BOOK Vitamin B12 deficiency in clinical practice - A brief biography of Dr Chandy
This biography is directly from the book "Vitamin B12 deficiency in Clinical Practice" and was endorsed by Dr Chandy during his lifetime
I was born Joseph Alexander (“Chandy”) Kayyalackakom on 16 January 1941, in Kerala, south India. During the postwar period my parents were based in Thiruvananthapuram/Trivandrum, the capital of Kerala, lately known as “God’s own country”. I spent my formative years in this beautiful countryside.
Each day I could hear conversations between family and friends about the ongoing difficulties everyone was facing due to the long-term damage the Second World War had caused: disease, death and famine throughout the country.
During the same period, the independence struggle was gaining momentum and heartbreaking stories of human suffering could be heard from every part of the Indian continent, causing further sadness and concern. On 15 August 1947, to everyone’s joy and surprise, we heard the much-awaited declaration that at long last our nation was independent, after 100 years of British rule. I was six years old and felt as though at long last my dream was beginning to come true. Unfortunately, my and the whole nation’s joy was short-lived.
Months later on a calm quiet evening, the whole family was startled by the loud cry of many thousands marching through the main street and an inconsolable crowd weeping, beating their chests and lamenting as they came to know of the brutal assassination of Mahatma Gandhi, who was and still is the father of our nation. The entire crowd was repeatedly crying out “Who will answer for the blood of Mahatma Gandhi, who will answer for the blood of Mahatma Gandhi?” Hearing the people cry I began sobbing; I was inconsolable.
This incident had a lasting impact on my relationship with my fellow human beings, especially my patients after I qualified as a Medical Practitioner in 1965. I have always remembered Mahatma Gandhi’s words: “Mine may today be a voice in the wilderness, but it will be heard when all other voices are silenced, if it is the voice of truth” (Kumarappa, 1951).
I and the whole family were excited when I received the letter of admission to the Kerala Medical College.
Soon the day came to say “goodbye” to my parents, brothers and sisters and move away from my home town to the capital city. Looking me in the eyes, my father said (knowing that in six years’ time I would be a qualified medical doctor): “I am blessed with 12 children, six boys and six girls, will one of you one day make a valuable contribution to humanity?”
I hope and pray that I have not disappointed my dear father who is watching over me from his heavenly home. I also believe that the Father God will greet me, and invite me with open arms into his heavenly kingdom as a “good and faithful servant” after an earthly life of service for 50 years (1965-2015).
Encounter with B12 deficiency
In 1965 I qualified (MBBS in medicine) from Trivandrum Medical College, Kerala University (India). The following year I did my house physician’s training under the supervision of a professor of medicine. Here I first encountered the effects of B12 deficiency.
In this city there were many Hindu Brahmin families who had been strict vegetarians all their lives. I noticed that some women between the ages of 20 and 30 presented in my outpatient clinic with a particular set of symptoms. Comparatively these women were quite fair in their complexion. All appeared pale, tired-looking and lacking in energy. They complained of aches and pains, headaches and dizziness. Having excluded other possible conditions, I was rather puzzled by these patients.
I sought my professor’s guidance. His immediate advice was to give them weekly deep intramuscular (IM) liver extract injections which were painful. Eight weeks later, when they returned to the outpatient clinic, they appeared healthy and energetic and their pale faces had become pink and shiny.
I can recollect being intrigued and asking the professor how the liver extract could cause this remarkable transformation. My boss smiled and told me about the simple and life-saving discovery made by George Minot and William Murphy of the US regarding the “Liver Diet” in 1926. This discovery was accidental. While having lunch they gave their bleeding dog some leftover liver. A few days later they noticed that the dog’s bleeding had ceased. The two excited physicians decided to try the effect on chronically sick American soldiers. To everyone’s amazement, all these soldiers fully recovered. It was not until 1948, however, that the B12 molecule was officially isolated by Edward L. Rickes, Norman G. Brink, Frank R. Koniuszy, Thomas R. Wood and Karl Folkers in the US (Rickes et al., 1948b) and E. Lester Smith and F. Parker in the UK (Smith, 1948).
During this period, I was inspired by the unique British welfare state system and the formation of the state-funded National Health Service (NHS) in 1948, providing “cradle-to-grave” medical care for all UK subjects, rich and not so rich. This welfare system had become the envy of the world.
I decided to leave for the UK. When I sought my parents’ permission to leave, they asked me: “Why not practice in Kerala instead?” I gave two reasons:
- If I became an NHS doctor in England, I would not have to charge consultation fees from the rich or the not-so-well-off patients.
- In the UK I would be able to practice unhindered. The promise given by the then health minister, Aneurin Bevan, to the medical profession on 3 July 1948 had greatly influenced me: “My job is to give you all the facilities, resources, and help I can and then to leave you alone as professional men and women to use your skill and judgement without hindrance. Let us try to develop a partnership from now on" (Bevan, 1948).
On the night of 26/27 August 1966 I was travelling for the first time outside Kerala State; I was not at all used to airports or flights. In the 1960s the foreign exchange reserve of India was minimal so the maximum amount of money I was allowed to take with me was a mere three British pounds.
My aunt, who lived in Chennai, drove me to the airport, gave me a few instructions and led me to the international departures lounge. While I was settling down in the lounge, to my surprise, an announcement came across, “Dr Joseph Chandy, please come to the travel desk”. I was not expecting this added stress. I was anxious as to what it could be.
