A very bright light at the end of a very long tunnel – Letter 7

The letters page http://www.b12deficiency.info/letters/ is full of examples of poor understanding of B12 deficiency…. but letter 7 is very different!!

If you are struggling to gain access to correct treatment and you have similar problems to this patient, maybe your GP or haematologist could benefit from reading this, frankly, amazingly supportive letter?

‘…….a treated case of pernicious anaemia and subacute combined degeneration of the cord. She requires high doses of hydroxocobalamin to maintain her general well being, i.e. 1mg intramuscularly daily.… I will leave it to yourself to make enquiries and discuss whether her hydroxocobalamin can be fully funded by the NHS.’

 

Many of us have problems with accessing correct treatment. Many of us try desperately to raise awareness of B12 deficiency.

If you want to learn more and know of others who do too, please share the conference information with them – http://www.b12deficiency.info/conference-2016/

Letter 7 Haem-letter-1200

Please note; This letter came to me fully redacted so I have no idea who wrote this letter or which NHS Trust they work for.

Best wishes

Tracey

B12deficiency.info 2016 Conference 17th and 18th June – Education for all, B12, methylation and thyroid.

I am delighted to announce our second event and Sally Pacholok will be with us again!

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The conference will attempt to address the gaps in the diagnosing and understanding of these conditions and the effects on both physical and mental health.

Please note: This is NOT a two day conference, an identical programme will run each day.

Ticket price £62.00
Includes: Presentations, lunch, refreshments, attendance certificate for CPD and free on site parking.


This conference is for all with an interest in the subjects both personally and professionally.

If you are a patient you will learn more about your condition. If you work with people in any field of mental or physical health then this conference will provide high clinical relevance and an attendance certificate for CPD.

It has been arranged by Tracey Witty of www.b12deficiency.info to promote greater awareness and understanding of B12 deficiency, methylation and thyroid disease.

PLEASE NOTE: There is no sponsorship from, nor affiliations to pharmaceutical or vitamin companies at this event (or throughout www.b12deficiency.info).

The speakers are highly knowledgeable, experienced and engaging. They will discuss the multi-systemic and polyglandular nature of the conditions, diagnosis and misdiagnosis.

Q&A time with the speakers is scheduled.

In addition to our speakers we will hear from three patients who will present their own case studies.

Last years attendees said; – Thanks for organising the excellent conference, the speakers were all very engaging and enthusiastic. I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday!

– I am an acupuncturist and during the conference I realised that my training in B12 deficiency was woefully inadequate. Knowing so much more about B12 and methylation has completely changed my practice!

Meet the Speakers

Sally Pacholok RN BSN
Presentation on –
The effect of B12 deficiency on all body systems. Symptoms, causes, those at risk and common misdiagnoses.

Sally was a licensed Advanced Emergency Medical Technician and worked as a paramedic prior to and during nursing school.

In 1985 aged 22, Sally diagnosed herself with vitamin B12 deficiency, after her doctors had failed to identify her condition. Over the past two decades, she has frequently found untreated B12 deficiency in the patients she cares for and has campaigned to raise awareness of this all too common debilitating neurological condition.

During her presentation Sally will be using case studies to show how b12 deficiency affects people of all ages, including babies and children. She will also be reviewing the pathophysiology, signs, symptoms, risk factors, causes, diagnosis, differential diagnosis and treatment.

Sally’s book inspired Emmy winning film producer Elissa Leonard to produce a documentary on misdiagnosed B12 deficiency in 2011 click to watch. Elissa then went on to produce a feature film based on Sally’s life click to watch.

Anne Pemberton
Functional Medicine Practitioner MSc, PGCE (Autism), RGN.
Presentation on –
Genetic Polymorphisms in Chronic fatigue and Autism: Supporting the role of B12 and Folate and their connection to HPU (Kryptopyrroles).
Anne spent the first 25 years of her working life as a registered nurse in cardiac intensive care. Her son’s diagnosis of autism and the lack of medical help was the catalyst for Anne’s decision to retrain as a functional medicine practitioner.

