#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.

 

B12 cancelled. See you in six months…… if you make it

Some might say this title is dramatic, but those who are currently denied access to B12 injections, who are panicked to within an inch of their lives with coronavirus and who now have no essential vitamin B12 treatment, would probably feel it’s a completely reasonable statement.

Being expected to cope for months on end without your safe, cheap, effective and life saving injections would be like making someone climb up Mount Everest without any shoes or coat whilst carrying a donkey on their back.

I know of no other vital, life saving medicine that has been stopped during this crisis and I can’t imagine that any other group of people in the UK are being denied such an easy, quick treatment at this time.

 

 

A bleak 6 months ahead

This letter below, sent to a whole county might make the untrained eye think that it’s perfectly reasonable to stop B12 injections and give B12 tablets for six months….

Letters, emails, phone calls and texts like these are being received all over the UK, I have seen them from Lancashire, Herefordshire, Gloucestershire, Hertfordshire, Cheshire, Leicestershire, Northumberland, Tyne & Wear, Flintshire, Cardiff, Essex, Wolverhampton, Cornwall, North Yorks,  west Lothian, Midlothian, Aberdeenshire.

Here’s the text from the first paragraph;

We are writing to you on behalf of your GP in regards to your B12 injections. As from Monday, the 30th of March we will no longer be giving B12 injections to patients therefore all our future appointments have been cancelled. This is as a result of coronavirus and our aim is to protect you as well as our staff. We will restart the injections once the current measures are suspended.

Do you see the sneaky stuff in there?

What is ridiculous to B12 deficient patients is this totally incorrect and bizarre idea that we can access stores of B12. We can’t and that’s why we’re B12 deficient and why we need regular replacement, this simple fact needs to be understood.

The last bullet point is the real kicker. The uneducated clinicians will say, “you don’t have Intrinsic factor antibodies (IFA) so you don’t have pernicious anaemia (PA) and so you will stay on tablets because we decided you can now miraculously absorb B12 from food!” This ludicrous concept crops up frequently (I have blogged about it before here.) It needs repeating so often – PA is just one of many causes and they are all serious and need correct treatment.

It seems they’re going to try and say you don’t need injections by testing your serum levels after they’ve given B12 oral tablets that simply can’t replace the benefit of B12 injections. They’ll do this by saying “your serum B12 levels are high now so you must be well” whilst ignoring the fact that you’re a depressed, exhausted, broken heap on the floor.

Most of us are in a state of panic at the moment, but imagine having anxiety levels through the roof and then being told you can’t have your life-saving medication for six months because someone ignorant of your condition has decided that YOU don’t matter. Not for six months anyway.

Some people were already on their knees when their injection was cancelled because the last one they had was in December, how exactly are they supposed to function? Some of these people are key workers expected to ‘soldier on’ until they collapse, some are parents thrust into 24/7 child care whilst trying to hold onto a job or their businesses by a thread.

Bay Medical Group (For Happier Healthier people!) have added this clumsy and unhelpful Q&A to their website entitled B12 Switch to oral medication.

Tidal wave of future problems

It’s impossible to expect there to be no mental or physical health casualties among those with B12 deficiency if the only provision for them is a tablet that won’t work to heal nerves or reduce symptoms but will raise serum levels.

Many of us feel like we’re currently living inside the most bizarre film set of all time, but it is also feels a bit like a ridiculous black comedy for some with B12 deficiency.

Many of our GP’s are unaware of the mental health aspect of B12 deficiency despite depression being one of the most common symptoms.

Without B12 injections we can’t function, we can’t remember, can’t walk, can’t feel happy, can’t think, can’t hear, can’t speak properly, can’t live fully.

How are the people with returning psychosis supposed to cope? How are their loved ones expected to manage this severe symptom which is an every day reality in untreated B12 deficiency in either their child, sibling, mother or father?

We’re all told to look after our mental health during this period but these incomprehensible restrictions are making things so much worse than they need to be.

Even people without previous mental health problems are having them surface during this period of isolation. The mental health charity Sane are warning that the Coronavirus could lead to a mental health epidemic.

Cutting essential, cheap, effective treatment for thousands of people through a lack of understanding of a common condition is beyond foolish. In fact it’s a time bomb and there will be guaranteed casualties amongst B12 deficient patients who only take oral tablets during this period.