I walked towards the counter and joined the line. As the line began to move forward I noticed a respectable-looking senior gentleman moving forward, not in the line but on my left-hand side. Out of courtesy I asked him whether he would like to go in front of me. He responded “No, I will wait here,” and asked me whether I was Dr Joseph Chandy. I said “yes”.
Soon I reached the counter. The staff asked me whether I was prepared to give my seat to a family of five so that all of them could be seated in one row. I agreed, turned around and walked towards where I had been sitting in the lounge. To my surprise the senior gentleman was patiently standing at the same spot where he had said he would wait for me. I politely acknowledged his presence and stood silent; he then began to speak: “I have an important message for you; listen to me, one day your discovery/work and your name will be spread all over the world”. He repeated the same message once more. I was totally bewildered.
I responded by saying, “Sir, I am in fact nobody, just a recently qualified doctor from Kerala setting off to the UK for higher studies and then hoping to return to Kerala to serve my local community”.
The gentleman kindly reminded me of what he had said earlier, “the important message”. Confused, I asked him who he was. He replied that he was the Professor of Neurosurgery at Vellore Medical College not far from Chennai. Only then did I realise that he was in fact the world-renowned Professor Jacob Chandy (my namesake). What a privilege I thought, although still very confused. As he walked away, I returned to my seat. I felt almost as if I was dreaming. I looked again around the whole departure lounge; nowhere could I locate the mystery professor. Soon the announcement to the British Airways flight to London was relayed.
So in 1966 I came to the UK and worked in paediatrics at teaching hospitals up to registrar level, passing my Diploma in Child Health (DCH) in 1969. Interestingly, at this time I came across a case of a rare condition, Waardenburg Syndrome, which presents as a tuft of white grey hair on the scalp of a newborn baby. There was previously no known cause for it. We now believe that this is a rare case of B12 deficiency causing vitiligo affecting hair follicles. (The baby was at the time of writing a teenager and still had the white tuft. Both mother and son have B12 deficiency and receive monthly B12 injections.)
This interest in maintaining the health of each person right from an early age continued after I became a GP. I had moved to the north-east to take up a post as a GP in a medical practice of 3,500 patients in Horden/Peterlee, County Durham.
It was by destiny that, ten years later, on 3 November 1981, I stumbled on my very first reported case of B12 deficiency with neuropsychiatric signs and symptoms, without macrocytosis (large immature red cells)  and without IF antibody being present. How this came about is described below.
One of my first assignments as a GP in 1970 was a call-out in the middle of the night to deliver a baby as the midwife could not get there. This event turned out to have momentous consequences for my future interest in vitamin B12.
Some time after the birth, the baby’s mother, Glenise Mason, came to my surgery suffering from anaemia. Her blood test showed microcytosis (small red blood cells), indicative of iron-deficiency anaemia, so I treated her in the normal way with an iron supplement. Her condition improved but the anaemia did not completely clear up and she presented at regular intervals over the next ten years with recurrent anaemia. Her persistent symptoms included extreme fatigue, low mood, breathlessness and weakness.
It was not until 1981 that it suddenly struck me that she had a similar look to that of the Hindu Brahmin women I used to treat successfully with the liver extract injection in India. I then thought of testing for B12 deficiency. At the time, such a suggestion was unheard of because Glenise did not have what were then considered the classic and only signs of vitamin B12 deficiency: macrocytosis and IF antibody. These are the signs of pernicious anaemia which were considered the only manifestation of vitamin B12 deficiency (a view which still lingers on today). I had great difficulty convincing the haematologist at the laboratory that the B12 test needed to be done, but eventually he relented. To our astonishment, the result came back of 185 nanograms per litre (ng/L) blood serum B12 – a level which clearly indicated deficiency. The result allowed me to make an immediate diagnosis and commence B12-replacement therapy by injection. The diagnosis was confirmed when symptoms receded, and Glenise returned to her normal active life.
This experience was a revelation, for it overturned accepted dogma and opened up an entirely new line of clinical enquiry: if B12 deficiency could occur without macrocytosis and IF antibody, then what other symptoms might it lead to? I realised that the implications were vast.
Link between vitamin B12 and folic acid absorption
As if this was not a dramatic enough discovery in itself, other important but previously unknown aspects of vitamin B12 deficiency began to emerge. The first was the link between vitamin B12 and folate. In the 1980s, the importance of folate was less well known so I did not think of supplementing Glenise with folic acid. Nevertheless, her blood test results showed that as her B12 blood levels rose, so did her levels of folate despite the lack of folate supplementation.
This revealed, crucially, that folic acid availability to the body is very dependent on the B12 status (see Table i‑2 in the book). Note how closely both B12 (which was being injected) and folate (which was not being supplemented) availability in the blood serum follow the same pattern. Both rise to replete levels when B12 injections are given, and both fall rapidly (far more rapidly than the textbooks would have you expect) when injections are withdrawn. (Injections were withdrawn on various occasions because of Primary Care Trust (PCT) embargoes on treatment described below.)
