Giving You Back YOUR Life

B12d Charity Support Group Blog

  • 08
    MAR

    NICE Guidelines for B12d published 6 March 2024 - Guidelines and our response

    After months (some would say years) of careful lobbying, NICE, the National Institute for Health and Clinical Excellence, has prepared and published now guidelines for the diagnosis and management of Vitamin B12 deficiency (B12d).  NICE guideline [NG239] - 'Vitamin B12 deficiency in over 16s: diagnosis and management’ was published yesterday, Wednesday 6th March 2024 https://www.nice.org.uk/guidance/ng239/resources/vitamin-b12-deficiency-in-over-16s-diagn...

    Read More

  • 17
    MAY

    Case studies from 2014 uploaded

    Way back before we thought of publishing a book, we created a booklet of case studies.  Although many of the case studies have been republished in the book, you will still find some of these interesting. I haven't managed to make each one a separate page on this website so I've uploaded the whole book.  I hope it is useful http://www.b12d.org/book/casestudies (you reach it by clicking on the "Obtain Book" and selecting from the drop-down)

    Read More

  • 04
    MAY

    May 2020 Newsletter

    The newsletter is available as a PDF, with an article about the discussions we had at the April meeting.  Please join us for the May meeting(s)B12d Newsletter May 2020

    Read More

  • 23
    MAR

    Coronavirus and meetings moved online

    Vitamin B12 is vital for the immune system.  This means that many of the people who suffer, who come to hear Dr Chandy and speak to Dr Chandy, are at risk of weakened immune systems and of picking up forms of colds and flu that run around this time of year.  A particularly dangerous virus is the Coronavirus, which leads to a collection of symptoms called COVID-19.  It's worse than SARS (bird flu).  It's worse than MERS.  It's possibly as bad as t...

    Read More

  • 04
    AUG

    What's in Dr Chandy's Book?

    The book distils 46 years of clinical practice as a GP in this part of County Durham, looking after many generations of the same family.  During that time, Dr Chandy observed that B12 deficiency could occur, and be cured, in people who didn’t have macrocytosis (following the presentation of his observations, university researchers have confirmed this and it’s now common knowledge) B12 deficiency is far more widespread than previously thought – con...

    Read More

  • 09
    JUL

    Books for Doctors Scheme

    Are you a doctor?  Would you like a copy of the book "Vitamin B12 deficiency in clinical practice"?  Would your doctor like a copy? The B12d charity will send a copy of the book to any clinician who asks for one (in UK, at least).   To receive a copy, please send us: Your name: Your registration number (GMC/ NMC/ HPC): The postal address you want it sent to: Phone number (required by Amazon in case of a problem with delivery) Request via an email to n...

    Read More

  • 21
    JUN

    B12 Foreningen Norway

    This is a B12-union that has been established in Norway as a result of poor treatment and a lack of knowledge among many doctors concerning B12-deficiency.  The union was established in late March 2018. Our main goal is to raise awareness, educate those who have, or think they have B12 deficiency, to be a support group, and to follow science and new articles that are being published. That also means to ask questions regarding what is being claimed. We have already c...

    Read More

  • 07
    MAY

    Vitamin B12 deficiency in Clinical Practice

    At last - the book "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom is available from Amazon. The book describes Dr Chandy's findings over 46 years of clinical practice, working as a GP in Horden, a village near Peterlee in County Durham.  During that time, Dr Chandy looked after an average of 5760 people, many of whom had lived in Horden their whole lives, been born, grown up,...

    Read More

  • 14
    APR

    Vitamin B12d Wordle

    As the book “Vitamin B12 deficiency in clinical practice” nears completion, I thought you might like to know what’s going to be in it. Some of the areas that are covered are illustrated in this Wordle (made from the index to the first proof copy). What are the first words in this Wordle that catch your eyes? Is it “Intrinsic Factor” – so vital vitamin B12 absorption, and so often used as a marker to diagnose vitamin B12? It’s a d...

    Read More

  • 27
    MAR

    B12 deficiency in Clinical Practice

    If you are sharp-eyed, you will have seen photographs of a first proof of a book, by Dr Chandy, called "Doctor you gave me my life back - B12 deficiency in clinical practice". This is the result of about 7 years' work, and summarises over 40 years of Dr Chandy's clinical practice treating over 1000 people with B12 deficiency over a long period. Why is it different? There are a number of books about B12 deficiency.  Israel Chanarin wrote in the 1960s and 70s about "M...

