diagnosis

[Judedench]

GP just called after a lot of messages from me to be told I’m not B12 deficient as told 6 years ago I’m actually menopausal she saidI’m literally confused and gobsmacked and said I was clearly misdiagnosed then who do I sue I’m literally at the end of my tether and going to pay privately for my injections please call. Someone advise as they clearly have no clue what they are going

[Cherylclaire Forum Support]

Are you a member of the Pernicious Anaemia Society ? I would suggest joining PAS and contacting them about this. They may be able to help.

Firstly, I do not see where being menopausal would prevent you from (also ?) having PA/ B12 deficiency from other non-dietary causes. It does not make any sense.

What particular recent test result has convinced her that you have now no further need of B12 ? A high serum B12 ? Surely that would be expected so soon after your injection - wasn't it 2 weeks later ? Or perhaps the IFab test - which is known to be positive in only 40-60% of those with diagnosed PA. This is well documented in medical guidance and advice specifically for GPs.

You must feel very angry and let down. Have a look at the UK medical guidance to help make your case:

NICE guidelines (new ones due now in March 2024 but a draft is available online) :

National Institute for health and Care Excellence (NICE): cks.nice.org.uk/anaemia-b12-and-folate-deficiency ( and new NICE guidelines are not yet available as delayed for the second time but a draft copy from July 2023 (consultation draft) can be found: Vitamin B12 deficiency in over 16s: diagnosis and management)

British Committee for Standards in haematology (BCSH): Guidelines for the diagnosis and treatment of cobalamin and folate disorders : onlinelibrary.wiley.com

The British National Formulary (BNF) otherwise known as The Doctor's Bible

Get a copy of the diagnosis from 6 years ago, or blood tests from that time. Is current GP disputing a previous diagnosis, or was no formal diagnosis ever sought initially or perhaps just not recorded or not transferred at some point ?

I have no medical training, but this just seems like the logical next step.

[wedgewood]

Of course you are not B12 deficient as you have been receiving B12 injections . Now that they have been discontinued , you are feeling at the end of your tether . Ask your GP to kindly read the guidelines which will state that B12 levels do not need reading after commencement of injections .

If you fail to get your injections reinstated, don’t delay . I would self -inject . This is so much cheaper than getting private injections. Also mire convenient. You can inject I.M or Sub-cut .If you wish to self-inject, you can get the information on here .

[Sleepybunny]

Hi,

I'm sorry to read that you're having a hard time with your GP.

I left information on your last forum thread that might be useful.

I think it's good to put any queries about treatment into a letter to GP as I feel this is harder to ignore. Keep a copy of any communication with GP as potentially useful if you have to make a formal complaint.

b12info.com/writing-to-your...

Link to thread about Patient Safety, has links for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

If you join PAS as a member you can access various useful leaflets including "Helpsheet for Patient-GP Discussion."

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

If you ring PAS helpline they may be able to suggest info to pass to your GP.

Some UK forum members have been supported by person who runs B12info.com website.

b12info.com/

"they clearly have no clue what they are going"

Many of us here have met health professionals with a poor understanding of B12 deficiency and many also resort to treating themselves.

Wrong ideas that health professionals have about B12 deficiency

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

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.

I wish you all the best...I tried for years to get adequate treatment and realised when I was already showing signs of dementia and multiple neurological problems that my only option was to treat myself.

[B12life]

what was your b12 level before your first injection?

[Wwwdot]

Hi Judedench

I am so upset to hear of yet another perso being treated in such an uncaring and unsupportive way. Well don’t worry it will be sorted in time with all the fabulous supposed advice from members in the forum.

Meanwhile, as hard as it is, you need to accept that when it comes to PA and B12 deficiency we have to row our own boat. I self inject daily now and I am feeling so much better for it even though my GP thinks I am ridiculous and that once every 12 weeks is adequate.

It’s a tough realisation but you do have a choice to take control of your life and get your health back on track. Unfortunately relying on medics means you will go through this distress over and over again.

Big warm hugs from us all

🤗🤗🤗