Various B12D/PA resources

[jade_s]

Admin Edit: This is not an official PAS post but it does contain many resources that may be of use to members and has been pinned for that reason

___________________________________________________________________

Hi all, I had some time to spare today and thought I would write a post with a list of resources for newbies and oldies alike. I too sometimes forget these resources exist. Borrowed liberally from  Sleepybunny 's always excellent posts! I may add/edit in the future. Note: I am not medically trained.

Feel free to add your favorite resources in the comments! (especially any UK specific links, since I cannot access them).

-----

Acronyms

PA = pernicious anemia (autoimmune disease that causes malabsorption of B12)

B12D = vitamin B12 deficiency (can be caused by many things, not just PA: b12deficiency.info/causes/ )

IFAB = intrinsic factor antibodies , if they are positive, they are diagnostic of PA. IF is the transporter that is secreted by GPC cells in the stomach, and attaches to B12 in the duodenum. After travelling to the ileum, the IF-B12 complex is absorbed from the small intestine into the bloodstream. stichtingb12tekort.nl/engli... and vivo.colostate.edu/hbooks/p...

GPCAB = gastric parietal cell antibodies , often seen in PA but may also be present if you have another autoimmune disease, so on its own most doctors will not diagnose PA from this test (though some might)

AMAG = autoimmune metaplastic atrophic gastritis (often seen in PA/B12D and/or those with GPC antibodies - requires monitoring with periodic endoscopies). Causes low stomach acid and decreased IF msdmanuals.com/professional...

PAS = The Pernicious Anemia Society, a registered charity in the UK pernicious-anaemia-society....

EOD = every other day (the recommended frequency of B12 injections when there is neurological involvement/symptoms

SI = self injection

List of blood panel Abbreviations. post by EllaNore. healthunlocked.com/pasoc/po....

-----

First, do take a look at the pinned posts pertaining to this forum, run by the PAS healthunlocked.com/pasoc/po...

-----

Diagnosing and testing PA/B12D

pernicious-anaemia-society.... and pernicious-anaemia-society....

b12deficiency.info/testing/

theb12society.com/diagnosing

stichtingb12tekort.nl/our-e... - various articles

British Committee for Standards in Haematology diagnostic & treatment flowchart stichtingb12tekort.nl/engli...

-----

Signs & Symptoms Lists

b12deficiency.info/signs-an...

pernicious-anaemia-society....

b12-institute.nl/en/symptom...

Your Over-All Well-being Score, forum post by  Narwhal10 healthunlocked.com/pasoc/po... Describes the SF-36, a tool to measure a person’s overall well-being, and how you can use it to help your clinician understand how your illnesses affect your life

-----

Mental health & Neuropsychiatric symptoms

b12deficiency.info/mental-h...

stichtingb12tekort.nl/engli...

-----

Treating PA/B12D

pernicious-anaemia-society....

b12deficiency.info/treatment/

UK's new NICE guidelines are currently in the consultation phase: nice.org.uk/guidance/indeve... and see also b12deficiency.info/vitamin-... From Tracey Witty "I am a Stakeholder for the Guidance, so if you would like to send me your comments on the Draft too I will send these in and they will be published. Your comments sent directly to NICE on the draft will be read and acknowledged but will not be published." [see the link to her email in her blog post].

Regarding re-testing serum B12 during treatment, article from the PAS: pernicious-anaemia-society.... and "Help Sheet – re-testing of B12 during treatment" (members-only page): pernicious-anaemia-society....

Caution note about the use of oral B12 supplements from the Dutch B12 institute b12-institute.nl/caution-no...

-----

Writing to your doctor & informing yourself (when encountering difficulties in getting diagnosed/treated)

Letter Templates: b12deficiency.info/writing-...

Help from the PAS if you're in the UK (need to join as member): pernicious-anaemia-society....

Diagnosis and treatment pitfalls b12-institute.nl/en/diagnos...

Misconceptions about a B12 deficiency stichtingb12tekort.nl/engli...

"The Many Faces of Cobalamin (Vitamin B12) Deficiency" See especially Table 1 on "Misconceptions and Misbeliefs" associated with B12D. Full text available: ncbi.nlm.nih.gov/pmc/articl...

What to do next if B12 deficiency is suspected or recently diagnosed b12deficiency.info/what-to-...

Various UK local guidelines and other resources on Sleepybunny's posts: healthunlocked.com/user/Sle...

-----

B12 is not toxic even at high doses. But some people may have tolerance issues, so do track symptoms.

"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years" stichtingb12tekort.nl/engli...

Ultra-high dose methylcobalamin for ALS (example of even very high B12 doses are safe) healthunlocked.com/pasoc/po...