See also Charts in Chapter 5
Folic acid absorption and utilisation seem to be almost entirely dependent on optimum availability of B12 in the circulation. The pattern in the table above is reinforced by many more patient observations. In this case, the patient’s folate levels responded to her B12 supplements even though there is no evidence that her dietary intake changed and 28 years of medical records show that she received B12 replacement but no folic acid or folate supplements. During each embargo period (see Table i-1 above - when B12 was not permitted to be given), her folic acid levels steadily dropped, and during B12 supplementation the blood levels of folate rose again (See also Chapter 5, Chart 5‑1 which refers to the same patient).
The second important aspect was that predisposition to B12 deficiency was inherited. In 1996, Glenise’s daughter, the very baby I had delivered, attended my surgery aged 26 manifesting similar symptoms without macrocytosis. Treatment was commenced, and this patient also recovered. In both cases I did not rely on the presence of macrocytosis and/or the positive IF antibody to be present in order to arrive at the diagnosis of B12 deficiency. This shows that the gene transcription defect is passed down from one generation to the next (see further examples in Chapter 5).
The above two cases led me to consider the very first reported case of B12 deficiency without macrocytosis; until then, macrocytosis was required before the doctor would even consider B12 deficiency. We now know that B12 deficiency can be easily diagnosed from symptoms, and confirmed with the most basic empirical test: if supplementing with B12 relieves the symptoms, and failure to supplement or subsequent withdrawal causes the symptoms to return, then this is positive confirmation of the putative diagnosis.
My interest in vitamin B12 was kindled from that time on. As I began to research B12 deficiency I was surprised at the echoes down the centuries. Compare for instance these descriptions of symptoms:
“Lightheaded, felt faint, dizziness, pins & needles, numb sensation in limbs, tired, sallow complexion, numbness & shooting pain down left leg, loss of grip.” (Chandy in Glenise Mason’s clinical notes recorded 1981).
and James S. Combe reporting in 1824 the first medical description of a patient likely to be suffering from B12 deficiency -
“His face, lips and whole extent … were of a deadly pale colour … languid; he complained of much weakness” (Combe, 1824).
With this new understanding, despite the difficulties described below, over the next thirty years I was able to treat many patients who were suffering from B12 deficiency but whose blood test results did not show macrocytosis or IF antibody.
Referral to secondary care (hospital consultant)
However, whenever secondary care (hospital endocrinology consultant, for example) referral was clinically felt necessary, in consultation with the patient and/or the family member, I made the referral promptly.
Patient choice is embedded in the NHS Constitution. There have been patients who felt that they had confidence in me and did not wish to be referred to secondary care, especially since other patients with the same symptoms had been into hospital and as a result had been left with no treatment and repeatedly called back for “observation” whilst they deteriorated.
I knew that I could confidently and safely diagnose and treat my patients but where the patient has required this, I have respected patient choice. By adopting the primary care protocols, my experience and specialist knowledge in many areas of general medicine steadily improved over many years. This resulted in my being able to diagnose and treat successfully many patients who were misdiagnosed or did not have a credible proven diagnosis, even when the misdiagnosis was made in secondary care.
My Pathway of Care and Information for Patients
Anyone who knows the UK NHS will know that the only certainty is change. In 2000, the NHS was restructured into Primary Care Trusts (PCTs), each responsible for an average population of around 100,000. Horden/Peterlee, where I worked, was included in the Easington PCT. (Following a national restructure between 2004-06, PCTs were eventually abolished in 2013.)
I had been successfully prescribing B12 supplementation since that first case in 1981, but in March 2002 Easington PCT delivered a blanket ban stopping me from making diagnoses of B12 deficiency. This naturally affected a lot of patients whose symptoms immediately returned once the B12 in their system (from supplements) had gone. I recorded symptoms at intervals for hundreds of patients, including an extensive patient survey, so demonstrating to Easington PCT that the treatment should be reinstated. In July 2006, Easington PCT accepted my case studies and my Pathway of Care and Information for Patients, and reinstated the diagnosis and treatment of patients with B12 deficiency. The Pathway (which became the Protocol – see Appendix 1) was based on a highly detailed study of vitamin B12-deficient patients and vitamin B12 therapy. It was developed jointly with Easington PCT and overseen by Dr Jonathan Wallis, Consultant Haematologist at the Freeman Hospital, Newcastle-upon-Tyne.
Although the Pathway of Care was revised with agreement from the PCT a number of times, my difficulties did not end there. In what follows I describe a number of instances where my assessment of the most appropriate care for patients was rejected by the health authorities. For a second time, my B12 treatment was stopped and the Protocol rescinded.
On 2 September 2004 (eight months after reinstatement of the treatment pathway), the Chief Executive of the PCT wrote to me: “I am concerned both to secure the safety of patients and to safeguard your professional reputation as a doctor who has given outstanding service to his local community for over 30 years…However, I think we are at the stage that if you do not feel able to undertake a research project and you wish to continue your present line of treatment, then the only way I see of ensuring both patient safety and your professional good standing is to get advice from the NCAA”.
The meeting with the NCAA was scheduled for October 2004. I requested whether I could bring a GP colleague, or if not, then the Chair of the B12 Deficiency Patient Participation Group (a lay person). The answer was “no” to both requests. I had three weeks to prepare my defence. I knew from past experience that it was likely that false allegations and misinformation would be presented to the panel during a pre-meeting. I realised my situation was quite serious. I did not have any influential colleagues I could approach for my defence. I felt in this dark moment that the only friend I had was my Lord.
