I was diagnosed under active thyroid since 2011. I’m well treated and all levels are good. However after discovering I was in the very lowest (but within) range of B12 (243 with a range of 210 to 910) it took me 2 years to persuade the GP that I was not absorbing B12 in any way orally. He finally agreed to give me the 13 weekly injections which made a huge difference to my life and energy levels. However I’ve been told that as my levels are about 900 now they want to stop the injections. I have said that I will just get low in B12 again and we’ll Be back to square 1. I don't have PA but just don't absorb B12 even with taking it orally as an individual vitamin.
Please can anyone suggest how I can stop this happening - what can I say to make sure today’s injection was not my last?
Written by
Flowers2
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Having a negative on IFA is a long way from proving that you don't have PA - the test isn't very sensitive and gives false negatives 40-60% of the time, so most likely that you have what the BCSH guidelines refer to as 'IFAB negative PA'.
The guidelines can be found here, but your GP can access them directly through the BNF
I suspect the version they would be seeing may be a little more up-to-date and include 2-3 months as the frequency for maintenance shots for patients with no neurological involvement.
It doesn't really matter what the absorption problem is though - as you say - not having the injections will just result in your becoming deficient again ... and as many people need much higher serum B12 levels after loading shots - mine are permanently off the top of the measurable range if I'm going to feel okay - so 900 really means nothing.
Unfortunately the BCSH guidelines - whilst stating that monitoring after the start of treatment isn't necessary they aren't as clear as they could be about the problems using serum B12. Its a potentially good test for diagnosing an absorption problem (through falling levels) it is only a measure of what is happening in your blood and doesn't provide a guide as to what is happening in your cells.
In terms of resolving the problem you could try pointing your GP at the area of the PAS website that is aimed particularly at helping medical professionals improve the diagnosis and treatment of PA/B12 deficiency
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