B12d Newsletter (June 2025): registered as a serial, ISSN 2732-5539

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Important Disclaimer

Please be aware that:

*           Speakers share their own opinions and findings.

*           You may hear different or even conflicting opinions from different speakers.

*           Please use your own judgment when considering the information.

*           Many of our speakers have a professional interest in Vitamin B12, such as running clinics or selling products. The most knowledgeable people often work in this field.

*           B12d does not endorse any speaker’s services, but they are available to you.

All times are UK time (we’re now in Daylight Savings Time ie Summer Time).

Next Speaker: Monday, June 9th, 2025, at 7:00 PM

Heather Hardie – the B12 Society

The B12 Society is another B12 deficiency support charity with a world-wide following. It shares the same values as B12d.org and we coordinate our efforts through B12 Alliance, a sub-committee of CluB-12. Heather Hardie, founder and Chief Executive, is joining us to tell us about the activities of the charity.

The B12 Society produces a fantastic range of educational and informative materials, including educational programmes for doctors and nurses, information and educational programmes for expert patients, and advice and support 1-on-1 for patients. The B12 Society is closely involved in conferences, involved in organising conferences for health professionals and attending other conferences to represent the voice of patients. Of particular note are the parents’ support group, and following through with the theme of children, a working group to help develop NICE guidelines for B12 deficiency in children (under-16, specifically excluded from the NG239 NICE guideline)

The Zoom link is:

https://us02web.zoom.us/j/89060760956?pwd=bvyqq94YmjM2yvHAxm9oWcXa7Xh4R6.1

YouTube Channel

You can find past talks and webinars on our YouTube channel. We are working on adding the most recent talks, but there may be some delays. Visit our YouTube channel here:  <https://www.youtube.com/@B12dTalks> www.youtube.com/@B12dTalks

We are also creating website pages with the videos and explanatory text. This will make the videos easier to follow and allow for discussion. These pages should be available soon.

Website: www.B12d.org

Our new website is considerably cut back from the previous one which had accumulated a lot of information, but it wasn’t always easy to find things. If your favourite page is missing, please let us know and we’ll work on updating to a current version.

The new website intends to tell a story, so when you’re feeling brain fog you can still access it. It’s like when you’re reading Dr. Chandy’s book, we suggest reading the case studies first. This helps you connect with the people before diving into the main text. We are taking a similar approach with the website. You will be able to explore symptoms and personal experiences first. Then, you can delve deeper into the information if you choose.

Dr. Chandy’s book will be available on the website in several formats:

*           Short sections

*           Individual pages

*           A complete download

This is a big project, and it will take time, especially putting up all the webinar recordings. We will also be adding new information to the website.

To subscribe to this newsletter, please email me with the subject line

“NEWSLETTER SIGNUP”.

B12d Symptom Checker – is BACK!

You can download the protocol for diagnosis and treatment, the symptom

checker, and Dr. Chandy’s book here:

*           Protocol for diagnosis and treatment: <http://www.b12d.org/protocoltreatment>

http://www.b12d.org/protocoltreatment

*           Symptom checker:  <https://b12d.org/symptoms-checker/>

https://b12d.org/symptoms-checker/

*           Dr. Chandy’s book:  <http://www.b12d.org/book> www.b12d.org/book

The online Symptoms Checker is BACK! You can enter your symptoms online and get an immediate calculation of your likelihood for B12 deficiency. This is not a medical test, but it does give you the evidence to go to your doctor and say you want to start treatment (and you can print out a copy of your results marked with the date and time). Try it out on  <https://b12d.org/symptoms-checker/> https://b12d.org/symptoms-checker/ and tell us what you think!

This currently doesn’t store anything. If you want to keep your history, check your symptoms every day (or every week) and print a copy (to PDF if you prefer). We’re still exploring how to keep your symptoms information secure so as to save it.

NICE Guidelines NG239 – Vitamin B12 deficiency in over 16s: diagnosis and management

The preparation of these new (March 2023) guidelines is a major milestone for the diagnosis and treatment of B12 deficiency. There are a number of summaries of what it means by eminent doctors, this one is quite a popular one https://www.pulsetoday.co.uk/clinical-feature/clinical-areas/gastroenterolog

In brief:

*           The NICE guidelines highlight that B12 deficiency is widespread and can come about from a number of different factors, and the cause (in broad terms) is important in determining the treatment

*           Symptoms are a key diagnosis tool. Blood tests have significant margin for interpretation, but the general principle is “if in doubt, start treatment”

*           B12 injections IM should be the default (the person is unable to absorb or process B12) unless it is obvious that the person has too little B12 in their diet, in which case either advice on diet or supplements are appropriate.

Coffee Mornings

Before the COVID-19 pandemic, B12d held in-person coffee mornings. These gatherings were enjoyable and provided support for people who felt isolated.

Dr. Chandy, a GP in the North East, held the coffee mornings in Peterlee. They alternated between Peterlee town centre and Horden. We are pleased to announce that the coffee mornings are starting up again!

Peterlee Coffee Morning

*           When: The 4th Monday of each month at 11:00 AM (The next one is May)

*           Where: Poppy Dene Lemon Tree Café (SR8 5AS)

*           Hosts: Susan Peacock, Ann Peel (Trustees), and Dr. Patel

We are also planning coffee mornings in Sunderland and Northumberland.

Would you like to start a coffee morning in your area?

Come meet others like you and find support!

If you’re interested in starting a coffee morning in your area, please get in touch with us.

Social Media Groups – Our WhatsApp Group

We are a community. In addition to our in-person gatherings, we also have online communities.

