I had been prescribed folic acid for some years which probably masked my B12 deficiency picked up some years later in a blood test.
Like many others I were given the routine loading dose and prescribed the one-size-fits all 3 monthly injections. My GP didn't ask or document my symptoms despite my suffering with blurred vision, dizziness, poor coordination & balance, numbness, pins & needles, incontinence, etc. The 3 monthly injections prescribed were not enough to keep me symptom free & if honest I were becoming not only depressed but very frightened.
My GP didn't have a clue about the condition, I emailed them guidance from various sites including Pernicious Anaemia Society (PAS). I have various autoimmune conditions of which they also didn't fully understand but I managed with a battle to get my injections changed to 2 monthly. My Dr at the time decided our relationship had broken down & passed me on to another GP who I felt didn't have a clue or follow guidelines on how to treat a B12 deficiency.
Still my symptoms persisted. I have been a member on the Health Unlocked site for a number of years due to various rare conditions. I stumbled across the PAS site for B12 Deficiency and Pernicious Anaemia & read others' stories which were all very similar to my own. I were surprised to see how many people were suffering due to ignorance of the condition among the medical profession. Many had been like myself, bedridden or in wheelchairs unable to walk. Some were so desperate they self injected to try and get some sort of stability back into their life. Many made a full recovery, many reported improvement in symptoms, others had suffered nerve damage & neuropathy still had symptoms but were able to get through their day.
I cannot understand why this life threatening condition is not taken more seriously amongst the medical profession. In other countries you can buy B12 injections to administer yourself, in the UK we have to buy from abroad. I feel the one-size-suits all approach of 3 monthly injections is ridiculous, we are all individuals & should be treated accordingly. Drs need training on how to treat the condition, listen to the patient & document patients' symptoms. They need to respect many of the blood tests carried out are inconclusive & realise patients can still have a deficiency despite what they feel to be a negative result.
We wait months because our Gps refer us to neurologists many of whom have little understanding of the condition and label us as depressed or with functional neurological disorders. But in fact what is needed is to get to the root cause of the deficiency which often occurs in the gut ( unless diet related ) which is picked up by a gastrologist. It has taken me over three years to be seen by a gastrologist to find the reason for my B12 anaemia.
"Lack of care with regard to B12 deficiency"
About: GPs in Swindon GPs in Swindon The Great Western Hospital / Neurology The Great Western Hospital Neurology SN3 6BB
Posted by jillymo (as ),
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Update posted by jillymo (the patient) 2 months ago