Personal Story
Susan
In 2002, I moved to Gloucestershire. It had been a stressful decade with my husband ill, surgery for me, care of relatives and job changes.
I developed stomach pain, digestive problems and tiredness. The GP thought it was stress related acid reflux. I was given long term Omeprazole. (A PPI or proton pump inhibitor)
I began to feel like a hypochondriac when I suffered heart palpitations, breathlessness, muscle cramps and restless legs. After spirometry tests my GP said my lung capacity was poor, and I was prescribed an inhaler. I’d lost my sense of smell!
I had a treadmill test and ECG which showed extra heart beats and a blood test highlighted very high cholesterol. Time went by with repeated GP visits. By 2010, I was suffering tingling extremities and my sleep was disturbed. I became forgetful and at times paranoid. I overreacted to things. My hair started to fall out and my nails stopped growing. I developed autoimmune lichen sclerosis plus lichen planus in my mouth, spotted by my dentist and confirmed by tongue biopsy. The stomach discomfort and poor gut motility continued. Another endoscopy showed nothing definitive.
Then, my face began to feel numb and I lost sensitivity in my hands. I kept dropping things and bumping into things as my balance became poor. My joints ached with osteoarthritis and the fatigue was extreme.
I was told constantly that I was trying to do too much and caring for too many people (sick husband, elderly mothers, family etc.) I gave up being a school governor as I couldn’t remember all the important curriculum changes. I was so exhausted I stopped being a parish councillor.
I’d been on Omeprazole for years. Fortunately, I saw a newspaper article that said it could reduce B12 levels. I wondered what B12 was and came across Dr Chandy and his symptom checker. I had so many symptoms of deficiency that I asked for a B12 test. The doctor humoured me saying that as I was not a vegetarian it was unlikely to be an issue, but it would be tested. My serum B12 level was very low, 75ug/l, and further tests showed I was positive for both intrinsic factor and parietal cell antibodies.
Eureka – a diagnosis of Pernicious Anaemia
I thought my troubles were over. I had an initial loading dose and was put on three-monthly B12 injections. I still felt so ill. I should have had a more prolonged every-other-day treatment at diagnosis given the neurological symptoms. I was not referred to any specialist at all. A further endoscopy showed atrophic gastritis. The battle for more frequent injections then began! I kept going back as I was not coping and the GP agreed to eight-weekly B12.
I became iron deficient & breathless. The high dose oral iron tablets upset my digestion. I’d developed severe gut motility issues. The dietary issues, malabsorption, and gut discomfort became part of my life. The loss of sensitivity in fingers and toes remained. When the efficacy from the B12 injections waned, the brain fog, tingling, and fatigue returned. Looking back over my life, I think I’d always had some B12 issues.
My mother had lost a child in the womb at six months, in the pregnancy before I was conceived. I had been a sickly child, slow to develop, with erratic menstruation and inability to conceive easily.
The eight-weekly injections were not enough and I was adding in sublingual tablets and sprays to little effect.
I asked my GP to write to a neurologist for treatment advice. A reply was received saying there was no harm in more frequent injections and anecdotally he had many patients who did better on monthly injections. So, 4 weekly injections were allowed at my own risk, but there could be no further increase in frequency after that.
I became a member of the Pernicious Anaemia Society and of the B12D.org group. I studied and learnt the science as much as I could. I started to advocate for myself and others and started a support group in Gloucestershire.
After lockdown, I caught Covid twice and was very unwell. I felt as bad as at pre-diagnosis. My need for B12 increased but I knew I was already outside the local protocol. I could NOT ask for a more frequent supply of self-inject ampoules and I did not want to lose the one-a-month NHS ampoule I was allowed. Any review brought fear of loss of entitlement to my NHS injections. I was already buying my own needles, syringes, wipes and sharps boxes. I had to seek additional private injections from a private GP after Covid. Twice-weekly injections were prescribed, and I have required this frequency since then to remain well. I have been forced to source additional B12 myself because injections from a private GP are prohibitively expensive.
I manage my condition as best I can, but constantly worry about supply issues and the fact that I cannot achieve adequate treatment within the NHS system. I fear the loss of my one monthly ampoule; while knowing it would barely keep me functioning if that was all I had to rely on.
I’m 72 yrs old but still caring for others including grandchildren. I could not function without my frequent injections. I need to buy additional vitamins, minerals and digestive supplements to combat the malabsorption caused by the gastritis and loss of stomach acid. The nerve damage and poor gut motility from autonomic nerve damage, I suspect, is permanent.
It’s not an easy condition to diagnose as it mimics other possible health issues. It is an invisible & incurable, lifelong debilitating condition affecting quality of life. However, IF patients receive sufficient treatment, it is manageable.
If the NHS cannot offer frequent enough treatment, then I personally believe patients should be allowed to buy additional ampoules, without prescription over the counter, as in other countries. This is a non-toxic vitamin essential for life. The MHRA, BNF or Parliament CAN & SHOULD change legislation and make an exception to recategorize injectable B12 as an off-prescription item, as it is safe and low cost.