Every Friday evening after surgery I entered the chapel, knelt and prayed, often with tearful eyes. At the end of my prayer, lasting one hour, my Lord prompted me in my spirit to pick up any Holy Bible I could find. To my amazement, on each Friday evening the same page was opened from different Bibles and the reading was exactly the same:
“Listen! I am sending you out just like sheep to a pack of wolves. You must be as cautious as snakes and as gentle as doves. Watch out, for there will be those who will arrest you and take you to court, and they will whip you in the synagogues. For my sake you will be brought to trial before rulers and kings, to tell the Good News to them and to the Gentiles. When they bring you to trial, do not worry about what you are going to say or how you will say it; when the time comes, you will be given what you will say. For the words you will speak will not be yours; they will come from the Spirit of your Father speaking through you.”
Matthew 10:16-20 Good News Bible
I came home and remained silent until evening prayer time. Towards the end I opened the Bible the fourth time; my eyes led me straight to Psalm 23 verse 4 (King James Version):
”Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me, thy rod and thy staff they comfort me”.
The following day the NCAA meeting was scheduled for the afternoon. My morning surgery was quite busy. At 11.30 am the supervisor telephoned and said that an important senior doctor wanted to see me immediately as the matter was urgent. The supervisor told him that I still had patients. “Never mind the patients, I want to see him now,” the visitor said. As it was lunchtime I asked the supervisor to have some tea and snacks ready. Within minutes the senior doctor was brought into my room. I stood up and respectfully asked him to be seated. He declined. I offered him some tea and snacks. He again declined and began saying, “I have come to warn you that if you promise to me now that from today you will not diagnose any case of vitamin B12 deficiency and will totally withdraw the B12 treatment regime you have been giving to all B12 deficiency patients since 1981, your job and your family will be safe and secure”. I fell to the chair and began to shed tears. Suddenly the crucifixion of Jesus came into my spirit. I responded to the visitor (senior doctor) as I had prayed the night before, with Psalm 23 verse 4. The senior doctor began trembling and asked me “will I be your rod and staff?” I replied, “yes, you will be my rod and staff”; he turned around and left the room.
On 26 October at 3 pm, following a pre-meeting where my case would have been discussed, the PCT Chief Executive’s secretary invited me into the boardroom. Almost for one hour they discussed not only the B12 controversy but all the past resolved issues. When I was asked to respond, I remained silent as I was commanded by the “word” I had received on the consecutive Fridays. To everyone’s surprise the senior doctor who came to warn me stood up and spoke on my behalf. On all counts he justified my actions. He challenged the panel and asked them whether any one of them had read my study/observational analysis (which had been widely shared as per GMC guidelines); no one answered “yes”. The senior doctor declared: “I read it last night; let me tell you, there is a gold nugget in his work. His protocol for B12d is not only safe: it saves lives”. One by one they all left the boardroom except for the senior doctor and myself.
In April 2006, six PCTs were merged to form a single PCT (the County Durham and Darlington PCT) covering a patient population of 600,000. The newly appointed Chair and the all-powerful medical director of the new PCT were fully aware of the existence of the former Easington PCT Approved Pathway of Care for B12 deficiency dated 3 July 2006.
Eight months later, on 14 March 2007, this officially approved Pathway of Care was unilaterality rescinded without any prior notice or consultation, or evidence being provided to support the decision. During the same period, an influential senior GP asked to see me urgently. When I questioned him the reason for the urgency of his visit, he replied: “[The new medical director] has already made up his mind to discredit your B12 deficiency study [approved by the former PCT]”. What was more, he said, following Professor Mike Pringle’s Investigation/Review (see below), the medical director would find reasons to suspend me and refer me to the General Medical Council (GMC).
I was in a state of shock. Fully realising the seriousness of the situation, my only remaining hope was to blindly trust in my Lord and Saviour. (All along, since I stumbled on the very first case of B12 deficiency without macrocytosis I had dedicated my work to my Lord Jesus.)
As I left home next day for the crucial meeting with the PCT, I decided not to tell my wife the threat we were under. On my way, I decided to step into the church to pray as a last resort. It was a rather cold, dark winter evening. I did not switch the light on at the church as I would be leaving soon. The parish priest thought a burglar had forced his way in to the church! I apologised for giving him a fright. I told him the reason I was there, seeking our Lord’s protection in this critical situation. Both of us knelt and prayed for a few minutes.
The moment I stepped out of the church my mobile rang. It was my son Paul from India. I briefly told him what was happening. He understood the gravity of the situation. Without any hesitation, Paul, with confidence in our Lord Jesus, declared: “Dad, you are an overcomer. Dad, you are an overcomer. Dad, you are an overcomer.”
As I walked into the surgery, to my surprise a priest and a gentleman were waiting to see me without a prior appointment. The supervisor told me the Irish gentleman had seen the BBC programme Inside Out about B12 deficiency and had flown across to see me. I could not turn them away. They were satisfied with the consultation and the advice given for long-term wellbeing. At that point, I told them about the senior doctor waiting next door and what his agenda was. They were shocked by what they heard and prayed for me and reassured me.
After a few minutes, I invited the senior GP into my room. He told me bluntly that it was in my and the Practice’s best interests for me to resign immediately and hand over the Practice to my remaining colleagues. Then I told him about my spiritual encounter with the parish priest and prophetic message given by my son Paul. The senior doctor repeated again what awaited me if I did not follow his advice. I politely told him he could leave.
