Everyday factors that affect control of type 1 diabetes

Controlling type 1 diabetes involves thinking about all the factors that impact on blood glucose, including the carbohydrate you eat, and the amount of insulin you need for it, the exercise you have recently done and the exercise you are planning to do, and learning how your body responds to different circumstances.

Young people also talked to us about everyday things which were not always straightforward in their lives such as leaving home, cooking their own meals and going out with friends. They also talked to us about other things that affected blood glucose levels. Those who felt they had reached a good understanding of what to do and when to do it said they gradually accepted they needed to think ahead and plan their lives, but that once they had done so, they got better. But others said they found forward thinking and planning about everyday matters was difficult and that they needed more support and help.

Physical exercise and insulin-control

Exercise brings down blood glucose levels and those who play sport have to learn the particular ways different kinds of exercise affect their insulin and carbohydrate balance. Some found that it took quite a while for them to work out the amount of insulin that suited them, particularly those who played energetic games like football or rugby. Several suggested that a good way to manage blood glucose levels when exercising is to start with higher levels than usual so as to avoid having a hypo.

She explains why rugby is not an easy sport to play when you have diabetes. But she is proud of…

Age at interview 22

Gender Female

Age at diagnosis 9

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And what about doing your blood sugar tests? How often do you do them?

Now I do them quite a lot. I play rugby and it’s quite, obviously quite a violent and active sport [laugh] so you use up serious amounts of sugar in very short periods of time. So like then if I’ve got a match or if I’ve got training or fitness session I’ll do quite a lot of blood tests. I mean if I’m really not feeling well it could be as much as eight in a day or something but not regularly.

Have you noticed that sport helps?

I find sport doesn’t help. I find it very frustrating because sport’s great. It’s excellent for you. It’s all the long-term benefits are great and I feel better, you know, about myself and healthy if I’m doing sport. But it makes diabetes really [laugh] hard to manage for me. And I talked to my doctors about it. Well he said well partly it’s the sports that I choose to do. If you do something like say rowing or jogging or something that’s much more steady, I mean, you might be exhausted but it’s a constant then it’s easier. But because my favourite sport’s rugby you might have. You go to a training session and you might be doing something quite stationary but you don’t know what you’re going to be doing so you know, sometimes coaches can tell you but sometimes they can’t. And a match, you might get injured and then, you know, you’ve had enough sugar to play for eighty minutes and suddenly you’ve only played for ten or something. Things like that just happen and you can’t really do much about it. And I think, I mean I’ve had so many different types of advice about doing sport.

My consultant says I should take a can of sugary drink. I also play squash and he plays squash. And he says. Oh well hes got Type II diabetes. He takes a can of sugary drink and will sip, you know, maybe a third of it before and then a third of it during and then if he needs it a third of it after. Now if I have sugary drinks I get headaches because it’s so sugary that like your body’s just like whoow or mine is. And I wouldn’t need that much sugar and I wouldn’t want to have that much sugar to then go and run around. It seems to negate the concept of being healthy and doing something sporty.

So I sort of said this to my dietician. He said well yeah, she could see what he meant but you know maybe try having less insulin before you do sport. And because I’m on four injections a day I can do that. So that’s what I do now which works best I find. It depends when because like if I’ve got training from 7 to 9 and I can’t eat dinner until afterwards if I don’t have so much insulin at lunch I’m then going to be high all afternoon which obviously isn’t what you want. By high I don’t mean like through the roof but higher than you choose to be. So depends what time of day but often I’ll do sport after dinner so have less insulin with dinner which works really well because you don’t have to have loads of sweet. You know, I’ll probably still have a chewy bar, not chewy, a sweet before the sport just to make sure I’ve got enough sugar but I don’t need to have loads of stuff around which is good.

But then my consultant also recommends sports that aren’t quite so crazy but everyone, but everyone, but everyone completely supports the fact that I want to play what I want to play. And enjoy life so yeah.

So you are doing what you want but you have to work harder?

Yeah I mean that’s how diabetes is for everything. You know you, theres very few things that you couldn’t do because of diabetes but you just have to plan more and think more about what you’re doing. but I absolutely, cate

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Getting control over blood glucose levels long-term

The young people we talked to were clear that they needed to have ‘good’ HbA1c test results. (HbA1c means glycated haemoglobin.) An HbA1c test measures average blood glucose over several weeks.

Most young people defined ‘good control’ as having HbA1c levels between 6 and 7% (42-52 mmol/mol). Levels around 8 or 8.5 % (64–69 mmol/mol) was seen as doing ‘all right’, and most people said that anything above 9%(75 mmol/m was ‘bad control’. Very few young people said they had been able to maintain ‘good’ HbA1c results over several years. National data suggests that it is hard for everyone with type 1 diabetes to hit these targets. According to the National Diabetes Audit 2015–16, only 29.2 % of people with type 1 diabetes in the UK have an HbA1c below 7.5% (58mmol/mol).

