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Early signs and symptoms

Before being diagnosed, many of those we interviewed experienced classic symptoms of diabetes such as extreme tiredness, increased thirst, frequent trips to the toilet, weight loss, profuse sweating, and itching, burning or pain in their extremities. Other signs of diabetes included urinary tract infections, problems with eyesight, painful feet and loss of libido or interest in sex. 

When people we spoke to went to the GP for check-ups, most were given the diagnosis quite quickly once urine and blood tests had been taken and analysed. People who already knew a little about diabetes because it was in their families were more likely to recognise symptoms such as extreme thirst and needing to go to the toilet. 

 

Shahnaz was pregnant when diagnosed and recognised that feeling so tired and having pain in her...

Shahnaz was pregnant when diagnosed and recognised that feeling so tired and having pain in her...

Age at interview: 54
Sex: Female
Age at diagnosis: 31
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So the first time when the doctor, how did the doctor test you, when you were pregnant, so how did he test your blood?

He just in my recollection, he gave some glucose or something, they test something, that how much glucose do you have in your body. So I don't understand very well but they make you drink glucose etcetera, they test you, first time when they test your blood sugar. So then after that I found out that I have it, my sugar had been very high, very high.

And what kind of, what kind of symptoms were you having?

Yes, [my] symptoms were you know I told you that I was having this very bad tiredness, like I was feeling very sleepy, and my feet were feeling very stretched, like I was having lots of problems in my legs. I was getting this burning in my feet, lots of burning. So I would, you know, I would use my clothes, my long scarf, to tie up my feet. But then when we found that it's the blood sugar then they started giving me the tablets, so I had quite an improvement. I used the tablets, all of them.

So when you started having pain in your legs and started feeling so sleepy all the time, so what came into your mind then, what did you think then, what has happened to me?

Yes, this I had, I didn't feel that I couldn't have blood sugar because my own mother has blood sugar [diabetes], so I thought it could happen that because it's in my family I could have it too. Because my elder sister also has blood sugar, so then you know in that way, I thought that I will also have a test, so that's how I had the test. That maybe, god forbid, I might have it too. So, well it turned out that I had it too.

 

Balvinder was thirsty all the time and suspected he had diabetes because his father had the same...

Balvinder was thirsty all the time and suspected he had diabetes because his father had the same...

Age at interview: 69
Sex: Male
Age at diagnosis: 34
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I used to get - what do you call it - itching in my legs quite a lot, and I used to sweat. Since I started on insulin after that I'm okay, I'm alright.

So what you are saying at the beginning, what symptoms did you have right at the beginning, how did you get diagnosed with diabetes?

Thirst, I used to drink a lot of water, and like orange juice, like sweet drinks, you know. So every about ten to twenty minutes I would drink water, I'd drink a lot of water. So then I felt that I did have diabetes. My dad had the same thing you know. He used to also drink a lot of water, the same thing happened to him. But he found out much later, you know. I found out about mine sooner.

 

Mrs Singh knew when she started feeling extremely thirsty that it could be diabetes (audio in...

Mrs Singh knew when she started feeling extremely thirsty that it could be diabetes (audio in...

Age at interview: 64
Sex: Female
Age at diagnosis: 49
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So now if you could tell me in some more detail about when, at the beginning, what happened, when you felt that something wasn't right, what went came into your mind about what was happening to me?

In my mind, I didn't have that much to wonder about because I knew a bit that if one felt extra thirsty that could be due to diabetes. You feel thirsty, you feel like eating sweet things. So that's why I went to the doctor, because I suspected that I might have diabetes, because we did have it at home [in the family], we had these things, so they used to say that if you feel thirsty you can tell that you might have got diabetes. So I used to feel thirsty and I used to want to eat something sweet, like, and wanted to drink cold drinks only. So then, I went to the doctor because I had a suspicion that maybe I was a diabetic. So, then, I used to feel down quite a lot, that I couldn't walk properly anymore, I used to have so much pain. I used to say, 'What's going to happen? Maybe sometime I won't be able to walk because of all the pain'. So, then that's why I went to the doctor. So then that's why after that I used to go and get checked by the doctor every month. But now I check it at home by myself, so I get to find out about what I ate today that made it so high.

