Dying to breathe

Three weeks ago I thought I might be taking my last breath. I had a virus which coupled with whooping cough (that I caught back in April), meant that each breath I took felt like trying to push a train uphill, through a very, very tight tunnel.

Thankfully, excellent care from first responders Gina and Bob and paramedics Rachel and Dan saved me from hospital. I am now fully on the road to recovery.

This terrifying experience was relatively short lived but I know that for some with B12 deficiency the inability to breathe without real effort is part of everyday life. Those who are desperately under treated or are currently undiagnosed may struggle with these symptoms everyday.

The problem for many with presenting symptoms of B12 deficiency which include depression and anxiety may result in them being given a mental health diagnosis whilst their physical symptoms are disregarded.

B12, iron and magnesium deficiency can cause breathing problems but how often are these causes fully explored?

Mental Health diagnoses often equal invisibility for patients and a separation from other physical health disciplines, but the link between poor mental health and B12 deficiency was made over 100 years ago.

Unfortunately patients with poor mental health with undiagnosed B12 deficiency are often given higher and higher doses of antipsychotics and antidepressants but experience a lack of response and continued  deterioration.

Please see;
Does B12 Deficiency Lead to Lack of Treatment Response to Conventional Antidepressants?
Subjects with depression who do not respond to conventional antidepressants should be evaluated for nutritional factors.
At times, medical disorders may be mistaken for a primary psychiatric disturbance because of prominent and commonly associated psychiatric or behavioral manifestations. The lack of recognition of the underlying medical condition precludes optimal treatment even though the psychiatric treatment might be appropriate for the symptoms, often manifesting as inadequate response or psychotropic treatment resistance.1 Increasing severity of the underlying medical illness can also increase the risk of relapse in psychiatric disorders despite adequate psychotropic medication.2
Desperate Mental Health Patient
I became aware of this patient after seeing her post on social media.
She is currently being held under section 3 of the Mental Health Act. She has been in hospital since midsummer of this year. She has had an unsuccessful tribunal.
Her diagnoses include:
Depression
Anxiety
Depression with psychotic features
Schizoaffective disorder
Somatic symptom disorder
(Obviously there are a great many causes for poor mental health which include: B12, folate, and magnesium deficiency and thyroid problems.)
Drugs administered
Aripiprazole
Venlafaxine
Risperidone
Escitolpram
For the past three years this patient has experienced:
High blood pressure – (magnesium deficiency and hyperthyroidism?)
An inability to breathe without effort – (iron, magnesium and B12 deficiency?)
Tightening and choking around the throat – (an inability to swallow can also be caused by iron deficiency, magnesium deficiency and hyperthyroidism).
Can you imagine being sectioned, struggling for breath and struggling to swallow, but all those in charge of your care ignore requests for further investigation for the cause of your symptoms?
Not being heard, or ‘seen’ properly is shattering to anyone in hospital but if you are held under section 3 of the Mental Health Act you are literally at the mercy of somebody else. You cannot refuse treatment under this section.
This patient can’t call paramedics, can’t make herself properly heard and has been told that her physical symptoms are in her mind. But what if she has never been screened for nutritional deficiencies or hyperthyroidism despite presenting with symptoms?
What if she has been screened but the test results have not been fully understood due to the limitations of B12 and thyroid testing? Strict reliance on ‘normal’ lab reference ranges means so many people deteriorate without any treatment for the root cause of their symptoms.
Whilst psychosomatic symptoms (physical illness or other condition caused or aggravated by a mental factor such as internal conflict or stress) are a very real thing, physical causes for poor mental health should always be ruled out. If doctors haven’t received any training in the fundamentals of nutrition, then they aren’t exploring this as a cause. This situation needs to be rectified.
Have you been told your symptoms are psychosomatic?
Have you been injected with antipsychotics against your will?

Are you terrified that each breath you take might be your last?

This is what this patient is living through now.
We need those who are in charge of her care to take a serious look at information surrounding vitamin B12 and other nutrient deficiencies for her and others with mental health problems.
For those who follow my blog you may be aware that  in September Dr Marjorie Ghisoni facilitated my lecture on B12 deficiency for RCN members in North wales and for Mental Health Nursing students at Bangor University. What we need are more open minded clinicians like Marjorie who will make an enormous difference to their patients once armed with fundamental information which is currently missing from their training.
Please share this blog, you could make a difference to someones life.
Best wishes Tracey
If you are a health professional requiring training on B12 deficiency please contact me at tracey@b12deficiency.info for more information.
Are you aware that exposure to toxins such as carbon monoxide can cause B12 deficiency?
If you think you may be B12 deficient then please visit this page:
Please don’t supplement with oral B12 before testing, this could skew your results. 
If this blog post and my website has helped you please visit;

 

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 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.

Afternoon Workshop

Most of the discussion in the afternoon workshop was centred around the shock these nurses felt realising 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 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 if 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

Thanks to all who supported the B12 Pop Up Café!