The WHO

The World Health Organisation states the following in their document Mental health and psychosocial considerations during the COVID-19 outbreak 

The following directives are appropriate for those with B12 deficiency; –

Messages for team leaders or managers in health facilities:-

16. Manage urgent mental health and neurological complaints (e.g. delirium, psychosis, severe anxiety or depression) within emergency or general healthcare facilities. Appropriate trained and qualified staff may need to be deployed to these locations when time permits, and the capacity of general healthcare staff capacity to provide mental health and psychosocial support should be increased (see the mhGAP Humanitarian Intervention Guide).

17. Ensure availability of essential, generic psychotropic medications at all levels of health care. People living with long-term mental health conditions or epileptic seizures will need uninterrupted access to their medication, and sudden discontinuation should be avoided.

Messages for older adults, people with underlying health conditions and their carers

22. Older adults, especially in isolation and those with cognitive decline/dementia, may become more anxious, angry, stressed, agitated and withdrawn during the outbreak or while in quarantine. Provide practical and emotional support through informal networks (families) and health professionals.

24. If you have an underlying health condition, make sure to have access to any medications that you are currently using. Activate your social contacts to provide you with assistance, if needed.

People who can only keep their psychosis and depression caused by B12 deficiency at bay with B12 injections should surely be considered here?

B12 (hydroxocobalamin is listed as an essential medicine by WHO (see page 19 here) but it seems this is not understood by many GP’s.

Injection discrimination 

There are often comparisons made between insulin and B12 injections and whilst everybody understands that insulin is essential and required by each patient in different amounts some health professionals mistakenly think that B12 is a placebo, a frivolous want for lazy people with hypochondria and Munchausen’s Syndrome. They also think that we all need the same measly amount regardless of our symptoms and level of damage. B12 is as important to patients as insulin is to diabetics.

Our friends and family outside of the B12 world see our predicament as bizarre, they ask us the following questions about B12 injections: –

Are they life-saving YES

Is it expensive NO

Can you overdose NO

We can ask the same of questions about insulin: –

Is it life-saving YES 

Is it expensive YES

Can you overdose YES

Can you imagine the outrage if insulin were stopped for six months?

Methotrexate, heparin and insulin are all automatically given to patients to self inject at home, but all these are medications which need strict control, in contrast B12 injections (hydroxocobalamin) cannot be overdosed.

Immediate Solutions  

B12 is essential, if you are prescribed B12 injections then it means you cannot absorb B12 from food so oral tablets won’t work.

The British Journal of Haematology state:

“The use of high dose oral cyanocobalamin is licenced for use in several countries….however the efficacy and cost-effectiveness…is yet to be established.”

And I am stating:

Vital treatment should not be restricted or stopped.
We are not in a war.
There is no shortage of B12.

We of course appreciate that GP Practices are under huge pressure at the moment and that many are experiencing staff shortages but there is always a way around these problems.

Practices need to reinstate B12 injections for anyone who is well and can get to the surgery or prescribe B12 ampoules and sub cutaneous needles for people to collect from a pharmacy so that they, or someone close to them can give them their vital injection. (Sub cutaneous injections would be most sensible for patients to use and are the route most who self inject choose, myself included.)

We need our doctors to get behind this movement so that they and the Practice nurses can be freed up from giving injections to those who can inject themselves.

For the sake of the GP’s and nurses who are too busy to teach you to self inject, here are some helpful NHS guides below;

Self injection with sub cut;

https://www.qegateshead.nhs.uk/sites/default/files/users/user53/gynaeoncology/IL426%20Subcutaneous%20Self%20injection%20for%20anti-coagulation%20treatment.pdf

Link for how to break an ampoule and load syringe;

http://www.bristol.ac.uk/media-library/sites/vetscience/documents/clinical-skills/How%20to%20Open%20a%20Glass%20Vial.pdf

We need to be concerned about those people who are unable to function due to lack of B12 but who daren’t insist on treatment, those who quietly accept that their essential injection has been stopped. Our GP’s must be vigilant here and check on those at risk because they don’t want to, or feel they shouldn’t make a fuss.

Petition – Doctors, help us to get off your backs!

I’ve had numerous emails and comments detailing particular struggles with the denied access to B12 from all ages and the one solution which could make this situation better now and in the future is to make injectable B12 available over the counter from pharmacies. This would remove an enormous financial and time burden from the NHS, and GP Practices and would allow the panic to, at least partially, subside in hundreds of thousands of people in the UK.

