High levels of b12!!!: Hi, My present... - Pernicious Anaemi...

Pernicious Anaemia Society

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High levels of b12!!!

Sunnyollie47 profile image
10 Replies

Hi,

My present GP has stopped my B12 injections, because B12 levels v.high. However his findings do not correspond to how I’m feeling; tired, forgetful and breathless when doing my normal exercise. When i was originally diagnosed with PA 5 years ago my then GP said my B12 level would be ‘sky high’ because of 3 monthly injections. I have had a six month gap, My GP has reviewed my latest blood and said my b12 levels are still high!! And will not restart my injections. I am beginning to feel upset about my health and not being listened to. Please advise, I am open to the GP being right if that’s your experience or opinion, thanks

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10 Replies
Nackapan profile image
Nackapan

No your Gp is wrong. B12 shoukd not be tested once on injections.

Frequency by symptoms not numbers.

On their guidelines.

PA is not cured it managed

Menna88 profile image
Menna88 in reply toNackapan

Hi Nackapan, could I please ask what guidelines say lead by symptoms. Thank you.

Nackapan profile image
Nackapan in reply toMenna88

Look at your local guidelines. Flowcharts usually

Look at Tracey Wittys links

Sleepybunny links

PAS information.

BNF

BSH

JoannePA profile image
JoannePA

I agree with the first comment. Your GP is most definitely wrong PA is life long and you will need injections. The guidelines are also clear that b12 should not be tested once on injections. Can you see another doctor in the practice?

Lurcher-lady profile image
Lurcher-lady in reply toJoannePA

Agree, plus you can ask for a printout of your blood results. That was an eye opener for me as despite my doctor saying my levels were high and therefore ok, it clearly stated on the results form that no need to retest after you have started supplementation. Doctor still refused to treat so I do it myself now, much less stressful 😉

wedgewood profile image
wedgewood

You doctor needs to read the guide lines for the management of P.A. which state that after LIFE-LONG treatment of B12 injections has started , that there is no need for B12 testing as long as the injections are keeping you symptom free . If it proves impossible to get your b12 injections reinstated , you must consider self injecting which is a cheap and ideal way to keep well . Most of us on this forum are forced to do this . An injection costs about £1.50 everything included . You can inject as often as required . It’s impossible to over inject . It’s.very safe . You can get all the information from this forum . So don’t get desperate . I know self injecting sounds daunting but once you get going it’s as routine as cleaning your teeth ! Nothing to worry about .

Ritchie1268 profile image
Ritchie1268

I had a GP do this when my regular GP was away.My regular GP knows I self inject weekly also but said to carry on having my regular 3 monthly injection at the surgery.

A GP contacted me after a blood test and was concerned my levels were over 2000. I tried to explain the guidelines state it's pointless testing once injections have started, to treat the symptoms and not go off the levels but she wouldn't have it.

I mentioned to my regular GP and he said not to worry about it and said he'd carry on with the 3 monthly at the surgery. He asked if I still self injected weekly and I said yes. His reply...... You're looking well, carry on!

I'm lucky to have a great GP that knows his stuff.

Can you see a different GP and hope they're better educated than your current one?

Jillymo profile image
Jillymo

Yet another ill informed Gp woth regard to treatment for PA - your treatment should be as others have already pointed out life long.If I were you I would bat your Dr some info from the PA society.

I know self inject because of such ignorance like many others on here just to keep the awful symptoms at bay. You have had some sound advice from other's on here so good luck as it can be a battle to get the correct treatment.

Sleepybunny profile image
Sleepybunny

Hi,

Some useful B12 links

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for B12 deficiency with an in range serum (total) B12 result.

1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.

3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.

4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.

5) Letters could contain some of the following

relevant test results

date of diagnosis

relevant family/personal medical history

quotes from UK B12 documents

requests for referrals to relevant specialists

The shorter the letter, the more likely the GP is to read it in my opinion.

NHS Complaints

patients-association.org.uk...

Local MP or devolved representative may be worth talking to if struggling to get adeqaute treatment.

A few go to Press/other media

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

NICE guidelines - experience of healthcare

Adults

nice.org.uk/guidance/cg138

NHS Complaints Advocacy

voiceability.org/about-advo...

pohwer.net/nhs-complaints-a...

advocacyproject.org.uk/what...

Parliamentary and Health Service Ombudsman - England

ombudsman.org.uk/

There are Ombudsmen in Wales, NI and Scotland for health issues.

Blog post about help if B12 injections stopped or frequency reduced

b12deficiency.info/are-your...

May also be worth looking up values/mission statement of your CCG or Health Board.

With a PA diagnosis, worth joining and talking to PAS who can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has useful articles and a page for health professionals that your GP might find helpful. You may need to be a PAS member to access some of the articles.

The articles include

"What to do if your treatment is changed" and

"Treatment is for Life"

pernicious-anaemia-society....

pernicious-anaemia-society....

Testing b12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment

(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...

I suspect your GP has some misconception (wrong ideas) about B12 deficiency.

B12 article from Mayo Clinic in US

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...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK BNF treatment guidance has changed since above blog post was written.

Should be more info about testing B12 levels during treatment in UK documents below.

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...

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF link below outlines two patterns of treatment

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

If you have neuro symptoms, are you on the treatment pattern for those with "neurological impairment"?

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient

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

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 in 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.

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so

1) try a search of forum posts using terms "local guidelines"

2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to or copy of local B12 deficiency guidelines.

See blog post below if you want to know why I think it's vital to know what's in the local guidelines for your area.

b12deficiency.info/gloucest...

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 am not medically trained.

Cherylclaire profile image
CherylclaireForum Support

cks.nice.org.uk (from the National Institute for health and Care Excellence in 2017) :

p18 of 28: "What monitoring of vitamin B12 or folate deficiency treatment is recommended ? "

"....... Ongoing monitoring of people being treated with vitamin B12 or folic acid is generally considered unnecessary (unless a lack of compliance with folate treatment is suspected, or anaemia recurs)"

p20 of 28: "What advice should I give to people about vitamin B12 ? "

" ....... Advise the person that they may need regular blood monitoring. The frequency of this will depend on their compliance with treatment, response to treatment, and the advice of their haematologist."

So it seems that NICE, who advise GPs on treatment, frequency, methodology, etc, do not see retesting serum B12 as pertinent, unless for the benefit of the patient - not currently the main reason for retesting that we are seeing all too often here, especially since the start of the pandemic. Lifelong injections for the alleviation of symptoms of incurable conditions should not need to be protected from costcutting exercises, but it seems that outside help is required now. Ignorance is not bliss for the patients caught up in this.

Perhaps in response to this, NICE are currently revising their advice re B12 deficiency - there was a consultation on the draft scope September-October 2021. The Pernicious Anaemia Society (PAS) and the B12 Deficiency Support Group and the B12 Society were among the contributors.

This makes me hopeful for the future.

BCSH (British Committee for Standards in Haematology) Guidelines quote BNF (British National Formulary) page 8, section C on differing loading doses for those with and those without neurological symptoms, and then add this:

"Treatment of Cobalamin Deficiency

..... Maintenance treatment for patients presenting without neurological deficitis with hydroxocobalamin 1000ug i.m. every three months. Those with initial neurological deficit should receive hydroxocobalamin 1000ug i.m. every two months. No further testing for cobalamin levels is required. "

NICE, BCSH, BNF: these are the big three in the UK regarding medical advice to GPs. It would be interesting to know where your GP is going for his advice !

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