Being diagnosed with type 3c diabetes: Milesh's story

My diabetes journey started back in 2013, when I developed pancreatitis and ended up spending five months in hospital. This meant my wife was at home with my two-year-old son and my little girl, who was only three weeks old at the time. Luckily my parents are local, so they moved in with my wife to help her out, but it was a hard time for all of us.   
 
When I left hospital after the five months, the doctor told me he was surprised I was leaving without diabetes and that it would probably just be a matter of time before I developed it. I already knew that with being from a South Asian background and having a family history of the condition, that I was at higher risk. I was treated with insulin in hospital but discharged without any medication.

It was three years later in 2016 that I started to develop symptoms and received my type 2 diagnosis. I was on a family holiday and seemed to be drinking an unbelievable amount, constantly needing the toilet, and generally feeling lethargic. I thought it might be a urine infection, so visited the nurse at my GP practice. She decided to test my HbA1c and from there I was diagnosed with type 2. At this point I was told it was reversable and was sure I would be able to manage this with diet and exercise, and hopefully put my diabetes into remission. I felt really determined to fight this.  

Looking back, in the year leading up to my diagnosis I probably hadn’t been taking as good care of myself as I should’ve been.  
 
I knew I needed to make big changes to my lifestyle, both in terms of my diet and exercise. Previously I had eaten a lot of curry (with potatoes), white rice, and chapatis. This became a treat when I realised how many carbs I was consuming. I started to eat a lot more salad and vegetables, Quorn, and soya. I also reduced things like chocolate, crisps, and alcohol. In fact, I probably ate more salad in two years than I had in the rest of my life. My exercise also increased massively. I took on the London to Brighton cycle ride, started playing football and badminton, as well as walking.  

However, these changes didn’t seem to work and in 2019 I was put on insulin as well as Metformin, which was a real blow. I kept questioning if this was right, as I seemed to be making such little progress. I was having symptoms of high blood glucose levels, so it felt like the medication I was on was no longer effective.

In 2021 I ended up back in hospital with a pseudocyst - a fluid-filled sac in the abdomen that arises from the pancreas. It was then that I had further tests, which led to me being diagnosed with type 3c diabetes. To be honest, this was initially a huge relief. It all finally made sense. However, I was then told I would need to be on insulin for the rest of my life, which was really tough to swallow. I’m now on long-acting insulin in the morning and rapid acting insulin with every meal. I also have to carb count.  

My hospital team were amazing – and still are. I have a number of face-to-face appointments each year, one being with the consultant. Prior to this my care was managed by the nurse at my GP surgery, but she has no knowledge of type 3c diabetes. To be honest, I dread the day I’ll be released back to the GP, as doctors just don’t seem to have enough specialist knowledge about type 3c and other types of diabetes. I think there’s not enough awareness of the condition in general. Perhaps this is because there are such a small number of people living with it, so it’s up to those of us that have it to shout about it.   

My diabetes nurse (at the hospital) and dietician have been hugely supportive. I have to limit my alcohol intake, which at times I find hard, especially during the summer or if there are weddings or social gatherings I’m going to. Having been back in hospital earlier this year, as my pseudocyst had got bigger, my consultant reiterated the impact of alcohol, so now I do not drink alcohol at all. Both the diabetes nurse and dietician understand the type of food me and my family eat, and help me with meal plans, so that I have healthy alternatives. The dietician also invited me on a carb counting workshop she was running. What I appreciate is that she is really clear on messaging. I will come off a Zoom call with her and it might not be what I want to hear but it’s what I need to hear.  

Type 3c is caused by other conditions which can include pancreatitis, pancreatic cancer, cystic fibrosis or haemochromatosis and develops because of damage to the pancreas. Find out more about type 3c here.

Managing mental wellbeing

My wife has been a massive support. She kept our family together when I was first unwell. She just went into practical mode and her strength was next level. She really helped me to make the changes I needed for my health. 

I left my job in 2016 and had a career change. I now work in property development, which has enabled to me prioritise my health, and get more of a work-life balance. The mindset shift has been phenomenal. I think my diagnosis was the wake-up call I needed.

"There was no destination in the sat nav before I became unwell. I was working really hard but with no end game. This has now changed, and I am living life more on my terms."

I was previously the chair of governors at my children’s school and currently work with local schools to give talks to children about running a business. I’m keen to start giving talks about my experience of diabetes, too. I really want to give back. The impact all of this change has had on my mental health has been immense.  

I did the One Million Step challenge last year and it became a bit of a family affair. My children, who are now eleven and nine, did a million steps between them, and my parents got involved too. I do enjoy the challenge and it’s good to have a goal and something to motivate you. I enjoyed it so much I signed up again this year, as has my wife, sister, and brother. We will be doing the London Bridges Challenge at the end of September as well, as a family. I also did the London to Brighton cycle ride, which I loved and managed to raise over £2,000.  

My daughter comes for walks with me to get our steps up, which is really nice. Both my children have an awareness of my diabetes and will frequently check in to make sure I’ve taken my insulin. I think my diabetes has had an impact on those around me. My family have also made lifestyle changes, as they know how important it is. 

Advice for others

Living with diabetes needs constant attention – it’s a 24-hour a day condition and there’s no getting away from that. You also need to take your diagnosis seriously, as if you don’t then you put yourself at risk of complications.  

A lot of mental energy is taken up thinking about what you can and can’t eat. However, my message for others, especially those wanting to make changes to their diet and lifestyle, would just be to keep going. You are bound to have rough days. Sometimes you wake up and just want to be able to eat and drink whatever you want, and not worry about anything. But consistency is really important – if you have a wobble with food that’s ok, just get back on track.  

I feel in a good place now and my hope for the future is to stay healthy and raise greater awareness of type 3c, so more people understand the condition.