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Diabetes type 1 (young people)

Symptoms of Type 1 diabetes

Type 1 diabetes tends to start when people are under 25, although it can be diagnosed later in life. With Type 1 diabetes (also called insulin-dependent or juvenile diabetes) the body's immune system destroys, or attempts to destroy, the cells in the pancreas that produce insulin. Insulin is the hormone that allows glucose to enter the cells of the body to provide fuel. When glucose can't enter the cells, it builds up in the blood and the body's cells literally starve to death. Everyone with Type 1 diabetes must take daily insulin injections and regularly monitor their blood glucose levels. The cause of Type 1 diabetes is unknown but it is thought to be an autoimmune disease, where the body's immune system destroys the cells in the pancreas that produce insulin. 

Not all diabetes in children and teenagers is the kind called Type 1. Type 2 diabetes is being seen increasingly in young people. Where Type 1 diabetes always requires insulin, Type 2 can require insulin but often it can be treated with other medicines such as tablets. This section deals only with young people who have Type 1 diabetes.

We have talked to a range of young people who've lived with Type 1 diabetes from those who were very young when they were first diagnosed to those who were diagnosed when they were teenagers. We have also talked to some young people only recently diagnosed. In this section young people talk about the signs and symptoms that prompted them to seek medical help. 

Signs of diabetes

Most people remembered that the first symptoms of diabetes had crept up on them over weeks or even months- most had felt thirsty all the time and said that they started to drink more and more and found that they were unable to quench their thirst. Lots of people described realising something must be wrong with them because they needed to go to the loo all the time. Some said that they had started to wet the bed. Losing weight quickly was another sign to some young people that something might be wrong, while others had noticed feeling unusually tired and thought they must be 'run down'. Genital itching or regular episodes of thrush and slow healing of cuts and wounds could be other symptoms. Some symptoms could be more dramatic - several people had experienced blurred vision.

Some of the young people were too young when diagnosed to remember much about their early symptoms.

 

She was thirsty all the time and felt run down.

She was thirsty all the time and felt run down.

Age at interview: 17
Sex: Female
Age at diagnosis: 12
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I was diagnosed when I was twelve. That was because I was feeling really run down, and thirsty - I was getting up in the night and drinking, and - at school I was like more noticeable because I was drinking like instead of one bottle a day I was drinking two bottles of mineral water and it was just odd, Mum noticed it. It was on my birthday actually [laughs], and she was like, 'Well I think you've probably got diabetes', because she's a nurse, and then I was like, okay. So we went to the doctors and they did a test, and on that exact day I went - they like sent me to hospital because they obviously found blood not blood, urine had sugar in, and went to hospital, they gave me tests, and within a few hours they sat me down in a room and said, 'Oh you've got it'. I was like okay. I remember just sitting there and thinking - I didn't want to, like, speak or anything, and they were like, 'You can cry you know,' and then - it wasn't a sad thing but - because I had so many people around me, and helping.

 

She was 17 when she started to feel unwell and explains how she noticed her vision was blurred...

She was 17 when she started to feel unwell and explains how she noticed her vision was blurred...

Age at interview: 19
Sex: Female
Age at diagnosis: 17
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I was seventeen and half. I was going from lower sixth to upper sixth. It was during my summer holidays so I was really thirsty, had no energy. But I brought that down to it's summer, so obviously, it's a lot hotter so I'm going to be really thirsty. But then I needed to go to toilet like very frequently. And it got to the very end where I went to Thorpe Park the queues were like massive and I just couldn't queue for the rides because my bladder just wouldn't let me. 

So yeah my thirst, I'd drink a bottle of water and that wouldn't quench at all. And then I frequently go to the toilet. 

One of the main things was my eye sight went funny. When I was on my driving lessons, I couldn't see ahead of me. I couldn't read the registration plate and that's when my driving instructor said that I should get my eyes tested. So I did. But I went to not like a professional opticians, I went to what do you call it, opticians [name], and they checked my eyes and thought that I was long sighted. So they took, so I got a pair of glasses and everything and that. So I thought that was fine. I'd never had problems with my eyes before, but I thought, it's one of those things. What else was wrong with me? Just very tired and I felt quite lazy really, that I really couldn't do much, getting out of bed was quite hard. And so my mum said lets go to the doctors. So I thought, 'Right, I'll go to the doctor's'. I got my bike and I got to the end of road and I had to get off because I was so tired and that's not like me. So I went to the doctor and just said have a blood test and come back to me. But by that point, my boyfriend at the time, spoke to my mum, and just said, 'Like serious, [mother's name] she doesn't stop running to the toilet'. 'She's very thirsty'. 