If your doctor is on our side (I know that some are) please ask them to support this petition and share it with their colleagues.

Please consider joining the 89,000 + kind people who have already signed and shared our Petition.
(Please note: Every time you sign a change.org petition you will be asked to ‘Chip in’ money, but be warned, this money goes directly to the very wealthy change.org company and not a penny goes to the cause you might support.)

If we can get The MHRA and other NHS agencies to help us at a time where barriers are being removed then the tidal wave which is already gathering speed could be slowed.

Removing barriers

On Twitter, there’s evidence that some doctors are celebrating the fact that during this crisis, barriers that made their patient’s and their lives difficult have been removed in minutes, funding hasn’t been blocked and they can do parts of their job more easily…..

Martin Marshall (@MartinRCGP) Tweeted:

“2 emails from friends overnight saying the same thing, one a GP and local NHS leader and the other a clinical academic. They say they’ve achieve more progress in their work in the last 6 days than in the previous 6 months. People are making things happen and barriers are removed.”

Well isn’t now the time for B12 patients to get a piece of the action and have their huge barrier to good health removed?

We are living in unprecedented times but whilst all of us are in this mess together and whilst our backs are against the wall we need to see the great opportunity for change before us. Perhaps now there’s a real chance that we can get our B12 injections made available over the counter and bring us into line with other countries around the world so that we in the UK aren’t left behind.

Good Practice

It’s important for me to acknowledge that there are brilliant Practices in the UK that know their patients need their B12 injections and are either still administering them or are prescribing ampoules and equipment to make it possible for patients to self treat. (My Practice is one of these and I am so grateful, thank you Doctor B!) Anyone under the care of these good Practices will be eternally grateful for their understanding and care at this time. Many would give up their first born to be treated by you!

Take care and stay safe,

Tracey x
www.b12deficiency.info

 

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.

Pernicious anaemia (PA) or B12 deficiency – which is worse?

Patients with a diagnosis of PA (pernicious anaemia) do not experience a more excruciating pain or a different kind of damage than someone who has a diagnosis of B12 deficiency due to another cause.

Both B12 deficiency and PA cause damage to the protective fatty coating (myelin) of the nerves. PA patients are often thought to have a ‘worse’ form of the condition but this is not true.

Diagnosis and treatment of B12 deficiency often proves to be a very difficult challenge for the patient but in some areas a diagnosis of PA (a positive IFAB test) can represent a ‘golden ticket’ to treatment, leaving others with identical symptoms, but no confirmed diagnosis of PA, without any treatment at all. It is important to note that “A negative Intrinsic Factor antibody result does not exclude the diagnosis of PA as only 60% of patients with PA will have this antibody”.

PA and B12 deficiency (unless it is caused purely by dietary lack) are caused due to an inability to absorb B12 from food and therefore B12 injections are required to bypass the stomach.

There would be uproar if our doctors only used plaster casts for a broken arms if the cause were a skiing accident whilst treating everyone else with a broken arm with a sticking plaster.  This scenario is what’s happening far too regularly with B12 deficiency and the situation is down to lack of education and correct, clear information about this condition.

This condition can have a devastating effect whatever the cause. If you choose a diet which avoids animal products then you should supplement with B12 in order to access this vital nutrient. Of course vegetarians and vegans might also be at risk due to a co existing cause so it is advisable to familiarise yourself with these in case they too apply to you.

You’ll see there are so many more causes to consider as well as PA;

  • Decreased stomach acid
  • Atrophic gastritis
  • Autoimmune pernicious anaemia
  • Helicobacter pylori
  • Gastrectomy, partial or complete
  • Gastric bypass surgery (weight loss)
  • Intestinal resection
  • Partial or complete ileectomy
  • Gastrointestinal neoplasms
  • Malnutrition
  • Eating disorders  – anorexia – bulimia
  • Inadequate diet
  • Vegetarianism / veganism
  • Malabsorption syndromes
  • Alcoholism
  • Crohn’s disease
  • Coeliac disease (gluten enteropathy)
  • Dipphyllobothrium infection
  • blind loop syndrome
  • diverticulosis
  • inflammatory bowel disease
  • small bowel overgrowth
  • tropical sprue
  • gastric irradiation
  • ileal irradiation (bladder,cervix, uterus,prostate)
  • Inborn errors of B12 metabolism
  • Transcobalamin II deficiency
  • Pancreatic exocrine insufficiency & Chronic pancreatitis
  • Imerslund Gräesbeck syndrome
  • Zollinger – Ellison Syndrome
  • Bacterial overgrowth (small bowel)
  • Fish tapeworm
  • Advanced liver disease

