Hoping that someone can help Dawn2212black , who replied yesterday to my "B12 deficiency tongue photo" post.
I think she might get more response from a new post as her reply was quite far down the page. I found it quite worrying, and I'm sure we could get some information to help her:
Her B12 blood test result was 120 ng/L (range 150-1000 ng/L) in July.
Her problem is that her GP seems to believe that new government guidelines require any result above 115 ng/L to be treated with oral supplements ( !!!!)
What she probably needs is access to the latest medical guidelines so that she can prove to her GP that this is not what is needed or advised.
I'm unable to provide these links - can anyone help with this ?
Not sure how much these will help - they’re actually horribly wrong (shocking they don’t know that 😬), don’t mention newly diagnosed, loading doses, or the need for B12 injections and intensive treatment regime when neurological symptoms are present (even during covid due to potential for irreversible neurological damage). Nor the fact that oral B12 doesn’t work fior everyone, and that when B12 levels are significantly deficient on diagnosis, 6 x loading doses are required to get levels up quickly (some can maintain on daily high dose oral supplements (1,000 mcg) after initial loading doses, many can’t).
'Patients should be advised to monitor their symptoms and should contact their GP if they begin to experience neurological or neuropsychiatric symptoms such as pins and needles, numbness, problem with memory or concentration or irritability'
It doesn’t actually say that in these circumstances B12 injections should be given (intensive regime) - and unfortunately not many GP's know that! And we all know it’s not about B12 levels (even after injections - or especially after injections - level will be high because a large amino of B12 has been injected). It’s about symptoms - having frequent enough injections (or orals) to keep symptoms at bay. If symptoms return , more B12 is needed - irrespective of B12 levels, frequency of injections (or orals - which might not be working). (Dawn - your B12 levels show significant b12 deficiency - you need loading doses - at the very least.)
Show your GP the B12 treatment alert in the following link Dawn (shows need urgent treatment with injections for neuro symptoms - not orals)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
And here are the BNF treatment guidelines (third or fourth paragraph down) for intensive treatment when neuro symptoms present:
Here are the full treatment guidelines (GP's should be resorting back to these now acute pandemic stage is (so called) over - no idea if they’ve been advised to do that by the BSH (I doubt not):
GP’s now supposed to getting back to ‘normal’ - mine isn’t!
If neuro symptoms B12 loading doses then every other day - even during Covid!
Most GP’s have misunderstood or misinterpreted the Covid B12 treatment guidelines. Some CCG’s just ‘did their own thing’ 🤷♀️🤦♀️. Dawn's GP is wrong about orals and levels. No idea when GP's will be moving away from the treatment guidelines issued during covid (I think this may be what Dawn's GP is working from right now ) - surely time to revert back to the 'proper' full guidelines as per pre Covid (which is why I've included them here - show to and discuss with your GP.
Sorry - can’t stay Lupus flare…apologies not responding to tag Dawn / Cherylclaire…apologies to anyone else waiting for response from me elsewhere . Back ASAP. Sorry if this response is a bit 'garbelled'.
P.p.s Just seen results in previous post Dawn - that is a significanty (potential severe) B12 deficiency. At 120ng/L in reference range 150 - 1000, your result is 30ng/L below the bottom of the reference range = significant B12 deficiency. Orals not good enough - need to get these levels up quickly, especially if you have neuro symptoms (see above and links to B12 treatment alert) - press for injections (loading x 6 at least and then every other day if you have neuro symptoms - until symptoms stop improving - can take a long time if deficiency has been present for a while). Sorry can’t stay right now - Cheryl and others will help you x
Sorry you are not well Foggyme - and thanks for the links.
My brother was diagnosed a couple of months ago, was given b12 injections. Looks like the government has caused confusion (not for the first time!). If his surgery is giving injections why dawn2112black is not is a mystery,And reading her post is in far greater need than my brother was!
Dawn2212black - as helvella says I would recommend you ask for sight of the standards that are being referred to, particularly as the serum B12 test is only accurate to 20% and the difference between 120 and 115 is less than 20% - if the test was run on the same sample there is good chance it would come out as less than 115 so if the standards your GP is looking at really are as stated then they are standards that are likely to harm patients.
This document provides a detailed guide to the various tests and their strengths and weaknessesonlinelibrary.wiley.com/doi...
I am not aware of any standards that mention a level for treating with oral rather than injections - NICE recommends treatment with loading injections whether or not the deficiency is dietary or not, it is only the maintenance regime that is different.
It seems certain ones are worse than others for 'making up their own rules'.
My GP in Gloucestershire, had actually told me delightedly one day (well well before covid) that she had been reading that "soon the recommendation was going to be for oral instead of injections, so that's good!" I raised an eyebrow & muttered about not absorbing it but didn't ask any further at that time.
Gloucestershire seemed to be one of the worst last year for stopping anyone's injections that they possibly could - (I think anyone without a confirmed IF positive diagnosis of PA - ie. a very large proportion). They wrote a letter full of dubious information with a photo of Holland & Barratt B12 tablets suggesting I go and get them.....
Hi all and thanks once again for the replies. I live in North Tyneside in Newcastle upon Tyne. Theres just so much conflicting info with regards to "normal b12 levels". I'll have a read of the nice guidelines. Thanks again you lovely lot xx
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