Do you have a diagnosis of CFS or ME?
It is widely documented that chronic fatigue is a symptom of B12 deficiency, it is also known that B12 deficiency can be misdiagnosed as CFS and ME. It is also known that macrocytosis does not need to be present to be severely B12 deficient and yet this is what is stated in NICE Do Not Do Guidelines. ‘Tests for vitamin B12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.’
Treatment of CFS and ME
If doctors strictly adhere to this guideline it could be causing many serious cases of B12 deficiency to go undetected.
Many doctors see NICE Guidelines as LAW, when they should be regarded as is a recommended practice that allows some discretion or leeway in its interpretation, implementation, or use.
In contrast the following NICE Guideline appears to be rarely adhered to . . .
It states – ‘Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.’ Many of us have to fight to get the loading doses never mind the injection every other day which is so desperately needed.
This guideline further states – ‘Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12’. Sadly some with the condition are fobbed off with these useless tablets depite the fact that they are not deficient due to diet.
In an ideal world
What we need our doctors to understand is that, ‘not every patient or situation fits neatly into a guideline. A guideline may not cover every eventuality and each patient’s circumstance needs to be taken into consideration when a treatment or test is decided upon.’
It would be ideal if all doctors diagnose with the clinical picture in mind, and effectively use listening skills. We need them to be up to speed on all the symptoms of B12 deficiency and help those in desperate need of a correct diagnosis and the inexpensive treatment required. The new BNF guidelines now record the cost of Hydroxocobalamin as 55 pence.
Best wishes, Tracey
If you are struggling to achieve a diagnosis or treatment and need a hand please: