Personal Story
Anne
My name is Anne Truman, and I am 71 years old. I have been married for 50 years, with 2 adult children and 5 grandchildren. Before having children, I was an Infant Teacher and later a Supply Teacher and School Governor.
In 1989, aged 35, following a long-term bout of trigeminal neuralgia, I was diagnosed with anxiety and depression and after several episodes I have remained on varying doses of anti-depressants. As a child, I experienced breathlessness on exertion, which continued into adulthood, especially when walking uphill (asthma was ruled out). I was also treated for anaemia in my 40’s. My pregnancies were normal, apart from acute indigestion.
In my early 60s, I noticed tremors in my legs, difficulty standing, and shakiness in queues. Initially, I attributed this to long-term antidepressant use, but I also experienced upper back pain after long walks, tinnitus, and “internal tremors” when lying down. I have always had indigestion and occasional bouts of diarrhoea and stomach discomfort after eating certain foods.
In June 2021, following mild Covid twice, I presented to the GP with acute fatigue. Blood tests revealed a B12 level of 79 (I had never had my B12 tested) and high Intrinsic Factor antibodies (114), leading to a diagnosis of Pernicious Anaemia (PA). A gastroscopy confirmed the PA diagnosis and also auto-immune gastritis. My GP prescribed a loading dose of B12 injections over 3 weeks, followed by hydroxocobalamin injections every 12 weeks for life, along with iron tablets. Initially, I reacted well to the treatment, but I should have investigated PA more thoroughly.
In February 2022, the GP stopped the iron tablets, but my fatigue, tinnitus, back pain, and tremor worsened. I began researching B12 deficiency due to the lack of improvement in my symptoms. By May 2024, after about 10 years free of acute anxiety symptoms, another anxiety episode occurred. Following a GP consultation, my anti-depressants were increased, and by September, the frequency of my B12 injections was changed to 10 then 8-weekly. I discussed the possibility of a link between my symptoms and PA with my GP, who reluctantly agreed to refer me to a Specialist but was unsure whether to refer me to a gastroenterologist or a haematologist. I discovered a UK based expert in iron and B12, and watched several videos and listened to several podcasts made by him. I subsequently made a private appointment with him. I sent my full medical history and blood test results ahead of my consultation along with a covering letter from my GP.
My appointment with this doctor was revelatory. It became clear that most, if not all, of my symptoms over the years were linked to my PA diagnosis, which was hereditary. During the initial consultation, the doctor taught me to self-inject with B12, which I now do twice weekly, plus weekly Gentle Iron, folic acid, and daily vitamin D. I kept my GP informed of my treatment plan, and the GP performs any blood tests suggested by the specialist.
Currently, I am managing the B12 injections and co-factors well. After 9 months of treatment and further virtual consultations with the specialist, my blood test results are good. My symptoms have not fully disappeared, and I understand that some neurological damage may be permanent and that it can take years to improve.
I am dismayed that GPs generally seem poorly informed about B12 deficiency, rarely linking various symptoms to the condition. I now realize that my father’s symptoms throughout his life were probably due to undiagnosed PA. I inherited psoriasis from him and his father before him, which may also be linked to PA. My specialist suggested my children be tested for PA, revealing that my daughter has anaemia and my son, who has had IBS for years, also has low B12 and is undergoing further tests for parietal antibodies.
I have joined the PA Society and listened to several helpful webinars. I am also a member of two vitamin B12 Facebook groups. My advice to PA sufferers or those with low B12 and accompanying symptoms is to research online and read the several books on the subject. Do not be fobbed off by your GP; go to consultations with symptom logs, knowledge of the NICE guidelines, and evidence of your wider reading.
I believe it would be hugely advantageous to patients’ health and the NHS’s budget if everyone’s B12 levels were routinely tested. Many doctors treat patients with a myriad of symptoms that could be explained by low B12, rather than prescribing unnecessary drugs and investigations. More needs to be done to help people link their symptoms, whether hereditary, acquired through gastric surgery, or diet mismanagement. The PA Society is a valuable tool for us all.