The effects on patients of the sudden withdrawal of B12 treatment through the rescinding of the officially approved Pathway of Care in March 2007 were dramatic, and we documented them.
We know that without B12, B12-deficient patients deteriorate steadily. However, when a patient receives B12-replacement therapy and then suffers a catastrophic withdrawal, the patient appears to deteriorate almost to the point they would have reached had they not received B12: deterioration after withdrawal is rapid. Many patients suffered and, sadly, one young mother developed double pneumonia and died. The number of patients suffering concurrently seems too much of a coincidence for us not to connect this death with the withdrawal of her regular replacement B12 injections for eighteen months, her immune system having thereby been compromised. This observation differs markedly from the proposed slow reduction in blood levels suggested earlier (Chanarin, 1979, 1980, 1982), and indicates how little we understand about the different efficiencies of different people to manage B12 in the body.
At the same time as instituting this latest sanction on diagnosing B12 deficiency, County Durham and Darlington PCT brought in an NHS auditor: Professor Mike Pringle (of Nottingham University and PRIMIS) was appointed to scrutinise my B12 diagnoses and treatment and ensure that it met NHS standards of care.
Professor Pringle audited all of the patients identified by the Practice as exhibiting B12 deficiency and who had been receiving B12 supplements before the latest sanction – approximately 600 people. His team carried out a very detailed audit, interviewed patients, and met the patients as a group. The team applied their clinical knowledge as well as the interviews with patients to verify the patient information recorded and the changes that the Practice observed. The team concluded (in its report entitled Vitamin B12 prescribing in the Shinwell Practice, Horden, County Durham, dated 31 August 2007) that:
- The B12 protocol and actions in the Practice highlighted several important findings with regard to diagnosis and treatment of B12 deficiency. They observed that patients did feel a genuine benefit and this could not be attributed to a placebo effect.
- The PCT should provide extra ring-fenced funding to set up special dedicated B12 clinics to continue to provide this effective treatment.
- The PCT were to assist the Practice with audits, and support the Practice to provide data and share patients with independent researchers.
Following the advice of Professor Pringle, Shinwell Medical Centre was asked to participate in three research proposals backed by Manchester University and London University and the Durham and Sedgefield Research Body. Despite Professor Pringle’s recommendations above, County Durham and Darlington PCT did not permit the Practice to be involved nor allow the Practice to advise patients of this research so they could apply independently.
After Professor Pringle’s report was published, the ban on prescribing B12 was lifted but I was asked to keep meticulous records (which I had done anyway) and to submit them to the PCT every month.
Consequences of misdiagnosis
B12 deficiency is not understood, and as a result, is often not diagnosed. We believe it is widespread, and patients may be diagnosed as suffering from a range of other conditions (such as those listed below) whereas the root condition may be B12 deficiency (this list is not exhaustive):
- Adrenoleucodystrophy (ALD)
- Adrenal leucomyopathy
- Adrenal fatigue
- Chronic fatiguesyndrome (CFS)
- Depression/anxiety neurosis
- Functional dysphagia (swallowing difficulties)
- Inappropriate behaviour which could lead to a Functional Behaviour Assessment
- Functional paraparesis
- Functional movement disorder
- Functional neurologicaldisorder
- Functional paralysis
- Hereditary spastic paraparesis
- Hysterical paralysis
- Idiopathic disturbance of gait
- Multiple sclerosis(MS)
- Munchausen syndrome by proxy
- Myalgic encephalomyelitis (ME)
- Stiff person syndrome
- Semantic dementia
These patients are then prescribed lifelong toxic symptom-modifying and symptom-subduing medications, with a long list of harmful side effects.
We show here that robust clinically-based evidence has been presented by doctors and researchers (including the author), based on live patients, and has been offered to the responsible medical establishment time after time.
Unfortunately, representations from my local MP and patient representatives have been ignored repeatedly and there has been no willing or enthusiastic engagement. Transparent discussion is needed, to be followed by an action plan.
It does not take a medical genius to work out that with the deficiency-related presentation such as vitamin B12 deficiency or hypoadrenalism, it is unethical and clinically unsafe to carry out a placebo trial and deprive patients of safe treatment that could relieve their suffering. For example, if someone is suffering severe dehydration, it is not ethical to deprive them of water in order to see if they die more quickly. Unfortunately, during two separate periods of more than 15 months, our patients have been subjected to enforced withdrawal of B12 replacement.
This action by the PCT caused untold suffering to many, including the tragic and untimely death described above of a 41-year-old mother in May 2010 who was previously eligible and receiving parenteral vitamin B12 every month, and whose symptoms had abated. Many other helpless patients have developed irreversible physical, neurological and psychological damage. It makes me wonder if someone is profiting from this life-destroying agenda to obstruct the totally harmless replacement therapy, when a deficiency is clinically established. How would Aneurin Bevan respond if he returned and became aware of this deliberate destruction of human life by the same people who had given an oath to protect and preserve life when they signed up to be NHS doctors?
These two periods of enforced withdrawal of treatment demonstrate what would have happened had a placebo trial taken place. They demonstrate that there is no further need for placebo trials, that the withdrawal of this vital substance, this vitamin, causes the patient to relapse to their former symptoms. In short, it demonstrates that B12 deficiency is a real nutritional problem, and not in the imagination.
