 monthly intervals.

My grandma had a diagnosis of PA (pernicious anaemia) and mum would recognise when she was ready for her next injection.

Mum had zero formal training in B12 deficiency but was an excellent caring nurse who always put her patients first.

Nurse two
This nurse is a Practice Nurse who administers B12 injections.

She uses some of her time to diligently count up the days so that the patient can have their B12 injections at exactly 3 monthly intervals, not before, never before.

This nurse has also had zero formal training in B12 deficiency but has been told incorrect information about B12 deficiency.  She may also be an excellent nurse.

Resistance
My mum follows rules, she likes to get things right. When she saw fit she would challenge decisions made by doctors for the patients she knew and understood. 

My mum was not fully onboard with B12 deficiency at the beginning of my journey in early 2012. There was part of her that didn’t and couldn’t fully believe that B12 deficiency might be the root cause of our loved one’s symptoms. Her training was also, naturally, taking her down a different path.

She saw the resistance I was up against with doctors and worried about my challenging their knowledge because her belief lay somewhere else. Mum in part, sided with the professionals whilst trying to support me.

This was tough for mum. Her training as a nurse meant that in this situation she felt subordinate, that the doctors knew best, that their expertise should be respected and that if you’re told NO then you should accept that and shut up. I couldn’t accept the many NO’s I was getting.

If I’m told no and I know that that no is wrong, I will not give up trying to get a YES. This causes problems for those around me who are not on the same page.

It made people angry and it isolated me, that isolation is uncomfortable and lonely.

I have bored many of my family and friends to tears about B12 deficiency. I have been told to shut up so many times BUT when you know something is not right how can you not carry on?

In the beginning
I had identified what I thought were B12 deficiency symptoms in my mum right at the beginning but mum attributed all of them to other causes. I used to ask her “what if your breathing improved with B12?” With an exasperated sigh she would say “well it can’t can it, I’ve had this all my life”.

To shut me up she had a serum B12 test which came back ‘within range’. Her GP was willing to talk to me about this but at the time mum was still resistant so it didn’t happen.
I knew that both mum and I had methylation issues  and that dad had them too so mum’s attitude frustrated me a lot, an awful lot.

Light at the end of the tunnel?
Mum had met Sally Pacholok and saw her speak at our 2016 conference. From then she really understood B12 deficiency but still did not accept that it affected her too. Her GP said that her serum B12 result at 323ng/nl and a folate level of 3.3ng/nl was fine.

My mum’s symptoms, to me, were like flashing beacons growing bigger and bigger every day.

Spring 2018
This was a very difficult time for our family and I became increasingly worried about mum’s health and well being. She finally allowed me to get involved and I wrote to her GP on her behalf telling her of the family history, which included me, my siblings, aunt, uncle and grandma, at this point.

I detailed mum’s signs and symptoms which included ;
Breathlessness
Depression
Apathy
Bladder problems
Tachycardia
Exhaustion
Insomnia
Sluggish thyroid
Osteoporosis
Methylation issues.

I provided documents from  Point 4 of the What to do next page which show the inaccuracies of the serum B12 test and I also supplied mum’s methylation profile.

I asked if mum could have a trial of B12 injections and we waited.

Breakthrough
After a short phone conversation with mum the GP booked mum in for her loading doses.

I discovered early on that I cannot tolerate folic acid and chances were that since half my methylation issues came from mum she may not tolerate it either. Mum’s folate level was well below range, however the nurse told her there was no need to supplement this!
Mum started taking active folate. (Please be aware that this can be a tricky supplement for some and the general advice is always to start low and slow with it – especially if you are taking prescribed anti depressants or anti psychotics. Folinic acid (un methylated folate) may be a better alternative form for some).

Mum had her injections booked for the week ahead and she took folate every day with no ill effect. She said she felt no different at all for the first couple of days and then…….the change was incredible. Mum said she felt brighter. She looked brighter, she smiled. Starting the loading doses had such a profound effect, this flowering of my mum was an absolute delight to see.

She was able to breathe easier, she could garden in the extreme heat the UK had last year without having to take a break every ten minutes. The depression and apathy lifted. So many surprising things improved for mum, things she thought were totally unrelated. This was the mum I knew was in there but couldn’t get out.

Mum said she could never remember feeling so well. She began to ask for the journals and information I had sent to her in the past as she now had the impetus to learn from them.

“I wish I’d let you do this 6 years ago” said my mum.

I was beside myself hearing these words.

Having mum on board is fantastic, I am proud to say she is banging on the very same drum as me now!

I know mum is proud of the work I do but she didn’t fully understand it until she actually experienced the magic of feeling so well once you have the right level of the vital nutrients you’re lacking.



