Why so many blood tests

[Sunny999]

Hello

Injections changed to oral b12 for PA. have to have regular blood tests for a year or more, can you tell me why this is required? Will be happy if it works but doesn't seem hopeful.

Many thanks

[fbirder]

It is required because your doctor is either evil or is trying to save money.

Write to your doctor demanding injections as described by the BNF. Say that you need injections because you cannot absorb oral B12. Say that you are scared witless of irreversible nerve damage if you are not treated correctly.

Send copies to the practice manager, your local MP, local press, radio and TV. Make sure the list of recipients is on the heading of the letter you send to the GP. Make them know that you aren't alone.

[Sunny999 in reply to fbirder]

Many thanks for the reply

[Sleepybunny]

Hi,

Might be worth checking if your GP surgery is using up to date guidance.

See PAS news item below which explains up to date guidance on B12 treatment during pandemic.

pernicious-anaemia-society....

Are you a PAS member?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

Have you thought about ringing their helpline?

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives

If you are struggling to get adequate B12 treatment, may be worth contacting your MP or devolved representative if you're in Wales, Scotland, NI.

The UK document below makes it clear that retesting b12 levels after treatment has started is irrelevant.

BSH Cobalamin and Folate Guidelines

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

Articles below are from Dutch B12 website.

Units of measurement and reference ranges may vary from those in UK.

Testing B12 during treatment

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

I am not medically trained.

[Sunny999 in reply to Sleepybunny]

Thank you for the information.

[Gambit62 Administrator]

Link to the last guidance I am aware of from the BHSC on treatment for B12 absorption problems during the COVID-19 pandemic.

b-s-h.org.uk/media/18259/bs...

Frequent blood tests not mentioned, and general wisdom would be that they aren't appropriate or necessary - your GP should be going by symptoms rather than wasting money on inconclusive blood tests.

Some of us do find high dose oral can be effective - though to be honest I doubt I would personally cope on just 1000mcg a day. However, they are a long way from working for all.

There are some clinical trials for oral B12 going on out there but one of the ethical conditions for a clinical trial is that patients should be given all the information to make an informed decision about whether they wish to participate. It may be worth asking why the change has been made and if it is part of a clinical trial then pointing out that you haven't been given any information relating to making an informed decision.

[Sunny999 in reply to Gambit62]

Many thanks,

[FlipperTD]

This is a tricky one! However it's already been covered more than adequately by others.

Terms to consider are 'Informed consent' [You should be informed about, and agree to, any changes once the reasoning has been explained.]

'Ethical approval' is another. Has this proposal been approved by an Ethics committee?

If it's a study then it needs ethical approval. Which boils down to

'Am I doing this for you, or are you doing this for me?'

Good luck!

[Sleepybunny in reply to FlipperTD]

Hi,

Interesting point about Informed Consent, FlipperTD.

I think Gloucestershire is trying to move majority of patients onto oral B12 tablets permanently and I don't think many patients have given informed consent for this.

b12deficiency.info/blog/202...

[briarhillcat]

If you have PA then you NEED the injections. anything taken orally does not work. Do not let them wear you down and say tablets are what you need. We have all had problems with our GPs over this and they really do not understand. Get the help you need. We are here for you.

[Sunny999]

Many thanks