He tried to maintain his HbA1C’s between 5 and 6 per cent and was experiencing lot of hypos…

Age at interview 26

Gender Male

Age at diagnosis 18

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When I started there was, I mean obviously my blood sugars when I was first diagnosed were very high, and then I kind of got them down. And that kind of honeymoon period got me used to kind of expecting to have kind of 5s and 6s all the time and, and that kind of thing. And as that kind of started to wear out I was kind of trying to aim for the same kind of numbers without really being able to manage it. So I was getting a lot more hypos as a result. And my doctors sort of said, you know, ‘You’re doing perfectly well. You don’t need to kind of maintain such a, such low numbers all the time. You can kind of let things go a little bit higher and have fewer hypos. And it’s your life, you can kind of. Once I’d just allowed them to go up to kind of 6s and 7s without kind of stressing about them in any way the number of hypos dropped off lots. So there was a kind of a period where I was kind of controlling it too tightly just because I’d been used to my body being able to do that anyway. And when that stopped working I was kind of trying to do the same thing, which wasn’t really a good idea. And then apart from that it’s just kind of when I know that I really can’t afford to have a hypo, or I know that I’m going to be doing a lot of exercise which might make them more likely, then sometimes I’ll adjust things to kind of avoid that situation. But that’s kind of just on a kind of a single-day basis or something.

On average what are your readings when you have an HbA1c?

For the most part over the years I’ve had it they’ve normally been kind of around between 6 and 7 per cent. I’ve, have had times when they’ve been kind of down as low as 5, which is kind of the time when my doctors were saying, ‘Look, you know, it’s perhaps a little too low. And theres been one or two more recently that have been kind of at the higher end. So I’ve been trying to beat them back down again. But they’ve not been kind of really much more than 7 for the most part.

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His approach is that he is his own doctor, nurse and pharmacist and does what he is supposed to…

Age at interview 24

Gender Male

Age at diagnosis 16

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Would you say that you have good control?

Yeah like my control, like my control is, is fine, I’ve got, I don’t really have, I have like, I have a hypo like once, once a week like where I go, where I go low. But I’m lucky enough to, I can feel the warning signs and instead of just waiting for the warning signs to come, when I start feeling like that I test my blood sugars and I’ll go and have something, something to eat or something to drink. And there again theres your opportunity for you to have a treat, for you to have something that you’re not usually supposed to have. You know if I’m a little bit low then may be I’ll go and have a slice of cake or something and then a sugary drink. My personal preference is I like to have a sugary drink because I like to get feeling normal as quickly as possible, just like to have a bottle of Lucozade, half a bottle of Lucozade, get myself feeling normal as quickly as possible.

But management, like my management, because I, because I do eat regularly, I do my injections when I’m supposed to do my injections it does make my sort of my body regulate itself quite well and I’d say my management is pretty good. I don’t have, I don’t fluctuate, I don’t go high and then I’m going low, I manage to keep it usually like between the sort of 4 and the 7 range but again don’t, I’m not perfect at all. I’m always getting readings of 15, 20 you know 13 and you just, you’ve just got to try and think right well why have I got that reading? And you know that if you’ve got that reading that it’s something that you’ve done. The way that I look at it is that I’m sort of like my doctor, a pharmacist and my nurse all at once you know I keep as much of my own insulin in the fridge as I can so theres my pharmacy in the fridge. Nurse because I’m giving my injections myself and testing my own blood sugars. I’m a doctor because I’m deciding how much of it to give, not just giving it myself and it just means that I can sort of manage myself and know exactly, and make myself, make sure that I am at those levels where I should be and it just makes my life a lot, lot easier so’

How are your HBA1C?

7, my Hb is 7.7 which is pretty, which is pretty good you know it’s, like when I go to the, when I go to the check-ups I, the last doctor that I had was saying, saying how good my management was so I kind of went to a new young person’s clinic which has just opened in [city] and went, went there and I was going in there a little bit cocky and saying, saying, ‘Yeah my blood sugar management is good, it’s this, it’s that, my H, my levels, my three months levels are 7.7,’ I was just saying to him, saying, ‘Right well it’s all pretty good isn’t it?’ And he was just like, ‘Well still could be lower, still could be lower, bring it down a little bit. I mean no doctor is going to, until you’re at the levels exactly where the doctors are going to want you to be they’re not going to tell you that you’re doing, that you’re doing everything perfectly. So I mean but the year before I was 7.8, last year I was 7.7 so let’s hope next year 7.5-7.6 so. Yeah but just try and keep it as low as, well in between those levels of 4 and 7.