Drug induced causes – Please note; this list is not exhaustive

  • Antacids
  • Colchicine (treatment of gout)
  • H2 Blockers (Zantac, Tagamet, Pepcid)
  • Metformin – Diabetes drug (Glucophage)
  • PPI’s – Proton pump inhibitors (Omeprazole, Nexium, Prevacid, Protonix)
  • Nitrous oxide anaesthesia
  • Nitrous oxide recreational abuse (Laughing gas / Whippets / Hippy crack)
  • Mycifradin sulphate (Neomycin) antibiotic
  • Para aminosalicylates  antibiotic
  • Phenytoin (Dilantin) – anti-epileptic
  • Potassium chloride (K-Dur)
  • Cholestyramine (Questran)
  • Chemotherapy and radiation treatment

Increased demands

  • Chronic Hemoltic anaemia
  • Hyperthroidism
  • Multiple myeloma
  • Myelopproliferative disorders
  • Neoplasms
  • Pregnancy

Some patients may never find out the cause of their condition, this does not mean that they should be denied B12 injections which are, safe, inexpensive and the most efficient treatment for their deficiency.

Our doctors may only have learnt about pernicious anaemia and not the wider picture of B12 deficiency during their training. My own GP said his tuition on the subject lasted around half an hour. This partial information can lead to our GPs thinking that B12 deficient patients without a confirmed diagnosis of PA do not require treatment by injection. Some mistakenly believe that a patient can use oral 50mcg cyanocobalamin tablets to correct their deficiency despite an inability to absorb B12 from food. Obviously this ignorance can lead to serious consequences.

Please see below;

.

Even when the patient receiving the letter above reported that they do eat meat fish eggs and dairy they were still incorrectly told that they didn’t require further B12 injections.

Everybody with B12 deficiency is affected differently and has a different degree  of damage and severity of symptoms, and so an individual requirement and frequency of treatment. Often the missing link in treatment is proper communication with the patient. Listening to how their condition affects them rather than restricting treatment according to the ink on paper detailing blood results would have a profoundly positive effect.

Imagine how the advice celebrity GP, Dr Hilary gives, makes this patient feel?
He states that; if her blood levels are ok she ‘doesn’t need injections now’ but that her “long standing forgetfulness may not be reversible”. Oh dear.

Our GP’s training is incomplete, they have not been given all the information required to treat patients with B12 deficiency correctly. Consequently both them and us are being done a disservice.

Their education needs to include the simple fact that if a patient is B12 deficient and their diet includes animal products, then they will need injections for the best chance for nerves to heal – whatever the cause. (Surely it goes without saying that if someone choosing a vegan diet is seriously ill due to lack of B12 they they should not be denied the right to injections in order to facilitate a swift recovery).

I know that many reading this will state that very high dose sublingual tablets are as good as injections, but the fact is they don’t suit everyone, they are not available to everyone and your doctor may be unaware of their existence.

There is much written about 1000mcg oral cyanocobalamin being a good substitute for injections – that a patient will absorb 1% by passive diffusion. (Too low to chance?) However these journals focus on serum levels and not how the patient is feeling. Why limit the chance of recovery in this way when the injections work perfectly?

It would be helpful if patients were treated as individuals, as per their symptoms, rather than the idea that one cause of this condition is worse than another.

If you are a healthcare professional reading this, please see the homepage of the website for more information about the issues that face patients.

Best wishes

Tracey
 www.b12deficiency.info

Ref; Published: 15 March 2018 Authors:Wang H, Li L, Qin L, Song Y, Vidal-Alaball J, Liu T http://www.cochrane.org/CD004655/ENDOC_oral-vitamin-b12-compared-intramuscular-vitamin-b12-vitamin-b12-deficiency

P.s. Thank you to all who have signed and shared the OTC petition – we are at nearly 60,000 signatures! You are making a difference and I continue to work toward this goal.

Have you seen our B12 for Life pin?

 

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