Image 2024 08 19 T14 54 20

B12 deficiency & Pernicous Anaemia

blog author

3 months ago

by Victoria Marsden

B12 deficiency & Pernicous Anaemia

B12 Deficiency & Pernicious Anaemia - A Journey of Misdiagnosis & Self-Advocacy

My journey with pernicious anaemia likely began long before I was aware of the condition. I suspect I had been deficient in vitamin B12 for at least six years before I received a diagnosis—though even then, the confirmation was anything but straightforward. The lack of awareness and training within the healthcare system regarding B12 deficiency, particularly pernicious anaemia, contributed to this delay.

Over six years, my health steadily declined. I suffered from excruciating migraines, severe stomach issues, and overwhelming fatigue that went far beyond simple exhaustion. I found myself falling asleep uncontrollably and struggled to function in daily life. Despite numerous visits to my GP, countless blood tests, and a referral to a specialist in Leeds, my condition remained undiagnosed. The specialist attributed my symptoms to IBS and prescribed diarrhoea tablets, despite my complaints of difficulty in bowel movements. At no point did anyone test my B12 levels, simply because it is not included in a standard full blood count—it must be requested separately.

When I moved to Cumbria, my health continued to worsen. I began experiencing speech difficulties, panic attacks, and brain fog. After enduring a week-long migraine that left me unable to speak for nearly six weeks, I returned to my GP. I was told I was depressed and prescribed various medications for migraines. The worst moment came when a GP suggested I might have multiple sclerosis (MS), and I was sent for a brain scan. Thankfully, the scan did not show any signs of MS.

During this time, I was diagnosed with H. pylori, a common bacterium that damages the gut lining. After a course of strong antibiotics, the infection was eradicated, but there was no follow-up. Later, I learned that H. pylori, or the antibiotics used to treat it, might have triggered an autoimmune response, leading to the destruction of my stomach lining.

Frustrated with the lack of progress, I began researching my symptoms extensively. I discovered numerous articles linking H. pylori to pernicious anaemia, specifically through autoimmune atrophic gastritis, which is known to destroy the stomach's intrinsic factor needed to absorb B12. Armed with this knowledge, I insisted on a referral to a gastroenterologist for an endoscopy, where I was finally diagnosed with atrophic gastritis. Despite knowing that this condition meant I would need lifelong B12 injections, the gastroenterologist did not recognize B12 deficiency and failed to initiate treatment.

After my diagnosis, I sought support from B12 deficiency charities and contacted Martyn Hooper, Chairman of the Pernicious Anaemia Society, for advice. He informed me of the correct protocol for treating B12 deficiency and warned that many GPs do not follow the guidelines, which state that loading doses should continue until symptoms subside. I also learned about Dr. Joseph Chandy, a GP from County Durham who was struck off the GMC for treating patients with B12 injections. His work intrigued me, and I eventually met him. Dr. Chandy shared case studies of patients misdiagnosed with conditions like ME, MS, Chronic Fatigue Syndrome and Fybromyalgia who were later successfully treated with B12 injections.

As my condition continued to deteriorate, I could no longer work. The final straw came when I broke down during a GP visit, desperate for help. My GP finally administered a B12 injection and initiated loading doses over several weeks. However, as Martyn Hooper had warned, the loading doses were stopped too soon, and I was placed on a maintenance dose of one injection every three months—a protocol that is grossly inadequate for many with pernicious anaemia.

Support Groups

Determined to regain control over my health, I continued researching my condition, reading haematological papers, joining support groups on Facebook, and staying in contact with Dr. Chandy who sadly passed away this year. Through these efforts, I learned that many patients with pernicious anaemia need daily B12 injections until symptoms improve, a regimen my GP would not support. In the UK, unlike in many European countries, B12 is not available over the counter, making it difficult for patients like me to access the necessary treatment.

B12 Should be available to buy!

Eventually, I decided to take matters into my own hands. I began self-administering B12 injections sourced from a reputable pharmacy in Germany. The first injection was daunting, but over time I became accustomed to the routine. After six months of daily injections, my symptoms began to improve, and I gradually reduced the frequency to every other day. Today, six years later, I am down to one injection per month and feel 95% better. My symptoms—stomach issues, memory loss, speech difficulties, and numbness—have largely resolved! This journey has been harrowing, and I wouldn’t wish it on anyone. When I first joined a support group on Facebook three years ago, there were 1,500 members; today, that number has grown to over 45'000. I have become a registered support member, offering advice to others who are struggling.

I’ve also reached out to political figures like Jeremy Hunt, Theresa May, and Tim Farron to advocate for better access to B12 over the counter, but with little success.

Symptoms of B12 Deficiency

Neurological Symptoms

  • Paresthesia: abnormal sensation, typically tingling or pricking (‘pins and needles’)

  • Numbness in hands and feet, reduced skin sensation

  • Impaired fine finger movements

  • Ataxic gait (unsteady, staggering gait)

  • Balance problems/loss of sense of position

  • Reduced or absent reflexes

  • Clumsiness/lack of coordination

  • Aphasia (problems with speaking, writing, reading)

  • Sensory loss (loss of taste, smell or hearing)

  • Positive Romberg sign (unable to maintain balance with eyes closed)

  • Burning legs and/or feet

  • Lhermitte’s sign (electric sensation that travels down your neck and back)

    Blurred Vision

  • (Neuro) Psychiatric & Psychological Symptoms

  • Memory and concentration problems

  • Dementia, confusion

  • Brain fog/decreased mental concentration

  • Irritability, emotional lability

  • Personality changes, mania, paranoia

  • Depression

  • Psychosis, delirium, paranoia

Anaemia or Anaemia-like Symptoms

  • (Extreme) Fatigue

  • Shortness of breath

  • Dizziness/feeling faint/vertigo

  • Postural hypotension (drop in blood pressure upon standing)

  • Pallor

​Gynecological and Urological Symptoms

  • Infertility

  • Loss of libido/impotence

  • Menstrual problems/pains

  • Incontinence

  • Cystitis, bladder inflammation, bladder infections

  • Pyelonephritis (kidney infection)

Gastrointestinal Symptoms

  • Loss of apetite

  • Glossitis (pain, redness, swelling in mouth and tongue)

  • Diarrhoea

  • Weight loss

  • Nausea, vomiting

  • Stomach problems, heartburn, discomfort

Other Symptoms

  • Fever

  • Sleep disturbance

  • Tinnitus

  • Hair loss/premature grey hair

  • Brittle nails

If you or someone you know is suffering from pernicious anaemia, please remember: oral B12 supplements are ineffective if your stomach cannot convert them. It is vital to seek the appropriate treatment, which often requires self-advocacy and persistence.

For more information and support, please visit the B12 Deficiency Charity and the Pernicious Anaemia Society.

Share this article