new here!

[Bloggin]

hi everyone! New here. Starting injecting daily as my symptoms are pretty bad. Doing 1,000mcg for 90 days then will taper down. I got my b12 from pernicious anemia.org. Where does everyone get theirs? I’m in the US.

[Lilly73]

Hi. Firstly let me say hope you start to feel improvement soon, it does take a while sometimes.I was diagnosed Jan 22 and have neurological symptoms. I'm in UK and get the standard 3/12 shot at docs but SI twice weekly in between too. I get my b12 from Germany

[Sleepybunny]

Hi,

I hope you soon see improvements in your symptoms.

Some forum members report that their symptoms can get worse for a while when starting treatment before starting to get better.

I'm in UK and it seems quite common for UK forum members to struggle to get enough B12 from NHS. Most seem rationed to 4 injections a year.

Some UK forum members resort to treating themselves when NHS treatment is not enough.

Some get extra injections from private doctors or beauty salons, some try high dose oral B12 tablets but sometimes that doesn't work and some resort to self injection using injectable B12 from Europe.

A few B12 links that you might find interesting

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some US members.

pernicious-anaemia-society....

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

PAS membership is separate to membership of this forum.

PAS support groups

There is a PAS support group in Chicago area.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

Has useful lists of symptoms and causes.

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

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 (US authors)

Very comprehensive with lots of case studies.

Sally Pacholok has written several online articles about B12 deficiency.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

B12 research article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

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

I'm not medically trained, just someone who suffered unrecognised B12 deficiency for many years.

[Auburn9144]

I'm in the U.S. also. I was on methylcobalamin for about 3 yrs. Recently changed to cyanocobalamin which I order from Canada. It's SO much cheaper! They're fast, efficient, very informed & very friendly. I get my syringes from them as well. You're paying $129 for 30 injections. I pay $30 for 30 injections....no kidding. It's cyanocobalamin, & it actually works better than methyl for me (probably because I can afford to take the shots more often). Got this company's info from the Pernicious Anemia/B12 Support Group on Facebook. The # is [phone]. Ask for the Pernicious Anemia discount. Hope this is helpful.

[Nana321]

Welcome Bloggin. I'm in the US as well. I order from Canada Drug Superstore. Fast and efficient. About $1 per injection. Good luck on this roller coaster.