2018 Diagnosed with low B12 ( Due to P.P.i. 2 X 20Mg daily). Receiving 10 weekly B12 IM injections
2023 January practice call me to advise I will no longer get injections as "I do not meet the criteria".
GP / practice fail to respond to requests for explanation .
2023 February I raised a complaint and SAR
2023 May I request a second opinion, ( partly due to their failure to respond to complaint / S.A.R.)
2023 June Practice responds to my complaint stating " in regard to the B12 injections you have requested I would like to let you know that the reqeust has been discussed with the practice partners at the partners meeting . The partners are in agreement that, unfortunately, you do not meet the criteria. Your case has been discussed with the clinical commissioning group who have agreed with our decision" .
Other than alluding to a B12 reading in the 200s I am unable to ascertain any information as to how they have arrived at this decision or what was disclosed to the CCQ.
( CCQ have also failed to respond to S.A.R. for copies of what was provided by GP practice regarding the removal of B12 injections
I am now forced to escalate to PHSO but need credible supporting evidence.
Any help gratefully received, in particular direction to the exact part of the Nice guidelines that state injections are for life.
Many Thanks
Tim
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b12timbo
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I was only diagnosed with low B12 as a result of a blood test, due to presenting with, amongst others, chronic fatigue, brain fog and pins and needles.
I'm sorry you've gotten the runaround, it's happening to a lot of people in the UK. I can't access NICE guidelines because I"m not in the UK, but perhaps this will work for you cks.nice.org.uk/anaemia-b12...
PPI’s by their very nature to protect the stomach stop you absorbing all vitamins and minerals so your exhaicould be due to any number of deficiencies. Did they do blood tests to check your b12 before deciding to stop them?
I suppose because your low b12 was blame on the PPIs and not on pernicious anemia? But pernicious anemia is difficult to rule out, as you can have a negative IFA test (intrinsic factor antibody) despite having pernicious anemia. On what grounds did the doctor rule out PA? Just because there is a possible explanation, the PPIs, that isn't necessarily the right explanation. You shouldn't have to become deficient again before getting treatment. Once discovered, future low b12 should be prevented. Six months of deficiency may cause permanent nerve damage.
If you haven't already, I suggest tracking down the local B12 deficiency guidelines for your ICB (Integrated Care Board - England) or Health Board - Wales/Scotland, not sure about NI.
If you can't find the local B12 deficiency guidelines online or by searching forum posts here, best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are being used locally and for a link to or copy of them.
May be worth a search online for "name of ICB/Health board criteria B12 injections".
Put FOI or Freedom of Information in search box on GP surgery website or on ICB/Health Board website to take you to a page explaining the process.
Have you talked to your MP or devolved representative?
Should be something useful in these links.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, 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 forum members here have been diagnosed with high levels of stomach acid and put on PPIs only to find out later that they actually had low levels of stomach acid. The symptoms of high and low levels are very similar.
Low levels of stomach acid can be associated with PA(Pernicious Anaemia).
Reading through Sleepybunny 's reply, it may be pertinent to find out why you were put on PPIs in the first instance. It is possible that this was because of a mistaken belief that you had too much acid (rather than not enough) - as outwardly, this would result in the same symptom. Worth checking ?
I found some interesting articles when I searched online for "PPI B12 deficiency UK" including a detailed document
Your ICB (Integrated Care Board) or Health Board may have published something on PPIs and B12 deficiency.
There is a form of gastritis associated with PA (Pernicious Anaemia) called AMAG, autoimmune metaplastic atrophic gastritis. Low stomach acid is a symptom of AMAG.
Link about gastritis from GUTS UK charity, AMAG is mentioned.
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B12 injections been stopped
GP stopped B12 injections
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GP stopped B12 injections