Incorrect treatment
After loading doses the GP asked to see mum, who was primed to make sure that the GP understood that mum was neurologically affected and would need to stay on the loading dose frequency for as long as it took for symptoms to stop improving.
Mum called me to say that I’d be disappointed, that the GP said she’d see her in three months for her maintenance dose, but that she wanted to buy B12 from abroad and self treat as another family member does, because she did not want her health to deteriorate as she had never felt so well.

I was not disappointed in my mum. I understand the difficulty patients feel in trying to point their GP’s toward the correct treatment regime. I was however ecstatic that this time mum knew that the GP was incorrect and she wanted to keep herself well.

Ignorance and threat
I am very lucky, my GP prescribes my B12 weekly, many others are not in this situation and this needs to change. I want all of us to be treated as individuals by our GP’s and not have vital treatment restricted due to lack of education and restrictive guidance.

Mum bought her B12 ampoules safely and cheaply from an online pharmacy. She found that in the three months running up to her appointment with the nurse she was doing well on a weekly injection.

Twenty minutes before mum was due to have her B12 injection from the Practice, she was phoned by a nurse who informed her that the appointment had been cancelled as she had counted up and found that the booking was 3 days early! She also stated (incorrectly) that it was dangerous to have too much B12. The nurse told her it would have to be arranged for the following week and she hoped it wasn’t inconvenient.

By this time, my mum has found her voice. She stated that yes it was inconvenient but she would give herself her own injection and see her the next week.

This nurse, worried by what she’d been told, took that information to the GP and mum received the letter below:

Resolution and kindness
Following receipt of this letter mum asked if I would go to the appointment with her, and of course I agreed – however I felt that if we emailed first it could help not only mum, but others at the Practice too.

This is the text from the email mum sent:

A three week wait eventually resulted in the best out come possible…….

The GP called and thanked mum for her email and for the information telling mum;
“I want to provide your weekly B12 ampoules for you to manage at home so please come and collect your prescription from us.”

Thank you
Thank you to the nurse who prompted this action, her reporting of the issue yielded a great opportunity for learning and a brilliant outcome for mum.
Thank you to the GP who treats mum as an individual.
Thanks to all those GP’s who are now listening and who are changing the lives of those that they care for.
Thank you to my mum for finally letting me interfere.
And thank you to Damian who has been with me every step of the way.

Best wishes
Tracey
www.b12deficiency.info

Nice Guidelines

www.b12deficiency.info/signs-and-symptoms/

Methylation issues

If folic acid doesn’t suit you, there are alternatives; In the UK folinic acid could be prescribed by your GP but not methylfolate. Remember we are all different so what suits me, may not suit you.

A serum B12 level can’t tell you how a patient is feeling, only the patient can, but why is no one listening?

Is your doctor allowing you to sink or swim?

How are you feeling? Are your symptoms improving? Do you need more frequent B12 injections……? These questions are very rarely asked of B12 deficient patients regarding their treatment. Too many patients remain ‘seen’ but not heard. Never heard.

Why has the medical establishment become so averse to listening to B12 deficient patients?  To treating symptoms and to acknowledging this fundamental nutritional requirement?  Why are we not offered the same listening ear as those with other conditions might be?

The patient is ALWAYS the expert on how they are feeling, not some serum B12 level or any maintenance guidelines which bear no relationship to the patient experience.

lifeboy-b12

Loss of a great relationship  

Any visit to the doctors can be an ordeal. You may be feeling, vulnerable, tearful, in pain, stressed, anxious and not wanting to waste the doctor’s time. But, the incredibly healing benefit of just ten minutes of really being heard, experiencing kindness and compassion and having a plan of action, is profound. We leave knowing our doctor is trying to help us. That ten minutes being reassured and cared for creates a phenomenal level of trust.

B12 deficient patients, in many cases, experience a completely different relationship with their doctor when requesting an increased frequency of B12 injections, finding that a couple of weeks after their injection their debilitating symptoms are back with a vengeance.

The very same Doctor who helped them through rough times, cared for them through pregnancy or trauma can become distant, defensive, unfeeling and even angry.  It’s as if an invisible wall is built,  eye contact is limited, and communication is almost strangulated. The usual empathy may be replaced by flippant, incorrect comments about B12 being a placebo, that B12 deficiency is ‘over diagnosed’ that people want too much, get addicted to it and that there is no evidence to suggest that it actually makes a difference! 

There’s an inability on the part of some GP’s to demonstrate compassion or understanding for a patient who is struggling to function on three monthly injections. The current situation means that some patients are able to function for only 8 weeks out of 52.  Many GP’s are refusing to treat symptoms, whilst concern with B12 serum blood levels takes precedence over common sense. Ignoring how the patient feels can lead to feelings of confusion, anger, desperation, and fear. What are they supposed to do?

