Laura Jones aged 27
from the West Midlands, UK
Diagnosed with 2 Insulinomas in January & March 2010
My symptoms first started back in September 2008 (I was 25 at the time). It was whilst spending a day in London with some of my family I noticed that I was feeling what could only be described as drunk. I knew that I was only drinking lemonade but still asked my dad if he’d put some gin with my lemonade, which of course he hadn’t done! We went for a meal shortly after that & I soon felt a lot better.
My symptoms became more & more apparent & by May 2009 onwards I was experiencing the following regularly; dizziness, lack of concentration, exhaustion, tingling mouth & lips; particularly after eating, severe memory loss, the need to eat regularly as I was constantly hungry which resulted in weight gain, I struggled with even basic day to day tasks as I felt so exhausted & if I did any exercise that again would have a negative effect on me as my blood sugar dropped.
I was regularly visiting my doctor to update them on what was happening & that I was having strange attacks whereby I would experience erratic involuntary limb movements (both arms & legs) & ultimately I’d end up on the floor. One of the worst things was that this was starting to happen in public places &, on one occasion I happened to be in a coffee shop during peak time, but thankfully I didn’t injure myself & my husband was with me. In May 2009, given the similarity of the symptoms, my doctor advised me there was a possibility that I could have epilepsy & that I was going to be referred to a Neurologist as soon as possible to look into this further.
On the 2nd June 2009 I was following my boss home one night (one car behind the other) as I was going to see his new baby boy. On route I remember following him & then all of a sudden my foot went down on the brake & I was trying to control my driving but it was almost like I couldn’t control my feet. My boss in front noticed & so slowed down, I managed to catch up with him & he turned right. From here on in the rest is a complete blur, I don’t have any recollection. The next thing I knew was being in a grass verge with my boss stood next to the car looking very worried. I had my head down on the passenger seat & I burst into tears. I knew I’d had a funny turn but had no idea about the scale of what had happened. We then left my car on the grass verge & my boss drove me home. My husband opened the front door & I was very upset as I was unsure what had happened. Thankfully that day I had told my boss about the possibility I had epilepsy so he was aware of what I was going through to a certain extent. He then told my husband in private that I had actually driven into the back of his car & he could see that I was unable to control the car. My husband later told me what had happened & I was very upset as I had no recollection of it happening & it’s very out of character for me & I felt like I was losing control but didn’t know why.
I saw the neurologist a few days later & it was decided that I should have an MRI scan & an EEG. I returned to get the results of the tests & they didn’t show anything abnormal but apparently this can be quite normal for people with epilepsy as they often needed to catch a seizure during or shortly after it had taken place. Our Wedding was pending so it was decided that I’d start on some epilepsy medication & see how I coped, increasing it weekly until I reached the correct dose. At this stage I voluntarily surrendered my driving licence. I didn’t notice many changes from the medication although I was becoming increasingly tired, but just put this down to the increased medication I was taking. During this meeting the neurologist did recommend that I also saw an endocrinologist just to rule anything out from their point of view, which was sparked following the confession of my constant hunger & the need to eat regularly.
One of the most frightening occasions was in August 2009 when my husband & I arrived at my mum’s house; I knew the code for the alarm so she told us to let ourselves in. It took me a while to even get the key in the door & I felt something was wrong. As soon as we got into the house the alarm was going off & I looked at the key pad to enter the alarm code & it was as if I had never seen it before & I had no idea what the number was. I just stood there in a daze whilst my husband tried to engage me in conversation. He called my mum to get the code & I went to sit down. I was feeling so tired & so I went to lie down. In hindsight this was the worst thing I could have done as I needed to eat to bring my blood sugar back up. I went into a deep sleep & 2 hours later my mum & husband woke me up for tea. I was apparently very vague & had a blank expression. I then had 2 hypo’s which lasted about 20 minutes each. This was the first time my mum had seen it so it was obviously distressing. When the 1st hypo lasted longer than usual they called an ambulance & as the ambulance staff arrived I had the 2nd hypo & so they were able to witness what had been happening. They said that this wasn’t characteristic of an epileptic attack & they checked my blood sugar level which was 1.9. I was given a sugary cup of tea & some bread with lots of jam on but due to how low it had gone& that I was still very confused I was taken into hospital.
I visited my doctor again at the start of September 2009 after my time in hospital & it was during this appointment that the first discussion of Insulinoma was raised. My doctor mentioned that whilst she was at medical school she had learnt about Insulinoma & the symptoms. The doctor said that she would notify the neurologist about her thoughts & take it from there.
I then got married & we had a wonderful day & a wonderful honeymoon! Upon our return my symptoms got increasingly worse & I was now seeing an endocrinologist. I had a series of fasting blood tests & the lowest it went was 2.6. I was now adamant that I had an Insulinoma & so continued on my quest to get a diagnosis. The endocrinologist was very helpful & now that he knew that we had got married & that I didn’t have any addition stress I had a prolonged fast which lasted about 6 hours, by which time my blood sugar had dropped to 2.4 & after analysis it showed an increased c-peptide & insulin level. By this point an Insulinoma was looking increasingly likely. In early January 2010 I had a CT scan which confirmed a 2.6cm lesion on the tail of my pancreas which was confirmed as an Insulinoma. I was shocked but also relieved at the diagnosis & thankful that after the journey I had been on I had reached a point whereby it could be dealt with. I was put on diazoxide in the short term & I then had an endoscopic ultrasound to confirm the location.
During March 2010 I had open surgery to remove the Insulinoma (at this point the original sight of the Insulinoma was ruled out & an Insulinoma at the head/neck area of the pancreas was confirmed) & although this was successful the original sight of the Insulinoma on the tail of my pancreas was in fact another Insulinoma & so my symptoms remained. This was then successfully removed at the end of April 2010 as well as my spleen & although I had 2 lots of open surgery in close succession, I was relieved to see that my blood sugar levels were slowly returning to a normal level. I had some complications following both lots of surgery which included infections; a collection of fluid where my spleen used to be & a build up of fluid on my left lung. All of which were treated following a few returns to hospital.
Life for me is now slowly but surely returning to some sort of normality. It is 2 ½ months since my 2nd operation & I am making good progress but still taking things slowly. It’s amazing the difference steady blood sugar levels have on you & with no hypoglycaemic attacks I can rest assured that that period of my life is over & I’m just thankful to all my family & friends who have helped me along the way.