I had like all ulcers in my mouth and just generally very dry. And my mum's a nurse and she came home because she was a bit worried. And she tested my urine and she found I had ketones in it.
 
Other less common symptoms included fainting, headaches, nose bleeds and mouth ulcers. In one case a young woman thought she had no symptoms, other than feeling extremely tired all the time, and it was just by chance that her diabetes was diagnosed.
 

She feels lucky to have been diagnosed with diabetes because she didn't have any of the 'classic'...

She feels lucky to have been diagnosed with diabetes because she didn't have any of the 'classic'...

Age at interview: 25
Sex: Female
Age at diagnosis: 24
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It was quite, well, it was quite lucky I suppose the way that I came to be diagnosed with diabetes, because I'd been living, I'd been living up in [city] and I moved down to [city] for a new job. And I'd been here a couple of months before I got round to registering with a, with a doctor because, you know I didn't feel that I needed to. But I thought, 'Oh, yes, I'll register with a doctor'. And so I went and as part of the registration process they do a series of tests and you have to take a urine sample along with you. And so I was doing, you know, I was having a chat with the nurse, and then she said, 'Oh, I'm just going to go and check this'. And then she came back and I could see she just looked a bit concerned and she said, 'Have you been ill recently?' And I said, 'No'. She said, 'Have you had any symptoms?' And I just kind of thought, 'Symptoms of what?' And I was like, 'Well' I said, 'Well, I've been quite tired, but I just, I mean I'm a journalist and that kind of just comes with the job. And moving to a new house, moving to a new job and everything else, that goes with that really'. 

And she said that there was some sugar in the sample or, you know, or words to that effect, and could I go back for a blood test at 9 o'clock in the morning the next day? And she said, she was really nice, she said, 'Oh, you know, it's not because it's urgent. It's just so, you know, we get it out of the way so that you don't worry about it'. Although looking back I think it's because, you know, it was urgent. She just didn't want to worry me with it. So I had a fasting blood test and they said that they'd phone back the next day if, you know, if it was found that I did have diabetes. 
Tests for diabetes

Most young people said they had been diagnosed fairly quickly following a simple urine or blood test at the doctor's. In one case the diagnosis was delayed by a few months because the GP thought it was stress - and in fact several teenagers interpreted their tiredness as stress due to school work and so didn't immediately seek help. One girl, diagnosed when she was seven, said that her father (who also had Type 1 diabetes) spotted her symptoms, used his own blood glucose meter to test her blood glucose level and took her straight to hospital. One woman needed a more complex test called 'oral glucose tolerance test' because her blood glucose level was borderline.
 

His mother took him to the hospital and he was diagnosed about 15 minutes after the blood test.

His mother took him to the hospital and he was diagnosed about 15 minutes after the blood test.

Age at interview: 16
Sex: Male
Age at diagnosis: 9
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When I was nine and a half years old I experienced frequent urination and I was really thirsty. I'd be running back home from school going straight to the kitchen to drink a lot, two or three cups as soon as I got home. And I was also wetting the bed really often and after a week of this happening my mum got concerned so we went to the hospital and we told them what was happening and they said they needed to take a blood sample to analyse. After about 15 minutes they came back and they said I needed to see the doctor to explain what were the results. And they said that I was, had high amounts of sugar in my blood, I was, had ketones and they said these were symptoms of diabetes. And this didn't come as a shock to me because I'd no idea what diabetes was and they, he explained the whole situation and explained what I needed and strangely I really you know, wasn't surprised. I didn't think of what this had, how this would affect my life at all. 

He explained that I'd have to take injections and luckily enough I wasn't a squeamish person and just the, you know, he was very nice in the whole, on letting me know how to do this and asked me frequently how I felt and it was really it was, he comforted me. Which is really important I think at that stage. 
 
