Katie’s story: My early-stage type 1 diabetes blessed me with extra time to prepare and to receive teplizumab

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.

When the results came back, they showed I had four different autoantibodies for type 1 diabetes. My consultant explained these autoantibodies showed my immune system was attacking my pancreas, and were a sign I was in the early stages of developing type 1 diabetes.

The diabetes team weren't sure what would happen after I gave birth – whether I’d officially have type 1 diabetes and need to stay on insulin, or whether my blood sugars would stabilise and I would have a bit of time before becoming insulin dependent.

After my daughter, Maisie, was born, my blood sugars went back to normal, and I stopped needing insulin therapy. That was such a relief.

My doctor asked me if I wanted to continue using a continuous glucose monitor and I chose to do so. Whilst some people may not want to have access to that kind of data, I was keen to understand what was going on in my body and be aware of the inevitable changes happening.

Over the next year, my readings slowly started to change. My time in range dropped, and my HbA1c crept up. This was a sign that my pancreas was producing less insulin and I was told I was now in stage 2 of early type 1 diabetes.

That’s when my consultant, Dr Schofield at the Manchester Royal Infirmary, mentioned a treatment called teplizumab. Dr Schofield explained that this treatment could extend the amount of time I had before becoming insulin dependent, by targeting the immune system, stopping it from attacking my insulin-producing cells for a while.

I was really keen to continue living my life as I was doing, without insulin, for as long as possible. I did my own research, and Dr Schofield put me in touch with a professor in Birmingham who’s a leading researcher on early-stage type 1 diabetes. He told me that if his own child were developing type 1, he’d want them to have teplizumab. That really reassured me.

I knew my blood sugars were rising and was told that I would soon be dependent on insulin to manage them. The window to have the treatment was closing fast, so I decided to go ahead.

Starting treatment

I had the treatment at Manchester Royal Infirmary in September 2025. Teplizumab is given as an infusion, ideally over 14 consecutive days. The team looking after me were amazing. I cannot thank them enough. They worked tirelessly, not only to ensure that the whole process ran smoothly and safely, but to get to know me and ensure that I felt comfortable.

This was invaluable as the treatment course wasn’t all plain sailing. On the second day I had a fever, and on day three my blood pressure dropped suddenly, and I fainted. I was diagnosed with cytokine release syndrome, which is a known side effect of treatments like teplizumab. 

It was scary and I remember thinking at the time, “What have I put myself through?” but the team were brilliant and managed it straight away. I felt unwell with a fever and extreme fatigue for a couple more days which meant my treatment had to be paused on day six.

However, after that, the rest of the treatment went much more smoothly. By the final week, I was working remotely from the hospital during the day and feeling completely fine. It really was a rollercoaster, but I’m so glad that I did it.

Within two weeks of finishing the treatment, I started seeing changes in the readings from my continuous glucose monitor. With some small tweaks to my diet, my time in range has jumped from 70% to 95%, and my blood sugars aren’t spiking as frequently or for as long after meals.

I feel very lucky to have been given the opportunity to receive teplizumab, as I know only three adults in the UK have received it so far. I’m incredibly grateful to the amazing team at the Manchester Royal Infirmary that made this a possibility for me.

My hopes now are to avoid insulin therapy for as long as possible. It will be interesting to see how long I am blessed with this additional insulin-free time, which I am not taking for granted. I will try and utilise this by sharing my experiences. Hopefully, I can help others who find themselves in the same position as I was.

I understand that some people would prefer to get on with life and wouldn’t want the anxiety of knowing that they are developing type 1 diabetes. However, having had my type 1 diabetes uncovered at an early stage, I have been blessed with extra time to learn, prepare, and try to understand what being insulin dependent will mean.

I really cannot imagine how overwhelming it must be for someone to suddenly be told that they have ‘full’ type 1 diabetes. Their whole life will have changed in an instant and, whilst trying to process this, they need to also immediately adapt to a life of insulin therapy. It must be hard enough to navigate this as an adult; I can't even begin to imagine the stress that it must bring to parents of young children who are diagnosed.

Thanks to the ELSA study, my eldest daughter has already been tested for the type 1 diabetes autoantibodies, and thankfully she doesn’t have any. I’ll get my youngest tested once she’s old enough. If teplizumab becomes available for children on the NHS, I’d absolutely want them to have it if they needed it.

Changing my perspective

Before my diagnosis, I’m embarrassed to say, I didn’t understand diabetes at all. All I knew is that it was something to do with blood sugar. I didn’t know there were different types, or that type 1 is an autoimmune condition.

This whole experience has completely changed my perspective. It’s made me realise how much stigma and misunderstanding there still is in relation to diabetes. People don’t see the mental and physical load of living with an autoimmune condition and that must really chip away at those living with it.

It became clear to me very quickly that there is an amazing diabetes community out there that supports, listens, educates and uplifts each other.