UK companies offering b12 injections

[dandino100]

Hi guys,I was wondering about the legality or grey area of the growing numbers of visiting b12 "technicians"offering to inject for between £40/50.

I have been having nhs injections for 40years and now I'm told I don't need them!!

It's a minefield

[Gambit62 Administrator]

injectable B12 is only covered by prescription only rules if it is being used for medical purposes. If it is being used as a beauty / slimming treatment it isn't covered by the same rules (or the same quality control requirements) so the companies are probably using this. They need to be careful though that they aren't marketing it as a medicinal product.

[dandino100 in reply to Gambit62]

Thank you,why is it that govt has to be so awkward,why can chemists just not give a medically competent injection for £20/25 and let us be the judge of our needs,

I see all over the continent it's so cheap,

[Gambit62 Administrator in reply to dandino100]

apparently injection is so dangerous that the general public can't be trusted to do it. - well that was basically the answer that a previous health minister gave. Seems strange that you don't need a prescription to obtain syringes and needles, though possibly the response there would be that they might be used for animals rather than humans but ...

Having said that there have been some really worrying suggestions about what it is safe to inject so ...

[clivealive Forum Support]

Hi dandino100 I'm perturbed and concerned about your remarks "I have been having nhs injections for 40 years and now I'm told I don't need them!!"

What reason was given after all this long while?

[dandino100 in reply to clivealive]

The senior doctor in the group told the nurse to test my levels,and upon results TEXTED ME to tell me I didn't need suplimentation as my levels were within normal range no discussion no appeal...

[wedgewood in reply to dandino100]

If you were diagnosed with Pernicious Anaemia 40 years ago , then treatment ( must be injections not tablets ) is FOR LIFE ! If this is the case , you must insist on injections , or make a formal complaint.

[Sleepybunny]

Hi,

Like wedgewood I was concerned to read

"been having nhs injections for 40years and now I'm told I don't need them" and

"senior doctor in the group told the nurse to test my levels,and upon results TEXTED ME to tell me I didn't need suplimentation"

I suggest it's worth joining and talking to PAS if you have a PA diagnosis. PAS can sometimes intervene directly on behalf of PAS members.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

On PAS website, there is are the articles/leaflets "Treatment is for life" and "An Update for Medical Professionals: Diagnosis and Treatment" which some forum members have given to their GPs.

pernicious-anaemia-society.... See Page 1.

There are stories on Martyn Hooper's PA blog about injections being stopped.

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

martynhooper.com/2017/06/22...

B12 Deficiency Info website

b12deficiency.info/

There is a blog post on above website about help if injections are stopped.

b12deficiency.info/blog/201...

If you have B12 deficiency and your injections are stopped, this could put you at risk of further deterioration including neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in above link plus letter templates.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I assume your GP has stopped injections because your B12 levels are high. I suspect that GP may have misunderstood the guidelines below, which specify that it is irrelevant to retest B12 levels once treatment has started.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Other UK B12 documents

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

See also summary of B12 documents in third pinned post on this forum which addresses issue of treatment being stopped after retesting B12 levels.

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). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

Help for GPs

Might be worth referring GPs to

1) Section on PAS website for health professionals

pernicious-anaemia-society....

2) I gave a copy of Martyn Hooper's book to GPs "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

3) I believe PAS has access to a GP who understands PA. Might be possible for your GP to talk to that GP.

If you were diagnosed with PA, 40 years ago, do you have proof of PA diagnosis?

Some forum members have found that when they challenged GPs over changes to treatment, their PA diagnosis was not in their notes.

Have you ever got a complete set of medical records?

If you don't have a PA diagnosis, do you mind me asking why you are on B12 injections?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Will add more if I can think of anything.

I am not medically trained.