 

He felt thirsty for six months, lost lots of weight and felt very tired but says that at first...

He felt thirsty for six months, lost lots of weight and felt very tired but says that at first...

Age at interview: 19
Sex: Male
Age at diagnosis: 13
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Ok how old were you when you were diagnosed with having diabetes?

I was thirteen.

What type of signs and symptoms did you have?

I was very thirsty. I had lost a lot of weight. And I felt very, very tired all the time and I really didn't feel as though I was up to doing anything, you know. I just wanted to be in bed or just sit on the sofa and not go out. And that probably lasted for about six months. Going to the doctor quite regularly but they didn't actually pick it up until one of the later visits where they did a, a urine test. And that's when they knew I was diabetic. And they, he telephoned us and basically said sort of pack your things and go get ready to go to the hospital. 

And that night me and my dad went to the hospital. And I was in there for about a week or so while they were obviously monitoring my blood sugar very regularly, sort of eight times a day, taking urine samples, and I felt a lot better very quickly.

And during those six months that you, that you kept going to the doctor what was the doctor's response and what were they saying to you?

They, I think they put it down to stress or something, something like that, and I think we were presenting with all the symptoms. We certainly let them know that I was very thirsty and they could see that I was obviously very, very skinny for my age. Unfortunately they just, they just missed it on quite a few occasions but I went to see a different, it was actually a different doctor's surgery and they picked it up on the first visit there. Did a urine test and then they said, 'Yeah it definitely is diabetes'.

What would you advise other young people that might have similar signs or symptoms like that?

I think if you think you've got diabetes bring it up with your doctor and say could it be diabetes? Because it may just be [sigh] they've had a hard day and they're not putting two and two together properly. If you bring it up and say is it diabetes, you know, if you really think it is say, 'Test me for it'. It's not difficult to test for at all.

A simple urine test can'?

A urine test will tell you definitely or I mean even a blood sugar test like I've just done would if it's very high it's going to tell you straight away it's diabetes.
 
In the case of twin brothers, one of them was diagnosed with Type 1 diabetes three months after his brother. Both twins knew about symptoms but only the one diagnosed earlier experienced them. Doctors told the parents that there was a 60 per cent chance that the other twin would develop diabetes and tested him for it.
 

His twin brother was diagnosed with Type 1 diabetes three months earlier so doctors tested him...

His twin brother was diagnosed with Type 1 diabetes three months earlier so doctors tested him...

Age at interview: 18
Sex: Male
Age at diagnosis: 9
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Interviewee 1' Well we were diagnosed when we were nine, I was diagnosed first just before Easter. The doctors had they were curious as to whether [my brother] would be diagnosed because it was different for twins. And so they ran some tests and about four months later.

Interviewee 2' Three months.

Interviewee 1' Three months later [my brother] was diagnosed a diabetic. When I was first diagnosed they, the, I went to the GP's office and they run a blood test on me. And my blood sugar was above 44. And so they got me straight into the hospital for three days.

So that they could control it and show me how to inject and everything. Straight away I was put on two injections, two injections per day. But I just couldn't inject myself at first so I had to get my mum to do it.

Did you have any symptoms?

Interviewee 2' No, I didn't have any symptoms. With a twin, it's a 60% chance that if one's diagnosed the other will be. So they just decided they'd test me before the symptoms started.

Interviewee 1' Yeah, they caught [my brother] early on. But, if I'm going to speak frankly I was very thirsty all the time, I wet the bed quite a lot I just needed the toilet, needed a drink all the time and so my mum thought it might be a bladder or kidney infection or problem so she took me to the GPs office and they ran a blood test and found out that I was diabetic. 

OK.

Interviewee 2' Which we weren't expecting, obviously.

Interviewee 1' Yeah.

You weren't?

Interviewee 2' No.

Interviewee 1' It was a bit of a shock. My mum said it had crossed her mind but otherwise she didn't really think much of it. But it was a bit of a body blow, I think.
 
