Personal Story

Andrew, Lincolnshire

My Story

I’m Andrew, 50 years old, from Lincoln. I work as a Project Manager for an industrial gas turbine manufacturer – a demanding, fast-paced role that requires sharp thinking and constant problem-solving. Today, I’m managing my condition and performing well. But getting here required a fight that should never have been necessary.

A Family Legacy

Shortly after my birth, I had pyloric stenosis and underwent surgery at about 6 weeks old. Apart from that, my childhood was relatively unremarkable. But autoimmune disease runs deep in my family, like a genetic inheritance none of us wanted.

My maternal grandfather had Pernicious Anaemia. One of my brothers has Hashimoto’s disease. The other has Hidradenitis suppurativa. A good number of my cousins have PA. We’re a textbook case of autoimmune clustering—the kind doctors should pay attention to when taking a family history.

The First Time: When Medicine Worked

I was first diagnosed about 22 years ago. I was working as a sales manager for a soft drink manufacturer, living in Medway and commuting to Gloucester weekly. When I wasn’t in the office, I was on the road visiting customers across the UK. Life was good, busy, successful.

Then something shifted. I started feeling tired – not normal tired, but a bone-deep exhaustion that sleep couldn’t touch. I became irritable, unable to concentrate. Simple tasks felt impossible. I went to my GP several times. They ran tests. Nothing conclusive came back.

Then my surgery moved to a new medical centre, and I saw a different GP. He did something radical: he actually looked at my medical history. He asked about my family. When I mentioned my grandfather’s Pernicious Anaemia, he immediately prescribed loading injections.

Within days, I was back at peak performance.

It felt like a miracle. My serum B12 level was very high after treatment, so they decided I didn’t need further injections. For several years, they were right. But that decision would come back to haunt me.

The Second Time: The Fight for Treatment

About 12 years ago, I’d moved to Lincolnshire but was still doing extensive driving – weekly trips to the South London office, plus a national customer base. The symptoms returned, similar to before, but this time they escalated terrifyingly fast.

Tired. Confused. Irritable. No appetite. Vision problems. Tremors. Pins and needles shooting through my body. Ataxia – I couldn’t walk straight. My teeth started having issues. The full devastating list of neurological symptoms.

At one point, I went to bed for two weeks because I literally could not function.

Try explaining that to your employer. Try finding the words when your brain is foggy and you can barely string a sentence together. ‘I can’t come to work because I can’t get out of bed’ sounds like depression or laziness, not a serious medical condition. The professional consequences of an invisible illness are real and frightening.

My new GP was much harder to convince. Despite my family history – despite my previous diagnosis – despite my obvious symptoms, they tested my B12, found it low, and prescribed tablets and dietary changes.

They did absolutely nothing.

Here’s what people don’t understand about Pernicious Anaemia: it’s an absorption problem. My gut cannot absorb B12, no matter how much I ingest. Tablets are useless. It’s like telling someone with Type 1 diabetes to just eat less sugar – a fundamental misunderstanding of the condition.

I had to fight. I had to argue. I had to advocate for myself while my brain was failing me. Finally, I got another course of loading injections. Things improved.

Then the course ended. The symptoms returned.

I had to push for regular injections. First, they agreed to every three months. I relapsed. Every two months. I relapsed again. After writing a letter to the practice manager, I finally got injections every four weeks.

Let me be clear: B12 injections are inexpensive and virtually risk-free. Yet I had to fight, relapse, and write formal complaints to get adequate treatment for a well-documented condition with a family history.

The Absurdity of It All

The solution to my condition costs pennies. A B12 injection is one of the cheapest treatments in modern medicine. There are virtually no side effects. The evidence for its effectiveness in PA is overwhelming. The consequences of under-treatment include permanent neurological damage.

Yet patients across the UK are fighting the same battle I fought. We’re questioned, dismissed, offered tablets that don’t work, told our levels are ‘fine’ when we’re clearly symptomatic, and forced to deteriorate before we’re believed.

Why? What’s the reasoning? When the treatment is cheap, safe, and effective, why make patients suffer and fight for it?

Life Now

Today, my Pernicious Anaemia is under control with regular four-weekly injections. I work in a dynamic, demanding environment and I’m performing well. I refuse to use PA as an excuse or let it hold me back.

But ‘under control’ doesn’t mean perfect. I’ve had other medical issues that I suspect are related to PA – the autoimmune connection, the years of under-treatment, the neurological damage that may have occurred. I can’t prove the link, but the pattern is there.

PA is always there in the background. I’m vigilant about my injection schedule. I know my early warning signs. I’ve learned to recognise when I need to advocate for myself. The condition doesn’t control me anymore, but I’m acutely aware of what happens when treatment fails.

What I Wish I’d Known: Practical Advice

You’re not going mad. What you’re feeling is real, valid, and physiological. The fatigue, the brain fog, the neurological symptoms – they’re not in your head. They’re caused by your body’s inability to absorb a critical vitamin.

Document everything. Keep a symptom diary with dates. Record how symptoms affect your work, your daily life, your ability to function. This documentation is your evidence when you need to advocate for yourself.

Know your family history. Autoimmune conditions cluster in families. If you have relatives with PA, Hashimoto’s, Type 1 diabetes, or other autoimmune diseases, tell your doctor. Bring documentation if necessary. This is medically relevant information.

Understand the tests. Request serum B12, active B12, intrinsic factor antibodies, and parietal cell antibodies. Know that a ‘normal’ B12 level doesn’t mean you’re not symptomatic – treatment is based on symptoms, not just numbers.

If tablets don’t work, say so. PA is an absorption problem. Oral B12 is ineffective for many people with PA. If you’ve tried tablets and you’re still symptomatic, insist on injections. Don’t let anyone tell you to ‘give it more time’ while you deteriorate.

Be prepared to fight. Sadly, many patients have to advocate firmly for appropriate treatment. Be polite but persistent. Ask for things in writing. Escalate if necessary. Your health is worth fighting for.

Find support. Organisations like the Pernicious Anaemia Society provide evidence-based information and community support. You’re not alone in this fight. Connect with others who understand.

Don’t suffer in silence. The isolation of an invisible illness is real, but there are people who understand, resources available, and growing awareness of PA. Speak up. Tell your story. Help others recognise the signs.

A Message to Healthcare Providers

If you’re a GP, nurse, or healthcare professional reading this: please listen to your patients.

When someone presents with fatigue, neurological symptoms, and a family history of autoimmune disease, take it seriously. When someone tells you tablets aren’t working, believe them. When someone describes symptoms consistent with B12 deficiency, don’t dismiss them because their levels are ‘in range.’

Treatment is cheap. Treatment is safe. Under-treatment causes permanent damage.

You have the power to change lives with a simple prescription. Please use it.

Final Thoughts

I’m sharing my story not for sympathy, but for recognition. Pernicious Anaemia is a serious condition that’s often dismissed, under-treated, and misunderstood. The medical evidence is clear. The treatment is straightforward. The outcomes with proper treatment are excellent.

Yet thousands of us are fighting the same battles, having the same conversations, experiencing the same dismissals.

It doesn’t have to be this way.

If you’re reading this and recognising yourself in my story – the fatigue, the neurological symptoms, the struggle to be believed – please don’t give up. Keep advocating. Keep documenting. Keep fighting for the treatment you deserve.

You’re not imagining it. You’re not being difficult. You deserve to be heard, believed, and properly treated.

Your health matters. Your voice matters. Don’t let anyone tell you otherwise.