Not everyone recognised that what they were experiencing were the symptoms of diabetes. Some people had linked constant tiredness with their hectic lifestyle or working too hard; some women had linked symptoms such as sweating with the menopause. 

 

Looking back Nicky realises she had many classic diabetes symptoms but at the time she wondered...

Looking back Nicky realises she had many classic diabetes symptoms but at the time she wondered...

Age at interview: 46
Sex: Female
Age at diagnosis: 42
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I don't think I ever did realise there was anything wrong with me on a diabetic front. I got diagnosed by accident. I was sitting in the doctor's surgery with a UTI [urinary tract infection], and was bored and the nurse was also bored, wandered through into the waiting room and said, 'I've just got this new toy that I've got to test urine, will you will anybody come and play?' So, I thought, okay, I'll come and play. So she did her thing with, with her new toy, and we enjoyed the technology there and then, whilst I was there, she did the standard dipstick test for sugar it was 4 thingies and she said, 'Oh you'd better go back and sit in the queue and I'll talk to the doctor before you get there.' And so I got diagnosed with diabetes by accident.

I had a million symptoms at the time, I was very tired, I was going to the loo a lot, I was starting to lose weight. I had keytones on my breath, my breath smelled of pear drops a little bit and so I was, that was the weight loss thing. What else? Night sweats. I was convinced I was starting the menopause. But nothing that I thought, oh I didn't consider diabetes, to be honest with you. I was fairly convinced I was hypothyroid at the time, because my mother had died of complications of that 3 or 4 or 5 years ago - 4 years ago. And so and I'd had a blood test that showed I was borderline-hypothyroid at the time. I just assumed it was, you know, mixed up with that. Early menopause which runs in the family, or I thought ran in the family, I now think that diabetic symptoms that look like menopause run in the family. So you know, I was just trundling along feeling viler and viler, and iller and iller, and certainly not worrying about diabetes.

 

Nasir was diagnosed when he was in his late twenties and thought the extreme tiredness he...

Nasir was diagnosed when he was in his late twenties and thought the extreme tiredness he...

Age at interview: 38
Sex: Male
Age at diagnosis: 28
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Symptom-wise, again going back to what I said earlier, my ones were going to the toilet, thirst and tiredness, they were the three sort of, and I believe they're the three most common ones. And I think I probably had it for quite a few years without knowing about it, because I was, you know, feeling tired, even I would say towards the end of when I was going to university, and you'd come back really tired and stuff and, you would just think 'Oh God because I had a late night' well but it was too frequent then. Going to the toilet was a big thing, but as soon as the GP diagnosed it, you know, it was a bit of shock initially to the system because, you know, you're told you've got quite a serious condition, so there was a shock element as well. That, you know, I've got something wrong and I've got to always like be careful now and watch what I do and take all this medication. It can be, obviously you've got to watch, sometimes when you're going to people's houses there's been an occasion where I've forgot to take my tablets, and you know, you're having to miss a dose or whatever if you want to call, but you just got to be careful that when you go on holiday you obviously take enough tablets with you.

You've just got to be a bit more vigilant with everything you do, wherever you go, and sometimes I have to go down to London for business, with my office and you've got to make sure of, that you pack all your medication as well. And that's something that you've got to keep an eye on you can't just, you know, pack your bag and run and get the plane, you've got to make sure that you have everything with you. But again, you know that, in general if you watch what you're doing then they say that, you know, as long as you look after yourself, then you'll prolong the insulin or whatever for a longer period of time and then you hope maybe, you know, in ten, fifteen years they might come up with something, they could cure it.

 

Philip felt constantly thirsty on holiday and put it down to being too hot.

Philip felt constantly thirsty on holiday and put it down to being too hot.

