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Diagnosis

Knowing where to start with your diagnosis of diabetes can be a challenge. But it’s not a challenge you have to face alone. Here we share stories from people who recall how they came to terms with their diagnosis and adjusted to life with diabetes.

Katie and her diabetes team

When it all started

Diabetes wasn’t something that had ever been on my radar, until my second pregnancy changed that.

My first pregnancy in 2016 was straightforward. However, when I was pregnant again in 2023, I went for a routine appointment at 24 weeks at St Marys Hospital in Manchester and was told that there was glucose in my urine sample. 

This led to my midwife referring me for a gestational diabetes test. I remember getting the results and being told my blood sugars were really high, but at that point I didn't understand what that meant or the implications.

I quickly saw a dietitian and, at first, was told to manage my blood sugars with my diet, but despite being extremely strict with what I was eating my blood sugars were still very high. Shortly after this, I was started on insulin injections. A consultant then asked if she could run some tests for type 1 diabetes.

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Finding out I was in the early stages of type 1 diabetes

During my first pregnancy in 2020, I had routine screening for gestational diabetes which caught high blood sugar levels. My doctors decided to investigate further and tested me for type 1 diabetes autoantibodies.

What are type 1 diabetes autoantibodies?

Autoantibodies are proteins used by the immune system to attack insulin-producing cells. A blood test can detect if someone has autoantibodies, and how many. When there are two or more autoantibodies, the immune system’s destruction of beta cells has already started, and it’s almost certain someone will fully develop type 1 diabetes in their lifetime. This hidden phase – before symptoms appear or insulin treatment is needed – is called early-stage type 1 diabetes.

The results showed I had two autoantibodies. The doctors explained this meant I was very likely to progress to a full type 1 diabetes diagnosis at some point. But they couldn’t tell me whether that would happen in six months or 10 years.

It was a huge shock – I hadn’t expected anything to come from that test.

The uncertainty was the part I found most stressful. I didn’t know what was happening underneath the surface. I’m still trying to get my head around the fact that type 1 diabetes will eventually happen.

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A complex condition with multiple risk factors

In 2000, I was diagnosed with gestational diabetes while expecting my third child. My diagnosis was towards the end of my pregnancy, and then my glucose levels returned to normal after my baby was born, so I didn’t have any further symptoms of diabetes. 

Then about 10 years ago, following a visit to the doctor and some blood tests, I was told I had type 2 diabetes, and I’ve been trying to manage my condition since then.

My clinicians advised me to try to lose some weight to help manage my diabetes, but not long after I was also diagnosed with an underactive thyroid. 

That’s made losing weight really difficult, and honestly, it can be quite frustrating. I’ve learned that managing diabetes isn’t as simple as ‘eat this, don’t eat that’ or ‘just lose a few pounds.’ There are often other health issues going on that make things more complicated. Type 2 diabetes is a complex condition with multiple risk factors.

Understanding how my thyroid affects my metabolism has helped me see things differently and be a bit kinder to myself. Everyone’s experience with diabetes is unique, and it’s so important to remember that – there’s no one-size-fits-all approach. A little more understanding and less judgment can go a long way.

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Diagnosis

In December 2022, whilst studying at university, I was diagnosed with type 1 diabetes at age 18.

A couple of months prior to my diagnosis, I experienced a few symptoms and I remember being out for a meal with my flatmates and just feeling very unwell. I was nauseous, had no energy and just feeling very tired. My symptoms continued for well over a week, so I went home to my parents.

At home the out-of-hours advice line said that it was probably dehydration and exhaustion, but I was getting worse, so my mum booked an emergency doctors appointment. As soon as I went in, the doctor wanted to check my blood sugar levels which were too high for the meter to read, so he got me to do the ketone urine test and that was really high too, so I was sent off to the hospital and later that day I was diagnosed with type 1 diabetes.

My diagnosis was a massive shock. I had no idea it would be something as serious as diabetes, and I don’t really remember much during the four days I spent in hospital. Whilst in hospital I was given some information, but I also went onto Instagram to find others with the same diagnosis to see how they were dealing with it, which was really useful and by the time I left hospital I had created my own Instagram account so that I could follow them and also share my own experiences of living with type 1 diabetes.

I’ve found writing and sharing things online to be a good outlet for me to process things.

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Abeeda

My symptoms caused great worry but also denial

My diagnosis period was an extremely difficult time in my life. While I was 17 when diagnosed, I already had impaired glucose regulation – also known as prediabetes, or higher than normal glucose levels – from 13 years of age. Physically, I remember the symptoms – feeling constantly thirsty, exhausted, and needing to use the bathroom often. 

The thirst was unimaginable – no matter how much water I drank, it never went away. I had been experiencing symptoms for at least a year before my official diagnosis, but felt too scared to face the truth. Deep down, I knew it was diabetes, yet the fear and denial kept me from going to the GP. 

"I avoided seeking help initially because I didn’t feel ready to deal with the reality of it, which meant I lived with these symptoms far longer than I should have."

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