My GP wants me to have blood tests... - Pernicious Anaemi...

Pernicious Anaemia Society

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My GP wants me to have blood tests...

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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!

Thanks for all your support!

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7 Replies
Sleepybunny profile image
Sleepybunny

Hi,

These links might be useful

PAS article - has useful quotes

"Testing B12 during Treatment"

pernicious-anaemia-society....

Stitchting B12 Tekort article- Dutch website with English articles.

(units, ref ranges, treatment patterns may vary from UK)

"Testing B12 during Treatment"

stichtingb12tekort.nl/engli...

B12 Institute - Netherlands

Diagnosis and Treatment Pitfalls

(units, ref ranges, treatment patterns may vary from UK)

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

Other articles that might be of interest

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.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Unhappy with Treatment (UK info)?

I think it's more effective to put queries about treatment/diagnosis into a letter to GP as I feel it's less likely to be ignored.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

See thread I started about Patient Safety recently, has lots of useful links for those who've had difficult health experiences.

healthunlocked.com/pasoc/po...

Might be worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

Have a look through these documents...

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published later this year (2023).

nice.org.uk/guidance/indeve...

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.

b12deficiency.info/gloucest...

CCGs (Clinical Commissioning Groups) were replaced by ICBs in Engalnd in July 2022.

List of ICBs in England

nhs.uk/nhs-services/find-yo...

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.

b12deficiency.info/b12-otc-...

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.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I'm not medically trained just someone who struggled for many years with undiagnosed and untreated B12 deficiency.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

I noticed you had posted about a family member with neuro issues on another forum.

Just wondered if they had been checked for B12 deficiency.

in reply toSleepybunny

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

Sleepybunny profile image
Sleepybunny in reply to

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

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

Many on here seem to have various misdiagnoses.

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.

b12deficiency.info/your-ser...

Link about what to do next if B12 deficiency suspected.

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Many of the symptoms you mentioned that your family member has can be found on lists of B12 deficiency symptoms.

There are many potential causes of B12 deficiency, maybe check these lists to see if any of the following risk factors are present.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Sorry again for going off on a tangent.

I watched a family member fade away into dementia and knowing my own issues, I'm now convinced that they had B12 deficiency.

Rexz profile image
Rexz in reply toSleepybunny

My gosh Sleepbunny your so very well referenced info is, as always, amazing! You sure you're not the Energizer Bunny in cognito? 😎

Sleepybunny profile image
Sleepybunny in reply toRexz

Sometimes I wish I was the Energizer Bunny...

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.

in reply toSleepybunny

Thank you! I too have used this knowledge and passed it on to whoever will listen.

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