    Read More

  • 31
    DEC

    Getting Started with B12 deficiency

    The big problem with B12 deficiency is that the symptoms are really common, and could be caused by something else instead. Fatigue or tiredness If you don’t sleep, you will feel tired. If you are stressed, then you won’t sleep and you will feel tired. But for some people, there’s nothing to be stressed about and they spend hours asleep, and still wake up tired; or they can manage in the morning but are really tired by early afternoon. Have you checked w...

    Read More

  • 25
    NOV

    Removing Toxins - Wine, Women and Song

    Vitamin B12 is vital for animal life - without it we simply can’t function. And for animals, we have to get it from an outside source - from microbes which make it. For humans, this means we need to get our B12 from an animal that does use microbes to make B12, such as cattle, sheep, and other sources of red meat and dairy products. It isn’t as simple as just eating enough red meat. It needs to be the right kind of cobalamin (a generic name for the family of...

    Read More

  • 20
    NOV

    Neuropsychaitric symptoms - PNS

    Overwhelming fatigue; pins and needles; numbness or dead spots on hands/arms or feet; twitches or loss of power in limbs (especially if one-sided rather than symmetrical). Ringing in the ears; eye twitching (nystagmus) or unable to focus. Persistent cough. What do all of these have in common? They are all conditions connected with the peripheral nervous system (PNS). The PNS has two parts - sensory and motor. The sensory part lets you feel things - if you hold something ...

    Read More

  • 16
    JUN

    Edinburgh Half Marathon - THANK-YOU

    Thank-you to everyone for your generous support! My wife Alison and I spent the last Bank Holiday in May in Edinburgh for the Edinburgh Marathon Festival.  Early on the morning of Sunday 27th, I set off through the cold sea fret (technically a haar) from our AirB&B to find the start of the Half Marathon.  The buses were full, so I walked the couple of miles with a nice group of Portuguese who didn't have exact change for the bus, and we talked. Wow it was c...

    Read More

  • 02
    APR

    Does B12 deficiency affect blood pressure?

    There was a recent article on livestrong.com confirming that blood pressure is sensitive to B12 deficiency.  But there were a few inaccuracies, so I thought I’d update the information. High (and low) blood pressure are caused by a number of factors, the most obvious of which are the state of arousal (meaning any intense emotional state, and most usually in humans, anger or stress) and the balance of electrolytes.  The state of arousal causes the muscles o...

    Read More

  • 04
    MAR

    Where to get help - Protocols for diagnosing and treating B12 and hypoadrenalism (Addison's disease)

    How do you check if you have B12 deficiency? The best way is from Signs and Symptoms, ie what are you suffering from?  I'll come on to the blood test later.  The full Protocol for Diagnosing and Treating B12 Deficiency can be downloaded by clicking on its title, but if you are just looking for the short Appendix A (many people use this to record their daily symptoms to check how soon they need their next injection) then Appendix A - 1 minute check&nbs...

    Read More

  • 26
    NOV

    I feel terrible AFTER my injection

    Some people complain that, at just the time when you think you should be feeling better, you feel terrible.  It's usually during the loading doses (the first few days or weeks of starting treatment, after diagnosis). How often does this happen? We think about 1 in 10 people get this effect.  So you will hear about it if you read group chat like Facebook New Beginnings, but it's not very common. Most people affected suffer from skin rashes.  Some do ge...

    Read More

  • 29
    OCT

    Multiple Sclerosis - does it exist?

    Multiple Sclerosis - a typically incurable and fatal condition, characterised as either progressive or relapsing/remitting, characterised by muscle wasting and neuropathy. Around 2 in 1000 people suffer from this condition.  It's diagnosed by finding the scleroids, or plaques, in the spinal cord or brain (or both), previously at autopsy (which is a bit late!) but now by MRI scan. But we've seen this before! First let me get this straight.  We at B12d.org recogn...

    Read More

  • 25
    JUL

    Worried about Cancer?