If B12 deficiency is to be diagnosed from blood results, then some ‘normal’ ranges for the substances under test need to be established.
The most usual range accepted as ‘normal’ for serum B12 (B12 measurable in the blood) is 200 to 900 ng/L in the UK. There is some suspicion that this is actually the range of accuracy for the test equipment, and serves no biological function; ‘normal’ ranges are different in different parts of the UK, and appear to be different in different countries, and eminent researchers have called into question the accuracy of the current version of the blood test (Carmel & Agrawal, 2012; Hamilton et al., 2006; Nexo & Hoffmann-Lücke, 2011). Some hospitals in Japan use a higher reference range of 500-1300 ng/L.
There are instances where the long-established patient-safe ranges are altered in such a way that the level at which the deficiency can be diagnosed and treatment commenced is delayed indefinitely. As previously stated, this causes untold misery and often irreversible damage to patients’ health and wellbeing. This is occurring with the following blood tests: B12, folic acid, ferritin, TSH, T4, T3, uric acid, cortisol, ACTH and antibodies, to name but a few.
Vitamin B12 deficiency, undiagnosed and untreated, can quickly lead to Subacute Combined Degeneration of the spinal cord (SACD). SACD was first identified over a hundred years ago (Russell et al., 1900), and is likely to be an early description of Multiple Sclerosis (MS). Prompt vitamin B12- replacement therapy reverses all the signs and symptoms of deficiency, including the neurological manifestations (Roessler & Wolff, 2017; see also Scalabrino, 2001) – and in our clinical experience, we have observed partial or complete remission from MS symptoms on a permanent basis. MS should be considered a description of the symptoms, and not the final diagnosis (see Chapter 6). It gives no clues as to the course of treatment, whereas vitamin B12 deficiency is much more specific and helpful.
Several of the previously listed misdiagnosed diseases can be prevented by preventative treatment from the beginning of life and at the pregnancy stage of the mother. For example, the mother should be screened for vitamin B12 deficiency, rather than wait until her child develops syndromes or diseases as infant, teenager or adult, which may by then be untreatable.
It is our belief that the NHS should try to proactively overcome diseases such as dementia and cancer by giving the human embryo the best possible chance. Mothers could begin with vitamin B12 supplementation as soon as a pregnancy is planned (see Chapter 5).
The topsy-turvy world of Patient Care Protocols
Some of the difficulties derive, in our view, from the diagnostic method which does not allow for a “whole person” approach.
For example, a patient presents with tiredness, anxiety, low mood and headaches. The clinician is required to use a standardised Patient Health Questionnaire (PHQ 9 form), completed by the patient. If he or she has scored high, the diagnosis of depression is required. The patient accepts the prescription for an antidepressant, which is followed by further mandatory reviews (which will earn more money for a GP practice). Because of the ubiquity of the PHQ 9, the patient’s personal history, family history, and the possibility of other conditions such as a nutritional deficiency are not considered or explored with the patient.
Similarly, many of the syndromes listed above can represent other conditions such as underactive thyroid, B12 deficiency, ferritinaemia, or hypoadrenalism. However, diagnosis of these conditions does not attract achievement points for practice (QOF); the GP’s autonomy as clinician is being eroded because of conflict of interest.
Misdiagnoses made predominantly by secondary-care clinicians (hospital doctors) include CFS, ME, FM, MS, functional paralysis, etc. These are perfect descriptions of symptoms, but it is a smoke-and-mirror effect. Following commencement of toxic symptom-modifying or symptom-subduing medications, every one of these unfortunate patients is being referred to nurse-led no-return clinics, to modify the symptoms, with no expectation of treatment or recovery.
We therefore explore the challenges, and propose a Protocol for diagnosis and treatment in Chapter 3 and Appendix 1.
In 34 years of vitamin B12 experience and observations I amassed a great deal of knowledge which I have aimed to share in many different ways in conformity with the General Medical Council (GMC) guidelines on propagation of knowledge. Since 1981, I have engaged in debates, written to parliament, given presentations and educational workshops and spoken about B12 deficiency at many national and international conferences in Britain, India, Denmark and France, including the conferences of the Pernicious Anaemia Society (see list in Box i-2). My work and two of my patients were featured in the BBC documentary Inside Out broadcast on 31 October 2006.5 In addition to collating two substantial patient surveys documenting the symptoms before and during treatment, and during a period of treatment withdrawal, I have also responded (and still respond) to enquiries from doctors, paramedics and patients all over the world about ways of diagnosing and treating B12 deficiency.
Other important work has included assembling evidence for submission to various regulatory authorities responsible for medical care guidelines. As described above, I conducted a retrospective study (1981-2006) on vitamin B12 deficiency in patients with neuropsychiatric symptoms and prepared a Pathway of Care and Information for Patients for the PCT (Chandy, 2006b). This study was also submitted to the British National Formulary (BNF) board. The BNF has since changed its guidelines, for example to remove any recommendation for use of cyanocobalamin (which it describes as “less suitable for prescribing”(BNF, 2017)), and to increase the recommended frequency of injections from three- to two-monthly for neurological conditions.
