Dr Joseph “Chandy” Kayyalackom-a Reflection

Dr Joseph Alexander “Chandy” Kayyalackom (1941-2023) -a Reflection

Dr Chandy was born in 1941 in Kerala, India. He studied medicine at the University of Kerala and then moved to the United Kingdom to complete his training as a GP. He started his practice in Horden, County Durham, in 1973 and remained there for the rest of his career.
Dr Chandy became highly recognised for his work on Vitamin B12 deficiency and was a well-known figure in the B12 deficiency community. Along with Hugo Minney, Dr Chandy was the author of “Vitamin B12 deficiency in Clinical Practice” (subtitle “Doctor, you gave me my life back!”)
This book describes Dr Chandy’s findings during his years of clinical practice, As can be seen from the many tributes pouring in on social media sites and forums like www.healthunlocked.com, this publication in 2011 was one of few written materials available which helped people advocate for themselves and improve their diagnosis and treatment of Pernicious Anaemia and B12 deficiency symptoms for other reasons. Many found this book, and the ones written by our Society’s founder Martyn Hooper, the videos by Sally Pacholok and websites like those of Tracey Witty, instrumental in the turning point of their condition.

I personally never encountered Dr Chandy, but I have met and spoken to many who have been impacted either by being a patient of his or from reading his book and starting their own journey of self-discovery to get “their life back”. Without exception these people feel very strongly that Dr Chandy was a hero. I can understand that: the haematologist who first really listened to me and my symptoms and helped get me on the right track sufficiently to start functioning again by going beyond the standard guidelines is my own personal hero.

Dr Chandy was practising in a time and in a community where he was able to see generations of families and his devotion to their care was often noted. He saw people who were suffering symptoms of B12 deficiency which had become familiar to him from Brahmin patients (strict vegetarians). But in the case of his patients in Durham, these were British people with a predominantly meat-based diet. What could be causing these symptoms?

He noticed that testing for B12 and treating low levels showed results in the reversal of symptoms especially fatigue. He saw that many had B12 deficiency even without macrocytosis (the anaemia of pernicious anaemia). He noticed also that folate levels in blood were also affected by B12 deficiency and by B12 injections. Those of us in the know, take this knowledge for granted today, but it is still surprising to me how many in the health care profession are completely unaware of these factors.

Early on in my (pre-charity) working life I was fortunate to work with a boss and mentor who was a quiet leader, someone who stood up for what was right even when faced with insurmountable odds, who used facts, measured arguments, diplomacy, and persuasion to change European law and ultimately to do the right thing. He used to say, “most of us will never be faced with life changing challenges like Mandela, Gandhi, Martin Luther King or Rosa Parks but we can all make a difference to someone, no matter how small”.

I think that Dr Chandy’s beliefs and his stand for improving his patients’ lives will, in time, show that the difference he made was by no means small! Dr Chandy believed that B12 deficiency was much more common than previously thought and could cause a variety of symptoms, even without the typical blood markers. He treated hundreds of his patients with B12 injections, often at higher doses and for longer durations than standard guidelines recommended. He saw improvements in many of his patients, claiming it brought significant relief from fatigue, neurological symptoms, and other issues.

Unfortunately, it seems he was “before his time”, and the medical establishment questioned his approach, citing a lack of strong scientific evidence for B12 deficiency causing many of the conditions he treated, and concerns about potential side effects of high-dose injections. In 2012, the General Medical Council (GMC) temporarily banned Dr Chandy from prescribing B12 and treating fatigue syndrome. The ban was lifted after public outcry from his patients and supporters, arguing for patient autonomy and individualized treatment based on clinical experience. This incident sparked wider debate about the role of patient preferences and practitioner discretion in medical decision-making.

Ironically the British Medical Journal online (BMJ) in December last year, the month that Dr Chandy passed away, carries an article on Vitamin B12 deficiency which specifically advocates many of the points which Dr Chandy and many knowledgeable others have been advocating over the years:
• the clinical picture is the most important factor in assessing the significance of results of blood tests assessing cobalamin (B12) status because there is no “gold standard” test to define deficiency.
• Neurological symptoms resulting from B12 deficiency may take several months or even years to resolve completely.
• Measuring serum biomarkers such as B12 or methylmalonic acid is neither helpful nor indicated in assessing or monitoring clinical improvement, neither is titration of injection frequency based on biomarker assessment.
• Self-administration of intramuscular B12 injections can lead to greater patient satisfaction and better health outcomes.

Vitamin B12 | The BMJ
Whilst the debate continues, both in the comments below this article in the BMJ and in the discussions awaiting the publication of new NICE guidelines on B12 Deficiency in the over 16s, the patient advocacy groups who know from their work that the correct B12 treatment for deficiency is life changing, continue to wonder why there is so little funding for research and so little support from the health care profession for this essential vitamin.

Dr Chandy’s death reminds us that the controversy and debate remains around the standardised guidelines and individual patient needs. It also reminds us that medical practice still needs to evolve and that we are all, patient groups and individuals alike, responsible for helping to advocate for better research and evidence.

Notwithstanding the controversy surrounding his career, in 2013 Dr Chandy was awarded the Glory of India award for his service and work on vitamin B12 deficiency and fatigue. He was also the founder of the B12 deficiency support group (B12d.org), an organisation that recently joined the B12-Alliance, a group of not-for-profits whose mission is to raise awareness and speak with one voice strongly and authoritatively on behalf of the patient backed by sound research and evidence from CluB-12.

Dr Chandy died on 21 December 2023 at the age of 82. Our condolences are with his family and his many supporters.

My aforementioned boss also used to say, “don’t just complain if you don’t like it, do something about it and let’s start now by looking together for a solution” this was always accompanied by his steering me towards the library in search of the relevant “knowledge” to form my arguments. As someone who was awarded an OBE, my boss referred to his recognition as “Other B**gg*ers Efforts” acknowledging the role that we all played in why he received an award. He was a strong supporter of working together for change and left a lasting impression on me as has Dr Chandy’s belief and quiet but firm commitment in his treatment of sufferers.

As the new year starts, let’s all try to use this opportunity to work together to improve the diagnosis and treatment of Pernicious Anaemia and the debilitating symptoms of B12 deficiency.