Very sad news of the death of Dr. Chandy, who was a hero for his B12 deficient patients .
He wrote , with Hugo Minney , a great book “Vitamin B12 deficiency in clinical practice”. ( Doctor , you gave me my life back)
He stood up to the medical authorities in order to treat his B12 deficient patients , at cost to himself . A true hero . We salute him .
Hi Wedgewood
Thank you for sharing the sad news.
A saviour lost on a saviour day. Bless him and condolences to his family.
🤗🤗🤗
If you would like, you can email the BBC programme called “ Last Word” , and request a mention of Dr. Joseph Chandy. I think that would be a fitting memorial to him , if he were featured on that programme .
lastword@bbc.co.uk
State why you feel that Dr. Chandy deserves a mention on that programme .
Best wishes .
I had the pleasure of speaking with Dr Chandy quite a few times when I first got sick. He offered to treat me where he lived in County Durham, sadly I was too sick at that point to travel and Dr Chandy lived quite far from me. Instead he would tell me lots of stories over the years, he lived a very exciting life and had a tremendous amount of knowledge. He was heartbroken when his funding was cut and he could no longer provide B12 and the needling equipment to those who suffered. Dr Joseph Chandy saved my life. I would not be here today if it was not for him. I was let down by my doctors who would rather brush my symptoms off as anxiety and hypochondria. I'll never forget the phone conversation with Dr chandy who told me that my level was seriously low and that it wasn't all in my head. He wasted no time in getting me on injections. Dr Chandy told me that my first injection of B12 would feel like the breath of life was coming back into me and boy was he right. he phoned me at 9 o'clock in the evening on his personal landline, constantly reassuring me. I will never forget the kindness he showed towards me.
Dr Joseph Chandy saved my life and countless others, he will never EVER be forgotten.
Sleep well Dr C, you will never be left behind. You've earned your rest.
My deepest condolences to the Chandy family and all those friends and patients that were honoured enough to be in the presence of such a remarkable man.
Like you always said ''I will pray for you and you pray for me.'' and now I will say that I will pray for your family and legacy to live on in all of us. 🙏
Wow. I've only heard about him. What a Wonderful man. That's a great story. He was a hero. May he rest in peace.
I had never heard of him, he sounds like a wonderful man. What a loss and an inspiration.
If you would like, you can email the BBC programme called “ Last Word” , and request a mention of Dr. Joseph Chandy. I think that would be a fitting memorial to him , if he were featured on that programme .
lastword@bbc.co.uk
State why you feel that Dr. Chandy deserves a mention on that programme .
Best wishes .
Sorry, I'm only just seeing this message now. Is it too late to do that? I would love to email over for Dr C
so sad what a huge loss to humanity he was such a nice men,I had the pleasure of chatting to him via email when I first started all the research into p.a and at the time I was being investigated for Addisons ,he gave me some great advice and I was so grateful to him. May he rest in peace with the knowledge that he changed so many peoples lives for the better..
Ty wedgewood. X
His book was instrumental in me starting on a path to discover a way to not being one of those that cannot heal and can only suffer.
He accomplished so much. I cannot help but wonder what he could have accomplished without the powerful physicians hindering him every step of the way.
Ya did good!!!!!!!!!!
If you would like, you can email the BBC programme called “ Last Word” , and request a mention of Dr. Joseph Chandy. I think that would be a fitting memorial to him , if he were featured on that programme .
lastword@bbc.co.uk
State why you feel that Dr. Chandy deserves a mention on that programme .
Best wishes .
sad news to hear…. What a great man and has helped so many . My condolences to his family friends and patients.
If you would like, you can email the BBC programme called “ Last Word” , and request a mention of Dr. Joseph Chandy. I think that would be a fitting memorial to him , if he were featured on that programme .
lastword@bbc.co.uk
State why you feel that Dr. Chandy deserves a mention on that programme .
Best wishes .
changed my life and countless others - thank you
May he rest in peace with our thanks.
He helped me a lot. I spoke to him on the phone twice when I still didn't feel well on my B12 injections, and he pointed the way to a thyroid problem that went alongside my pernicious anaemia. I also had email conversations. Nothing was too much trouble.
He did amazing work treating patients when he was a GP but sadly was told to stop prescribing B12 for fatigue. I believe he nearly got struck off. I will be forever grateful to him for his help - he also briefly told me about cortisol. I also spoke to his daughter a few years back as she said he saved her life in regard to his understanding of cortisol. She was trying to help me. I wish I had been able to see him in person.
