Ali's story: Raising the profile of rare type 3c diabetes

• Diagnosed with type 2 diabetes in 2006 and advised to manage her condition with diet and exercise
• After developing intense back pain a year later, Ali was diagnosed with pancreatic cancer
• Following surgery to remove her pancreas and chemotherapy, she is now cancer free, but lives with type 3c diabetes as a result of her illness
• Ali features in our membership magazine, Balance, to raise awareness of type 3c diabetes from symptoms to diagnosis. Here she tells her story at the Balance photoshoot:

In June 2006, I was feeling a bit under the weather and my GP sent me for a blood test. That came back with high blood glucose levels, which was indicative of type 2 diabetes. We both thought it was weird, because I was 40 years old, had no family history of diabetes and didn’t have any of the risk factors for type 2 diabetes, such as being overweight or having a sedentary lifestyle. I was told that I had to watch my diet, which I thought was quite odd because my diet was pretty good.

A year later, I developed pain in the middle of my back, as though a tennis ball was pressing against my bra strap. When I was eating, I’d experience a gnawing pain as my food went down that would leave me doubled up. I was also losing weight, having intermittent diarrhoea and generally feeling rubbish.

The thing that saved my life was that the pain quickly accelerated in severity. I ended up in A&E with suspected gallstones. When I discovered I needed an ultrasound to confirm that diagnosis, which would take up to six weeks, I was fortunate to be able to use my husband’s private medical insurance to be seen in two days. I wasn’t worried it was anything sinister, I just didn’t think I could cope with the pain for any longer. An emergency ultrasound, followed by a CT scan, found a five centimetre mass on my pancreas. The diabetes I’d been diagnosed with a year earlier was a symptom of pancreatic cancer.

At that time, I knew nothing about pancreatic cancer. I knew I had a pancreas and what it did, but that was the extent of my knowledge. When my surgeon said they were going to operate in a weeks’ time, I didn’t realise that only 8-10 per cent of people with pancreatic cancer are able to have that operation. Afterwards, realising I’d been so fortunate, I made it one of my missions to not just improve the early diagnosis of pancreatic cancer, but also to make sure people got easy-to-understand patient information, because when I had chemotherapy I realised that nobody really tells you the nuts and bolts of it. They skirt around the subject.

The surgeon removed my spleen and 80 per cent of my pancreas, leaving a little bit at the head. I was referred to a consultant endocrinologist, who started me off on tablets to manage my blood sugar levels. Pancreatic cancer has left me with Type 3c diabetes.

When I was diagnosed with pancreatic cancer, it was quite a scary time for my husband and our sons, who were then 14 and 10. They were the age that they knew how to Google and they scared themselves silly. In that situation, there’s nothing you can really do to protect them. I tried to be as positive as possible. My boys both dealt with it in very different ways, because they are very different personalities. One kept it to himself and the other just screamed, and said they didn’t want it to be happening. We decided to be very honest about what was happening. They would know if we were trying to pull the wool over their eyes.

Biggest challenge

My biggest challenge with having diabetes has been finding the time to avoid the spikes in my day. If somebody looked at the output from my blood glucose monitor, they might think, ‘this woman is not managing very well.’ But for me, averaging 10mmol/mol is quite a good day.

I find my type 3c diabetes very tricky to manage, because I’ve got that little bit of pancreas left and sometimes it decides to kick out a bit of insulin and other times, it doesn’t! I have to really watch my levels, so I have a glucose monitor that’s blue-toothed to my phone that lets me know if I’m going low.

I try to carbohydrate count and adjust my insulin dose as much as possible, but I don’t always get it right because I still have a little bit of pancreas that hasn’t completely packed up. It’s still doing some stuff.

I exercise with a personal trainer, which I find can make my blood sugars can go high, but it’s all trial and error.

There’s this perception that I have to have a really strict diet, but my diabetes can’t be controlled purely through diet. Having a healthy diet is helpful, but if I want to have the odd dessert, I can. I just have to adjust my insulin. There’s a lot of ignorance about diabetes generally, and if you say you have type 3, nobody knows what you’re talking about.

I wish I'd know that when I was originally incorrectly diagnosed with type 2 diabetes, it wasn’t diabetes in a normal fashion. It was a symptom of pancreatic cancer.

A few years ago, I was invited to speak at Diabetes UK conference as a case study about type 3c diabetes. Some people – including those in the medical profession - look at me quite strangely when I talk about this type of diabetes, because there are a lot of people who don’t know that it exists.

One of my GPs, who has thankfully now retired, told me I was an attention seeker and that I was making up my own type of diabetes! I was so cross that I asked my consultant to write him a letter, because I wanted him to be aware of the facts if he was potentially treating people with this condition.

We need to raise the profile, because almost 50 per cent of cases of type 2 diabetes could actually be a form of type 3c.