-----

Untreated B12D can cause SACD: sub acute combined degeneration of the spinal cord

The condition is (usually? sometimes?) reversible with sufficient B12

From MSD Manuals: Subacute combined degeneration is progressive degeneration of the spinal cord due to vitamin B12 deficiency. msdmanuals.com/home/brain,-...

"Subacute Combined Degeneration One Century Later. The Neurotrophic Action of Cobalamin (Vitamin B12) Revisited" academic.oup.com/jnen/artic... (thanks @WiscGuy)

And discussion thread ""Subacute" "Combined" spinal cord degeneration, decoded?": healthunlocked.com/pasoc/po...

PAS article on SACD pernicious-anaemia-society....

SACD may also result in a positive "Romberg Test", test details in this scientific article: ncbi.nlm.nih.gov/books/NBK5...

-----

PA/B12D and AMAG may result in low stomach acid. This can cause:

Anemia / Iron deficiency - see  Rexz 's excellent post on Iron Deficiency Without Anemia (IDWA) healthunlocked.com/pasoc/po... Do NOT take iron supplements based only on a ferritin test. A full iron panel is best, because ferritin can be high/low due to other issues.

Low folate - you can ask your doctor to test it periodically b12deficiency.info/folate-b... B12 and folate go hand-in-hand, so a deficiency in either one can cause B12D-like symptoms , plus low folate can cause additional issues

And other vitamins/minerals may be low. Best to ask your doctor for testing.

For low stomach acid, some people take lime juice, apple cider vinegar, or betaine HCl. Some people may need digestive enzymes.

-----

Functional B12 deficiency - when serum levels are fine but the person still has all the signs of B12 deficiency.

Cause as yet unknown, but it's not uncommon. In the letter writing template page b12deficiency.info/writing-... , point 5 under "Supporting documents" includes a long discussion on functional B12 deficiency and various links to papers as well as the NHS nhs.uk/conditions/vitamin-b... (search for "functional" on the page).

-----

Don't forget that while we all think B12 is a miracle vitamin (it is !), we may still have other underlying diseases or issues...

If you are well treated on B12/folate/iron/etc but continue to have symptoms, even neurological ones, you should contact your doctor for further workup.

However, do remember that neurological symptoms call for every-other-day injections "until there is no further improvement" according the the BNF pernicious-anaemia-society....

If you have one autoimmune disease, you're at increased risk for others

Hypo/hyper-thyroidism seems to be quite common - see the ThyroidUK forum healthunlocked.com/thyroiduk and website thyroiduk.org/

Coeliac / celiac disease and non-celiac gluten sensitivity (NCGS) are also common.

-----

Link to info about private testing in the UK (from the ThyroidUK group) thyroiduk.org/help-and-supp...

-----

Scientific papers

How to do your own research healthunlocked.com/pasoc/po... - excellent thread posted by  Technoid with videos on how to do your own research, for example using google scholar scholar.google.com/ (Also check his other posts on threads relating to nutrition healthunlocked.com/user/Tec... )

Thread: New papers on PA (list of recent publications on pernicious anemia) healthunlocked.com/pasoc/po...

"Vitamin B12 status in health and disease: a critical review. Diagnosis of deficiency and insufficiency – clinical and laboratory pitfalls" [Thread about it:] healthunlocked.com/pasoc/po... [Direct link to paper:] tandfonline.com/doi/full/10...

"Vitamin B12 deficiency from the perspective of a practicing hematologist" [Thread: ] healthunlocked.com/pasoc/po... [Link to paper:] ashpublications.org/blood/a...

"The pathophysiology of elevated vitamin B12 in clinical practice" - What causes high B12 levels when not supplementing B12? Functional B12 deficiency (paradoxical B12 deficiency) gets a mention in this paper academic.oup.com/qjmed/arti...

Everything you always wanted to know about vit B12 metabolism but were afraid to ask... Kósa, Magdolna, et al. "Vitamin B12 (Cobalamin): Its Fate from Ingestion to Metabolism with Particular Emphasis on Diagnostic Approaches of Acquired Neonatal/Infantile Deficiency Detected by Newborn Screening." Metabolites 12.11 (2022): 1104. [Link to paper] mdpi.com/2218-1989/12/11/1104

The Level of Serum Pepsinogen in Diagnosing and Evaluating the Severity of Subacute Combined Degeneration Due to Vitamin B12 Deficiency [Thread:] healthunlocked.com/pasoc/po...

B12 and remyelization: "The Role of Vitamin B12 in the Management and Optimization of Treatment in Patients With Degenerative Cervical Myelopathy" [Thread and link to paper] healthunlocked.com/pasoc/po...

