Medical Professionals FAQ

Are the current markers used to investigate Pernicious Anaemia reliable ?
No – In a study of 70 consecutive patients with pernicious anaemia only 45 (64%) had very low cobalamin levels (i.e. under 100pg/ml). Anaemia was absent in 13 (19%) and macrocytosis was absent in 23 (33%)
Are there any problems with the current test to determine B12 status in patients with suspected deficiency ?
The competitive-binding luminescence assay (CBLA) has replaced microbiologic and radioisotope-dilution assays in the past decade. A recent report showed that the current test produces false normal results in 26%, 22% and 35% of the serum samples tested
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 ?
No – some patients continue to experience all or some of the symptoms of B12 deficiency even after replacement therapy treatment have been given.

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
Control of the vitamin B12 status during treatment is considered to be of little use. During vitamin B12 injections, transcobalamin en haptocorrin are fully saturated with vitamin B12. Therefore, serum and Active B12 values cannot be used to ascertain the effect of treatment. The patient’s symptoms should be the guideline for basing treatment. After the loading dose, a maintenance dose can be determined based on the symptoms.
What evidence is there that there are serious problems with the way in which B12 deficiency is being diagnosed ?
Two recent papers show that the current test used to determine B12 status in patients is flawed.

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 ?
It has become obvious to the society that the current one size fits all treatment of an injection of 1mg/ml Hydroxocobalamin does not suit all of our members.

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 have raised these problems with the Department of Health in the UK and have conducted a survey of members which has now been analysed and summarised by medical professionals.

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 ?
Well, the Schilling test is no longer available and the current anti-intrinsic factor antibody test is also seriously flawed and missing over a quarter of people who have Pernicious Anaemia.
Why does the society believe there are problems with the way in which B12 deficiency is diagnosed ?
Because our members suffer for many years before being accurately 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.

For more information see our Healthcare Professional’s information page.

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