Who doesn’t love a cuppa and a chat?

Years ago Sally Pacholok made B12 Awareness Day the 23rd of September and we marked the occasion in Leicestershire with a B12 Pop Up Café.

Getting together and sharing experiences makes such a difference to peoples lives. It is lovely to meet so many people and to be able to put faces to names.  We hope to do a similar event soon so I’ll keep you posted!

Thanks to BBC radio Leicester for helping to raise awareness of B12 deficiency and for promoting the B12 Café.

If you’d like to hear the interview with Martin Ballard please go to 39.30  using this link http://www.bbc.co.uk/programmes/p05f6tzg


Thanks to Ryan for hanging bunting and helping us to set up!


Thanks to all who supported the café and helped to make it such a fantastic event. A special thank you to Belinda and Kathleen who each travelled for hours from the very bottom and the very top of England to be with us in lovely Oaks in Charnwood!

Thanks to all who sampled and enjoyed the cakes…..


Thanks to Damian, my lovely husband for being an incredible support and expert tea maker, and to Jasper who lives on in the B12 awareness raising world!


Thanks to Hayley and mum who were with us right to the end …..

Thanks to Rose who tackled an enormous stack of washing up with a smile on her face!


A tidy village hall packed away and put to bed….

 

And a sunset as we leave, until the next time…….

Best wishes

Tracey xx

Are your vital B12 injections being stopped? FREE help options here….

If your treatment is being restricted or stopped altogether, hopefully there will be some help options for you here.

The Letters….
There are letters being sent out to patients, some of whom have received B12 treatment for donkey’s years, which announce that they will no longer receive their vital injections.

The incidence of this behaviour is increasing …..


This appears to be due to a cost saving exercise and largely happens without any prior consultation with individual patients to discuss their needs. (The cost of B12 is pennies but the time for nurses to give the injection appears to be the ‘saving’ here.)

Some practices are enclosing diet sheets for patients to learn how to make sure they are eating foods containing B12. Quite bizarre when these patients wouldn’t be deficient in the first place if they could absorb B12 from food.

The same old line about ‘too much B12 being harmful’ (which is complete rubbish) is often used in these letters and if the patient is unaware of the truth about B12 they might quietly comply with the harmful removal of their vital treatment.

Some letters state that the reason B12 injections are being stopped is “many patients are being over treated with this vitamin”. If this is the case in your letter, please ask them to provide you with this evidence.

Our clinicians need reminding that Pernicious anaemia (PA) is the very tip of a huge iceberg.

Some GP’s may incorrectly believe that only patients with a definite diagnosis of PA, those with a positive intrinsic factor antibody test, require treatment for life so seem to be using this as their treatment exclusion criteria.

The trouble is that the IFA test is not entirely reliable, it has a very low sensitivity and misses many that do have PA.

Obviously this ignores all those who require life long treatment due to other causes of B12 deficiency (of which there are many), thereby potentially causing great harm to the vast majority of their B12 deficient patients.

Cost saving?

These letters appear to be indiscriminate cost saving initiatives and are being sent out as individual practice directives and not that of the CCG (Clinical Commissioning Group).

You may know that each GP Practice is governed by a CCG and each CCG has a Medicines Optimisation Department – the role of this department is to “make sure that the right patients get the right choice of medicine at the right time”.

If you have received a letter stopping your vital lifelong treatment then why not find your CCG and talk to the Medicines Optimisation department about what is happening?

There are 211 CCG’s, find yours here.

You may find the  NHS Constitution of great help when discussing your lack of treatment.

This valuable document is for everyone and should be used in situations when your GP or your surgery is not making any sense regarding your treatment. I have added some parts of the text below but want to highlight the following sentence for you to bear in mind; 

“The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions.” 

_______________________________________________________________________

The NHS Constitution sets out your rights as a patient, and explains the commitments the NHS has made to providing you with a high quality service. Organisations providing NHS care must take account of the NHS Constitution when treating you, so you may find it helpful to refer to it if you are thinking about making a complaint.

This Constitution establishes the principles and values of the NHS in England. It sets out rights to which patients, public and staff are entitled, and pledges which the NHS is committed to achieve, together with responsibilities, which the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively. The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions. References in this document to the NHS and NHS services include local authority public health services, but references to NHS bodies do not include local authorities. Where there are differences of detail these are explained in the Handbook to the Constitution.

1. The NHS provides a comprehensive service, available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status. The service is designed to improve, prevent, diagnose and treat both physical and mental health problems with equal regard. It has a duty to each and every individual that it serves and must respect their human rights.
At the same time, it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population.

4. The patient will be at the heart of everything the NHS does. It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged

Improving lives. We strive to improve health and wellbeing and people’s experiences of the NHS. We cherish excellence and professionalism wherever we find it – in the everyday things that make people’s lives better as much as in clinical practice, service improvements and innovation. We recognise that all have a part to play in making ourselves, patients and our communities healthier.

