Medical Professionals FAQ
Are the current markers used to investigate Pernicious Anaemia reliable ?
Are there any problems with the current test to determine B12 status in patients with suspected deficiency ?
How effective is the current test to diagnose Pernicious Anaemia – the Anti-Intrinsic Factor Antibody ?
If positive, the test has a high positive predictive value (>95%) for the presence of pernicious anaemia, with a concurrent low false positive rate (1–2%) i.e. a high specificity.
However, IFAB is positive in 40–60% of cases, i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).
Once a patient receives replacement therapy injections to correct any cobalamin deficiency patients make a complete recovery don’t they ?
Nobody is able to explain this or the fact that some patients will have extremely low serum B12 status and yet experience none of the symptoms associated with B12 deficiency. More importantly some patients will need more frequent replacement therapy injections than others – though nobody is able to explain why this is so.
Testing B12 during treatment
What evidence is there that there are serious problems with the way in which B12 deficiency is being diagnosed ?
See the paper in the library – Problems with Diagnosing and Treating Vitamin B12 Deficiency and Pernicious Anaemia – the paper is fully referenced.
What is the problem with the current treatment regime used to treat Pernicious Anaemia ?
Some members manage perfectly well on an injection every three months, but a great many more need more frequent injections. If their doctor refuses then patients will source alternative treatment including purchasing injections from internet pharmacies. 10% of our members use Methylcobalamin which isn’t licensed in the UK or North America.
What is the society doing about this ?
We are also working with clinical researchers to explain how these problems can be solved.
What is wrong with the current test to determine whether the patient’s deficiency is due to Pernicious Anaemia ?
Why does the society believe there are problems with the way in which B12 deficiency is diagnosed ?
Around 14% of our members waited over ten years for a diagnosis. Around 20% waited over two years – and that’s a long time when you are ill.