Can you share more about what information he gave you that led to your thyroid diagnosis. So interesting, esp, since this and b12 deficiency often occur at the same time but unrelated
He asked me for any test results of TSH and FT4 and also cortisol - I didn't know how important that was. He told me B12 deficiency and hypothyroidism often happen together and told me B12 deficiency is a polyglandular disorder.
I sent him my results with a TSH of 4.6 and he said I had underactive thyroid and the GP should commence levothyroxine at 25-50mg daily and review in a month. (Looking back on my records my TSH had been up and down to 5 and my FT4 low since 2002 when I moved to where I live now. I don't know what happened before that. I think things changed with my third child, I had many symptoms, but knew nothing at that time.
That was the start of my journey after speaking with Dr Chandy as the GP did not prescribe, although I found out years later that in my online record the GP suggested I could try levothyroxine as I had consistently low FT4. I don't know why I never got this. I saw two endocrinologists - the first one in July 19, no joy - said fat, pregnant women in Italy get treated! Talked about his wife and how he has to sort things out with the children when he gets home. Totally misogynistic. Referred me to a psychiatrist. I saw a private endo after that, but as he also worked in the NHS I got nowhere as the first thing he said as I walked through the door was, 'And what makes you think you need to see an endocrinologist'. And that was before I had even sat down!
It was from finding this group and the help I got that led me to self-treat. I bought from Turkey. Eventually, I saw another endo privately and he wrote to my GP and I had the levo taken over by the GP but still get T3 privately.
I find sorting out health takes a lot of time because doctors don't understand enough and now I have grandchildren with things wrong as well as my daughter, and I try and help and look into things. It can get stressful doing things for several people. At least though, I found out what was wrong with me thanks to dear Dr Chandy. I am still battling cortisol with a consultant.
Hi, I wonder why you say that the two are unrelated. Anti gastric parietal cell antibodies are common with autoimmune thyroid disorders which will result in lower B12 absorption due to reduced/loss of intrinsic factor and stomach acid. Also Dr Chandy told me that a B12 deficiency can affect the pituitary myelin and disrupt signalling, resulting in secondary hypo or sometimes hyper. Everyone in my family that had/has a B12 issue also had/has a thyroid disorder of some type. Often only the thyroid gets diagnosed though. Best wishes
very sad loss of an Inspirational man who selflessly helped so many. My condolences to his family and friends.
Such a lovely man. He tried to help my brother and did his best to offer to all the knowledge he had gained on B12 deficiency and Pernicious Anemia. A truly great selfless man. RIP Doctor.
Thank you ever so much wedgewood for this sad piece of news. He was an amazing man and did so much pivotal work regarding vitamin B12.
My love and thoughts are with his family. It is a great loss.
xx
hello wedgewood, I am truly saddened to hear of his passing. A much valued person.
My Condolences to his family. His book stands in easy reach on one of shelves in my bookcase. ♥️
He was a lovely man. Had a consultation at his home with my family. He was so passionate about B12 deficiency and the poor treatment patients were getting. May he rest in peace.
Very sad news , I watched his video clips years ago when I was diagnosed , he will be missed.
I am so sad, I had an awful feeling the day before Christmas Eve that he was no longer with us. I owe him my life too. I was so sick. I emailed him in desperation in 2018, I could not get my doctor to listen to me (Pernicious Anemia runs in my family from the old days). Even though my blood cells had been enlarged for 10 years and I had lost all feeling in my legs, feet, toes and fingers. I had such bad ataxia it was like I was walking on a rocking boat. All my doctor wanting to think was that I was a secret drinker. I could not even tolerate the smallest amount of alcohol. My blood results showed 600 for B12. I was one of the unfortunately ones that it was just pooling and not getting into my cells. The next day he rung me! Such a kind man. He said to me and I quote "We will get you well". I sent him 15 years of copies of blood tests. He went through them all and diagnosed me with dangerously low b12, under treated thyroid, I was on 50mcg of levothyroxine for 18 years, and low adrenals. He got me on B12 injections right away, told me to slowly up my levothyroxine to 100mcg and to take low dose cortisol for my adrenals. He always said I will pray for you and please pray for me. He was a deeply religious man and cared about humanity. May he rest in peace.
Yes, he will be deeply missed, a proper GP who really did want to tackle the sufferings of his patients. I hope and pray a time will come when he is properly recognised for his work in this area. When he says increase your levothyroxin did you get that done through your GP or source it yourself?