Age at interview: 81
Sex: Male
Age at diagnosis: 72
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I would say they were there for a very short time. I got the symptoms, and on looking back afterwards I could recognise those symptoms, but I didn't recognise them at that time. We'd been on holiday abroad and of course it was hot there and you tend to drink a lot. And being warm you feel tired, a natural thing, and one thing that, I knocked my shin, and up until that particular time I healed very, very fast. But this time I didn't. It took weeks and weeks to heal over and it is something that you don't think about and you think oh it is taking a long time, but you know more than that' I can recognise the symptoms now that I had. And I can recognise the symptoms in other people now. But how do you show people what their symptoms are. They come on gradually. What I gather. Although I can't remember them coming on.

But how would you describe the symptoms that you have, apart from the slow healing? Did you have'? 

Oh yes, I wanted to drink a lot. I was passing a lot of water and what I didn't realise then I was also passing some sediment in the water as well. I thought it was from the toilet cistern itself. Not from me. I didn't realise that. And my wife had remarked on it, and said, 'There's something funny there in there cistern,' you know. But you don't realise those things. You don't look for them. Unless you are primed to look for them. I don't think you would. And I think that most people that I have spoken to who have got diabetes they had exactly the same problem, they didn't recognise the symptoms prior to' I think if you have got a family where the diabetes is inherent in the family, I think people might recognise the symptoms then, but if you haven't I think it would be fairly difficult. It is only when you become unwell more often or not that you, you're diagnosed.

 

Initially Ken thought he might have prostate problems.

Initially Ken thought he might have prostate problems.

Age at interview: 60
Sex: Male
Age at diagnosis: 56
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Because I started noticing I needed to drink more, and then I got a bladder infection. The GP tested me for the bladder infection and nothing else, and I thought there was something else wrong, so I changed GPs eventually. I went along to the next GP, and was diagnosed as having a prostate problem, and treated for that. I thought it wasn't a prostate problem, so the next blood sample I got I got the nurse to write diabetes test on, and that total process took over a year.

So why did you feel that there was something more to the problem than what the GPs were investigating?

Well one thing was small white spots on the bathroom carpet, which my wife picked up, which apparently is characteristic of diabetes, but I didn't know that of course at the time. It certainly wasn't characteristic of prostate or urinary tract infection. And I guess I wasn't overweight, my cholesterol was okay. My blood pressure, which they did, was perfectly normal, so they just didn't suspect for a while.

Even some people who worked in healthcare and therefore knew about diabetes still failed to make the connection. 

 

As a paramedic Gareth was well aware of diabetes symptoms but never made the connection for himself.

As a paramedic Gareth was well aware of diabetes symptoms but never made the connection for himself.

Age at interview: 61
Sex: Male
Age at diagnosis: 50
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Well I was first diagnosed with diabetes in 1996, or there or thereabouts. And came as a bit of a shock really. Although I, I mean, the job that I was doing as a paramedic, I knew all the signs and symptoms of diabetes, I didn't recognise them in myself. Like drinking excessively, going to the toilet, and so on and so forth. And this was something which I thought was just one of those things, getting old, getting to around the 50 mark. So it did come as a bit of a shock. 

How I found out that I was a diabetic, we were going to America on holiday, and we went to Heathrow. 

So we got on to the, get to the airport, walk around, get onto the plane, and sat right at the very back of the plane. The food was, the fumes if you like, the food, the smell of the food, the smell of fuel, 'cause we could still smell the fuel because the engines were at the back, and all of a sudden then I starting sweating profusely, and, it was just as if somebody had put a tap on my body and just switched it on and it was just dripping off. And my wife said am I all right? And we were at the, actually, we were at the end of the runway just ready to start to taxi off, and obviously I was in hypo and I passed out. So my wife, so she tells me, jumped up, said, 'Stop the plane.' And they stopped the plane. Which was a bit melodramatic, so it was quite good. So she stopped everything at Heathrow, which is funny, [laughs] now [laughs]. 

