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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Sunnyollie47
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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?
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 😉
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 .
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?
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.
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.
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.
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.
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.
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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