A general question for those who have got this far in their investigations. It is clear from my fairly short time reading the forum that the practises in various parts of the country vary significantly, despite there being (supposed) national guidelines on the treatment of B12.
I wonder if others have managed to find what their GP or Practice is using if they are not following the NICE or BSH guidelines.
From recent correspondence I've had with my neurologist (based in Kent), she gave me a copy of the attached flow chart, which comes from a Royal United Hospital Bath document - Page 5 of the full pdf available here: ruh.nhs.uk/For_Clinicians/d...
The document seems to have some useful information in it, but the treatment algorithm does not match either of the main guidelines.
In particular:
1. It doesn't recognise any treatment more robust than 6 initial / 3 monthly even where there is peripheral neuropathy or dementia
2. It doesn't seem to consider cases where macrocytosis is not present, yet all the other clinical signs are - (it suggests daily oral supplement of 50-100mcg OR 6 monthly check)
3. It also includes the option to give 1 injection / week for 2 weeks, checking B12 after 4 weeks.
4. It mentions the Schilling test - something that I understand hasn't been available for some time in the UK.
From looking at the references in the document, it appears to have been created in 2010 or not long afterwards, and therefore may be referencing older guidelines and versions of the BNF that have since been updated.
If this is in widespread use, I wonder if it is the cause of so many GPs and/or consultants sticking to the 6/3 treament. Does anyone have experience of it being used elsewhere in the country?
Ironically the further sources of information for patients gives the PAS as a link - and the patient.co.uk page it links to now contradicts the flow chart as it references the more recent guidance.
Interestingly, I found the following on the RUH Bath haematology department site:
How to interpret low B12 results.
Dr Knechtli has just completed a new and comprehensive review of B12 deficiency which will be available shortly on the Haematology Documents page. This document will act as a reference and also contains a useful algorithm for managing these patients.
It's not available yet, but it will be interesting to see if the updated version changes the algorithm to come in line. If so, I wonder whether that will be propagated to everyone who is currently using the old and arguably outdated version.
Any thoughts?
Gavin
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It's unclear from where they derive their treatment protocol. The system is different here in terms of organisation but seems to broadly follow NHS England guidelines on most things. Decisions on available drugs are separate though.
But on a quick glance they seem to abide by the NICE/BSH guidelines, at least more so than the Bath one.
As an engineer by training, I like data, so perhaps I'll try to generate a list of all the ones that are in 'compliance' with NICE/BSH and which ones aren't - it may give me and others in the affected areas more evidence to push for a treatment outside of their 'comfort zone'
Interesting. Useful to know how the condition is viewed and the treatment recommendations. On a quick read, the flow chart and guidelines don't seem to cover people with a 'normal' blood test result but with symptoms: no further investigation/treatment.
A two minute email this morning has lead to a very interesting email discussion - with the consultant haematologist who wrote the guideline document above!
I won't quote him, but I did get his permission to refer to the email.
As I suspected, he confirmed that the document was written before either NICE or BSH guidelines and the revised version of it has not yet occurred because of the complications of updating it to follow the BSH guidelines (he is working on a more compact v3, having skipped v2).
What he did say however, was that the BSH guidelines are in his opinion the 'gold standard' to follow. He also recognised the issue of people suffering from the clinical problems of B12 deficiency while testing 'normal'.
He was also of the opinion that, in a case of low B12 and paraesthesia, although the two may not be connected, it would be reasonable to treat as the BNF suggests - with alternate days until no further symptoms and then two monthly injections.
This is what I was seeking when I was presented with the flowchart from his guidelines by a consultant to suggest my request was over treatment!
He did say though that 1mg is a very large dose compared to the average daily need, so that that his new guidelines will likely recommend alternate days for 3 weeks and then reassess, but this would be an improvement in my opinion (as long as reassess means 'see if symptoms have been relieved and not 'can we still afford it')
So apparently the person who wrote the guidelines has recognised that things have moved on, but the guidelines and/or algorithms are still being used as 'gospel' elsewhere.
Unfortunately, he is outside of my area so I can't seek a referral to him, but it just goes to show the value of clinicians keeping up to date with guidance - and that sometimes it's worth researching where treatment plans come from.
Does anyone have enough academic knowledge to give me a clearer idea of two slightly different terms that are used in some of the guidelines and documents I am reading.
"Peripheral neuropathy" is one that I have seen used in some documents, and I take to refer to actual nerve damage in the extremities, hands and particularly feet, objectively measured with things like nerve conduction tests.
"Neurological symptoms" is used in the BNF and BSH guidelines as well as other documents, and appears to relate to a more hazy subjective set of symptoms, including paraesthesia, balance issues, etc., which may not be directly testable and may vary from patient to patient on a wide scale.
Is my understanding of the terms correct? If so, then how does one decide if they meet the 'neurological symptoms' test, when they might be significant to one person, but mild compared to another case.
So many of the issues around treatment of B12 deficiency seem to come down to how guidelines are interpreted, converted into local algorithms, or read by a clinician....sigh.
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