self injection question

[Mammaelf]

morning

For those that self administer, where do you purchase from ?

Also, for those that inject daily, what mg do you use?

Thanks

[Sleepybunny]

Hi,

If you could tell people which country you are in then that will help forum members to post the most relevant info.

Do you have symptoms consistent with B12 deficiency?

If you're in UK, have you had B12 injections from your GP?

A few useful B12 links....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort

(Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books

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

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

UK BNF treatment in book is out of date.

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

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Misconceptions (wrong ideas) about B12 deficiency

B12 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.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from your country)

stichtingb12tekort.nl/engli...

There's a lot more info I could post if you're in UK.

I'm not medically trained.

[Mammaelf in reply to Sleepybunny]

based in wales uk. Yep had PA for a long time. Self administer as I got fed up with fighting the gp about monthly jabs. Purchased from Germany last time. But wondering if anyone uses anyone else? Also I’ve sent lite of daily injectors on here. I use 1500mg monthly. But still exhausted and brain fog.

Also have psos which is a Nucience.

[Sleepybunny in reply to Mammaelf]

"Also have psos"

Do you mean Polycystic Ovary Syndrome?

NHS link about Polycystic Ovary Syndrome

nhs.uk/conditions/polycysti...

There are others on this forum with PCOS and I've often wondered if there is an association between PCOS and B12 deficiency.

Have read that PCOS may be an auto immune disease and I wonder if having PCOS might mean people are more likely to develop auto-immune conditions that can lead to B12 deficiency eg PA, coeliac disease, Crohn's disease etc.

[Sleepybunny in reply to Sleepybunny]

Hi again,

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

[Sleepybunny in reply to Sleepybunny]

Some links specific to Wales .....

PAS support groups in UK

There is one in Wales.

pernicious-anaemia-society....

Public Services Ombudsman for Wales

ombudsman.wales/

Health Boards Wales

wales.nhs.uk/ourservices/di...

Healthcare Inspectorate Wales

hiw.org.uk/

Community Health Councils - Wales

boardchc.nhs.wales/your-loc...

One role of CHCs is to monitor NHS Wales' healthcare services.

You can ask CHCs to visit a particular hospital, GP surgery etc and as far as I know forms can be submitted anonymously but check.

They also encourage people to contact them to further discuss their experiences (not sure if this can be anonymous).

There is a Board of Community Health Councils which I think looks at national issues and I guess collates information across the regional CHCs

boardchc.nhs.wales/

Annual Reports

Health Boards and Community Health Councils in Wales publish annual reports which I believe the public can access. I think people can access previous freedom of information (FOI) requests that have been submitted to Health Boards and CHCs. Public can access committee meetings. During pandemic these are probably held online.

Hywel Dda CHC public access to committee meetings

hywelddachc.nhs.wales/about...

I assume public access will be similar for other CHCs.

Aneurin Bevan Health Board - Freedom of Information (FOI)

abuhb.nhs.wales/about-us/fr...

I assume process will be similar for other health boards.

If you're unhappy with treatment for B12 deficiency it may be worth asking for help from your MS (Member of the Senedd) / Aelodau o'r Senedd AS

business.senedd.wales/mgFin...

May also be worth talking to your local MP as well.

MPs in Wales

members.parliament.uk/regio...

Blog post that mentions ref range for serum B12 for Cardiff and the Vale

Blog post was written in 2013 but as far as I know the ref range is still the same.

b12deficiency.info/cardiff-...

Other blogs posts that mention B12 deficiency and Wales

b12deficiency.info/70th-ann...

b12deficiency.info/the-nort...

News item from Bangor University about a B12 deficiency campaigner who is or was a student at Bangor

bangor.ac.uk/health-science...

Please pass anything here that might be useful to others with suspected or diagnosed PA or B12 deficiency from other causes.

I think it's massively under diagnosed.

NHS 111 Wales link about B12 and Folate deficiency

111.wales.nhs.uk/Anaemia,vi...

Simple explanation and some info that may be worth pointing out to unhelpful GPs

Cardiff Metropolitan University study about PA patients perception of treatment changes during pandemic.

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

PAS news items about letters to Health Ministers during pandemic, includes Wales.

pernicious-anaemia-society....

Some GP surgery websites have statements about B12 injections so may be worth searching for info on GP surgery website. Be warned that some of these statements might be unhelpful.

I have tried in the past to locate guidelines on management of B12 deficiency for health boards in Wales but drawn a blank. They might be hidden on a staff intranet system so possible that the only way to get hold of a copy is to submit a FOI (Freedom of Information) request to Health Board asking for a copy of or link to local B12 deficiency guidelines.

CHCs might be able to help get hold of the local b12 deficiency guidelines.

This next link suggests that Health Boards in Wales should spread information from NICE guidelines but use of NICE guidelines is not mandatory.

gov.wales/national-institut...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

New NICE guidelines on PA and B12 deficiency will be published in 2023.

nice.org.uk/guidance/indeve...

Click on "Project documents" then "Consultation Comments" to get a good idea of issues around diagnosis and treatment (over 40 pages).

Link to the Health Boards Formularies which I think are based on BNF (British National Formulary).

formulary.wales.nhs.uk/

Click on relevant Health Board in above link then Section 9 Nutrition and Blood

Healthwise Wales

healthwisewales.gov.wales/a...

Not sure if this project is still running.

Care Opinion (review website)

Not specific to Wales but may be useful for patients in Wales who want to comment on their health experiences.

careopinion.org.uk/

Comments can be anonymous.

Next link is not specific to Wales but is an interesting survey of self injection of B12 in UK

Patient Safety, Self-injection and B12 Deficiency: a UK Cross-sectional Survey

bjgp.org/content/early/2022...

Has some statements that I would like my GPs to read.

[Nackapan in reply to Sleepybunny]

my daughters now got polycystic overy syndrome

No idea could be linked

Seeing a specialist this month

Just to add to her list !

[Hidden in reply to Nackapan]

I am really sorry to hear this, one thing after another!

Perhaps look into connective tissue and B12.

Also a website PCOSDiva

Titled A PCOS Vitaimin you don't want to "B" without.

[Sleepybunny in reply to Sleepybunny]

wedgewood has written lots of useful posts on the forum about getting supplies for self injection.