Two papers examining PA patients' experiences with health professionals "Receiving a Diagnosis of Pernicious Anemia: Exploring Experiences of Relationships With Health Professionals" and "Examining the Diagnosis and Treatment Experiences of People Living With Autoimmune Gastritis and Pernicious Anemia" in this thread: healthunlocked.com/pasoc/po...

thanks  WiscGuy for many of these papers !

-----

Movies/Books

Youtube Films b12deficiency.info/films/

Videos from the PAS pernicious-anaemia-society....

Martyn Hooper's books (he is the founder of the PAS) pernicious-anaemia-society....

Sally Pacholok's "Could it be B12?" and the "Pediatric Edition" books b12awareness.org/could-it-b...

Tiktok videos on history of PA from the Heme Queen healthunlocked.com/pasoc/po... (thanks  Dandelions !)

Primer on B12 absorption and transport , explanation of the various B12 transporters, by Technoid, and youtube video in this thread: healthunlocked.com/pasoc/po...

Friday Favorites: The Symptoms of Vitamin B12 Deficiency and Optimal Dosage for Adults by Dr Greger healthunlocked.com/pasoc/po... - not specific to PA but gives a nice overview of the history and symptoms of B12D and references many interesting papers (thanks  MoKayD !)

Neurology course - section on nerve injury and repair - video on nerve repair, not specific to B12D healthunlocked.com/pasoc/po...

Nerve repair research TED talk by prof. Massimo Hilliard, not specific to B12D. Youtube video link in the replies below healthunlocked.com/pasoc/po...

Charlotte's story - Untreated B12 deficiency healthunlocked.com/pasoc/po...

-----

Awareness & Posters

Posters from the PAS pernicious-anaemia-society....

Posters from Tracey Witty b12deficiency.info/posters/

A Life Jolted - Weekly blog posts chronically one person's journey with Pernicious Anemia, at rexwiig.substack.com/ . If you subscribe, there is a free option. "How I saved my own life...a moving memoir of illness, survival, and a life reconstructed. Empower yourself...take charge of your own health!" thanks  Rexz !

And  EllaNore 's fantastic B12D/PA 3x5 awareness cards - You can print these out onto index cards and hand them out, or download them to your phone, to spread awareness about B12 Deficiency and Pernicious Anemia!

Front side: drive.google.com/file/d/12j...

Back side: drive.google.com/file/d/1CO...

Instructions : Use a 3" x 5" (76.2 x 127.0 mm) index or recipe card. Print one side and then flip it and print the other side. You can also upload the files to Vistaprint or any online company and have them professionally printed. You can even have them laminated if you wanted to! And, download it to your phone so you can text it or email it to anyone instantly. Tip: If you print these on a 3x5 index card, my HP DJ3700 needs a bottom border of 0.5" to pull the paper in. That is a big bottom border. So if printing at home, you will most likely not be able to go edge to edge. So in the settings, choose center and shrink to fit page. Choose 3x5 index paper in the print settings and plain paper under quality.

-----

Newspaper articles discussing PA

- Daily Mail Doctor speaks on PA! healthunlocked.com/pasoc/po...

- Dr. Mark Porter's B12 Times article healthunlocked.com/pasoc/po...

- News Article from the Chicago Tribune About PA healthunlocked.com/pasoc/po...

- An old but familiar story (Washington Post) healthunlocked.com/pasoc/po...

-----

Non-profit organizations, all with a wealth of info on their websites

Stichting B12 Tekort, a Netherlands based charity stichtingb12tekort.nl/english/

Pernicious Anaemia Society, a UK based registered charity pernicious-anaemia-society....

The B12 Society, a Scottish Registered Charity, theb12society.com/

cluB-12 , formed in January 2020 ‘to facilitate the sharing of knowledge and coordinate research into Vitamin B12 between Scientists and Healthcare Professionals’; in the process of becoming a UK based Charity club-12.org/

B12 Institute Research Foundation, a Netherlands based charity b12-institute-researchfound...

-----

[Wheat]

wow jade-s you must have more than a few minutes to spare!! So much information and links it fair fog boggles me. I shall save your post and go through at my leisure. Thanks and best wishes .

[jade_s in reply to Wheat]

🤣🤣 yes indeed it went a bit longer than anticipated. Take your time, it's taken me 7 years to get to this point You're very welcome! Best wishes

[Sneedle]

👍👍👍👍👍👍👍

[Narwhal10]

Great work as always Jade.

Thanks ever so much to you and the others of this community who have contributed and their links.

You are absolutely correct, vitamin B12 is not necessarily the ‘B’ all and end all.

