Personal Story

Kerry

John
My Pernicious Anaemia diagnosis in 2018 at age 63 was the start of a confusing, exhausting, frustrating and revealing journey that eventually led to understanding and healing.

For the previous ten years plus, multiple symptoms had been gradually taking over my life. Breathlessness, brain fog, cognitive decline and migraines made it difficult to assess situations or make decisions. I was very sensitive and felt my life-force and energy were slowly draining away, so, overtime I diminished my contact with people. I felt numb and flat.

It had become difficult to work and survive. I walked like a frail old person, was eternally exhausted, my hair was turning grey and falling out, my ears were constantly ringing, my mouth was ulcerated, my hands and feet were tingling, and my vision was blurring. I was depressed and anxious, had become combative and paranoid, and had my first-ever (and so far only) panic attack. Because I worked in Mental Health, I had insight into what was happening to me but had no idea why. I was often overwhelmed and would just burst into tears. All these symptoms manifest very slowly, so it’s common for people to adapt to them until they become too much.
I was a Client/Carer Liaison Officer in Community Mental Health and in Dementia Care because I had the ability to listen, include everyone, and put people at ease. But I had become more likely to argue with you than to offer a kind word, which horrified me. Mostly I just felt disconnected from myself and those around me. I had already left a job I loved in Community Mental Health when I realised my own deteriorating mental health was impeding my ability to work.

I visited a doctor for a check-up to find out what was happening. The doctor shared that my blood tests revealed there was nothing wrong with me. I had some savings, so I rested, thinking I was just burnt out. After a few months, I returned to work for a nurse’s agency as an AIN (assistant in nursing). During a long shift on a hot day, my memory failed on numerous occasions. I was confused and couldn’t remember the layout of the area or the necessary codes. I couldn’t breathe and constantly tripped over my feet. I was relieved to finish that shift, but I knew I had to do something, so I phoned the doctor.

Finally, a diagnosis! I was grateful that the doctor ordered the right tests to quickly diagnose me and start treatment. I received little information, but she did tell me I was deficient in vitamin B12 and would need a B12 injection every week for six weeks. I also found out that the blood test I had at the same practice with a different doctor three years earlier showed I was deficient in vitamin B12. For whatever reason, that doctor decided not to inform or treat me.

The initial B12 injections felt like the elixir of life, but then I would crash and symptoms would return with a vengeance. Injections stopped while I had further tests. I was diagnosed, based on my very low active B12 blood test result and a positive result for intrinsic factor antibodies, with the autoimmune disease Pernicious Anaemia (PA). I didn’t know what that was, but instantly burst into tears with relief. I felt validated. I was told I would have to have a B12 injection once a month for the rest of my life and that close family members should be tested.

I researched and found that a helpful source of information was a closed, UK-based B12 Deficiency Facebook support group. I realised I was being under-treated, which explained why I was not improving. The recommended patient advocacy treatment for B12 deficiency, based on research and NHS guidelines in the UK, regardless of why you are deficient, is to receive B12 injections every other day until symptoms (especially neurological) go away; otherwise, over time, symptoms will become irreversible. Unfortunately, my doctor showed no interest in my range of 30 symptoms, which it turns out are the most important indicators for treatment.

Fast forward to 2021, after three years of trial, error, research and continuing to decline, I found a wonderful new doctor who supports me to self-inject B12 as often as I need to stay ahead of my symptoms. He was interested in my symptoms and, fortunately, in Australia we can buy B12 ampoules over the counter. I have improved immensely, but was diagnosed in 2024 with peripheral neuropathy. It’s progressing slowly, but my cognition continues to improve and most other symptoms have gone as long as I continue my treatment, including all the other vitamins I require to support me. Symptoms, mostly exhaustion and brain fog, quickly return in stressful situations and with too much physical exertion, so I closely monitor myself. I feel lucky to have been initially diagnosed and eventually supported with the correct treatment.

It seems my mother wasn’t so fortunate. I discovered PA can happen in family clusters and immediately thought of my mother, who was diagnosed with vascular dementia. She had demonstrated many B12 deficiency symptoms over her final years. I booked a telephone appointment with the GP she had had for several years before her death at 83. I told him of my diagnosis and asked about my mother’s B12 levels. He replied that she was ‘quite’ low. I enquired about B12 injections; he replied that she had a couple of shots. He must have felt my shock through the phone. With kindness, he said, ‘You can rest assured because she didn’t have anaemia.’

‘Neither did I,’ I replied.

I cried to think mum’s final years could have been happier than sad. There is no official diagnosis, but I have learned that her younger sister was diagnosed and treated several decades earlier, but treatment stopped when her GP moved and subsequently she only received the occasional B12 injection. She is currently living with dementia.

Five months ago, my eldest daughter, who lives and works in Hong Kong, was diagnosed, at 39, with PA by a progressive GP who looked closely at symptoms and included an active B12 test in her blood tests. She had exhaustion and many cognitive symptoms, but after two months off work and receiving the treatment she needs with the support of her doctor, she is back at work and doing well. The PA is possibly from my maternal grandmother. In my family cluster, it seems each generation is being diagnosed earlier and treated correctly, which I take as a big win! There also appears to be a dominance of mental health symptoms and cognitive decline.

I am writing a book just for the family, so there will always be a reminder to be aware. My family are also aware of the wealth of B12 deficiency information available on the UK-based Pernicious Anaemia Society website. I am eternally grateful to the PAS for their consistent and effective research and advocacy work for people suffering with debilitating symptoms who just want to be correctly diagnosed and treated.

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