Dr Hunt and her colleagues are to be congratulated on their appraisal of the current shortcomings on the diagnostic tests associated with Pernicious Anaemia and Vitamin B12 Deficiency.
I would like to point out the following in relation to the diagnostic procedures:
1. There is no reliable test for diagnosing Autoimmune Atrophic Gastritis. The British Society for Standards in Haematology state that anti-parietal cell antibodies test cannot be used to give a diagnosis and that if the patient tests Negative for Intrinsic Factor Antibodies then he or she can still be diagnosed with Pernicious Anaemia - ABNegPA.
This means that a great many patients are either wrongly diagnosed or given no explanation for their low B12 status. A recent survey of UK members of the PA Society show that common misdiagnosis include Anxiety, Depression, CFS/ME, IBS, MS, Menopause and Hypochondria. 14% of members of the charity waited over ten years for a correct diagnosis, 21% waited up to two years for a diagnosis and 19% up to five years.
2. Receiving adequate treatment is a major source of frustration for members. When asked if they were satisfied with their treatment 64% replied 'no', 28% replied 'yes' and 8% didn't reply. Many of the 28% who were satisfied with their treatment were self treating using cobalamin from various sources. 5% of members use Methylcobalamin which is not licensed in the UK. There are several doctors who are members of the society who self-inject much more frequently than every three months.
3. While some patients see their symptoms of B12 Deficiency disappear once treatment has begun a great many remain symptomatic to various degrees with those experiencing the worst effects of the condition facing career ending decisions, relationship breakdowns and an end to any meaningful social life.
The Pernicious Anaemia Society was established to provide newly diagnosed patients, and their families, a plain English explanation of their condition. It has unwittingly uncovered serious issues with the way in which the condition is both diagnosed and treated. Hopefully this paper will go some way to raising awareness of current shortcomings in these two areas.
See:
Hooper, Hudson, Porter, McCaddon; Patients Journeys; Diagnosis and Treatment of Pernicious Anaemia: British Journal of Nursing, 2014, Vol 23, No 7
Competing interests:
Chairman and founder of The Pernicious Anaemia Society
Rapid Response:
Re: Vitamin B12 deficiency
Dr Hunt and her colleagues are to be congratulated on their appraisal of the current shortcomings on the diagnostic tests associated with Pernicious Anaemia and Vitamin B12 Deficiency.
I would like to point out the following in relation to the diagnostic procedures:
1. There is no reliable test for diagnosing Autoimmune Atrophic Gastritis. The British Society for Standards in Haematology state that anti-parietal cell antibodies test cannot be used to give a diagnosis and that if the patient tests Negative for Intrinsic Factor Antibodies then he or she can still be diagnosed with Pernicious Anaemia - ABNegPA.
This means that a great many patients are either wrongly diagnosed or given no explanation for their low B12 status. A recent survey of UK members of the PA Society show that common misdiagnosis include Anxiety, Depression, CFS/ME, IBS, MS, Menopause and Hypochondria. 14% of members of the charity waited over ten years for a correct diagnosis, 21% waited up to two years for a diagnosis and 19% up to five years.
2. Receiving adequate treatment is a major source of frustration for members. When asked if they were satisfied with their treatment 64% replied 'no', 28% replied 'yes' and 8% didn't reply. Many of the 28% who were satisfied with their treatment were self treating using cobalamin from various sources. 5% of members use Methylcobalamin which is not licensed in the UK. There are several doctors who are members of the society who self-inject much more frequently than every three months.
3. While some patients see their symptoms of B12 Deficiency disappear once treatment has begun a great many remain symptomatic to various degrees with those experiencing the worst effects of the condition facing career ending decisions, relationship breakdowns and an end to any meaningful social life.
The Pernicious Anaemia Society was established to provide newly diagnosed patients, and their families, a plain English explanation of their condition. It has unwittingly uncovered serious issues with the way in which the condition is both diagnosed and treated. Hopefully this paper will go some way to raising awareness of current shortcomings in these two areas.
See:
Hooper, Hudson, Porter, McCaddon; Patients Journeys; Diagnosis and Treatment of Pernicious Anaemia: British Journal of Nursing, 2014, Vol 23, No 7
Competing interests: Chairman and founder of The Pernicious Anaemia Society