Lee: 'Undiagnosed diabetes nearly killed me'

Lee, a young slim guy, on the dangers of ignoring the symptoms of diabetes.

There are two popular myths about diabetes. One is that it is caused by obesity and doesn't affect slim people. The other is that it's not serious because it can be managed with diet or injections. Neither are true. Ignoring the symptoms of diabetes is very dangerous - as 35 year old Lee found out. 

There's more about the symptoms in our Diabetes FAQs.

This is Lee's story.

I had all the classic symptoms - weight loss, thirst, thrush but I did nothing about it. I did not like going to the doctor so I would just put it off. I was divorced in 2003 and lost a lot of weight so put it down to stress.

I started to drink a lot as I was newly single again, so that took care of the thirst! I remember not feeling too well but as I was partying a lot I would just put it down to hangovers, and the thrush, well, I did not want to see anyone about that... I thought I had caught something and did not want to know. This carried on for about a year or so then levelled out. It just became the normal thing - I stayed slim, didn't exercise and drank heavily.

I had erection problems

Fast forward, I started getting erection problems. Again, I was too embarrassed to see anyone and put it down to the drink. I was having diarrhoea, started losing more weight, feeling very tired. I was always drinking water, my mouth was very dry, I was urinating all the time, I then had a rash start on my legs that did not go away.

I was embarrassed and maybe I did not want to know what was wrong. I then had a boil on my left leg and within a couple of days two more appeared. I was feeling very poorly and couldn't go to work.

Then one day I could not get my breath and an ambulance was called and I was rushed to hospital. It was May 2007 and after about four years of being unwell I was finally diagnosed with Type 1 diabetes.

I stayed in hospital for about three weeks as the infection on my legs had got into my blood so I was put on intravenous antibiotics. I was too ill to live by myself let alone work so my Mum and Dad ordered me to move back home. Dad came to get me and I moved back home at the tender age of 32. I was so skinny at about 9 stone and given I'm 6ft 1, I looked very ill.

My feet had been hurting for about two years, tingling and sore (yes and I still didn't go to the doctor's) and I had been back at my parents for about a week when it hit. My body from head to toe began to hurt, pain like I had never felt before .

I couldn't sleep, couldn't pee, I was constipated and screaming in agony.

I went to my GP who diagnosed me with flu, and told me to take paracetamol. After three days the pain had got worse, so I went back to another doctor and they said it was a reaction to the insulin and to see my diabetic nurse and see if I could get it changed. The pain was so intense I could not wait another day so I went to A&E, had some blood tests and was told that it was my body reacting to the diabetes and I had to deal with it!

After another couple of days of the most unbearable pain, my heart not beating right, my parents called an ambulance and I was taken again to A&E. I had a pain in the side of my stomach so was taken to the surgery ward where they tested for all sorts of things. They talked about operating but then, after deciding they did not know what was wrong, put me onto a general ward.

I couldn't get out of bed

I should say that I now know that I have diabetic autonomic neuropathy, the direct result of not going to see a doctor for many years of feeling poorly. But at this stage, after eight or nine days in hospital, still no mention was made of neuropathy. I had told them all about the numb feet, the burning sensation, the bowel problems, the pain but nobody had a clue. More tests and another couple of weeks in hospital. I started seeing things, all sorts, I was going mad.

I was now bed ridden. 

I had fallen over in the shower and now couldn't walk. My back was numb, my legs were now numb up to my knees, my stomach felt odd and my body was very sensitive to touch.

Finally some doctor mentioned the magic word. I had a nerve biopsy so finally, after six weeks in two different hospitals I was diagnosed with diabetic neuropathy.

At last, I knew what was wrong. I was not a freak and, since neuropathy is not always visible, finally people believed I was ill.

After about a year I was able to move out from my parents but I'm still not able to work. I'm on benefits and take each day as it comes. The illness is so unpredicatable. I spend some time with my nephews, do a little photography...

How has diabetes affected my life? In a word, completely. All because I didn't go to the doctor's. So my message to anyone is don't make my mistake. If you have any of the symptoms, don't be embarrassed. The complications of diabetes are often not visible and are not widely known about or understood. If they were perhaps more people would get themselves checked out.

LADA - not a Soviet-era motor car

Lee has LADA. This is not a dodgy Soviet-era motor but late auto-immune diabetes in adults — a form of type 1 diabetes that comes on slowly.

Natasha Marsland, Care Advisor at leading health charity Diabetes UK, says: 'Typically, the signs and symptoms of Type 1 diabetes are very obvious and will present over a few weeks. It is usually found in under-40s and the peak age of diagnosis is 10-14 years old.

However, some people develop the much rarer late onset Type 1 diabetes, which is clinically known as LADA - a slowly progressing form of Type 1 diabetes which will eventually need to be treated with insulin. Some people will be given insulin as soon as they are diagnosed. LADA can be diagnosed by having a blood test for antibodies (these antibodies attack the insulin producing cells).'