Hi there. I've had B12 injections every 3 months since last year due to my PA. I’ve learned from this great forum that I may need more B12 injections. However due to my recent blood test, Drs believe that injection per 3 months is enough for me!
Serum vitamin B12 1115.0 pg/ml 190.0-900.0
Serum folate 10.90 ng/ml 4.60 – 18.70
Eosinophil count 0.8 0.0 – 0.4
Any comments highly appreciated.
If you have neuro symptoms you need to convince your gp to administer more frequently
Unfortunately the problem is your doctors awareness of how B12 works and the fact that B12 serum test is not an accurate guide to what is happening
a) serum test looks at all forms of B12 in your body - which received about 3+ years worth of hydroxocobalamin every 3 months .... and eventually loses the majority of this in your urine. The body has to methylate this form of cobalamin into the types that it uses at the cell level.
b) the test tells you nothing about what is actually going on at the cell level, which is where you need B12 - not in your blood serum.
One thing that can go wrong is that your body responds to high levels of B12 in your blood by creating antibodies to TCII - the mechanism by which B12 is transported to the cell level. One study in denmark implied this could affect 30% of the population. This results in a condition called 'functional B12 deficiency' - lots of B12 in the blood but none that's useable at the cell level.
There isn't really much literature on how to treat where this autoimmune response is a factor but there has been some work in the neurology department at University of Oxford which suggests that repeated high doses of B12 may help
ndcn.ox.ac.uk/publications/...
this article talks about functional deficiency and explains it a bit
qjmed.oxfordjournals.org/co...
You might be able to get your GPs to take note of the possibility of functional B12 deficiency. You could also try using the NICE guidelines which talk about not using test results after supplementation unless there is a suspicion of non-compliance with supplementation - which rather implies that tests aren't good guide from that point unless low - but that isn't clearly explained in the guidelines.
Another option would be to argue for 2 months using neurological symptoms as the justification
Yet another option is to look at self supplementation. An absorption problem in the stomach doesn't necessarily mean that you can't absorb B12 by other means (eg nose, tongue, skin) ... and even flooding the gut with B12 can work for some people as 1% of B12 is absorbed outside the ileum.
It is also possible to source B12 from outside the UK ... or use dried formats and get hold of injectible saline to make your own injectable solutions - but getting hold of saline can be a problem.
As Lisahelen mentioned, the treatment for B12 deficiency with neuro symptoms is more intensive than the treatment you are getting.
Has your GP checked their copy of the BNF (british national formulary). Every GP will have access to this. The info on treatment of B12 defic is in Chapter 9 section 1.2
I think this info is also in "BCSH Cobalamin and Folate Guidelines". The BCSH Cobalamin Guidelines also indicate that once someone is supplementing then the actual B12 levels are irrelevant. I read the whole BCSH document. I found page 29 , a diagnosis flowchart useful.
I think that those with neuro symptoms are supposed to get an injection every two days until their symptoms stop improving then injections every two months. Do you have neuro symptoms?
In the past I have given GPs lists of my neuro symptoms.
b12deficiency.info/signs-an...
pernicious-anaemia-society.... There is a symptoms checklist including neuro symptoms.
"Drs believe that injection per 3 months is enough for me!"
I have found it helpful to ring the PAS (Pernicious Anaemia Society). 01656 769717
The website below has a useful section on writing to GPs.
seeing neurologist, advice on b12 injections welcomed…
Has anyone had insomnia from B12 injections?