I tackled my doctor after speaking to Dr Chandy. My doctor is no mean feat. I said to her you left me on 25mcg for 7 years and only after I said I am so sick did you raise it to 50mcg for for the next 10 years. Because my TSH is 4.4 you said that is ok as it is under 5. I told her I should be at least a 1 to be adequately medicated on T4. I showed her Doctor's Chandy's email that said I am woefully undermedicated and should raise to .75 and then 100. She did follow this. I have now been sent to an Endocrinologist who said my T3 of 4.2 is too low and has started me on 10mcg of T3 and cut down my T4 as that was showing over range. I guess it is just pooling in my blood like the B12. I have started to have a little success with T3. T4 levothyroixine feels like it poisons me all the time 
She still refused B12, I sourced my own and she let the practice nurse show me how to inject into the thigh. I started to feel the difference within half an hour of that very first injection.
My surgery no longer tests for T3 or T4, I was tested recently and my TSH was 3.28 and I take 50 levothyroxin. I would assume I would not be taking correct dosage? I SI for B12 also, I told my doctor because I want it on my records. He put it there but with caveat that he could not sanction it. There is on going discussion between us, he wants to see the new guidelines out in March.
3.28 is not good You would be underdosed. I learn that after levo if properly dosed we should be at a one or just under. As they all seem to run side by side B12, thyroid and also adrenals, you might benefit by paying for a private home blood test, that measures free T4, free T3, TSH and thyroid antibodies. Then march it along to your doctor. Or ask your doctor for a referral to a NHS endocrinologist. Have you had an NHS early morning cortisol test too? You can ask your doctor for one.
Thanks for sharing. Very informative
I have not made acquaintances with this wonderful man only by reading and using his advise in the book he wrote. Your story has a resonance with mine . My B12 in the end was 200. However when I found myself in hospital as result of terrible migraines my neurologist realised quickly what was going on. She had me in CT/ MRI scans, I had nerve conduction and various blood tests. Apart from many other symptoms, I had no feeling in my legs from knees down. I had numerous falls which I thought was as result of my terrible migraines…. NOT…..I was lucky …. I had a neurologist trained in Poland and Sweden, where doctors are trained to look at vitamin and mineral deficiencies. She started me on EOD Hydroxocobalamin injections , it went on for months , my migraines were the first to reduce and if I do get the odd one they don’t last more then 12 hrs and are less painful, no need to lie down in a darkened room with a bucket next to the bed. I came off all medication I had been prescribed over the years. The feeling in my legs did come back , it had not been guaranteed but it took 6-12 month at least. Then eventually I was put on monthly injections or sooner when necessary. I was fine for quite awhile until a GP , after we moved to Colchester, decided I shouldn’t have them every month and put me on 3 monthly. I asked to be referred back to my neurologist but was ignored. How can that be that a mere GP can overrule the advice made by a consultant/ neurologist?? Any way things went bad since that decision, my migraine came back , I was offered medication for that yet again which I refused. I moved again and eventually spend a lot of time in the Netherlands. I found privately a good doctor who put me back on loading injections and she then taught me to inject myself! … I was free, I started to manage myself, never looked back. It’s who you find on your path through life that can make the difference…. Dr Joseph Chandy was such a person who touched so many lives and made the difference . I have his book in easy reach on my bookshelves. May he rest in peace.
This is very sad news
He gave me back my life and was so generous with his time He gave me confidence to challenge my GP and take control of my own B12 recovery
A truly brilliant doctor and an incredibly nice man
Such a generous caring man, who diagnosed me with with b12 deficiency and saved my life.
agree wedgewood , praise & thanks Dr Chandy. A special Human Being.
I cannot add much more than what has been said by so many others. His sacrifice was immense and he paid a heavy price for going against the established medical doctrine. He certainly is a special soul. But he lives on in each of us who have somehow survived and, through his work, will continue to touch many lives in the future. I do give his book to my doctors. Maybe if each of us creates a small ripple in the B12 universe it will become a tsunami of change???
Rexz
I gave a copy of his book to my surgery,bthey said they would put it in the staff room, don't know if it did any good. I gave a copy to a friend but her husband still ended up in a care home, I don't think she bothered to read the book.
Yeah, unfortunately, there are those doctors that cannot be fixed. Some of my doctors are the same. But I've two who I know have read the book. All we can do is keep trying. 🙏
Yes, that is what I say. So many people don't listen to me, even close family and friends when I can see something is wrong with them.
mountainice,
Please consider sending a copy of his book to your nearest University which trains Medical students.
Dr Joseph Chandy has left a legacy, his work, his ideals and his passion. I will continue passing it on. He was devout in his faith and his humanity shone through.
When we are dead, seek not our tomb in the earth, but find it in the hearts of men.
🐳
My grandson is training to be a doctor - well, he has done Medical Physiology and hopes to go on to Medicine. I am always telling him about B12 deficiency.
