During a recent appointment for a colonoscopy my GP has insisted I go in for blood tests. However my procedure and outcome for the colonoscopy were fine, but I am asking for a repeat prescription for my B12 (agreed I self inject at home for the last year). I know I will be told I cannot have a repeat prescription tomorrow unless i have 'blood tests'... no idea why I need them? Is there any quick response/template for summarise that testing for B12 whilst on monthly injections is pointless so that I can point this out to my doctor whilst on my triage call tomorrow? I have trouble remember how it works with regard to high levels of B12, but we can not utilise it properly.. Another battle is he will say I do not have PA, although I have neurological symptoms and have explained to him that my life has improved dramatically since B12 injections. I have no longer have balance issues, my tinnitus has cleared up, my breathing is amazing, I can paddleboard, ride a bike, walk up stairs etc... I will point these out to him, and ask why he would want to take my new found life and freedom away from me with a simple and safe vitamin injection.
Why can't we have this vitamin OTC in England... sigh!
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages).
Local B12 deficiency guidelines
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated care Board) or Health Board.
Some local B12 deficiency guidelines in UK are not helpful...see blog post below.
If you can't find local B12 deficiency guidelines online or on this forum (some have been posted here in past) then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
"Why can't we have this vitamin OTC in England... sigh!"
Tracy Witty of B12 Info.com (formerly B12 Deficiency Info) has been campaigning on this issue for over 8 years.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Hi, thank you so much. Yes I have, they have had numerous blood tests, and are currently under neurology at UCLH.. nearly 2 years and no diagnosis. At least me and my daughter know it's only B12 and can get help x
Apologies for going off on a tangent, just thought it might help your family member.
There may also be something useful here for you.
I know from my own experience that it's possible to have severe B12 deficiency with normal range serum (total) B12. I count myself extremely lucky to have avoided permanent dementia and permanent spinal cord damage.
You may want to look into Functional B12 Deficiency, this is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops signs of deficiency.
MMA, Homocysteine and Active B12 (also known as Holotranscobalamin) may help to diagnose Functional B12 deficiency.
I was given many labels including FND (Functional Neurological Disorder) and had a vast array of symptoms including many neuro symptoms.
"nearly 2 years and no diagnosis"
A PAS survey some years ago showed that some people waited 10 years or more to get a diagnosis of PA (Pernicious Anaemia).
A negative result in IFA (Intrinsic Factor Antibody) test does not rule out PA . Unfortunately some UK doctors may not be aware that it is possible to have Antibody Negative PA. See diagnostic flowchart in my other reply.
Some links below may have upsetting details.
Misdiagnosis of B12 deficiency as other conditions
UK guidance eg NICE CKS and BSH Cobalamin and Folate guidelines suggest that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within range.
Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.
It took me many years and a lot of reading to work out what was wrong with me and I had very difficult experiences with doctors. These days I want to help other people by passing that info on.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Why are blood tests unreliable once injections have started?
No life 
Blood tests advice please
GP wants to take bloods to make sure my b12 is not to high
Ferritin up and b12 up - translation of blood tests, please?
