Alex Spencer-Brown

Alex’s Story

Looking back I think I’ve always known something wasn’t quite right. I’ve struggled with energy levels if I skipped breakfast or left it too long before eating for over a decade. In 2022 the episodes started. They were always around the time of my period at first, on a Saturday morning as I was waking up. I’d later realise this was as a result of eating breakfast later than my usual routine mid week. I’d be conscious but confused, unable to hold conversation or think straight. I’d come around 15 mins later without full memory of what I’d done or said but knowing I’d been behaving strangely. As time went on the episodes got worse, I’d be conscious but unresponsive. My body would twitch violently and I’d wake up flooded in sweat freezing cold. My partner would ask me my name or his name and I wouldn’t be able to answer, only give a slurred, disorientated response. I thought I had early onset dementia. He pushed me to finally go to the doctor and face what was happening and I’m so glad I did.

In November 2023 I met with my GP. I told him my story and mentioned the link to my cycle, to which he asked “Are you sure you’re not just dosing?”. I realised in that moment getting people to believe me would be half the battle. As I’d mentioned twitching he put me forward to be tested for epilepsy, which came to make sense as I later learned my body was in fact seizing. Months on, multiple brain scans and tests later, I was no closer to any answers.

Sunday 5th May 2024 was the day everything changed. I woke up attached to an IV and my bedroom full of paramedics. My partner stood at the end of the bed and I could see in his face he’d thought there was a possibility that I might die. It was haunting. One of the paramedics asked me if I knew what had happened, to which I responded “I’ve had an episode”. It was this paramedic’s time and care that I believe got me to where I am today. I told him about my episodes and he listened as opposed to making me feel like it was women troubles that should be dismissed. He explained blood sugars to me, suspecting the incident was a result of me being an undiagnosed diabetic. He recommended I buy myself a blood sugar monitor kit and keep a diary of my sugar levels to have some evidence behind me when speaking to the doctors. They stayed for hours until my blood sugars were high enough after sugary food and drink, and I was told I didn’t have to go to hospital on the promise I booked an emergency appointment with my GP. I later found out my blood sugar had been 1.1mmol when they arrived and I’d been in a hypoglycaemic coma.

My partner came with me to my emergency appointment the next working day. The male doctor seemed entirely unphased as he had previous blood test records showing I wasn’t diabetic, but he ran me through further blood tests to confirm. A few days later I received a text message saying I’d been prescribed Vitamin B12 as my levels were slightly low. Given the severity of what had happened I called the doctor's surgery confused and knowing in my gut that I was dealing with something bigger than a B12 deficiency. I asked him how this related to my hypoglycaemic attack, to which he answered “It could have just been a coincidence”. He seemed so unbothered that I started to doubt myself as to whether I was making the whole thing up.

I finished my three month course of B12 and as it became clear nobody would be following up with me, I made multiple attempts to book an appointment. A few weeks later I went into my doctor’s surgery and was eventually given a phone appointment for three weeks time. I promised myself that by the time I next spoke to someone, I wouldn’t leave until I felt reassured I was being taken seriously. Prepped with months of research and sugar level measures, I told the doctor I needed to see a specialist as I was in a constant state of hypoglycaemia and listed various conditions I thought I may have. He agreed and requested an appointment; the next available date was June 2025, almost a year later. He called me to acknowledge the wait time but said I would need to do several overnight fasting tests ahead of the appointment, so suggested I could do this now if I wanted to feel like I was moving things forward. Frustrated by how hard I was having to work to get anyone to take me seriously, my first instinct was to hang up and avoid the situation, but my gut told me to take the tests. To this day it was the best decision I’ve made.

I dutifully went for my blood test having skipped my usual 7.30am breakfast. I felt the all too familiar sensation of not being grounded, almost as though I could float away as I walked. My vision was blurred and I could feel my back dripping with sweat despite it being a cold winter day. Fortunately my GP was around the corner from where I lived and worked, so I went home afterwards to eat before carrying on to work as I would any other day. Several hours later I received a phone call saying I urgently needed to go into hospital as my blood sugar had been 2.8mmol. They sounded confused when I told them this was a normal level for me, that I felt fine and was at work, but we agreed for me to go in for my second fasting test a few days later. I received a further call later that evening from an out of hours doctor to confirm I felt safe and didn’t need to be in hospital. A few days later I had the same result from my second test and was told an emergency appointment had been made with the endocrine team at a local hospital a few weeks later.

At the appointment, I was met by a trainee doctor who listened and made a note of everything I told her. Once I finished, I was pleased to hear she felt I should meet the Head of the department. A short while later, a woman walked into the room and stood opposite me, crossed her arms, and simply said, “weird”. I felt a weight lift off my shoulders as my story I’d been trying to tell for the last year was validated. She tested my blood sugar level, I realised it was the first time this had been done outside of the fasting tests, and said she believed there were two possible causes for my constant hypoglycaemic state. I was told I’d need two separate blood tests and the one outcome was extremely unlikely, but it meant I didn’t have to come off the medication I was on at the time, so we agreed to start with this one to dismiss it before moving onto the next.

A week later, I was called in for a meeting with the same consultant and told the blood test had confirmed I had an insulinoma. I was told how incredibly rare it was, even as the Head of the department her experience of it was limited. She said in the medical world when it comes to these types of things there were horses and there were zebras; I was a zebra, but a weird zebra. That’s stuck with me to this day. She explained it was common for symptoms to escalate rapidly as the tumours become more developed and prescribed me Diazoxide, a specialist medication to help manage the hypoglycaemia. I was told I’d likely entered this stage as the frequency and severity of my episodes were getting worse. We discussed the next step being to locate the insulinoma so it could be surgically removed and I walked back to finish the day at work.

