Kris, from Middlesbrough, talks about his experience of being diagnosed as an adult, on 23 March 2012, and his involvement with type 1 diabetes research.
My experience of diagnosis
As I came towards the end of my holiday in Thailand, I began to experience severe dehydration and exhaustion. I’d had this on and off for a few months but this time it couldn’t be ignored. Assuming it was something to do with the heat or food poisoning, it never occurred to me it could be type 1 diabetes.
Luckily I got back to the UK safely, however it felt like my body was slowly shutting down. I managed to last a few more days before making an appointment with the doctor for the following week. My family was aware of my symptoms and were naturally worried. My sister insisted I went to the walk-in centre in Newcastle. At this point I could barely get out of bed, so I took her advice and headed over on 23 March 2012. This was to become a day I would never forget.
Within ten minutes of being with a nurse the word diabetes was being used. I was losing concentration at this point and it didn’t really register as something serious. Like most people, I didn’t know anything about diabetes, nor that there were two types. After testing my blood numerous times and it registering as too high, a reading of 31.1 came through and it seemed to confirm the nurse’s suspicions.
Within an hour I was in an ambulance going to the Royal Victoria Hospital in Newcastle and I was hooked up to a saline and insulin drip for the next six hours. Various professionals came and went and eventually I was told it is most probably type 1 diabetes, due to the symptoms I was experiencing. My body was producing a lot of ketones and I was to spend two nights in hospital under observation. I was told that if I had left it for a few more days, I would have probably gone into a diabetic coma and may not have woken up. I thank my sister for getting me to go to the hospital on that day and potentially saving my life.
After being discharged, I was back and forth to the diabetes centre to see my consultant, diabetes specialist nurse (DSN) and dietician. My confidence and knowledge increased as I joined a carb counting course.
Getting involved in clinical research
Within 30 days of my new diabetic life, I was approached by the diabetes centre to take part in some clinic research. I jumped at the chance, as I wanted to get involved in any way possible. The research was looking into a vaccine for type 1 diabetes, specifically focusing on shutting off the autoimmune process which destroys the beta cells.
The research involved visiting the hospital once a fortnight for about six months, followed by another six month observation period. Although this was a big commitment, I realised I would benefit from the around the clock care, which was very appealing, so early into my diagnosis. It was also exciting to be involved in something which may one day lead to a vaccine and put a stop to anyone else developing this condition, especially those at a potentially higher risk like my siblings and children.
My programme began in June 2012 and once a fortnight I would visit the clinical research facility at the Newcastle RVI. Every visit, I would have the vaccine injection, called MonoPepT1De. I was honeymooning a lot in the first few months and although this gave me a break from having four injections a day, it didn’t mean I could be care-free and do what I liked. If anything, it required more attention, as I never knew when I would need to start administering insulin again.
Along with having the vaccine injection every visit, I was given a full physical examination and my levels from the previous weeks were reviewed with the diabetes nurse. This was a great opportunity to ask all those questions that pop up in the first few months. The advice I received every visit was invaluable and I believe it has helped me keep tight control of my levels. Since diagnosis my HbA1c has stayed between 6.3% and 6.8% (which is within the NICE recommended targets).
Every other visit I had to give blood samples, which were testing for a range of things from HbA1c, coeliac, thyroid antibodies to organ function and mineral content, such as potassium and calcium. It was a comfort to know that my HbA1c was at a good level on a regular basis and everything else indicated I was fit and healthy.
From being diagnosed and visiting the diabetes centre, to attending the carb counting course and the clinical research, I only have positive words to say about the NHS and the staff I have been in contact with. I know that not everyone has the same experience, so I feel very lucky even in the circumstances!
I have had type 1 for less than a year but already I have played a part in medical history thanks to this trial. The trial has allowed me to understand my type 1 and has helped me control the condition – instead of it controlling me.’
While the MonoPepT1De trial is now finished, you can find out about the follow up study, called MultiPepT1De.