Advice please

[Lunadoo]

MY B12 result 183 (range 180-640) all else OK incl intrinsic factor. GP won't treat unless B12 lower than 150, despite my having neurological symptoms, muscle fatigue and lack of appetite. I feel really quite unwell and not sure what to do. I've started B12 sublingual myself at 1000mcg. Father and brother both have pernicious anaemia. Also a peculiar vibrating in left abdomen like a mobile phone! Advice appreciated. Thanks

[waveylines]

I am so sorry to hear this. With your results and family history they should be treating you with B12 injections. In your shoes I would write a polite letter to the practise manager and put this all in writing. Put your test results, signs and symptoms plus family history of PA Ask for b12 jabs alternate days to be started urgently as you clearly do have PA. Point out the guidelines that state they shouldn't delay treatment as it can cause permanent harm and they can start treatment whilst referring you onto a neurologist.

Request your letter is put on your medical file ask for a response within two working weeks.

They won't like it but I doubt they will dare ignore it as it leaves them liable.

Its a shame you have to take such steps but its your health they are damaging by leaving you for longer.

[wedgewood in reply to waveylines]

If your doctor had read the latest guide -lines , he/she would know that you can have P.A. having a normal reading ( yours is on the low side anyhow ) Also a negative Intrinsic Factor does not mean you don’t have P.A. And you also have the genetic link and you have the symptoms! It’s outrageous . The B12 injection is terrible cheap . An ampoule costs me about 60P Then there’s. 5 minutes of a nurses’ time . It’s so plain that you need injections . Do follow waveylines suggestion . Don’t give up . Best wishes .

[Gambit62 Administrator]

as per waveylines - suggest you write to GP with copy to practise manager asking to be treated in accordance with BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which can be found hereonlinelibrary.wiley.com/doi...

I would also suggest pointing out that the results of serum B12 are only accurate to 20% so a reading as low as yours could well be deficient. The accuracy of the tests is discussed in the above article

[clivealive Forum Support]

In addition to the above Lunadoo your doctor should know that P.A, can "run" in families

healthline.com/health/perni....

I wish you well