Patient’s who are in pain, exhausted and confused need more B12, not less – but this fact is not understood by those who should be caring for us.

This ‘new’ attitude from the GP may cause fractures in, or even a complete death of their previous good relationship. For those patients who feel they’ve upset their doctor by asking for more B12 or who fail to articulate what they need it may mean that they will try to struggle on alone. This is a shocking and intolerable situation for a patient who previously had an excellent relationship with someone they completely trusted to care for them.

What usually happens in the UK ….

In the main GPs prescribe loading doses (6 injections over two weeks) and then automatically place patients onto three monthly injection regime regardless of the severity of their symptoms. This is very often done without discussion with the patient – in fact without any kind of consultation whatsoever. It might be a nurse who delivers this information and who sticks rigidly to the exact date three months later for the next injection. It is not uncommon for patients who try to have their injection a couple of days early only to be turned away distraught.

This situation can leave the patient bewildered about why their inexpensive injections are rationed, knowing their lack can cause widespread, permanent damage. This condition is so simple and easy to treat but B12 is withheld due to lack of education.

Patients restricted to 3 monthly injections are commonly offered strong painkillers, Gabapentin, amitriptyline, and other antidepressants, all manner of symptom modifying drugs in place of the vitamin needed to repair their nerves.  There’s something seriously wrong when a GP insists on exploring dementia in a symptomatic patient in their 40’s, rather than treating a B12 level which is just within range.

Retesting serum levels

Once a patient is being treated with B12 injections, it does make sense to check the serum B12 level in the beginning to confirm that the patient is responding to treatment. If there is a good response then no further testing is required. Continual retesting of serum levels prior to an injection (and in some cases just a few days after) is a total waste of time and money and it’s clear that some GP’s are mistakenly using a ‘within range’ result as a reason to stop B12 injections.

The sole reliance on B12 serum levels to decide whether a patient is well or not is entirely illogical given that many patients with a B12 level up in the 1000’s may still be experiencing incredibly painful and debilitating symptoms. They may be suffering from a failing memory, an inability to walk, to stay awake and terrible anxiety.

A high serum B12 level post injection is not showing any toxicity, it is also no indication of the level of nerve repair but repeatedly patients are told:

‘your levels are too high’,
‘we need to stop your injections until they come back down’
‘you no longer need B12……..’

There is a genetic problem which is thankfully highlighted by the NHS – ‘functional B12 deficiency,’  it would be helpful if our GP’s were all made aware of this;

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

‘Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood. This can occur due to a problem known as functional vitamin B12 deficiency – where there is a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord’.

B12 is a water-soluble vitamin, the vast majority of the injection is excreted via the bowel and bladder within 24 hours. B12 has to be replaced frequently in order to aid recovery of the myelin sheath. Serum levels can remain high for up to four months, this does not mean there is an accessible reservoir of B12 sloshing around the body.

If your GP or nurse continually suggest retesting your B12 levels, ask why? And feel free to refuse unless there is any clinical need. You will be saving your blood and your time and that of your practice too.

• A very high serum B12 level without any supplementation obviously requires investigation and I often wonder if this is where our GP’s are getting mixed up?

Superior treatment for other conditions, a stark contrast 

If you are a diabetic patient, the overwhelming difference in the level of care is plain to see. You will be checked, monitored, consulted. You’ll have regular retinopathy and foot checks. You may be assigned a specialist diabetic nurse and you will be asked how you feel.

You will not have restricted medication, you will be taught and trusted to self inject, and you may even be sent on courses to learn about your condition.

In stark contrast, the majority of B12 deficient patients are discriminated against whilst requiring exactly the same care. All clinicians need to grasp the fact that B12 deficiency is a real and serious condition.

One size treatment cannot possibly fit all

As many of us know and feel keenly, four injections per year cannot correct the body’s starvation of B12, just as only four buckets of water a year wouldn’t help a tree in drought and only four breaths of air wouldn’t help a deep sea diver. One size cannot possibly fit all for many medical treatments.

Reports of widespread pain, poor memory, poor mental health, balance problems, deafening tinnitus, fatigue, and incontinence are totally ignored as if the patient is totally mistaken about the state of their own health. If they happen to have existing diagnoses of fibromyalgia, depression, CFS, diabetes (etc) or they’re menopausal or even a new mum – their symptoms may be attributed to these conditions instead of being recognised as under treatment of B12 deficiency.

B12 injections are safe, life saving, non-toxic and inexpensive. There is no clinical evidence for this restricted regime, it is entirely based upon cost saving audits.

Bizarre letters stop B12 treatment

You can see the situation which affects so many patients from this letter below. These letters which stop vital B12 treatment, are randomly sent out and are expected to be met with compliance despite the fact that without any solid evidence or consultation, it has been decided the patient can miraculously absorb and utilise B12.

tracey letter

The statement “Evidence has come to light that in many cases B12 injections are given too easily, or are inadvertently continued after the loading dose injections.” is ludicrous.