Anne is now the Course Director on the MSc in Nutritional Therapy at the Northern College of Acupuncture in York. She also runs a busy international clinic, with special interest in CFS (chronic fatigue syndrome) and autism.

Anne uses nutrigenomics data from 23andme.com alongside appropriate functional testing, in order to establish each person’s individual health requirements. She has co-written the first UK based practitioner nutrigenomics course in the UK which is delivered twice yearly in York and London. Anne has also co-authored a book with Dr Damien Downing ‘The vitamin Cure for Digestive Disease’.

Dr. Afshan Ahmad BSc, PhD.
Presentation on –
The effect of thyroid replacement in patients with ‘normal’ thyroid chemistry and clinical signs and symptoms of hypothyroidism.

Development for Vaccine Research Trust, a charity established in 1982 which supports research into why a group of people present with signs and symptoms of hypothyroidism but continue to have blood tests within the reference range. She co-founded Vaccine Research International Plc and helped Dr Gordon Skinner in his thyroid clinic in Birmingham, working closely with him in his dealings with the GMC. In 2000, they published a paper on the effect of thyroid replacement in patients with ‘normal’ thyroid chemistry and clinical signs and symptoms of hypothyroidism.

Afshan qualified with a BSc degree in Immunology and Microbiology from London University in 1983 and joined Dr Gordon Skinner’s vaccine research group at the Medical School, University of Birmingham in 1985, she completed her PhD in Medical Microbiology in 1999.

Dr Joanne Younge
Associate Specialist Old Age Psychiatrist.
Presentation on –
Audit on B12 and folate deficiency in the elderly.

Joanne graduated from Queen’s University, Belfast, in 1996 and is an Associate Specialist Old Age Psychiatrist in an NHS Trust.

Joanne is a Cognitive Behaviour Therapy (CBT) Clinical Lecturer at Queen’s University in Northern Ireland. Her main interest is improving care for patients, either through quality improvement initiatives, using Institute for Healthcare Improvement methodology, or audit.

She co-authored ‘CBT for mild to moderate depression and anxiety’ in 2014 and an audit on improving patient safety, ‘The impact of introducing a Lithium care pathway’, was published as an example of shared learning on the National Institute of Health and Care Excellence (NICE) website in 2015.

The introduction of an electronic care record, with better access to blood results, and improved insight into the potential impact of deficiencies prompted an audit into B12 and folate deficiency in the elderly patients referred to the local service. She is hopeful that the audit, presented at the conference, will have an impact on improving patient care in the future.

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To book your place click here

To read more please visit the conference page.

I look forward to seeing you there!

Best wishes, Tracey

B12 deficiency can strike at any age, it is not confined to women over 60

 

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Signs & symptoms in infants and children
(List supplied by Sally M Pacholok R.N & Dr Jeffrey Stuart co authors of ‘What’s wrong with my child?’

• Developmental delay or regression
• Apathy – Irritability
• Hypotonia (decreased muscle tone)
• Weakness
• Tremor
• Involuntary movements
• Seizures (fits)
• Ataxia (Neurological disorder affecting balance, coordination and speech)
• Anorexia and other eating disorders
• Failure to thrive
• Poor weight gain
• Poor head growth
• Poor socialisation
• Poor motor skills
• Language delay
• Speech problems
• Lower IQ – Mental retardation
• Anaemia
• Macrocytosis (large red blood cells) Note – need not be present!

 

For more information on ‘Red Flags‘ in children please visit

www.b12deficiency.info/children-and-b12/

 

b12-child-land

 

Please see our posters page to share, download and print these posters.

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

Best wishes, Tracey

B12 and Thyroid conference 2015 – an enormous success, incredible feedback and a game changer!

I want to say a huge thank you to the fantastic four; Sally Pacholok, Lorraine Cleaver, Umahro Cadogan, and Dr Malcolm Kendrick – who all have more than one thing in common;

A passion for educating and exposing truth, unflappable tenacity and humour!