In early 2007, I wrote to the BNF editorial board, the House of Commons Health Select Committee and the editor of The Times to alert them to the risks associated with undiagnosed B12 deficiency in expectant mothers and the danger of homocysteinaemia and its consequences. If the mother has undiagnosed B12 deficiency, and is untreated or only given folic acid supplement, there is a risk that she could deliver the child with neuromuscular damage, SACD, congenital abnormalities, tumours (including brain damage) and spina bifida. This can be avoided with vitamin B12 replacement before and during pregnancy (Molloy et al., 2009).
BNF Guidance on treating newborns to eighteen-year-olds with vitamin B12 has since been published (BNFC, 2008). We believe that this came about as a result of our submission with a retrospective study.
I also wrote to the National Institute for Care and Excellence (NICE), in July and September 2014, concerning the lack of NICE Guidelines on vitamin B12 deficiency and hypoadrenalism. I requested a ‘Patient-Safe Guideline’ for vitamin B12 deficiency on the basis that a pathway had been jointly prepared and approved by Easington PCT in July 2006, eight years earlier, based on clinical evidence gathered over 25 years since 1981.
However, at the time of writing there is still no NICE Guideline available. This issue is addressed in Chapter 3.
The B12 Deficiency Support Group
I found that I was not alone. Concerned at the widespread ignorance and dismissal of this condition by the medical profession as a whole and its frequent misdiagnosis, a group of patients suffering from B12 deficiency at our Practice set up the B12 Deficiency Support Group which was later converted to a charity. Its mission is to provide a voice for the sufferers and help them gain the support, guidance and treatment they require.
NHS resources are under strain. Prevention is the key to a cost-effective health service which also delivers quality care for the population and improved economic output to the nation. Prevention requires planning, and the right mechanisms to be implemented in the first place. It has been calculated (figures from 2010) that failure to diagnose B12 deficiency is costing the NHS a minimum of £894 million per year in medical care required, quite independent of the additional social care, the loss in economic output for British commerce, and the damage to people’s lives caused (Minney, 2010).
Our Patient-Safe Protocol
I am recommending tried and tested Patient-Safe Protocols that we have developed for diagnosing and treating B12 deficiency and hypoadrenalism. The respective Shinwell Medical Practice protocols for both conditions are in the appendices for your reference. Discussion and results of our treatments showing the long-lasting reversal of patient’s conditions are found in the ensuing chapters. Other testimonies can be found on the B12 Deficiency Support Group’s website.
We developed this Protocol following the recommendations in Harrison’s Principles of Internal Medicine (Babior & Bunn, 2005; Hauser & Goodin, 2005, 2008; Hoffbrand, 2008) and United Kingdom National External Quality Assessment Scheme for Haematinic Assays (NEQAS) which advise that it must be a clinical decision to undertake a therapeutic trial in the suspicion of cases when a patient presents with classic signs and symptoms of B12 deficiency. See also up-to-date information in BMJ Best Practice (2018d).
The emphasis on the importance of the clinical picture is shown in the 20th edition of Harrison’s which states (p. 701): “An important clinical problem is the non-anemic patient with neurologic or psychiatric abnormalities and a low or borderline serum cobalamin level. In such patients, it is necessary to try to establish whether there is significant cobalamin deficiency… A trial of cobalamin therapy for at least 3 months will usually also be needed to determine whether the symptoms improve” (Hoffbrand, 2018). NEQAS similarly states: “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment” (NEQAS, 2014).
Similarly, the British Society for Haematology states: “The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin (B12) status since there is no gold standard test to define deficiency”. The Society reiterates that “Definitive cut-off points to define clinical and subclinical deficiency states are not possible” (Devalia et al., 2014).
Along with these protocols I advocate a holistic all-person (mind, body and spirit) approach to good medical care in place of the modern tick-box clinically unsafe methods.
The importance of caring for the whole person was brought home to me in my early days as a young medical student when I worked with the Mother Teresa mission among poor fishermen’s families in the slums of Kerala, and later through my experience with one particular patient, Mr Norman Imms.
I had joined the mission after developing vitiligo which had a devastating psychological effect on me and led me to search for answers in prayer and charitable work. Working with poor families taught me to respect the poor, the sick and their suffering. To my surprise, after a few months my own health improved. This experience proved to be very valuable some years later when I was practising as a GP in County Durham and encountered a patient with particularly challenging problems. Mr Imms had been diagnosed as a paranoid schizophrenic manic depressive, also suffering psychosis and psychopathy. He had been removed from many other GPs’ lists but over 17 years he was a daily visitor to my surgery, also demanding night-time consultations. I endured these visits because I felt that someone needed to help this poor man. Eventually, in 1990, I told him that I could not continue his care and that the only way to obtain help was for him to “spiritualise” his illness.
Photo © Norman Imms
He came with me to visit Mother Teresa and then wrote to her and was accepted as a co-worker. He met Mother Teresa 10 times in all. Each time his condition improved. On the last occasion, in 1997 not long before her death, she told him he was cured. This had a dramatic effect on him. When I next saw him he was truly a changed man: his hallucinations and delusions were completely gone. This taught me that a “true physician …must not only heal the body, but also touch the mind, and that the inner spirit of a human being is the most important part” (Independent, 1999).
This miracle prompted me to write to the Vatican to support the case for Mother Teresa to be made a saint. Mr Imms and I also participated in a BBC ”Big Question” debate entitled “Does Mother Teresa deserve sainthood?” in October 2009. Mother Teresa was declared a saint in 2016.