Health is multifaceted as there can be further deficiencies, illnesses, emotional/psychological factors, having relationships, social factors, the ability to maintain work and/or busy caring responsibilities. Now juggling all that is rather a lot.

For me, I’m trying to organise my huge amount of printed research at home. It’s a game of where did I put the hole punch ? Where is the file marked gastroenterology ?

🤓 x

[jade_s in reply to Narwhal10]

Thank you 😊

"vitamin B12 is not necessarily the ‘B’ all and end all." 😂😂 Nicely said!

Good luck organizing! Us chronic people tend to have multiple piles don't we 🤦‍♀️

Reminds me, I need to add some more info on AMAG. Rexz didn't you have some good posts/links on AMAG? Also forgot to tag you in the main post, will fix that now.

[Technoid]

Fantastic stuff Jade ⭐⭐⭐⭐⭐

Perhaps Gambit62 could pin the post for reference purposes.

[jade_s in reply to Technoid]

Thanks! 😊 Great idea! 🙏

[TenovSvetik]

Thanks a lot !! You are the Best !! Be happy !

[Orchard33]

Brilliant to have all the info in one place. Heartfelt thanks.

[deniseinmilden]

Wow! Another excellent and so very helpful post from you.

Thank you!

[Jo55]

thank you so much for this

[PhilAB]

Absolutely fantastic post. This is amazing. Thank you for your time and effort.

[GS61]

Thank you so much - I am just starting on my B12 journey and at the research stage and what tests I should do before supplementing - so this is just amazing

[jade_s]

Thank you so much Gambit62 for pinning this and everyone who's replied for your kind words 🙏 I'm glad it's helpful!

[MrsTuft]

Amazing thanks!

[Cherylclaire Forum Support]

Fine body of work !

[Myanna23]

Thank you Jade, will keep this for reference, so helpful as always.

[Rexz]

This is an excellent post on resources Jade_s. It shows you've put a lot of work into this.

Note sure what the "Admin Edit" means?

Rexz

[jade_s in reply to Rexz]

Thank you Rexz! Admin Edit just means that one of the administrators of this forum edited the post to add that comment (i.e. the sentence following it wasn't something that I wrote)

[Litatamon]

Aren't you fabulous!

Why yes you are.🤗

[jade_s in reply to Litatamon]

Hahaha Awww making me blush 😊🤩 thank you and thanks again everyone! I merely compiled it all in one post, all the real hard work goes to the others on the forum for discovering and posting all these links - team effort! 🤗🥇

[WiscGuy]

Huge job! Thanks for providing this collosal listing of resources.

[EllaNore]

Fantastic Jade_s! Thank you so much for taking the time to do this. Such great info. I too forget this stuff.

[Mixteca]

Thank you for your hard work Jade! This is a short but intriguing video about nerve repair:

youtu.be/MzMS2cgXRjI(Not working as expected?)

[Technoid in reply to Mixteca]

Nice! He published some research last year with details (mostly beyond my capacity to understand) on this:

"The metalloprotease ADM-4/ADAM17 promotes axonal repair"

science.org/doi/10.1126/sci...

Promising stuff though. More funding for this man please!

qbi.uq.edu.au/profile/286/m...

[jade_s in reply to Technoid]

Whew above my head too! But amazing ! Thanks very much Mixteca for this great video!

[EllaNore in reply to Technoid]

Very fascinating!!! I wonder if this has anything to do with the process that lizards go through when they actually regrow a tail. There's animals that can heal themselves and regrow missing pieces. It seems lizards might be an interesting study as well. Also I believe an octopus can regrow a tentacle. A quick search just found there's nine animals that can regrow severed body parts, antlers and teeth. I think that would be very fascinating to study as well.

[EllaNore in reply to Mixteca]

Wow. Thank you mixteca for posting this amazing and fascinating video. When he was talking about severed nerves and how you couldn't just stitch together an axon because it's 50 times thinner than a piece of hair, my first thought was glue. They glue incisions together these days. It makes total sense. It seems very logical. It seems very attainable. What a brilliant human being. That's just one injury a nerve can get. Next, they need to figure out how to replace the myelin coating on our nerves as well. I wonder if the same glue the worm uses could also coat its nerves to keep them protected. Wouldn't that be miraculous. I love science.

[Sandytango]

Very grateful for this...thankYou so much !

[Sleepybunny]

Hi,

Thanks for all your hard work.

[LizWilsonpa]

Wow! Thank you!

[EllaNore]

I forget that this amazing information is here all in one place. An incredible amount of information Thank you so much Jade s.

I wish I could send this to all my doctors.