Insulinoma Support Network

Our stories

Our stories

Read the experiences of people living with insulinomas. We are always welcoming new stories, contact us to share yours.


Wendy's Story


Wendy was diagnosed with a benign insulinoma in July 2006.

I really don’t know when it all started but I think that it might have been as long ago as 2002. We would have a meal and a cup of tea afterwards. I would help myself to a small cake or biscuit saying ‘I just needed something sweet’. I haven’t had sugar in drinks since I was 7 but having done a Weightwatchers diet once, sugar free drinks were the norm for me.  It was later on that my husband said that it was a habit of mine – a very regular habit with a reason I didn’t know about.

By 2004 I first started noticing things. Bad headaches, especially after 1 alcoholic drink the previous evening, lethargy, lack of concentration and awareness. I just put it down to working for myself and running around after the children and my age.

It was Tuesday 7th June 2005 when I knew I had a problem. I had an early lunch – sandwich and yoghurt probably and left home to drive to do a bridal makeup rehearsal booked for 2pm about 40 mins from home. The rehearsal took longer than planned and I had a drink of water whilst I was there. I left around 6pm ish  – I don’t really know what the time was.  I wasn’t feeling too good and I knew I needed to eat something.  I had an empty vagueness around me. Something was wrong.  I knew of a shop nearby and drove there. I sat in the car for a short while then went into the shop. I knew I had to eat but I didn’t know what to do in the shop.  There were people there and it was all very confusing to me. It wasn’t a panic attack just confusion. I went back to the car and sat there again trying to make myself feel ‘right’. I had a pack of tic-tac’s in the car and just sat there eating them.  I decided I had to get home. I phoned my husband said I was on my way and he said he would get dinner.

That drive was so long. I drove slowly as I knew I wasn’t concentrating. I remember at one point wondering what the gear stick was for. I really have no idea how I managed that journey without having an accident. Fortunately I got home. The family had just sat down to eat.  It was strange but I felt my body returning to normal as I ate.  It was only a salad but the effect on my body was amazing.

The first thing I did the next day was to look up my ‘symptoms’ on the internet. By this time I thought absolutely the worst.  Early stages of dementia? Brain tumour? Alzheimer’s?  I used Google and it took ages to sift through the sites and I didn’t come up with an answer.

Next day – I phoned my GP surgery. I was given an appointment with a Locum GP.  At the appointment I carefully explained what had happened to me on the Tuesday. The GP listened and at the end took a reading of my blood sugar which showed a level of 4. ‘Don’t worry, its just a one off thing, you’re not diabetic’.  I was dismissed.  BUT I know my body.

Back to Google…..

It took time but eventually I found a site related to diabetes. I knew it wasn’t diabetes as I have a diabetic niece but scrolling though I found out about Hypoglycaemia. It all seemed to fit. There was a long list of symptoms and I could relate to some of these. There was also a list of food/drinks that would help when an attack was imminent. I printed the whole lot. I mentioned to my husband about me and my experiences, and showed him the print off from the diabetic website. I took to carrying a pot of raisins with me now but I don’t think either of us  were quite aware of what was going on.   

Time passed and I thought perhaps I was OK. Then there would be the odd time when I knew I was ‘losing it’ – vagueness would descend over me. We went on holiday to Spain in August and I recall one day feeling quite distressed. My kids got me some orange juice. I’m not sure that they all then understood what was going on – I didn’t know myself.

Monday 31st October 2005. I remember a sense of movement, everything was bright white and I could hear a voice. The voice became clearer – a man was asking me what day it was and if I knew the date. I remember thinking it was a silly question but answered Monday – it was Halloween, 31st October. The whiteness dissolved into reality – the man was a paramedic and the sense of movement I felt was because I was in an ambulance heading to hospital in Canterbury.  

It transpired that my husband had woken up that morning as the phone was ringing in our bedroom. It must have been around 8am. I usually answer the phone but I was just lying there – eyes open apparently awake.  Both he and the children could get no sense out of me – I said something like ‘Go away, I’m OK.’ I obviously wasn’t. However as I appeared awake they didn’t act with any urgency. My husband, not knowing what was wrong or what to do phoned the GP surgery.  They couldn’t get a doctor out until after 12 noon. Apparently the children were quite distressed and so he phoned 999 for an Ambulance. The Paramedics arrived and immediately diagnosed a Hypo attack and did whatever was necessary for me. A blood sugar reading showed 1.1. 

In the hospital Emergency treatment Centre I learned that the cause was two glasses of wine the night before.  We had popped out to the pub – a very rare event - when we got home I had a large glass of squash – low sugar squash. This was my big mistake but I didn’t realise. The wine reacted badly with my body, pushing my blood sugars right down to floor level.

An appointment was set up for me to see a doctor at the hospital as a follow up on 9th November. He immediately referred me to Dr Michael Flynn the local Endocrinologist.  I was given a little advice about alcohol and diet and advised to only have an alcoholic drink with food until I had seen Dr Flynn and was correctly diagnosed. It was also suggested that I get a blood sugar monitor to regularly check my levels.

This I did and I went to my local surgery where a nurse showed me how to use it and to understand the readings.

I still continued to do ‘strange’ things – most of which I did not tell anyone about – I remember one day sitting on the bed wondering what to do with a bra and how I wore it. I would go places and have virtually no recollection of it shortly after. I kept eating regularly to try and push the blood sugars up and was steadily putting on weight.

9 Jan 2006 – first appt with Dr Flynn. He has initially diagnosed hypoglycaemia and arranged for me to have a series of tests. He also confirmed that I need to constantly check my blood sugar levels and have a snack when they are dropping.

17th Jan – First test was a CT scan – the results subsequently showed nothing.  On 20 March Dr Flynn prescribed Diazoxide as my blood sugar levels were constantly low. However I subsequently stopped taking this as I suffered distressing side effects and the drug had no effect on my symptoms.

There followed a succession of visits to the Hospital, still under Dr Flynn, for further (calcitonin) blood tests, another CT scan and finally on 22 May Hosp Dr Flynn, believing that I had developed an insulinoma, referred me to Mr Richard Collins at the Kent and Canterbury Hospital. Mr Collins had experience of my condition.

19 June – I first met Mr Collins who heard my story and said he felt the insulinoma diagnosis was correct.  An MRI scan was set up to try and local the exact site of the lump.  This was done on 4 July but nothing lump was shown on the scans. I was booked in for surgery on 31st July. It was explained to me that depending on the site of the lump I might have to undergo a Whipple’s procedure which apparently had the trainee doctors queuing up to watch!!

My personal thoughts were that my life would start again when I woke up.

I was lucky – the insulinoma was towards the ‘tail’ of the pancreas. They used an ultra sound during surgery to trace it. It weight 0.8 of a gram and was roughly the size of a pea.

8 days in hospital and I came home just over a stone lighter and feeling normal again. When I went for my post-op check Mr Collins reaction was – ‘don’t you look good!’

Mr Collins has since retired but I am so grateful for the large scar he left me with - a small price to pay! 

Elliot wright