Each of my patients is saying “Doctor, you gave me my life back!” Every single patient has his/her own story to tell about how ill they were when their B12 level was low, and how well they are now with their B12 level normal. I would like to emphasise that it is not me, it is the result of a caring and logical approach to medical treatment in keeping with the Hippocratic Oath, the promise by all clinicians: “May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help”.
There is perhaps no clearer way of communicating the difference this approach can make than by ending this Introduction with these heartfelt words from an appreciative patient:
“Hello Dr Chandy
Not many people have a day in their life that is quite as inspiring, uplifting and as full of love and care as yesterday, but that is what it was for Elise and me.
We wearily wended our way back to Northallerton, and then I drove home back to Sedgefield with more hope in our hearts than we have had for over four years. Thank you does not seem adequate for the huge amount of time you spent with us, and I will never forget the hug you gave me as we departed – a wonderful memory that will stay with me forever.
Today I start getting us well, by getting the various tests put in place, ordering sharps, B12 etc and if you don’t mind I will keep you updated with results etc.
With the greatest respect and thank you to a very special man.”
Pauline Tweddell, 3 November 2016.
|Key dates on the timeline of Dr Chandy's life
Born Kerala, India
Qualified MBBS, Trivandrum Medical College, Kerala University (India).
Tutor, anatomy, Medical College Hospital, Allapy, South India.
Arrival in the UK and employment by the NHS. Prophetic message from the late Professor Jacob Chandy (1910-2007), world-famous professor of neurology at Christian Medical College, Vellore, India.
Worked in paediatrics and general medicine in UK hospitals.
Awarded Diploma in Child Health, Glasgow University.
Appointed General Practitioner and senior partner to Shinwell Medical Practice, Horden, County Durham, UK.
Encountered first case of vitamin B12 deficiency without macrocytosis or anti-IF antibodies.
Successfully treated many vitamin B12-deficient patients.
Purpose-built a modern GP medical practice/nursing home complex in the heart of an ex-mining community, providing 50 new jobs. This won the Royal Town Planning Institute’s Design Award for incorporating innovative adaptations so that the sick and disabled patients can help themselves.
Meeting with Mother Teresa in Denmark.
Primary Care Group Board Member – elected to represent local GPs.
Easington Primary Care Trust (PCT) delivered a blanket ban on my diagnoses of vitamin B12 deficiency in any patient whose B12 level was above the local laboratory threshold of 180 ng/L. The embargo remained in force until 2003.
First draft of a Pathway of Care and Information for Patients regarding vitamin B12 treatment.
2004, 12 February
Easington PCT imposed an embargo on vitamin B12 treatment for new patients. The embargo remained in force, with some modifications, from 12 February 2004 to 3 July 2006.
Letter from Chief Executive of Easington PCT and referral to National Clinical Assessment Authority (NCAA).
Meeting with NCAA.
Joint work with the PCT on updated version of Pathway of Care and Information for Patients regarding vitamin B12 treatment overseen by Dr Jonathan Wallis (Consultant Haematologist, the Freeman Hospital, Newcastle-upon-Tyne). The Pathway was accepted by Easington PCT on 3 July 2006.
My Pathway of Care and Information for Patients was unilaterally rescinded by the new County Durham and Darlington PCT. This second embargo remained in force from 14 March 2007-10 February 2011. The PCT appointed Professor Mike Pringle to conduct an independent academic review of my work.
Professor Mike Pringle’s report entitled Vitamin B12 prescribing in the Shinwell Practice, Horden, County Durham, dated 31 August 2007, highlighting my findings, recommended that the PCT provide ring-fenced funding to set up special dedicated clinics to continue to provide this “effective treatment”. The report asked the PCT to assist the Practice with audits and support the Practice in sharing data and in sharing patients with independent researchers.
2009, 1 August
My Pathway of Care and Information for Patients was partially accepted by County Durham and Darlington PCT which allowed treatment to recommence for some categories of B12-deficient patients.
Received Glory of India Award for a lifetime of service in primary care and work on vitamin B12 deficiency.
Shinwell Medical Practice develops its own Protocol for excluding B12 deficiency (Megaloblastic anaemia/Pernicious anaemia) from adult and child presentation based on the former Pathway of Care and Information for Patients.
The Protocol is given in full in Appendix 1 of this book.
Retirement from the NHS.
20 December 2023
After 8 years of retirement, actively promoting awareness of B12 deficiency and the support group and writing this book, and then moving into the background, Dr Joseph Chandy has passed on and risen to the heavenly choirs. He's greatly missed
 The National Clinical Assessment Authority (NCAA), renamed the National Clinical Assessment Service (NCAS) in 2005, works to resolve concerns about the practice of doctors, dentists and pharmacists. See http://www.ncas.nhs.uk/about-ncas/
 The BBC documentary Inside Out, featuring an interview with Dr Chandy, was broadcast on 31 October 2006. (Jackson, 2006)
 Professor Mike Pringle CBE FRCGP was President of the Royal College of General Practitioners (RCGP) 2012−2015. PRIMIS is a University of Nottingham specialist organisation which provides advice on the capture, management, extraction and analysis of primary care data.
 Registered charity number 1146432. Further information is available from http://www.b12d.org.