The Vitamin B12 Deficiency Guideline in Over 16's has been published.
What does this mean for those with Pernicious Anaemia whether formally diagnosed or not?
What does it mean with those struggling to get sufficiently frequent treatment for their B12 deficiency?
What does it mean for the Pernicious Anaemia Society, our members, and those conversations we all have with the healthcare profession about our condition?
Are we happy with what the guideline says? In part yes! But there is so much still wrong, not just with the guideline but with the tests, the current practice, the level of awareness in the healthcare profession and lack of research that we feel the real journey is only just about to start.
I have read your statement, and agree with all the points raised. The guidelines are definitely a step in the right direction, but some points do not go far enough.One query I do have is I cannot see frequency of injections mentioned anywhere. It does state that if symptoms have not improved sufficiently to 'increase the frequency of injections if needed, in line with the summary of product characteristics'. But I do not know what that actually means, and I'm sure GPs will interpret it as they choose......
this was a point we and other stakeholders raised, NICE's response is that it is outside their remit to provide dosing frequency. The biggest issue still is the huge gap between what the research says, what NICE say, and what actually happens in practice especially in primary care due to lack of knowledge and awareness, cost and time pressures. We are hopeful that by getting this more out there constructive debate can take place. We have to be realistic though that GPs will be looking for ways to use the guidelinenot to increase their workload or costs!
Good luck getting that sort of frequency though. Spoke to my Doc a month ago, who assured me that one jab every three months is enough to reverse the deficiency and that any symptoms remaining would have nothing to do with B12 deficiency at all! I did politely ask her to research her statement for accuracy, but if looks could kill 🤬
I was given 2 injections a week for 6 months - because I continued to get worse after B12 injections were started for B12 deficiency. The "one jab every three months" was killing me.
Once my GP had managed to get my MMA tested (on third attempt) and it was found to be raised, I was diagnosed with functional B12 deficiency -a diagnosis confirmed by the testing laboratory, as my GP had already tested for and ruled out renal problems as a possible cause.
But my excellent GP has moved on, and NICE make no mention at all of functional B12 deficiency in terms of diagnosis or treatment.
How many other GPs would have known to recognise and test for this condition, what test to ask for, where to obtain it, and what else to rule out ? And then know how to treat it ?
(Answer = none, if it never gets mentioned !)
Real answers :
1) Recognition: B12 injections having no effect on symptoms and deterioration continuing
2) Test: Methylmalonic acid (MMA) serum test, since it is possible that the B12 is not making the necessary link with MMA to get B12 to cells and tissues , causing a useless build-up of both in bloodstream
3) Request: Most local hospitals do not seem to offer this test but some major hospitals might. Not so easy from primary care, but a haematologist would have better luck: mine tested my MMA four times.
4) Elimination of other causes for raised MMA: renal problems can be ruled out with a blood test. SIBO (small intestine bacterial overgrowth) can be ruled out with a fasting breath test series lasting about 3-4 hours. Haematology again probably the easiest route for this, if MMA proves to be raised.
5) Treatment: Restart the patient with a new frequency of EOD injections (even if your nurses will only give 2 injections a week as they are too busy) and monitor the patient's response (not their serum B12) to ensure treatment is now effective. If so, continue the treatment.
PS: When I again started to deteriorate after 6 months, My GP reduced injections to one per month and sent me to secondary care, having done all she could. The nurses were relieved. The consultants found nothing else. I started self injecting EOD. Even on this frequency, it took three years for my MMA to finally drop into range on the 6th MMA test.
I still find that I need two B12injections a week to manage my symptoms. Most of the time, that is enough. It certainly isn't a cure. If any of the symptoms I have been left with had been anything else, my GP or any of the numerous consultants would have discovered it by now.
This has all cost the NHS - but not nearly as much as it has cost me. My career for one.
For NICE not to have even mentioned functional B12 deficiency is disheartening.
Interesting that the NICE guidelines suggest only cyano, methyl and adenosyl as oral, not hydroxo - at 1.5.13. Any idea why? And how depressing that they state that they do not see the recommendations leading to a significant change in practice! Cheers
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