how gh b12

[Londone16]

I just had a blood test done and my b12 is high. I have pernicious anaemia and have injections every 3 months.

my gp has told me to stop the injections for 6 months and re do the blood test.

should I be worried ?

[Nackapan]

No.Your levels shoukd be high on B12 injections.

Testing not necessary when on b12 injections.

Your Gp is not reading his/ her guidelines.

Nice

Injections are for life with PA or an absorbtion problem.

You do well to be on 3 monthly.

The bare minimum.

To have yours stopped is inexcusable

Get back to them before your symptoms return .

As well as putting a letter in ,which will be scanned on your notes.

Just s brief one.

At least a bit of time to get them reinstated before due !

[Londone16 in reply to Nackapan]

thank you

[wedgewood]

Nakapan had given you great advice . But get back to us if your GP does not reinstate your injections , which have to be FOR LIFE .

[jade_s]

You might the info in these letter writing templates helpful b12deficiency.info/writing-...

See also

pernicious-anaemia-society....

b12deficiency.info/what-to-...

[Londone16 in reply to jade_s]

thank you

[Sleepybunny]

Hi,

High levels of B12 if on regular injections is not unusual.

Personally I am worried on your behalf that your doctor has said to stop your injections.

I'm not medically trained but I think that could potentially put you at risk of developing neurological symptoms.

PA requires lifelong treatment.

For the moment, I'm assuming you're in UK. Let me know if you're in another country.

I post a lot of information so I suggest taking at least a week to look through it. Some links may have details that could be upsetting.

Treatment

You mention that you get injections every 3 months.

If you have or had neurological symptoms, my understanding is that you should be on the treatment pattern "For people with neurological involvement" described in link below.

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

How many loading injections did you get when first diagnosed?

Neurological symptoms include tingling, pins and needles, numbness, migraine, tremors, restless legs, insect crawling sensations, brain fog and many more.

See symptoms lists below.

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.

Are you a member of the Pernicious Anaemia Society?

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful articles, including "Treatment is for Life".

pernicious-anaemia-society....

Some PAS members print these out for their GPs.

UK B12 documents

NHS article about B12 deficiency (simply written)

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

BSH Cobalamin and Folate Guidelines (aimed at researchers and 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 (aimed at health professionals and patients)

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2024.

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

Local B12 deficiency guidelines

I urge UK forum members to track down the B12 deficiency guidelines being used by their ICB (Integrated Care Board) in England and Health Board in Wales/Scotland as their GPs are likely to look at these.

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

If you're in UK and can't find the relevant guidelines online or by searching forum posts here 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.

Some of these local guidelines are not helpful. See blog post below about a UK area with unhelpful B12 deficiency guidelines.

b12deficiency.info/gloucest...

Misconceptions (wrong ideas) about B12 deficiency

Many forum members have met health professionals with poor knowledge of B12 deficiency.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US

Aimed at researchers and health professionals. Could be a good one to pass on to your GP.

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.

Diagnosis and Treatment Pitfalls

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

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

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about being under treated for B12 deficiency with neuro symptoms.

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

Help for GPs

1) PAS have a section on their website for health professionals.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and other interested people who are looking into B12.

They have regular zoom meetings and there is a conference in Cambridge UK later this year.

club-12.org/

Reluctant GP

If your GP is reluctant to restart your injections then it may be worth mentioning in any letter or conversation that delayed or inadequate treatment could lead to permanent neurological damage including damage to spinal cord.

Your GP may find this PAS leaflet about SACD (sub acute combined degeneration of the spinal cord) interesting to read.

pernicious-anaemia-society....

Testing during Treatment

I don't know why your GP has tested your B12 levels. See articles below .

PAS article "Testing B12 During Treatment"

Has some useful quotes from UK health documents.

pernicious-anaemia-society....

Article from Dutch B12 website "Testing B12 during treatment"

stichtingb12tekort.nl/engli...

Many UK forum members turn to treating themselves when NHS treatment is not enough.

