Can someone show me how to inject B12 the first time, please?

[Autumn55]

Hi, I suffer with PA and have been on 3 monthly B12 injections at my doctor's surgery for about 3 years. However, 3 months between injections is too long and I feel rubbish in between. I have had many conversations with different doctors at my surgery and they flatly refuse to let me have them any more frequently than 3 monthly. I have therefore decided I will have to source the injections and administer them myself. I am however nervous about injecting for the first time. I have asked the nurses at my surgery if they will show me and they have refused. Does anyone live local to me who I could physically meet and be shown how to do it for the first time? I would be so grateful if anyone is willing to do that for me. I live near Wellington/Taunton in Somerset.

[226lowlane]

My wife was similarly concerned about self injecting but watching a couple of You Tube videos gave all the info and it was straightforward. Might be good to have someone watch with you and be there the first few times though.

Ian

[HeartyGilly]

There are lots of very helpful videos on YouTube. I watched them several times before plucking up courage. Or, if you have a local village/town facebook page you might ask for a nurse/retired nurse to volunteer to observe your first one. Having someone there gives confidence.

[Sleepybunny]

Hi,

"I have had many conversations with different doctors at my surgery and they flatly refuse to let me have them any more frequently than 3 monthly."

MIght be worth one more try to get more b12 from your GPs.

1) UK recommended treatment for B12 deficiency without neuro symptoms is....

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

It used to say every 3 months but your GP may not know that advice in the BNF (British National Formulary) changed recently.

pernicious-anaemia-society....

2) UK recommended treatment for B12 deficiency WITH neuro symptoms is...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Do you have any neuro symptoms eg tingling, pins and needles, numbness, brain fog, memory problems, balance problems, migraine, tinnitus, muscle twitching, word finding difficulty, vertigo, restless legs syndrome plus others?

If yes to neuro symptoms, my understanding (I'm not medically trained) is that you should be on the second pattern of treatment if you're in UK.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

You have a PA diagnosis.

Your best bet is probably to join and talk to PAS (Pernicious Anaemia Society). They may be able to intervene with your GPs and at very least can pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

May be a PAS support group close to you if in UK.

Unhappy with Treatment (UK info)?

I feel it is more effective to put queries about treatment in a brief, polite letter to GP.

In UK, letters to GP are supposed to be filed with medical notes so are less likely to be ignored than requests/info passed on verbally or on photocopies.

Letters could contain symptoms, test results, personal/family medical history, extracts from relevant UK B12 documents etc.

Link below has letter templates to base own letters on. Lots of useful b12 info as well.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

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/

If you're being denied the recommended treatment, your local MP may be interested in your story.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

NICE CKS

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

If you do have neuro symptoms then may be worth passing info to GPs, possibly in a letter, about the potential consequences of under treatment.

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...

Other B12 info...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Help for GPs

1) Does your GP know that PAS (Pernicious Anaemia Society) have a section on their website for health professionals? It is free for them to join PAS as associate members.

pernicious-anaemia-society....

2) PAS library section has useful leaflets/articles eg " An Update for Medical Professionals: Diagnosis and Treatment " that some on forum have passed to GPs.

pernicious-anaemia-society....

I am not medically trained. More B12 info in pinned posts on this forum.

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). Don't think book shows updated BNF info.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

[fbirder]

Try having one more conversation with a doctor. This time point out to them that the guidelines for B12 injections have changed recently, from every three months to every two to three months. Ask them to check the online BNF to check.

Many doctors seem to be terrified of thinking for themselves. They insist on following guidelines (except the guideline that says they are allowed to act outside the guidelines when it's in the best interest of the patient). Now that the guideline has changed they may be more willing to think about increasing the frequency of your injections.