B12 injections

[CrossStitcher75]

I am new to this sight and very thankful to have found it! I have been recently diagnosed with pernicious anemia and am suffering from incredibly bad GI issues because of it. I take my injections once monthly. After my injection my GI issues get better for about two weeks and then get worse again. My doctor is having me go through all the usual GI tests, upper endoscopy, colonoscopy and even sending me for a PET scan. I have said that I really feel this is all B12 deficiency related. I’d like to up my injections to twice a month but because my blood levels are normal my GP will not approve the prescription. Any advice?

[wedgewood]

It’s something that happens here in the U.K. too . Doctors should be assessing the situation using your experience , but they would rather read a bit of paper . We are all different and need different regularity of injections . My advice would be to self inject ,as do many members of the PAS . You can get your supplies from Canadian online pharmacies . I will send you the information if you would like it . You can inject I,M or Sub-cut . Doctors are incredibly ignorant about Pernicious Anaemia.

As a Pernicious Anaemia patient , you will have Low Acid / no stomach acid ( Hypochlorhydria/ Achlorhydria, because the Intrinsic Factor antibodies that you have, have destroyed the parietal cells in your stomach .These cells produce stomach acid as well as the intrinsic Factor . This l upsets your gut flora which need an acidic environment . Try a prebiotic capsule or better still use natural probiotics like organic sauerkraut , real yoghurt , kefir ,kimchi and kombucha . Eat smaller meals , and chew thoroughly, to allow the enzymes in saliva start the process of breaking down the food on the way to absorption . This will help .Also taking an acidic drink with meals is helpful .

[CrossStitcher75 in reply to wedgewood]

Thank you!! Yes, I would be interested in that information for getting my own supplies. Your advice is very helpful. I feel as if my own GP does not know much about PA, and if he does he is not communicating information about this very well. I do plan to seek out a specialist here in NY to help me work through this and hopefully get back to somewhat “normal” day to day life again without the constant stomach ache. Thank you again.

[Sleepybunny]

Hi,

Welcome to the forum.

A few links about PA and B12 deficiency that may be of interest to you.

Some links may have details that could be upsetting.

Patterns of treatment for B12 deficiency varies between countries. Type of B12 used can also vary. I'm in UK where NHS mainly uses hydroxocobalamin.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in US.

pernicious-anaemia-society.org

There is a helpline number that PAS members can ring and an online contact form.

Latest PAS newsletter Spring 2022 mentioned a new PAS support group starting in Chicago area.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

b12-institute.nl/en/home-2/

Has good lists of symptoms and causes.

Two useful B12 books

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands)

b12-institute.nl/en/diagnos...

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Link to talk given by Sally Pacholok, author of "Could it Be B12?" book

antiageingconference.com/pp...

There are other online articles by Sally Pacholok.

US link about B12 deficiency

nhlbi.nih.gov/health/anemia...

Wall Street Journal article about B12 deficiency

pernicious-anaemia-society....

wsj.com/articles/vitamin-b-...

Chicago Tribune article about B12 deficiency

chicagotribune.com/lifestyl...

I am not medically trained just someone whose B12 deficiency was not recognised for many years.

[CrossStitcher75 in reply to Sleepybunny]

Thank you for all of these links!! I have much to learn

[wedgewood]

Supplies for injecting B12 in USA .( Canadian online pharmacies ) Cynocobalamin B12 .

biosenseclinic.com Has Cynocobalamin in single use ampoules ( safest method) and multi-use vials .Also have needles

canadadrugsuperstore.com

Has same as above .

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Single use ampoules are the safest to administer B12. Several use vials are at greater risk of contamination.

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bulksyringes.com has needles and syringes

allegromedical.com ditto. ditto

shopmedvet.com ditto. ditto

It is safer to use single-use ampoules than multi-use vials in a domestic situation , because of the danger of contamination, and the fact that a vial is not used up quickly, unlike an ampoule which is injected within a minute of being opened .

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Looks as if mycare.de. (A German online pharmacy) will deliver to USA

Do register ,by clicking on the silhouette at the top . When entering your address , enter your country first using the drop-down list The USA is referred to as “ VEREINIGTE STAATEN von AMERIKA . Then the computer will accept the rest of your address .

You can obtain Panpharma B12 depot ( Hydroxocobalamin) single use ampoules 1mg. X1ml

And Hevert 1mg x 2ml “. “. “ “

I don’t know shipping costs .

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B12 can be administered by either an Intra-Muscular or a sub-cutaneous injection .

For an I.M. Injection a 25G x 1 inch needle can be used .

For a sub-cutaneous injection a 30G x 1/2 inch needle can be used .

A long coarse needle , say 21G x 11/2 inches long, can be used to withdraw the B12 from the ampoule. This is needed because the needle is made blunt by touching the ampoule . This would make the injection painful .

This information is supplied to you by a private individual , who has been self-injecting for six years, using single -use ampoules.

[CrossStitcher75 in reply to wedgewood]

Thank you for all that information. I do self administer now so that’s helpful going forward. Thank you again! I’ll start looking in to all of this

[Weegirlfromtayport]

I am in Australia. Diagnosed May 21 with gastritis and PA. Struggling to get 2 weekly B12 injections. This will help me not "fall back" - but cant get doctors or specialists to approve. One said every 3 months. BUT happy to put me on antidepressants - which surely is worse than B12 injections? Appreciate how you feel.