Wherever we are in the world, we are all in the same boat…

There are many problems associated with diagnosis and treatment of B12 deficiency and many of them boil down to a lack of education of health professionals. They have all been done a disservice.

This is a worldwide problem.

Serum B12 blood results
I help people to access the treatment they need and always urge people to get a copy of their current and historical results. In some cases they have been found to be below range, but the result has been ignored whilst the patient has continued to deteriorate. Remember you are legally entitled to your results.

Our GP’s may be unaware of the limitations of the serum B12 blood test, that it can miss seriously deficient patients and that this can lead to a within range result being batch filed and labelled as ‘normal’.

Lack of education of this common condition means that our GP’s don’t necessarily understand that they cannot wholly rely on the blood results. The clinical picture is of utmost importance and if the patient is symptomatic it’s vital they access correct treatment for B12 deficiency.

It is important to note that the Active B12 test (holoTC/ Holotranscobalamin) is not gold standard either, remember that the clinical picture is key.

Treatment with tablets
Too many GP’s in the UK (and in other countries) try and treat B12 deficiency with B12 tablets and if the patient includes animal products in their diet, like the one the result belongs to below, then their deficiency is not caused by dietary lack and injections are essential. If you cannot absorb B12 from food then a tablet taking the same route won’t work either.

NICE Guidance states:

  • Not thought to be diet related — administer hydroxocobalamin 1 mg intramuscularly every 2–3 months for life.
  • Thought to be diet related — advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection.

The above result at 144 ng/L is below range and is definitely showing B12 deficiency, the patient has many neurological symptoms and as I have said, includes animal products in their diet. Unfortunately this GP (and others in the Practice) believes that 50mcg cyanocobalamin tablets are the best way to treat this patient.

In reviewing these results, the GP added their own note stating:

“B12 low, script for cyanocobalamin and repeat 2 months”.

The second sentence originates from the lab and states:

“Note low B12, deficiency possible, treat if clinically appropriate otherwise repeat after 2 to 4 months and review.”

The issue with the lab note is the term: ‘deficiency possible’ –  surely this should read ‘definite B12 deficiency’?

All labs are different, all assay kits are different and all reference ranges are different. This lab below has a low reference of 150ng/L and in my area it is 220 ng/L, in East Lancashire it’s 110 ng/L. There is no across the board standard which help either the doctor or the patient.

The patient that these results belong to continued to feel unwell, had absolutely no abatement in symptoms but due to the supplementation of the 50mcg tablets there was a small raise in the serum B12 level to 161ng/nl. This confirmed to the GP that the patient could absorb B12 and they were instructed to continue with the tablets. In fact, the patient was told that they could ‘definitely absorb B12’.

CRIKEY

This would not have happened had the GP been properly educated about B12 deficiency.

Waste of time, money and NHS resources
This patient went back to see the GP repeatedly due to feeling no improvement and each time their B12 serum level was tested. Each time they were told that they should continue with the tablets for another 2 months. How frustrating is it to even read this, never mind live this?

My recent involvement in this case provided the information the GP needed to treat the patient as per NICE Guidance and how cyanocobalamin should only be used for patients with B12 deficiency of dietary origin.
However, I was told that the Practice were following another protocol and that they felt the patient hadn’t taken the tablets religiously and this was the reason for no improvement.

WOW

After nearly a year of zero improvement in symptoms I think most of us would be hard pushed to take a tablet which was proving to be a pointless treatment.

A tricky but simple case
Thankfully common sense has now prevailed and the Practice has decided to give the patient the correct treatment of B12 injections. It took many phone calls and emails for this to be actioned. The people I asked to speak to were often ‘in a meeting’ but I don’t give up.

It should not be that any patient is left for 11 months without correct treatment for this common and easy to treat deficiency.

This practice were very annoyed that I was advocating for the patient, they said that there was no need for “3rd party involvement” however in this case and in fact all that I get involved in, there absolutely was a need.

Until education on B12 deficiency is the norm, it will continue to be that outside agencies are needed to help health professionals of all disciplines to understand the seriousness of this condition and what correct treatment should be.

We are all the same
Many of us know how difficult it can be to challenge a doctor, especially those that have their heels so firmly dug into the ground.

Fortunately I learnt long ago that it can be unsafe not to challenge doctors, that they are no different to the rest of us, that they are not infallible, and they can correct their mistakes if they choose to – if the infrastructure allows them to.

I am thankful to all those health professionals who appreciate being furnished with the correct information about B12 deficiency and who regularly use my site.

Best wishes

Tracey
www.b12deficiency.info

If you require personalised help please see the contact page.

You can read testimonials here.

If you are a healthcare professional wishing to gain CPD credits please see the film page 

A bizarre and wasteful practice – Is your doctor following this crowd?

It seems there are a group of doctors using the B12 test to in order to remove B12 injections from patients who require life long treatment.

I have blogged about this practice before but due to the extra impact it’s having I thought it time to revisit.

Some doctors (far too many) are systematically re testing serum B12 levels in those already diagnosed believing that a ‘within range’ result means the patient can function without their essential treatment.

These patients cannot absorb B12 from food, hence their original diagnoses, so how exactly are they meant to access B12 without their injections?


Test shortage
Another impact of patients being retested unnecessarily is a resulting lack of the reagent required to carry out the test. This has happened in the past few months and obviously delays diagnosis and treatment for new patients.


Wasteful and harmful
This practice is nearly always wasteful but it’s harmful to the patient too if the doctor fails to understand that testing once the patient is on treatment is useless and that the result has no relationship to the level of B12 in their cells.

What the experts say
The testing lab often add this note to the bottom of a high result; “Do not measure B12 levels in patients who are on parenteral treatment”

and to quote NICE Guidance;

  • Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.
  • What monitoring is required after treatment for vitamin B12 or folate deficiency has started?

    • Perform a full blood count and reticulocyte count: 

    • Within 7–10 days of starting treatment.

    • A rise in the haemoglobin level and an increase in the reticulocyte count to above the     normal range indicates that treatment is having a positive effect.

    • If there is no improvement, check serum folate level (if this has not been done already).

    • After 8 weeks of treatment, and also measure iron and folate levels.

    • The mean cell volume (MCV) should have normalised.

    • On completion of folic acid treatment to confirm a response.

    • Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.

    • However, cobalamin can be measured 1–2 months after starting treatment if there is no response.

    • Neurological recovery may take some time — improvement begins within one week and complete resolution usually occurs between six weeks and three months.

    • Ongoing monitoring is unnecessary unless a lack of compliance with treatment is suspected, anaemia recurs, or neurological symptoms do not improve or progress.

Remember if you are neurologically affected you need to be on every other day injections for as long as it takes for those symptoms to stop improving.
If require personalised help please see my contact page for more information.
Best wishes

Tracey

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

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

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

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


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

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

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

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

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

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

Afternoon Workshop

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

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

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

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

A few evaluations from the day;

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

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

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

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

Inspirational and thought provoking and will consider in my work.

 

Another opportunity to raise awareness

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

Bangor University.

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

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

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

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

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

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

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

Best wishes

Tracey
www.B12deficiency.info

Refs;

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

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

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

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

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

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

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

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

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

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

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

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

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

2014 The neurology of folic acid deficiency.

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

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

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

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

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

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

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