Everyone counts. We maximise our resources for the benefit of the whole community, and make sure nobody is excluded, discriminated against or left behind. We accept that some people need more help, that difficult decisions have to be taken – and that when we waste resources we waste opportunities for others.

You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.

  • Quality of care and environment:
    You have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality.

_________________________________________________________________________

Patients with B12 deficiency are regularly discriminated against.

You can see that this powerful and useful document can be employed to protect both you and your treatment.

If your particular GP is unhelpful, could there be another in the practice who you could see instead?

It is important to understand that many of our clinicians receive NO TRAINING whatsoever in B12 deficiency. Some receive a little, but what they may be taught is not necessarily up to date – or their training focused solely on PA (pernicious anaemia) – and the frankly ridiculous notion that anyone without a definite diagnosis of this or the presence of anaemia does not require treatment.

It is not the fault of the trainee doctor or nurse that this vital education is missing – but countless patients have provided a valuable opportunity for CPD by providing information for those in qualified to be in charge of their care. Many times this is ignored.

When doctor’s don’t know best….

I know how difficult it is for patients to challenge their doctor regarding treatment, but if you, or someone you love is being desperately under treated for this vitamin deficiency then it is essential that you, or someone close to you, takes the bull by the horns and speaks up as firmly as possible.

I hope the NHS Constitution will help you to do this.

1. You have to ignore the idea that you are upsetting the doctor, or that you are insulting them by questioning poor decisions about your health and wellbeing.

2. You have to believe doctors are no different from you, they have just learnt different things, read different books and passed different exams and that is all.

3. You have all the expertise on you, how you feel and how your deficiency effects you. You have to not be shy about sharing this in the face of such ignorance.

Ask yourself how you would challenge a joiner who mistakenly removes joists that make your roof safe?

Or a plumber who’s poor workmanship means that carbon monoxide is leaking into your bedroom?

You have to rid yourselves of the idea that the ‘doctor knows best’ when you know that their actions are doing harm.

You are not a lesser being than your doctor. You absolutely matter.

 

If you need help with complaining for FREE you can contact your local council or local Healthwatch  team to find out about independent NHS complaints advocacy services in your area. Complaints Advocates may help you to write a letter, attend a meeting with you or explain the options available to you.

If you have already complained to the GP, the Practice Manager, the CCG, NHS England, and are still unhappy then; 

You can contact the Parliamentary and Health Service Ombudsman (PHSO) which makes final decisions on unresolved complaints about the NHS in England. It is an independent service which is FREE for everyone to use.

To take your complaint to the Ombudsman, visit the Parliamentary and Health Service Ombudsman website or call 0345 015 4033.

You can of course complain to you MP and ask for help, some will oblige, others will direct you to NICE or NHS England.

Why not print this blog post out and help your GP or advocate to understand the situation better?

The home page of the site helps to show the issues facing patients; www.b12deficiency.info

If you would like to share your letter too, please email me at tracey@b12deficiency.info. Andrea MacArthur is collecting information in support of her petition.

If you need support, please join www.facebook.com/groups/174928999276739.

Very best wishes

Tracey

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.

www.b12deficiency.info Twitter – @B12info Facebook

 

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/

 

A helpful Christmas tip for B12 deficient patients?

Some of you may know that this blog, the website www.b12deficiency.info  Facebook and Twitter pages are run by me, Tracey Witty.

Others write to the ‘B12deficiency.info team’ thinking that the website is a huge concern with a team of staff. (I am flattered by this and I hope it means that the website gives a professional impression!)

The fact is, that I work day to day on the website, blog, Facebook and Twitter alone. If you email or message the site, it is me who responds to you.

One of the things which transformed the speed of my work was embracing the use the microphone on my iPhone to speak the text I want to communicate. Some of you may well already be aware of this, but lately I realised that so many of my friends have not found and used this helpful little tiny square button yet – so I thought some of you may like to know about it too.

If you have a smart phone and haven’t used this fantastic facility yet it may also enhance your life!

This little tiny button on the bottom row of my iPhone keyboard means that I can answer your emails, Facebook and Twitter messages more swiftly.

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I understand what an essential lifeline social media is for so many with chronic illness and that lengthy posts and messages can take real effort to type. Some find this exhausting, taking so much more time and effort than speaking, although I do know how difficult even ordering the spoken word can be between B12 injections for may patients.

Please note though, one thing I have to make sure I do is read through and correct text before I press ‘send’ since the phone hears some words differently, it likes to record ‘fish and the sea’ in place of ‘deficiency’ from time to time!

If you use an iPhone don’t forget you can also ask Siri to remind you to call that person at a particular time, or to set an alarm to remind you to take something out of the oven.

The burnt biscuits I took out of the oven yesterday definitely needed a Siri reminder, I shall try and take my own advice next time!

I hope this helps, best wishes for a Happy Christmas,

Tracey x