    Dear Stephanie You wrote to us about a Journal article from 2009, which implies that in two academic studies from Norway, there was a higher incidence of cancer in the groups of patients receiving folic acid and also folic acid and B12. We know from our own patients that B12 actually protects against cancer and may even cure it, so this finding surprised us.  However it also surprised the authors, who are quick to point out that the preventative effect of B12 in pro...

    Read More

  • 17
    JUN

    B12d Pens, Key Rings and Badges

    We used to send a lapel badge for B12d to every person who received B12 from us.  But it took a lot of packing and checking so we stopped. But you can still get the lapel badges - click across to PrintStitchorDye.com to show your support for us!  

    Read More

  • 21
    MAY

    Start Early for best results - B12 in pregnancy

    Is B12 safe? Actually it's one of the safest of all the nutrients.  A European Commission study to identify the upper limit for vitamin supplements found an upper limit for every other Vitamin but declared that B12 is safe at any level.  It's safe in your diet, it's safe when taken as a supplement, and it's safe hen recorded in the blood. Can you take B12 during pregnancy? This is the important question.  As you kno, with most supplements, you need permiss...

    Read More

  • 02
    APR

    Fibromyalgia and Vitamin B12

    Fibromyalgia - all over body pain and a painful sensitivity to pressure (touch) - is an awful condition.  Even worse, it's often accompanied by other conditions such as extreme fatigue, trouble sleeping, 'fibro-fog' (memory and concentration problems), Lupus, ME and CFS, Migrines, yeast infections, more frequent in women than men.  Readers of this blog will instanty recognise many of these symptoms as they sound a lot like Vitamin B12 deficiency symptoms. Well,...

    Read More

  • 12
    MAR

    How much B12 do I need?

    So I have symptoms of B12 deficiency, and to me they are devastating.  How much, and what sort of, B12 do I need to take? Why some people have B12 deficiency and some don't B12 is used in the body in huge quantities.  It doesn't change, it's a Co-Enzyme or Catalyst or Transporter, so on the whole you don't use any up.  But it seems to get deactivated and needs to be re-activated.  We believe this process happens through entero-hepatic circulation, whi...

    Read More

  • 05
    MAR

    Can B12 cure cancer?

    Cancer - the dreaded C word! And the question whether Vitamin B12 has anything to do with it? Let's look at what we know: Vitamin B12 is needed by cell DNA to switch off genes that aren't needed right now most cells only need 1 or 2 genes switched on to perform their function. eg thyroid cells need the gene to produce thyroxin switched on, and nothing else. so they need lots of B12 to keep everything else switched off. poisons like cigarette smoke and alcohol take B1...

    Read More

  • 02
    FEB

    Talk to Dr Chandy's team (not clinicians)

    Dr Chandy has 50 year's experience as a doctor, and 36 diagnosing, treating and understanding B12 deficiency.  Due to some unfortunate circumstances (explained in the forthcoming book), he's also worked with patients who have had B12 supplements withdrawn or restricted. If you want to understand your symptoms and where they are going, and what is the likelihood that you have B12 deficiency, then please fill in the Symptoms Diary and email the notifications@b12d...

    Read More

  • 15
    JAN

    My Health Checks and Symptoms Diary

    We've asked everyone to keep your symptoms diary up to date.  Here's how you do it. The "My Health checks" area has your previous records.  You add to them by using the  "Run B12 Calculator" which creates a new health check. Once you have completed one, you'll see it in the "My Health Checks" area.  When you do this every week (or every day, or however often) you can see a history of your symptoms and scores with dates attached, which you can then com...

    Read More

  • 28
    AUG

    New instructions for injecting from ampoules

    Methylcobalamin injections from ampoules 5mg/ml Hydroxcobalamin injections from ampoules 1mg/ml I have now re-written the instructions.  Please download the instructions and let me know if they are easy to follow or confusing. Hugo

    Read More

  • 17
    JUL

    Methylcobalamin STINGS on injection

    The last batch of methylcobalamin caused stinging when injected.  We suspected that this was due to being manufactured in sterile water instead of sterile saline, and one of our recipients has come up with an excellent suggestion, to add sterile saline (0.5ml/ml) to the injection which buffers it and makes it not sting any more. Thanks

    Read More

  • 26
    JUN

    How BREXIT affects B12

    You are probably sick of hearing about Brexit, but it does affect us directly. Exchange rates have tanked.  All of the B12 we get has to be imported, and we don't hold any stocks, so the cost to us has immediately risen by 10%. However it gets worse.  A great many people have noticed that you can't get methylcobalamin for injection in UK, and we can no longer import methylcobalamin from Europe into UK.  The pharmaceutical industry has a stronger hold over ...