Some get extra injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort try self injection (SI).

[Gambit62 Administrator]

You should be worried about your GP not about your B12 results - and your GP should be worried about you not your B12 results. Interpreting serum B12 after injections is extremely difficult. Your serum B12 levels will be off the scale after an injection and then gradually fall over time. The average with hydroxocobalamin is for them to low levels in 2 months - however, the studies that were used for this showed huge variation - with levels taking several years to drop in some people.

the BCSH guidelines don't recommend not testing after treatment starts unless there is a suspicion that the treatment regime hasn't been complied with, ie treatment should be for life in the case of an absorption problem and should not be determined by serum B12 levels.

onlinelibrary.wiley.com/doi...

you could also suggest that your GP takes a look at this area of the PAS website which is focused on helping medical professionals improve the diagnosis and treatment of PA (and other absorption problems)

pernicious-anaemia-society....

[Londone16 in reply to Gambit62]

thank you

[Peder1962]

According to b12 specialist ass professor dr Schneede at Umeå lasarett, the minimum frequency for PA patients is every 4th week. You might need b12 injections more often.

[Londone16 in reply to Peder1962]

thank you

[Cherylclaire Forum Support in reply to Peder1962]

This frequency and treatment regime is unlikely to be available on the NHS in the UK, though some GPs will treat B12 with a frequency based on monitoring and observation and discussions with their patient in order to pre-empt symptom return. This individual approach is unfortunately rare, though.

Londone16 If you are UK-based, the medical guidance that GPs are supposed to follow are published by NICE (National Institute for health and Care Excellence), BNF (British National Formulary - the "Doctor's Bible") and BCSH (British Committee of Standards in Haematology). None of them think testing after B12 injections have started is advisible.

After my loading dose of 6 injections and into my 3-monthly "maintenance" injections, my GP tested my B12 in 2016 - when it went from over measurable amount after injection (>2000 ng/L) to two months later, without further injection, being 860 ng/L - still over the limit (197 -771 ng/L) but equally meaningless. I'd never felt worse. Eventually it was found that I had functional B12 deficiency, and was given 2 injections a week for six months and later started self-injecting. For me, frequent injections help me to managed my symptoms better and this is my main concern- not high serum B12. Which is why my GP stopped testing my B12 seven years ago. "Pointless" she said (correctly).

There is no known upper level at which B12 becomes detrimental to health. For this reason, B12 is used to flush poison from patients systems in emergency situations, involving introduction of huge amounts. It saves lives. Those with recognised inherited conditions that prevent them being able to get B12 to cell/tissue are prescribed two B12 injections a week requested by DNA specialists. They need this to survive.

You have a pernicious anaemia diagnosis - you will need B12 for life. Not as a cure, since there is none, but to enable you to control your symptoms.

You should not be worried about your serum B12 level at all - Gambit62 is right, you should be worried about your GP.

Let us hope that the new NICE guidelines due out in November this year address the problem that those with B12 deficiency are increasingly having to face: under-treatment or withdrawal of lifelong treatment, even where PA has been diagnosed.

[Londone16 in reply to Cherylclaire]

thank you. I am in the uk

[Hedgehogs15 in reply to Cherylclaire]

really well said Cherylclaire

[Sleepybunny in reply to Cherylclaire]

Hi Cherylclaire,

Publishing date for new NICE guidelines for PA (Pernicious Anaemia) and B12 deficiency has been pushed back to 16 January 2024.

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

[PhilAB]

I would be worried about your doctor.

[Hedgehogs15]

yes you should be worried.

There are a lot of lovely people on this forum far more knowledgeable than me.

But from my own experience your doctor is very wrong.

A young GP stopped mine several years ago for the same reason and I went downhill to the points of no return. I’ve been having B12 injections now every 4 weeks and whilst I feel better I will never be the same.

I have had pernicious anaemia for over 40 years. I wish you well. Perhaps try to see another doctor at your health centre x

[Londone16 in reply to Hedgehogs15]

thank you