Graham's story: my experience living with LADA, or type 1.5 diabetes

• Twin brother diagnosed with type 1 aged 15 
• Graham diagnosed wrongly with type 2 in 1999. 
• Found out four years later he had LADA or Type 1.5
• Uses exercise, diet and medication for blood sugar control

My twin brother and type 1 diabetes

“You are diabetic aren’t you?” The words both sounded accusatory and slightly threatening in tone. But how could I have known? I had none of the classic symptoms that my twin brother had experienced.

Twenty years earlier my at the age of 15 my brother had come back from a Brass band tour of Canada. He had been away for three weeks so my mother could clearly see the weight loss and suspected it might be diabetes. I have to confess I hadn’t noticed, other than finding it strange my brother was suggesting we go halves on a crate of soft drinks. But then none of us knew what diabetes was or its impact or indeed knew anyone who suffered from the condition. He had to go straight into hospital and I remember being really scared for him, being twins we were really close, but in a few days he was back home. 

It affected him most of course, particularly at first, his regular hypos that seemed to control his life, and the inflexibility of it all. Back in those days there was no human synthetic insulin. It was pig’s insulin that kept him alive. Before each meal he would draw up the insulin from a vial into a heavy metal and glass syringe which had to be cleaned before every injection. I remember him occasionally dropping it into the sink where it would shatter into small shards of glass and he would have to start all over again with a new one.

It was hard on my mum, she had a steep learning curve, what he could and could not eat, the weighing out of all his food and new low sugar and carb recipes to manage his condition. I remember on one occasion my parents went out and I was tasked to cook his dinner. By the time I had prepared it my brother’s sugar was already low.

He told me in no uncertain terms “I’m not eating that, its disgusting” so, in a panic, I had to start again. By the time my parents got home the kitchen was in real mess with discarded pots and pans everywhere. I was told off. It felt really unjust, but at least my brother’s sugars were back under control.

We didn’t always get it right of course but as a family we gradually learned to adapt to our new routine. Mum tended to fuss too much as mother’s do and eventually my brother told her to let him get on with it – he said he had to live with diabetes so he had to learn to manage his condition on his own. And so he did, going off to University and coping with both his new life and diabetes less than 3 years after diagnosis.

Not long after my brother’s diagnosis we were contacted by Kings Hospital in Denmark Hill. They were interested in undertaking tests on us to help with their research. Having one twin with diabetes and one without was gold dust for medical research.

One day a ruddy cheeked Dr. Brown came to our house to take blood samples. After this we had almost annual trips to London, initially to Kings on Denmark Hill then later at Barts, Spitalfields with Professor Lesley. I remember the early tests involved glucose tolerance, swallowing a couple of litres of sugary solution in one go then feeling the heat of it as it spread around my body. They would then take blood at regular intervals for the next few hours to see how my body responded.  

Once my brother was diagnosed the doctors gave me no more than even chances of avoiding diabetes. But, as the years went by. the odds gradually started working in my favour to the point where I was no likely to develop the condition than the general population. 

It came as a bit of a surprise in 1999, during a regular check-up that the doctor so bluntly had told me I had diabetes. By now I had a pretty good understanding of diabetes so I wasn’t especially worried by the news. My major concern was whether I would have to go into hospital like my brother, but no, I was diagnosed with Type 2, prescribed Gliclazide and a controlled diet.

Four years after my diagnosis Barts got in touch with me. They weren’t aware that I had been diagnosed so I assumed they wouldn’t be interested in me now that I had diabetes but in reality the reverse was true.

It turned out I didn’t really fit the profile for either Type 1 or 2. Unlike my brother I didn’t exhibit the rapid decline in insulin production fount in Type 1. Nor did I fit the typical Type 2 profile as I have always been pretty slim.  Professor Lesley at explained that there was a new theory of a third type of diabetes that hadn’t been previously identified known as LADA which stands for Latent Autoimmune Diabetes of Adulthood or unofficially known as type 1.5.  

I explained that I hadn’t been feeling that well. Six months previously In 2003 I had just taken part in a long distance bike race in Yorkshire. I felt like I had developed flu at this time which didn’t go away and the Doctor suspected I had chronic fatigue. Three months later I was still unwell and it wasn’t clear whether the diagnosis was correct or whether it was related to my diabetes.

We tried changing my tablets and putting me on insulin – it didn’t make an instant difference but gradually I got better, I started to have more energy and I returned to normal health.

One thing I have found through experience with having diabetes is that my medication has had to be regularly reviewed. Things remain stable for a while and then, as my pancreas has become less effective over time, my medication has become less able to bridge the gap. I feel more fatigued and I have to change my insulin or meds accordingly.

I currently control my sugar levels through a combination of tablets (metformin), long acting insulin (Tresiba) and a small amount of short acting insulin (Nova Rapid) with my evening meal. I take the same dosage every day and only change this following consultation with my doctor.

The plus side is that, unlike my brother, my hypos are much more predictable and infrequent and so in many ways my diabetes is less invasive overall.

The flip side is that unlike Type 1 diabetes I don’t have the opportunity to adjust my medication according to my sugar levels and my food consumption. Testing blood sugars can be stressful as if my sugars are high there is little I can do about it other than feeling guilty. As a result I probably don’t test as often as I should.

The other downside I find is the lack of flexibility. I need to eat regular meals and I can’t eat late or skip meals if I am not feeling hungry. If I want to go and see a film after work it can be tricky, is there time to eat before-hand, will eating after be too late?

I still enjoy riding my bike and competitive cycling and can honestly say I don’t feel diabetes stops me doing anything in my life. Being diabetic has become part of who I am, part of my identity and I feel a sense of pride in living a normal life, and achieving the things I want to, despite having the condition.