We walked around Heathrow. We went to the, another desk. There was this girl who was from the airline and we arranged for another flight out, about three hours after our original flight, but we had to go via New York. So, which was an added bonus, so we were going to New York to go to Boston. So this is what we done. I had a marvellous flight over from Heathrow. My wife had a terrible flight, because she sat up watching me all the time. Wondering everything, nudging me and things like this. But that was it. 

So as the holiday progressed I got really better because I was eating. I was, and, and no symptoms of diabetes at all. But when we came back just to satisfy my wife. She said, 'You have got to go see the doctor', so I arranged to see the doctor, but I, before going to see the doctor, I had done an ECG on myself in Casualty and I checked it out and there was nothing on there, 'cause I could, could read an ECG quite well. And there were no peaks or troughs or anything like that. PIS was okay and everything. So I go up to see the doctor. I take a copy of my ECG up and he said, 'Oh there is nothing wrong with that at all. But to shut her up we'll do a blood test.' So I said, 'Right you are.' So he took blood and I took it up to the hospital and lo and behold he was ringing me within an hour to go back up to see him, because my blood sugars were something like about 26 or something like that. Twenty-, 26. So that's my introduction to diabetes.

Certain symptoms, such as itching, did not seem very important or were so random that people did not connect them with diabetes. 

 

Helen was healthy and the only sign that she had something wrong with her was an itchy thumb.

Helen was healthy and the only sign that she had something wrong with her was an itchy thumb.

Age at interview: 63
Sex: Female
Age at diagnosis: 60
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Well, initially when I was diagnosed with diabetes it came as a huge shock both to myself and to my GP who I've known for a long time. And I originally went to the doctor after being, having a holiday, a month in France. Came home and felt very tired and also had a very very itchy thumb. Now in retrospect I had been moaning about the itchy thumb and my hands had been irritated probably for twelve months before that. But it was there and then it wasn't there.

So I really didn't, I was too busy, my life was far too busy, I didn't pay much attention to it. But I was on holiday and, from school and I thought, 'I really must go and see about my itchy thumb.' And the doctor looked at it and he said, 'Oh, you've had allergies before. I think it's an allergy, blah, blah, blah. I'll give you some antihistamine.' But asked me other questions. Fine. He said, 'Come back and see me in a week and tell me.' So I went back in a week and said, 'It's absolutely no better.' So he then started to ask me questions and he, the question he said to me was, 'What do you think is wrong with you?' And, because I then said, 'I've got itchy thumbs and yes, I've got a bit of itchy feet and I was hot and bothered'. And he, and I said, well, I was a bit apprehensive because my grandfather had Parkinson's disease, and because of the hand feeling I just was a bit frightened of that. So he said, 'You definitely don't have Parkinson's.' And he said, 'You don't have this and you don't have that and you don't have these things.'

And he said, he then started to ask me questions. Did I go to the toilet a lot? And I said, 'No, not really.' I said, 'I get up every night to the toilet, but I've been doing that since my children were born. So it really is no more than a habit I think.' And he said, and, you know, he asked me was I thirsty. And I said, 'No, I don't think so.' And he said to me, 'You know, you're slim, so you know there's no issue about weight.' And he asked me other questions about my family. And I said, 'No, no, no, no.'

Everything was negative of all the questions he was asking me. So that was fine. He said, 'Well, we'll take some blood tests.' So I forgot about it. I went off for the weekend. And he came to the house because the results had come through and the, the blood sugar level was actually very high. So it shocked him and it certainly, it shocked me because as far as I was aware I felt healthy.
 

Sometimes people had not experienced or noticed they had any symptoms at all and talked about how their diabetes was discovered by chance, for example when they were having hospital tests for other ailments.

 

Stuart was diagnosed when he was having treatment for persistent nosebleeds.

Stuart was diagnosed when he was having treatment for persistent nosebleeds.

Age at interview: 60
Sex: Male
Age at diagnosis: 55
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So if you could tell me about your life with type 2 diabetes?