Sally Pacholok, as we with B12 deficiency know, is an inspiring educator who diagnosed her own condition and is completely dedicated to raising awareness of this condition. The vast amount of information Sally imparts in just 2 hours, is incredible.

Her time in the UK was spent working almost solidly and even during her sparse free time managed to help patients in a profound way. Anyone reading this who would like Sally to speak at an event then please get in touch, you won’t look back!

Lorraine Cleaver told us of her shocking experience of thyroid disease, her planned suicide and her road back to health after appalling treatment due to ignorance. She also recounted Jill’s story, which echoed her own experience as Jill remained undiagnosed with B12 deficiency and Graves disease for years. Jill was subjected to ECT (Electroconvulsive therapy) in place of what her body required. This presentation was profoundly moving.

Umahro Cadogan became so ill in his teens that he too had to become his own doctor. He has made it his life’s work to educate himself and others on nutrition and nutrigenomics. His presentation on methylation, a hugely complex subject, was expertly delivered making it accessible to all.

Dr Malcolm Kendrick talked about the shocking state of accepted medical data. He is the kind of GP we all want, sensible, caring, humorous. He sorts the wheat from the chaff and is determined to shine the light on the dark corners of medicine. I have followed his blog for years and if you don’t already, then sign up!

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Pic. Dr Jeffrey Stuart, Sally Pacholok, Umahro Cadogan and me.

Just a couple of hours after the conference emails started to arrive from delegates and I was stunned and delighted, here is the first;

“ Thanks for organising the excellent conference today. I was delighted to attend and learnt a lot and met some lovely people. The speakers were all very engaging and enthusiastic.

I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday! That is testament to the line-up you organised. Well done. I hope it makes a difference.“

 Dr J Younge –

Well, judging by my inbox there has already been a huge shift – the day really can be labelled ‘A Game Changer’!

Dr J Younge sums it up perfectly, the delegates were completely engaged right up until the end.

For those of you who attended you will know that there was an impressive (and surprising) number of health professionals across all disciplines who attended and who thankfully took the time to write;

“Congratulations on organising a really interesting day.

The speakers were excellent and inspiring and gave us plenty to think about!”

Dr S Williams

For those of you who couldn’t attend – I promise there will be more events in the future. (I have never done this before, but I really enjoyed it!)

It worked because of the quality and mix of the speakers, and because of the connection between all of the subjects. Those who came are now determined to make a change.

It was a fantastic day and I have learnt a lot about how to make it even better next time.

Heartfelt thanks to Dr Jeffrey Stuart and of course to Damian Witty.

Thanks to all who supported me in organising this event – you are priceless!

Tracey x

www.b12deficiency.info is my passion, highlighting the effect on mental health, fertility, pregnancy and children is a must.

 

If you want to help us to access Hydroxobalamin OTC please sign and share this petition.

Lets continue to work together, we will make a difference, please contact me if you would like to learn more.

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

East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing?  NO?…. neither is the patient.  They remain exhausted with regular blackouts.

What are you doing to your patients East Lancashire NHS Trust?

How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?

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East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.

Exactly how many patients have been incorrectly misdiagnosed with;

Alzheimer’s/Dementia?

Depression?

Chronic fatigue syndrome?

Fibromyalgia?

Multiple sclerosis?

M.E.?

Psychosis?

Bipolar?

Vertigo?

Congestive heart failure?

Chronic pain disorder?

Anaemia?

Autism?

ADHD?

How many babies fail to thrive?

How many children have a diagnosis of developmental delay, mental retardation?

How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?

How many new mothers sectioned with post natal depression from inactivated B12 supplies?

How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?

How many Strokes and heart attacks?

How many suicides?

East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.

TAKE ACTION NOW – THIS IS SERIOUS!!

Please visit www.b12deficiency.info

http://b12deficiency.info/children-and-b12.html

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

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Best wishes,Tracey