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HbA1c results were given as a percentage e.g. 6.5%, but from 31 May 2011 in the UK, HbA1c will be given in millimoles per mol (mmol/mol) instead of as a percentage (%).

To help make this transition as easy as possible, all HbA1c results in the UK will be given in both percentage and mmol/mol from 1 June 2009. Some young people attributed their more balance blood glucose levels to their use of an insulin pump and a Continuous Glucose Monitoring (CGM) device (see also ‘Insulin Pumps‘ and ‘Continuous Glucose Monitoring‘.)

Avoiding fluctuations in levels

The majority of the young people we talked to said that they have gone through ‘good and bad patches’ and that it was not always possible to maintain stable blood glucose levels. Some people preferred to not think about controlling their diabetes in too much detail in case they got ‘obsessed’ by the illness, and many felt they could afford to be relaxed about fluctuating levels at this point in their lives and that eventually levels would stabilise.

Says that if you let it, diabetes can rule your life and she doesn’t like that. Her control is…

Age at interview 17

Gender Female

Age at diagnosis 12

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After a few – I think it was a few years it was being – the control was a bit wobbly, so I went, obviously going to the clinic, and they advised me to go on to four a day, just try it, and if I didn’t like it I could go onto another one. So I tried that and it was so much better, because I like to fit my diabetes around my lifestyle. I don’t like the fact that sometimes, if you let it, it can control how you live. So the four a day can – you can control everything – like what you eat, when you eat. You don’t have to keep up diet or anything.

How good is your control now?

I go through patches. I’m in quite a good patch at the moment. It’s generally quite good. My Hb is usually seven, or above I didn’t go below seven, but that’s quite good but it is my aim to get it six [laughs], but it’s never been too bad. It’s always averaged out quite nice, but I do go from week to week. I sort of swing from good to bad, and then the bad times, sort of, it makes you think, ‘Right, I’ve got to control it’, and then you get a good patch, but it’s roughly balanced.

Has it always been like this, or not, that you go through these patches?

Yeah, I think I’ve always been like that. Yeah, well, it’s not real bad, and then real good. I suppose it’s – if you’re going to bracket it, theres like the good bracket, and it just goes up and down towards the bad, and towards the good, and it just sort yeah.

And how have you found that in itself?

It can be distressing at times, it can, but –

Why?

– I get – me personally – I get quite frustrated if I can’t get it right, because I know that if I try really hard I can. But you get [sigh] I do –

What does it mean to try really hard? What do you have to do?

Keep up the tests, and think about what insulin you’re doing. Be more vigilant.

What do you mean – what you are going to eat and’?

Yeah.

What are the amounts you are going to eat?

Yeah, all that type of stuff.

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Says that her HbA1c is alright but that as a student she has other responsibilities and that she…

Age at interview 20

Gender Female

Age at diagnosis 11

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I suppose, because I don’t sort of, it doesn’t really, it’s not really a big deal I suppose, I’m used to it so I just kind of get on with it so you know in terms of actually managing it it’s alright, it could be a bit better but you know it’s alright, it’s not terrible, you know I don’t feel like I’m completely out of control with it and I’ve not got a clue how to put it right or anything. And in terms of like generally the way it affects my life I’m kind of used to it so it doesn’t really, you know I don’t go about thinking oh you know what a hassle, you know kind of and getting worked up about it because it’s just sort of used to it really, can’t really remember, I cant barely remember back to when I was diagnosed let alone before that so [laughs] it’s just kind of like you know it doesn’t, I don’t know it’s not really a big problem I suppose, I just kind of got used to it and got on with it.

What does alright mean, control it alright?

Well I suppose controlling it really well would be if I had an HbA1C of under 7, then I’d be like oh yeah I’ve got it you know really good. But er my HbA1Cs are normally may be 8, around the kind of 8, 8.5 mark, so that’s alright. I mean it’s not perfect, it’s not brilliant but it’s not you know 10, 11 or anything like that either so that to me is kind of alright. With all the, you know because it’s quite difficult as well when you’ve got lots of other things going on like you know if you’ve got a big bit of course work or you’ve got exams or you know things like that you don’t have a huge amount of time to sort of devote to thinking oh you know how am I going to get it below 7? But as long as it’s not going really, really high or anything then kind of I’m not, not you know pleased about the fact that it’s above 7 but I can accept it because I don’t want it to be the sole purpose of my life to get my you know HbA1C under 7 [laughs] you know so’

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Periods and hormones

For people who menstruate (have periods) the monthly menstrual cycle and periods can cause blood glucose to change. Many of the young women we interviewed said that their blood glucose levels tend to fluctuate between low and high before and after their periods.