Well I've been trying to try and think when I was first diagnosed, and I think it must have been round about 2002, maybe 2001. It came as a bit of a shock, I have to say. It came about because I had had some nosebleeds. And I'd been to the hospital and been to the GP with these nosebleeds and it was discovered that, that I'd got raised blood pressure. 

But at the same time the doctor undertook a range of tests and to my horror he came back and said that there was indications of diabetes there, but that a few months previously, twelve months previously perhaps, it wouldn't have been diagnosed. Because they'd actually just lowered the threshold I think for the tests and for the results and I would have been sort of forgotten about, if you like, if, unless they'd changed these readings. And they'd done that I think in order to try and identify as many people with type 2 diabetes in order to get the planned services for the future and start treatment early, so that some of the other problems weren't, maybe didn't, didn't occur. 

I was quite surprised and quite shocked and a little upset when I was told, because you know I'd been very healthy, very fit, you know nothing wrong. I'd had no illnesses or anything in the past. So it came as a bit of a shock and a surprise. And I suppose I was, I was a little bit angry too that somebody had told me this and, 'How dare they tell me I'd got this illness and, when I'm so fit and healthy and felt absolutely fine.' I mean even with the nosebleeds there'd been no other indication of anything, anything wrong. So, you know, I had a very fit and healthy lifestyle. 

 

Malcolm found out he had diabetes soon after his optician spotted that he had problems which...

Malcolm found out he had diabetes soon after his optician spotted that he had problems which...

Age at interview: 54
Sex: Male
Age at diagnosis: 39
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Right, basically I was diagnosed when I was 39, back in 1992 roughly. Went to an optician's for a routine eye test. Had no history of diabetes in the family or anything like that. I'd had a motorcycle accident a few years before and damaged my eyes, so they recommended having a follow-up, you know check. And didn't wear glasses, you know, never needed glasses. And the opticians were starting to go, 'Mmm, yes…' you know, and 'We think there's a problem with your eyes...' you know, 'Take this letter to your doctor.' Didn't think anything of it, having had the motorcycle accident. The doctor did some blood tests.

I didn't know anything about diabetes [cough] at all. Said, 'Right, you need to go to, and see a consultant.' And that's when they started talking about diabetes, and sort of frightened the life out of me completely. And what it is, I had retinopathy, which is damage to the back of the eyes. Because I've learnt since that someone with diabetes has had it, type 2 diabetes possibly for up to seven years. So, yes, I'd possibly had it for seven years.

You know, so had the, the diabetic retinopathy, was overweight, so, and I was sort of middle-aged, so it was all the classic things. Was tired, you know had a young family, busy job, so you tend to think, you know, that's all [understandable]. But looking back I had all the classic examples of thirst, going to the loo a lot, tiredness. So after, they didn't need to do anything to my eyes because it was only a mild case.

Some people may continue to be unaware of the symptoms of diabetes even after they have been diagnosed. 

 

Chris only found out he had diabetes by chance and says he still doesn't feel he has any specific...

Chris only found out he had diabetes by chance and says he still doesn't feel he has any specific...

Age at interview: 61
Sex: Male
Age at diagnosis: 56
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I can't remember why, I went for a blood test. I suffer from depression, and I think it was do with, something to do with' oh, some of the tablets I was taking, you know, and they weren't agreeing with me. So you had to have a blood test. And then they called me in and told me I was diabetic. And I had to go on a diet, you know. I mean I didn't think I was that bad. I didn't know I had anything. No symptoms I would have thought were anything. Well, I don't even know, really know what the symptoms of diabetes are now, even now after five years. I don't really care. If I'm ill, I'll know I'm ill. 

But I just don't , I don't, you know, I don't understand what I'm supposed to feel with diabetes. You know, is there something specific I should be feeling? I know my eyes. I know that if I get a sore it doesn't heal as well these days. But then that's old age, I mean that comes with old age anyway. Poor healing is one of the first things which is a sign of old age. 

Last reviewed March 2016.
Last updated March 2016.

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