Hearing the news

Young people were told about their diabetes by the GP, by the diabetes nurse or the hospital doctor. On hearing the diagnosis most young people described their first reaction 'as a shock'. Many felt upset and sad, and some remembered bursting into tears when they first heard the diagnosis. Others asked themselves 'why me' and felt it was unfair. Those who were diagnosed as children don't remember any reaction and said that they have grown up with diabetes, that it is part of their lives. Some young people indicated that to be diagnosed in your early teens could affect your confidence, that it could make you a 'bit quiet' for a while.
 

She was rushed to hospital by the school nurse. She felt shocked and sad when she was told she had diabetes.

She was rushed to hospital by the school nurse. She felt shocked and sad when she was told she had diabetes.

Age at interview: 21
Sex: Female
Age at diagnosis: 15
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Well I got diagnosed when I was sixteen. I reckon I'd been having the symptoms probably for about a month, maybe probably just over a month. I got it in January, I got diagnosed in January and I'd had a cold at the end of the term, Autumn term, at school, and it just developed I guess. I had got over my cold but I stayed really thirsty all holidays. I know noticed that I was really thirsty and I was getting worse and worse and needing the loo all the time. And because it was quite gradual, I didn't really notice the change. I just thought, 'Oh I'd never got over this cold', although obviously, it's not symptoms of a cold at all. 

So I got back to school a few weeks into term, it, I was still so abnormally thirsty. And I eventually went to see the school nurse and she did a few tests. Had to pee into a glass, which I found really embarrassing. That is all I did actually. She then sent me back to my lessons. And an hour or so later, the school secretary came running in, saying, 'Go down to the nurse's, to the van they want to take you to hospital'. And they wouldn't tell me why and I was terrified and whole classroom was like, 'What's happened?'

So I got taken down to the, the doctor's clinic in town, by the school nurse, who although she told me that she knew, she probably knew what is was, she wouldn't tell me anything. So I was really scared.  

And I got to the doctor's surgery and I had to do some more tests, wee again in a pot and they did a blood test. And then they came and told me that I had diabetes. 

It was a massive shock to me. I had, I knew nothing about diabetes at all, so it was big' I just didn't really know. I was just suddenly like what is it? And I burst out crying. And I couldn't get hold of my parents, so I felt kind of pretty lonely, I guess. The only thing, when they told me that I had diabetes the only thing that flashed into my mind was, some person or neighbour years ago who had diabetes, and that was all, that was the only connection I could make and I remember for her it was this terrible, terrible thing. But it really isn't as bad as I initially thought.
 
 

She was diagnosed with Type 1 diabetes at the age of two and says that she has never known...

She was diagnosed with Type 1 diabetes at the age of two and says that she has never known...

Age at interview: 20
Sex: Female
Age at diagnosis: 2
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Yes, well, I was diagnosed when I was 2. So I've never known anything like really different other than being diabetic. So I guess I kind of accepted it as part of who I am and I never had an issue with it when I was younger. Like initially of course my parents like were like completely controlling it. But they taught me early on to do my injections and apparently I did my own injections by the age of 4. And like, yes, gradually as I grew older I took more and more control of it myself. I think because there was never a major issue made of it I didn't feel that being diabetic made me any different or that it was a restriction on me or a problem. I just kind of got on with it.

 

After his diagnosis he became a bit shy and lacking in confidence.

After his diagnosis he became a bit shy and lacking in confidence.

Age at interview: 19
Sex: Male
Age at diagnosis: 14
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And how much did you know about diabetes at that point?

Before, I knew nothing about diabetes. I'd heard of it and heard that people had to inject everyday, but I didn't know what it was that they were injecting or how diet was controlled and stuff. I'd heard about a few footballers and sort of celebrities and stuff with diabetes. But'

And how did you feel at that stage, having developed this thing called diabetes?

Kind of strange, yeah, because I haven't known anybody close, or anything, who'd had it before, so it was all kind of new, but I wasn't worried, like, at all. It hadn't - it knocked my confidence slightly for a while, not noticeably, but when I look back on things I realise that had I not had diabetes I might have been a bit more confident, and now, sort of five years on really, it's not that factor at all. I just sort of - in a way it doesn't bother me that much. Sometimes I nearly forget injections, because I don't worry about it. Injections is just one little thing to me, so it's no kind of problem.

You said that it affected your confidence a little bit?

Yeah.

Can you tell me more about it?

