How much B12 is enough?: I tried to get... - Pernicious Anaemi...

Pernicious Anaemia Society

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How much B12 is enough?

Alfabeta profile image
7 Replies

I tried to get my doctor to give me b12 injections every 8 weeks instead of every 12. I was retested 6/7 weeks after my injection and told my lb12 level was within range.

Now, I know that this doesn’t mean much but it seems to me that it is almost impossible to convince a doctor to give one more regular injections if ones b12 remains within range after 6 weeks of having an injection.

How far above normal does it need to be?

I’ve read on here that the doctor needs to treat the symptoms regardless of the levels but I doubt that this seems logical to a doctor. If a glass is full or virtually full, why would one fill it further - this seems to be their thinking.

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Alfabeta profile image
Alfabeta
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7 Replies
wedgewood profile image
wedgewood

It is one of the mysteries of P.A. Different people need B12 injections at different intervals that keep the symptoms at bay . It is the symptoms that need treating , not the blood test results . Until this becomes official practise in the NHS. the suffering that patients go through will not cease. In my circle of acquaintances, I know 3 people with P.A. One needs 2 injections a day , one needs 1 about every month , another , my immediate neighbour , is fine on one every three months . I need a weekly injection . It is not known why this is so . If your GP will not recognise this , and refuses to budge , you have to take your health and well-being into your own hands , as two of the above people have had to do . This means self-injections,at intervals that keep the symptoms at bay (and what a huge choice we have of those ! ) Or, if you have the necessary financial resources , you can get injections privately . That’s how it is I’m afraid . The only good thing is, that if you buy the necessary items in bulk , a self- injection need cost not much more than £1.30 . A trip to the surgery could cost more than that .

The guide lines regarding B12 injections , have recently been changed , so you should be able to get an injection every two months . I’m sure that someone will give you the reference for you to down load it . Best wishes .

clivealive profile image
clivealiveForum Support in reply towedgewood

Alfabeta

The link wedgewood mentioned:

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

wedgewood profile image
wedgewood in reply toclivealive

Thank you, clivealive .

Sleepybunny profile image
Sleepybunny

Hi,

"I was retested 6/7 weeks after my injection and told my lb12 level was within range."

BSH Cobalamin and Folate Guidelines below indicate that retesting B12 levels after treatment has started is unnecessary.

There is a useful summary of B12 documents in third pinned post on this forum which mentions issue of retesting after treatment has started.

If you have neuro symptoms eg tingling, pins and needles, tinnitus, tremors, restless legs, memory problems, balance problems etc UK guidelines indicate jabs should be every 2 months.

BSH Cobalamin and Folate Guidelines

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

BSH guidelines indicate that patients with cobalamin (B12) deficiency with neuro symptoms should have a B12 loading jab every other day for as long as symptoms continue to improve then a jab every 2 months. This applies to all causes of B12 deficiency even diet.

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...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Have you considered writing a letter to GP which could include symptoms, medical history, test results, extracts from B12 guidelines?

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link 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/

Are your GP aware of the potential consequences of under treatment? Might be worth drawing it to their attention. See links below.

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...

I am not medically trained.

natterjack1 profile image
natterjack1

I am very fortunate in that I have 'trained' my surgery to give me injections every 6 weeks. It's been about 15 years since i was first diagnosed and it took some time to establish what was right for me. I now feel untroubled by the condition apart from residual tingling on left side hand and leg. I am anxious that I am very much at the mercy of the GP and can't move house to a different area and risk poorer medical care.

My tip is to make appointments just a few days earlier each time. If asked cite a reason like you are about to go on holiday for a few weeks and want to have sufficient energy to enjoy it! Once your injections are closer on a regular basis the nurse will quibble the point less as a pattern has been set. I never see the GP on the subject and rarely for anything else just in case they want then to review all my meds!!!

Persevere,keep a positive attitude at the surgery, so they dont think your reqyest is unreasonable!!!

Alfabeta profile image
Alfabeta in reply tonatterjack1

What a good idea, I’ll try that. Thank you

Snowflake16 profile image
Snowflake16

Have you got a practice nurse at your surgery that you get on well with? I spoke to one of the nurses at my surgery about my symptoms and asked if I could get my B12 every 8 weeks - she spoke to one of the GPs and know I get my injections 8 weekly.

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