I hope that recipients of these letters ask to see the source of this ‘evidence’ and I wonder what it is. The idea that B12 injections are ‘given too easily’ is a bizarre comment given that so many patients probably feel that completing the Krypton Factor, running ten miles through quicksand whilst wearing high heels two sizes too small, might be an easier challenge than ‘qualifying’ for an essential vitamin injection.

There may be some odd formula for sending out these letters – there is no clue as to why this practice have decided the patients can now absorb B12, what test they used. Perhaps a mistaken reliance upon post injection serum B12 levels to determine that patients have enough B12 and are now ‘cured’ – perhaps even picking names out of a hat?

They state “we need to prove that people cannot absorb the carrier across the stomach membrane.”  The sentence itself doesn’t make sense. What is the ‘carrier’? Do they really believe that by simply telling the patient “You are one of a cohort of patients who have been tested and should be able to absorb B12” the job is done?  They are placing the onus on the patient to prove they can’t absorb B12 without any discussion whatsoever.

There seems to be a movement towards only treating patients who are confirmed to have pernicious anaemia, (this may be what this letter is about). This is totally ridiculous given the many causes for B12 deficiency. Each is serious and each requires treatment by injection unless the deficiency is of proven dietary lack. The reality is that the test for pernicious anaemia (Intrinsic Factor antibody) has low sensitivity resulting in many false negatives. This information escapes too many GP’s.

The sad fact is that some who receive these letters will believe what is written – or may not have the strength to fight for their health.

Deterioration caused by B12 deficiency is slow and insidious, it takes a while to repair the fatty coating of the nerves (myelin sheath). Six injections over two weeks cannot possibly reverse all the damage in every patient even though we all wish they could.

Me and millions of others would be ecstatic to find that suddenly we really could absorb B12 simply because we received a letter saying so – but this letter and all the others like it are complete poppycock, not to mention harmful. As usual in B12 deficiency, the PATIENT IS NEVER CONSULTED, everything is decided without their input.

Oral supplementation for patients who cannot absorb B12 from food would be a futile exercise. We urgently need our clinicians to understand that this can lead to permanent neurological damage, raising serum levels but allowing deterioration to continue.

This letter states that: “If you are taking folic acid then it’s important to take vitamin B supplement to prevent damage” the author is apparently ignorant of the harm that will follow without B12 injections.

The one sensible statement included in the letter is that vitamin B12 “is water soluble and therefore not dangerous to take in excess,” very refreshing.

It is vital that all primary care doctors, nurses ,midwives and specialists in all areas of medicine are educated about the seriousness of B12 deficiency and the fundamentals of nutrition.

If our doctors are unable to feel that they can take clinical responsibility for frequent B12 injections (even though this is what is stated in both BNF and NICE Guidelines) then it becomes even more urgent that UK patients are able to buy injectable B12 over the counter in order to look after their own health.

Isolation and hopelessness

There are many things that patients who are B12 deficient can’t understand about the way they are treated once they become diagnosed with vitamin B12 deficiency.

Of course some doctors do treat their patients correctly and fully support individualised treatment. For the rest, B12 is restricted and the battle for treatment begins in those who have the strength and/or the support of loved ones.

Some patients believe their GP is correct when told that too much B12 would be harmful.  Others feel forced to accept the situation because their partner or family member insists the GP must know best, finding themselves totally isolated and without hope.

Nobody wants to have to fight for health especially when they are on their knees, mentally and physically.

If you are a patient who needs more B12 and face the challenge of requesting this, taking somebody with you to the doctors for support can be invaluable. Just a squeeze of a hand and reassurance that you are not alone can make the world of difference when trying to communicate how you feel in pleading your case. Writing down what you need to say will help you to remember all your points. The NHS constitution may be a useful tool to help in accessing better treatment for UK readers.

The very least a patient can expect is to be listened to and taken seriously. Ensuring that this happens would make the job of the GP easier and their overall workload lighter, saving the NHS millions. It would be interesting to know just how many appointments are taken up by undiagnosed or under treated B12 deficient patients. Now there’s a research project worth carrying out.

Are you in a situation where you are not being heard and feel isolated? Please don’t give up, join this fantastic support group where you will find help from so many members in the same boat.

REMEMBER this is your life, your health and YOU MATTER. You are the expert on how YOU feel, no one else.

Are you a doctor reading this, do you know how we feel?

How would you cope with your job, family, home if for  only 44 weeks out of 52 you were unable to function? Can you give us your side of the story? Anonymously?

If you can, please email in confidence to tracey@b12deficiency.info.

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