We have a WhatsApp <https://chat.whatsapp.com/KaJ917o7e7n1ycXWT1pAWn> ,

B12d.org Charity Support Group. This will take time to grow but is already lively.

Join our new WhatsApp group here:

<https://chat.whatsapp.com/KaJ917o7e7n1ycXWT1pAWn>

https://chat.whatsapp.com/KaJ917o7e7n1ycXWT1pAWn

There are also three Facebook groups connected to B12 deficiency:

*           <https://www.facebook.com/groups/282357409400217/> B12 Deficiency – functional, neurological and autoimmune

*           <https://www.facebook.com/groups/529779647037909/> B12 Support Group

*           <https://www.facebook.com/groups/655423737818837> International B12 Deficiency Support Group

Please remember not to share private medical details on Facebook or WhatsApp. These communities are primarily for support, not medical advice. However, the WhatsApp group does have GP members who may offer advice.

Your Emails

Dr. Chandy was a dedicated doctor who served the community of Horden for over 40 years. He founded this charity and continued to help people with Vitamin B12 deficiency long after he retired. He was known for personally answering emails and phone calls to assist people. Sadly, Dr. Chandy passed away in December 2023. However, expert patients will continue to answer your emails. Please feel free to send your questions to  <mailto:notifications@b12d.org> notifications@b12d.org  .

Where Can I Get B12 Injections in the UK?

We no longer supply B12 for injection. It is becoming more difficult to obtain B12 for injection. Some people have had success with suppliers in Germany (especially when using PayPal and ensuring the delivery address matches the PayPal address). Another option in the UK (which also ships to the USA) is Oxford Biosciences. They offer a dry powder that needs to be mixed with saline. It works the same as pre-mixed injections:

https://oxfordbiosciences.com/store/product/vitamin-b12-methylcobalamin-serv

Oxford Biosciences can ship the powder worldwide. You can call them to request sterile saline, though some members use eyewash saline. For oral B12, there are many sources, including Amazon and Holland & Barrett. We recommend considering methylcobalamin and adenosylcobalamin (often sold as dibencozide). However, many people do well with cyanocobalamin.

If you want an assessment and injections, let us know as there are a few clinics able to offer this, for a fee of course since this is not funded by NHS. One of these is  https://www.abhealthhub.com/, run by one of our own Trustees Annie Barr MBE. We don’t get anything from you using her hubs, but if we’re going to tell you where to find help, then it makes sense to recommend someone we know so well.

Donations

If you would like to help the charity with a donation or a standing order, please make it to “B12d” at TSB Bank 77-29-07 18833068, or use the link

https://www.paypal.com/donate/?hosted_button_id=XFHFAQKKAU5NQ We’re continuing to develop our website and creating more materials to inform doctors and patients, and we still send out books via the Doctor Book Scheme (see below).  Your donations have enabled us to produce the videos from our guest speakers, and we want to build the symptoms checker.  This would mean that your queries go into a proper process where we can check your recorded symptoms in the symptom checker and your previous questions and answers and more easily send information sheets.

Doctor Book Scheme

UK-based clinicians can request a copy of the book “Vitamin B12 Deficiency in Clinical Practice” by Dr Chandy and myself in physical (printed) form by sending an email to

<mailto:notifications@b12d.org?subject=Doctor%20Book%20Scheme>

notifications@b12d.org subject line BOOK, including your POSTAL ADDRESS (surprising how many people miss this off – I can’t send you a copy if I don’t know where to send it!), name, and a number in case Amazon need to contact you about the delivery.

You can download an electronic copy of the book from

<http://www.b12d.org/book> www.b12d.org/book, either in individual chapters or the whole book. This is free of charge for anybody and everybody.  You can purchase a printed copy from Amazon (all their worldwide sites). Black and white version

https://www.amazon.co.uk/Vitamin-B12-deficiency-clinical-practice/dp/109769

https://www.amazon.co.uk/Vitamin-B12-deficiency-clinical-practice/dp/1097697 at around £6.30, colour version

https://www.amazon.co.uk/Vitamin-Deficiency-Clinical-Practice-colour/dp/109

https://www.amazon.co.uk/Vitamin-Deficiency-Clinical-Practice-colour/dp/1096 for £24.

When reading the book, start by reading the case studies and get to know the people before reading the text. It’s designed as a medical textbook to be a little heavy, even for an expert patient. If you want to start a coffee morning in your area, inviting friends to learn about the quickly and safely treatable symptoms, we’d gladly support you-email  <mailto:notifications@b12d.org> notifications@b12d.org.

Sincerely,

Hugo, Susan, and the Trustees B12 Deficiency Support Group (registered as

<https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/

charity-details/5023472/charity-overview> charity 1146432)

Horden, Co Durham, UK <http://www.b12d.org/> http://www.b12d.org

Email our expert patients to ask about your specific symptoms

<mailto:notifications@b12d.net> notifications@b12d.net

Data Privacy and your right to receive or not receive newsletters

You are receiving this newsletter because you opted to receive our monthly newsletter.  You can change this at any time: click  <mailto:notifications@b12d.org?subject=Remove%20[Email%20Address]%20May24> this link to send an email to me.

You can also close your membership on our website.  Please be aware that this will mean you won’t be able to check your symptoms.

We use your name, address, and email to send you this email (if you have opted in to receive the email).  We may also use symptom data anonymously to understand more about B12 and its progression. We may, at some point in the future, develop a complete CRM which will use your data to provide more comprehensive support. We will keep you informed as this progresses.