    Read More

  • 27
    APR

    USA supplies back on stream

    Our favourite readers will be delighted to hear that we have had a batch of 96 bottles from USA.  This is the preferred form for may of you - a bottle of 10ml or 30ml with a rubber bung in the top.  They are also more cost-effective than the Arnika stocks (please note, a 30ml bottle of 1mg/ml from USA is more expensive than 10*1ml ampoules - per dose the USA stocks are much cheaper). the new supplier, also from Texas USA (the previous one still hasn't got ...

    Read More

  • 17
    APR

    How to take B12

    So you've checked out the Symptoms Checker http://www.b12d.org/admin/healthcheck/diagnosticcalculator and worked out that you are B12 deficient.  What do you do then? First, try out oral supplements (sublingual lozenges or tablets).  It's most likely that you aren't getting B12 in your food, since our modern farming and food processing methods mean that there's far less than there ever was.  Unfortunately we've managed to raise awareness so ...

    Read More

  • 28
    FEB

    Dr Chandy's latest findings - Multiple Sclerosis (MS) - is there a cure?

    Work never stops, even though Dr Chandy is now 74.  He'll be presenting his latest evidence that there is a form of Multiple Sclerosis, which we term MS-like presentation, which responds well to B12.  The symptoms remit whilst the person is receiving treatment, consistently.  On the few occasions where we have not been able to keep up treatment or the patient themselves has stopped taking treatment, symptoms relapse which is a shame, but it shows that the ...

    Read More

  • 19
    DEC

    Best Wishes for Christ's Mass

    Here's our Christmas Card design.  Today we sent printed cards to the most generous of our donors this year, so you should get them early next week.  With all best wishes! 

    Read More

  • 24
    NOV

    Support Group in Gloucestershire

    Sue Childs writes I will be setting up a support group for the PAS in Gloucestershire. First meeting is 27th February 2016 at Dursley Library Dursley Glos. 10.30 to 12.30 Details will be on PAS website in near future. If your members wish to attend they are welcome and can contact me via Gloucestershire.pas@gmail.com Regards Sue Childs

    Read More

  • 12
    NOV

    My GP Says it's all in my head

    [taken from a letter written to a patient]Will you be upset if I agree "it's all in your head" and then explain why?  B12 is vital for the development and maintenance of the myelin sheath around nerve axons, and there's a lot of myelin sheath around the billions of axon connections in your brain.  So in the absence of trauma, the most likely cause of anxiety and depression is probably nutritional, in other words, a lack of B12.  Want to put it right -...

    Read More

  • 25
    OCT

    The FAQ pages

    Please do check the FAQ pages for updates - I've just added an update explaining how to get methylcobalamin for injection as this is the most common question at the moment. Thanks

    Read More

  • 16
    OCT

    User Settings - Mail Preferences

    Dear everyone Do you want to know whats happening with your charity?  Do you want to know when we hold coffee mornings, to get the newsletter, to get alerts? Well I've just been on our website and created a sample user, and I found that it says you don't want to receive any of this information by default. So when you create an account, or when you go into your account to make any changes, if you would like the news then make sure you tick the EMAIL LIST box to a tic...

    Read More

  • 08
    SEP

    FAQ - I'm thinking of starting my own coffee morning/ web site/ event

    QUESTION: Horden in County Durham is a long way away - I'm thinking of starting my own event. ANSWER: We'd be delighted to help you set up.  We haven't produced lots of printed material yet, although we do have some - copies of the protocol, a booklet of case studies, we have pens and supermarket trolley coins, and of course teddy bears, to help you spread the word. RELATED QUESTION: I'd like to start my own web site ANSWER: This is where it gets more controversial....

    Read More

  • 07
    SEP

    Newsletter Summer 2015

    Dear everyone Here's our Summer 2015 newsletter

    Read More

  • 07
    SEP

    Peterlee Carnival Sat 5 Sept 2015

    And the winner of the Peterlee Carnival teddy bear is a very small person Harley.  Here's his big sister accepting on his behalf, because he's sleepingoff the excitement. The B12d charity stand is proving to be a huge hit.  Supported by the Big Lottery and County Durham Community Foundation (and of course our many donors), the stand has been able to raise awareness of B12 deficiency through lapel pins, pens, trolly coins and the ever popular teddybear raffles.