Just meeting new people, stuff like that. I wouldn't be very forthright and outgoing too much, and also I play a lot of sport and I used to be very vocal on the pitch and stuff - playing football, and I'd be a little bit quieter and just generally things like that. Just, I became a bit more quiet as a person really, than I was before. But I've probably regained all that confidence now, but for the first two years it was a bit - yeah - a lot quieter.

Many said they felt reassured to be told straightaway that the diabetes was not their fault, that they hadn't done anything wrong. For other young people the diagnosis came as a relief because they said that at last they understood what was making them feel so poorly.

 

After he was started on insulin it was such a relief to stopped feeling poorly that he didn't...

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After he was started on insulin it was such a relief to stopped feeling poorly that he didn't...

Age at interview: 26
Sex: Male
Age at diagnosis: 18
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I was diagnosed at the age of 18, and it was just a couple of weeks before my A Levels started, so it was a bit of a shock at the time. It wasn't the best timing for it really. What happened was I was feeling really quite tired at school and getting thirsty a lot. And one day I got up in the morning and my mum decided I looked absolutely awful, and instead of sending me off to school she dragged me to the doctor's instead.

When you say that you were feeling awful, can you tell me more about it?

Yes, it was, it was mainly just, before I was diagnosed it was just an incredible degree of tiredness really. I'd kind of go to school and just kind of collapse and just try and stay awake through the lesson, if you see what I mean. I just felt like I had no energy at all. So, yes, that was probably the most obvious and, obvious symptom I had and the most kind of troublesome one. Although the other things that everyone else seemed to notice were things like I lost a, quite a lot of weight. I think I lost about a stone, and at the time I was only 8' stone to begin with, so losing a stone from that made me look kind of pretty skinny. But I didn't really notice that myself. But everyone around me was always kind of saying, you know, 'Are you okay?' And I'd kind of say, 'Yes, I am'. But it turns out I wasn't.

I used to always kind of pass out at the sight of needles and all this kind of thing, but I didn't find injecting myself to be any kind of a problem at all. Partly because it was such a relief to stop feeling so awful all the time, and partly because when you're doing it yourself it's like you're in control more. It's not someone else kind of approaching you with a needle and kind of sticking you with it. You, you've got control of it yourself.

Most of the young people we talked to said that they hadn't known what diabetes was and that they didn't know anyone else who had it. One seventeen-year-old teenager said, “I didn't know what the hell was happening at first”. A young woman said that because she didn't know anything about diabetes she had plenty of questions that needed answering, like 'Will I be able to have children?' and 'How is it going to affect my life?' (See also 'Information about diabetes'.)
 

He didn't know anything about diabetes when he was diagnosed and wants to help other young people...

He didn't know anything about diabetes when he was diagnosed and wants to help other young people...

Age at interview: 17
Sex: Male
Age at diagnosis: 14
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I was diagnosed with diabetes about two and a half years ago now, two, three years ago. I was fifteen when I got diagnosed. It was quite nerve-racking really because I was. My symptoms were going to the toilet quite often like, sort of like every half an hour sort of thing. I had blurred vision, my pupils were quite large. I was really dehydrated. I was always drinking and so in the end my dad decided to take me to the health centre and they thought I had diabetes which scared [laugh] me quite a lot actually. They even offered to [sigh] take me in an ambulance down to the hospital but my dad said that he could take me and it was all fair enough. 

At the beginning you said that you were quite scared when they told you at the GP's surgery that you might have diabetes. Why were you scared, Do you remember?

For the same reason I'm doing this actually because I didn't know a lot about it. Diabetes sounded like a scary word, you know to, something to be frightened of. You didn't, I didn't know what it was and to be honest when you don't know what something is you do tend to worry about it. And I was quite frightened but I was, like I said I was helped by the nurses and everything and they let me understand what was going on.

So they, the nurses and doctors have provided you with most of the information?

Most of the information I got. I was offered help groups and stuff like that but I didn't, I didn't go to them. But I would advise you to go to them actually. I didn't go to them because I'm more of a shy person, myself. I don't like going and standing up in front of a lot of people but I think it would have helped me a lot to. If I went and did that, stuff like that [sigh].

Last reviewed December 2017.

Last updated November 2014.

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