It is great that you are educating your grandson. He is ONLY 1 person but he may discuss it with his peers. A library is visited by hundreds and thousands of people.
There are over 8,000 P.A.S. members, if all of us donated one book to a university library on P.A./B12D with a letter to the Dean of why we are donating it. Then maybe we will peak some more interest.
Some people earn big money being ‘influencers’ on the internet. They have millions of ‘followers’. 😉
I have already given out 3 so I don't want to give out any more! I actually gave one to my osteopath son, but he is fairly clued up on everything anyway. He is more like a doctor than just an osteo.
Of course mountainice,
3 is plenty and great to hand Dr Chandy’s work down. 😘
The neurologist who told the surgery to change my injection schedule to 3-monthly definitely doesn't understand enough, even though I have Pernicious Anaemia and neurological symptoms.
Yes Wedgewood very sad to hear, Dr Chandy was the first book I read, I was blown away with what he had to put up with for his beliefs to help us in our deficiencies, may he rest in peace.
Hero. Absolute hero.
Such sad news. I had the pleasure of speaking with him a few years ago and his advice was spot in. A sad loss of someone who was brave enough to think outside the box and always thought about others.
Thank you Wedgewood for passing on this very sad news. I had heard of him but not read his book. I have just ordered it. So sad, we can ill afford to lose wonderful GP’s like him. Sympathy to his friends and family and his many patients too.
We will break crossed needles in his honour.
A crusading light in the darkness of medical ignorance about PA has gone out, and who will be our standard bearer now?
But one day, surely, he will be vindicated, and those who hounded him will be forced to recant.
May that day come soon.
Thank you for sharing wedgewood, although it is sad news.
His book has been such a great help to me too. May his knowledge spread throughout the medical community, it would save so many of us so much suffering.
Thank you for sharing this sad news wedgewood . An inspirational man who had the courage to stand up for his beliefs and the heart to see the people behind the symptoms.
Really sad news. I was never in direct contact with Dr Chaney, but his research knowledge and resources were the best and his website so easy to utilise and make sense of what could be going on with me and all my unexplained symptoms.RIP to a medic who was more concerned with is patients than following the tide.
Thank you for your post Wedgewood. Such a kind man. I have his book close at hand, full of notes, and he emailed me several times in 2022. We will try to continue to pass on his knowledge and care and he will not be forgotten.
If ENOUGH people contact Radio 4's Last Word series, . . . it MAY be possible to get a tribute paid to Dr Chandy, . . . - just a thought ! Will you HELP, . . . please? 🔍 for 'Last Word' on BBC.co.uk/radio4 - I for one, believe he DESERVES a plethora of such tributes, . . . !!! ✊ 🙏 ✌️ ✊ 🙏 ✌️
Funeral details on a separate thread: healthunlocked.com/pasoc/po....
AtB,
Sid 😐
Tues 2 January 2024, . . . - as I count my 'blessing' to have belatedly understood . . . the STILL too poorly understood 'B12d' issue !
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Great idea Sid _Arthur! Will do ! But I think it would be great if you put up a new post on the forum with this information about “ Last Word “ on BBC radio 4 . I’m afraid that I don’t know how to do it , being a total idiot regarding putting up links . Not many members will see this post I feel . Thank you for your brilliant idea .
Dr Chandy deserves this .
I have sent an email to the programme ,telling them that Dr Chandy would be an ideal subject for their programme
lastword@bbc.co.uk
I’ll put that up on the forum and hope that many members will see it . You could put up a post as well The more publicity the better !
. . . I'm pleased you've ACTED in the early hours of today, after my reply of even earlier hours.
The 'Last Word' contact us page link is : bbc.co.uk/programmes/articl... . . . - & yes, it may be better repeated on a new, separate thread too !
And, as you found, the prog contact email address is simply: lastword@bbc.co.uk
Anyone already in touch with others in the 'B12 advocacy' world ( - not least Sally P, . . . & Tracy W.), . . . may like to inform them of Dr JC's passing away ??!
AtB,
Sid 😐
Tues 2 January 2024, . . . - as I count my 'blessing' to have belatedly understood . . . the STILL too poorly understood 'B12d' issue !
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Perhaps an idea, a print out of all replies / condolences seen underneath and send to relatives? He clearly helped many of us in one way or another!
Such a wonderful man and very sad news. Dear Dr Chandy will be greatly missed. I took your advice and emailed last word. There is also an online book of remembrance - found the link is in this article ;
Dr stopped B12 injections. 
JFK - Kennedy and B12
Can a very high B12 blood test result also mean you are deficient somehow?