Multiple CT scans and MRIs later and we were no closer to finding it. The remaining option was an endoscopy. I was on the strongest dose of Diazoxide by this stage and the side effects were brutal. Water retention that caused swelling of every limb, to the point where shoes would no longer fit me. Constant nausea. Excessive hair growth all over my body so having to wax my face and hands became part of my skin care routine. The worst part was that despite everything my episodes continued, all be it less frequently. My partner had become my carer as my energy levels were constantly depleted and it wasn’t safe to chance waking up on my own, as there was a strong possibility I wouldn’t without someone administering glucogels. I became scared to go to sleep out of fear for what I’d wake up too. My vision was constantly blurred and I could feel my personality changing. When I was awake I’d have to eat every hour and go through packs of glucose tablets just to make it through the day. I felt uncomfortably full from the moment I woke up to the moment I slept, and began to resent having to eat. It took over my whole life and I very quickly lost myself. Death no longer scared me, but the thought of what it would do to my loved ones did. I realised I couldn’t live like this forever.

I was having a hypo when I arrived at the hospital for my endoscopy, unable to say much other than I needed glucose. After several hours of glucogels I was given a glucose drip and put to sleep. I started to come too towards the end of the procedure feeling as though someone was choking me. I remember the doctor saying they hadn’t found anything before instructing the room to end the endoscopy as I began coughing and it was clear I was waking up.

I sat in the waiting room to meet the doctor for my results. He told me they’d taken a biopsy of something, but they hadn’t found the insulinoma. The procedure had been unsuccessful. I was devastated. It was the day before Christmas Eve and it threw me into a state of denial. I spent Christmas with my family and took less than a night's worth of glucose supplements and gels for the three days I’d planned to stay there. My mum and brother knew what had been happening, but not to the full extent of it. My brother spent Christmas morning on the phone to my partner trying to get me to regain consciousness, quickly using what little glucose I did have. I remember very little of the day, but I told my dad what had been happening for the first time before lunch.

On Boxing Day I once again woke up to paramedics. But this had been worse than previous episodes. The response time was incredibly slow given the time of year, around two hours. By the time they got to me I was unresponsive having had two seizures. They managed to bring me around and shortly after waking I felt overwhelmingly nauseous and was violently sick. I’d wet myself from the seizures. I remember the heart breaking look of terror on my family's faces. I spent Boxing Day in hospital on a glucose drip and was discharged the next morning. Every inch of my body ached from the seizures. I felt so much guilt for what I’d put my family through, but it slapped me back into reality. I couldn’t put anyone through that again. From that day, I listened to my body to learn its limits. I trialed daily routines down to the hour to learn how to get to the end of each day as best I could. I tested my blood sugars until my fingers were numb, with levels ranging from 2.4mmol to 3.5mmol after eating.

In January 2025 I received a letter with test results from my biopsy confirming the insulinoma had been found. After all this time, I finally had my answer. I spent Valentine’s Day in consultation with the surgeons talking through complications and next steps, but I knew that none of it would be worse than what I was already going through. I left the appointment knowing I may lose my pancreas and spleen, that I could become diabetic; and yet it was the happiest and most peaceful I’d felt in years.

My surgery was on 1st May 2025. I was admitted to hospital the night before so I could have a glucose drip overnight to get me to the minimal sugar level for surgery. The surgeon met me in the morning and said they didn’t know the exact location of the tumour, so they would remove sections from the tail of my pancreas until they found it. As a result there was a good chance my spleen would need to be removed meaning I would have a compromised immune system for the rest of my life. I don’t think there was anything he could have told me that would have stopped me having the surgery.

I came around as I was being taken to ICU. I can still remember the euphoric feeling of knowing that I had my body back. The surgeon came to see me and said they’d been successful in removing the insulinoma without having to remove my spleen. He said it would now be a waiting game to see how my body would respond and whether I’d experience any complications.

Several hours after surgery, likely as a result of my previous source of insulin being removed from my body, my sugar levels started to spike, rising to 16mmol. I was put on an insulin drip and told there was a good chance I would become diabetic. 7 days later I was sent home from hospital with an insulin pen and told we’d need to wait and see what happens next. I was determined not to let this experience win, so after one week I told the doctor I’d be easing myself off insulin out of fear my body would become dependent and I’d turn diabetic. So far so good.

Today, I can honestly say I’m as close as I can be to what I can remember from my previous life. I’d be lying if I said life has gone completely back to normal, because I’m not sure that’s possible. But I’m lucky enough to have the opportunity to get to know my new normal. To start again and understand my new body, and most importantly but most challenging, overcome the health anxiety and trust that I’m better. I think I’ll always check my blood sugars when I feel a bit tired or rundown. But over time I’ll learn to trust that that’s exactly what this feeling is; just being tired or rundown.

I hope my story will give comfort to anyone who may have recently been diagnosed or undergone surgery. As a rare disease there’s so little out there in the way of stories. I searched following diagnosis and struggled to find much in the way of a positive outcome, or at the very least to find hope that it would be possible to walk away without complications. I’m aware of how much worse things could have been or how much my life could have been altered. There’s been a lot I’ve had to work out on my own and there’s still a road ahead of me, but every day I feel further forward. In moments where I struggle I remind myself of my favourite takeaway from this whole experience: how little the big things we spend half our time chasing really matter. It’s the little things you miss when they’re gone. Closing your eyes for an extra 15 minutes when you wake up on a Saturday morning. Leaving your house without having to know what time you’ll be home. That first bite when you’re hungry at a meal out with friends. It’s given me a perspective on life that I’ll carry with me forever. And for this I feel like one of the luckiest people alive.