    Read More

  • 21
    AUG

    Pirates in the Park Thurs 13 Aug 2015

    Pirates in the Park a fabulous family day out hosted by Horden Parish Council. Our B12 charity had a stall in a prime location amongst other community groups. The weather was fabulous which brought out local residents and the surrounding communities. Everyone who knows or are aware of B12 deficiency paid us a visit. We had a beautiful teddybear dressed in a tee-shirt our (new) B12d logo on the front and a skull and cross bones on the back, he had a pirate hat and an...

    Read More

  • 14
    JUN

    Frequently Asked Questions, FAQ

    Everyone asks different questions.  But a lot of people end up having the same basic queries. With the old web site, you sent me an email (to notifications@b12d.org) and i answered each email individually.  As you can imagine, this was both time consuming and slow for you. so we're trying to gather together all of the questions you ask, and put them into a section called FAQ, so you can find the answers you need straight away. It will take time to build a datab...

    Read More

  • 09
    MAR

    Forums and Facebook Groups

    Many people ask if they can join our forums.  We don\'t have separate forums just for us, we recommend that you join one of the Facebook groups.The best group to join is New Beginnings.  This is a private Facebook Group, so you need to search for it and then apply to join.  Unfortunately when we had public groups, people would join to shout about something and wouldn\'t shut up, so the forums have to be private so they have a way to remove an unruly member...

    Read More

  • 09
    MAR

    Come along and support our coffee mornings

    Do you feel alone in your suffering?  Well that makes lots of us.  Isn't it silly to feel lonely, when other people feel lonely too!That's why we run coffee mornings, once a month on the second Tuesday of the month 10:30 - 12:00.At the moment all of our coffee mornings are held in East Durham, alternating between Horden Welfare Club in Horden, Peterlee (North East England, UK) and East Durham Trust at Community House, Yohden Rd, Peterlee (North East England, UK...

    Read More

Are you B12 Deficient? Use our diagnstic calculator to find your diagnosis and how we can help you
Charity Events - View our calendar of events and see what is coming up for B12d
Success Stories - Read success stories on patients of Dr Chandy and other B12 Patients
Donna, like so many women, wants to live a normal life. Vitamin B12 could give her that chance.
New documentary out from Elissa Leonard in North America, featuring Sally Pacholok and many other internationally renowned experts.
Susan gets very tired, which isn't much fun especially as she has so much to do. Here she tells her story.
Frankie tells of how she suffered, the tests she had to endure until doctors worked out what was wrong, and what a difference it has made.
Dr Chandy was nominated for the North East Local Heroes award. The interviewer was at first surprised - people don't get awards for doing what they are paid to do - but she persisted.
Julia found her eyesight going as her eyes refused to focus on the same things as each other. She's been for all sorts of tests and treatment, but now that she's on B12 replacement therapy she's starting to see an improvement.
The local MP (Grahame Morris MP for Easington - who was a BMS (BioMedical Scientist) in the labs at Sunderland Royal Infirmary) interviews people with B12 deficiency to hear their story (August 27 2010). Here Jane describes the symptoms, and how she can't wait for her next B12 injection (in fact, she knows that she needs injections every 2 weeks because she's keeping a diary of the symptoms). We're restricted how often the GP can give injections, which is why we want to raise awareness.
June describes her suffering when doctors didn't follow the standard protocol after any stomach or intestinal operation - to offer B12 replacement therapy
The definitive and original guide to B12 deficiency, Dr Chandy interviewed by Chris Jackson of UK BBC Inside Out Team broadcast 31 Oct 2008.
Dr Joseph Chandy explains symptoms and shows the restorative effect on one patient (other patients' families have asked that we edit out their stories unfortunately)
Janette first appeared in the BBC InsideOut documentary in October 2006. Since then the NHS has forced her doctor to withdraw B12 replacement therapy on a number of occasions, and she tells of her struggles with having B12 and then having it taken away.
She has bravely agreed to be filmed without her usual wig, but her memory is playing up because it is so long since her last injection.