External factors that can affect diabetes

Everyday illnesses such as colds, flu, tummy bugs can affect glucose levels especially if you lose your appetite and stop eating normally. Young people said that having regular sips of energy drinks and eating toast had helped them. Others wondered if warm weather and hay fever had a bad effect on them and their control. (For young people’s experiences of the effects of diet and alcohol see ‘Diet and diabetes’ and ‘Drinking and alcohol‘).

Some people found that stress during exams could raise blood glucose levels; while others felt that physical inactivity of revision for exams caused them to go high. Young people said that their levels tended to fluctuate between low and high during exam times, and that coping with blood glucose levels could be difficult and add to overall stress levels. A few young people considered themselves lucky because stress had not affected their blood glucose levels at all.

She finds that exams and stress affect her blood glucose control the most. Her care team has…

Age at interview 16

Gender Female

Age at diagnosis 7

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And your levels, how do they read when you go to hospital?

It was quite high for a long time, it was in double figures but in my last appointment it was, it’s coming down and it’s kind, under ten now. But it’s still quite high but monthly it’s sort of coming down, bit by bit. I think I am doing something right [laughs].

I’m still using a diary because they say if theres any ‘key events’ that are going round like birthday party or something that could’ve happened to result in a higher or low blood sugar then I should right that down as well, so it’ll be, it’ll be helpful when I go to clinic to try and work out what insulin amount to do.

I mean like birthday parties, or big celebrations, or exam’s stress, or periods. Do any of these sort of particular events affect your readings?

I think exams affect me most of all, I tend to go quite low during the exam period, maybe because I’m working a lot late into the night as well. But I think birthdays and parties, I’ve got the hang of knowing where my limits are and what to eat and, giving extra units as well. So I think that’s okay it’s just sort of exams and stress at the moment, especially with like GCSEs and everything happening. It, and my blood sugars tend to go quite low.

So what do you do on those occasions?

I was told to just reduce what insulin I’m taking, then maybe do a few more blood sugar monitors in between, to check that everythings okay and not too low. So I might eat a little bit extra before bed because that’s usually when I go low, during the night.

Their advice was to lower my insulin, and do a few more readings to, to see what’s happening and then according to that I can adjust my levels in insulin.

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Going to university and leaving home also tended to be an unsettled time and many people had been warned by their diabetes medical team that their blood glucose level might be up and down for a few weeks while they were adjusting to a new life style.

Other kinds of emotional highs and lows, particularly arguments with parents, boy/girlfriends and others could result in a high blood glucose reading.

She is newly diagnosed and explains which factors she had noticed affect her blood glucose level,…

Age at interview 18

Gender Female

Age at diagnosis 18

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It just concerns me because sometimes, you know, my sugar level might be high and then suddenly the next day or a few hours later it’s quite low. And that worries me because that difference of sugar level in the body can. Obviously it’s not good for your body so it worries me like what can happen if it’s really high one day and then really low, you know, a few hours later. That sort of worries me. But I think it’s just at the beginning stage where my body’s, you know, getting used to the insulin and the whole new, you know, diabetes and injections and stuff.

That’s the explanation that has been given to you by doctors or?

Yeah. It’s my body’s take, is going to take time, you know, to get to the right level because it’s a new thing and I’m going off to uni so I’m a bit nervous. And also like in women when you have your period your sugar level is higher as well. So all this’

Have you noticed that already?

Yeah, yeah I noticed that. But I just, I was a bit scared because I didn’t know why it was a bit higher and then I asked the doctor and they said a few days before you get your period your sugar level can either be high or lower. So that was quite comforting because now I know for the future.

You just need to, with me as being a student I get quite nervous or stressed when I have exams and stuff and they say you have to be very careful because you know your sugar level can get high at those sort of times. So I’ve been trying to control my emotions and trying to not get upset or stressed about things as much because I know it can alter, you know, my sugar levels.

So, at some points you feel kind of positive and have positive thoughts and feelings and at other times when you are under stress you might sort of feel down?

Yeah you sort of break down a bit, yeah. And especially if you have a lot on your mind and theres other things going on in your life, even in your social life or if you have an argument with someone.

I just think if theres other parts, if theres other problems of your life, you know, if you do have an argument you feel nervous and you might cry or something and that completely messes up your sugar levels. I don’t know why it does it but. Because when I’ve been upset or upset with my boyfriend or something it does, it just goes out of control. The levels get high or they can get very low as well. So it’s something just to try and not think about things just relax and, you know, try not to get into arguments and stuff.

And if anyone in your life is, you know, stressing you out just get rid of them. You know, that’s what I think. Just take them out of your life [laugh]. It’s easier that way.

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