Debbie's Story
Insulinoma – my story by Debbie Robbins
My story of my Insulinoma began when I was 44 – 2019. I didn’t know I had Insulinoma at the time and thought all my symptoms were due to perimenopause, as I was diagnosed as such. These symptoms mirrored the perimenopause, so it was understandable why I thought this: extreme fatigue, dizziness, hot sweats, rapid heartbeat, anxiety, and numbness (pins and needles) throughout my body.
It was only in late 2022 and early 2023, when my symptoms became more severe and I was not able to focus on some conversations, or able to hear or speak to others at certain times, and lastly, and the one of my scariest symptoms, losing memory. My first sign of this was early 2023 when I had ‘fell asleep’ on the sofa and awoke and not knowing how I had got there or where my partner was. I didn’t recall the events that led to this. Then a few months later in June 2023, I lost 20 minutes. According to my partner, as I don’t remember anything, I was talking ‘gibberish’ on the phone to a supermarket delivery man and then I went into the kitchen, spoke to my partner, and proceeded to go upstairs, where I awoke 20 minutes later dripping in sweat and not remembering anything as to what had occurred.
Looking back to this occurrence, I don’t know how I managed to become awake without any food or sugar, but amazingly, I did! I went to my GP, and she referred me to Neurology, and I had a brain MRI. They couldn’t find anything wrong with me obviously, and stated I had a condition called ‘Dissociation’. I cried when I heard this, as I knew I hadn’t. I had no trauma in my life at the time, so this didn’t make sense to me.
Fast forward 3 or 4 weeks later, and now into early July 2023, and that’s when my Insulinoma awareness began. It was a Sunday, and my partner was due to play cricket that afternoon, however, it got cancelled, and how my situation could have been different if he did go, but I don’t like to think about that too much! I had been doing normal chores, vacuuming, washing etc. I was beginning to feel very tired that afternoon, so I laid on the sofa and must have fell asleep. Next thing I vaguely remember was my partner telling me he was going to call an ambulance.
He had later told me that I had crashed onto the floor and had a seizure. In the minutes that followed whilst I waited for an ambulance, I remember hardly being able to talk or walk, and just about managed to ask him if I was having a stroke. He reassured me and told me that I wasn’t. He was the best person to be with in a crisis, so calm and reassuring! The ambulance crew took my blood glucose level which read 1.3, dangerously low. I am not diabetic so after giving me a jam sandwich and very sugary drinks to bring my glucose up to safe levels, they decided to take me through to A&E to ensure I was checked over. This is what I now know to be a hypoglycaemic seizure and all my previous symptoms were occurring due to me having hypos.
I was in only A&E for an hour, and an amazing A&E Senior Consultant examined me and took blood tests when he told me that he thought I had Insulinoma. Obviously, I had never heard of this, but explained that it was extremely rare and that he advised that I stay in and be referred to the Endocrine specialist team. I was in hospital a week when I was diagnosed with Insulinoma after having the 72-hour fasting test, although at the time, my Endocrine Consultant didn’t want to put a label on this until the tumour had been found. In fact, he initially didn’t believe that I had this, due to its rarity, until my glucose levels went down to 1.9 after 12 hours of my fast. He stated I wasn’t following a typical pattern of someone with Insulinoma; meaning my glucose levels were going up after a hypo without any sugar and also remaining stable during the initial hours of my fast. To this day, I am not sure how I managed to recover from previous hypos without any sugar!
I had to stay in hospital for a second week 6 weeks later, so I could have further tests and have an MRI. This confirmed I had a tumour on my pancreas which was 1.6cm. They could only find one tumour and it was on the tail of my pancreas. I was relieved but at the same time, scared, as I knew the only way to resolve this was surgery. Up until this point in my life, the only time I had been in hospital was visiting others, so it was a bit of shock and worry for me, and my family and friends, particularly as I didn’t know if it was just the one tumour, if it was malignant or if it had spread. My local hospital referred me to Kings College Hospital for the next stages: scans, and surgery.
In the months that followed, I had a CT and PET scan, and lastly, an endoscopy, to locate the tumour and have a biopsy. Not a nice experience, but a necessary one! It was in October that they then confirmed, to my relief, that I would be going in for surgery for a Distal Pancreatectomy and Splenectomy on 28th November 2023.
My surgery went well, despite being very sick due to the opioids that I had been given for the pain. My recovery since my surgery has been a little bumpy, however, overall fairly smooth. I have had quite a few digestive issues, but my wounds are healing nicely, and I am now back at work, 7 weeks later after my surgery. I was told that my histology results had shown that they had removed all my tumour and it had not spread. I was elated!
I know I was one of the lucky ones to have been diagnosed so quickly after referral, and to be able to be seen by an incredible A&E consultant, who knew exactly what was going on, even though he had never come across it before (only read about it through his research). If it wasn’t for his early diagnosis, I often wonder if I would have just been sent home and referred back to my GP. I was also lucky to have an amazing surgeon, who came to check on my progress whilst in hospital most days. I am extremely fortunate to have had a fairly smooth recovery as I am aware that others don’t always have the same journey as me.
I am now on penicillin for life and creon as and when it is required. My recent blood test results are a little elevated in certain areas, such as platelets and HbA1c (diabetes check), however, at the moment, showing just about in normal range. I have been told that this is to be expected due to 30% of pancreas and my spleen removal. I know that this may change in the future, for the better or worse, as I have been warned of possible diabetes and other things, therefore, I eat healthy (most of the time!) and live my life in the best way possible.
I feel grateful for my family and friends and realise the importance of knowing when things are not right within your body and getting checked by a doctor if feeling unwell. I look forward to every day and know this diagnosis has changed me, through the people that I have met along the way hearing their stories of adversity and strength, feeling so humble and never taking anything for granted.