Diabetes type 1 (young people)
Finding the right insulin regimen for you
In a non-diabetic person insulin is released from the pancreas to help control his or her blood glucose level. For diabetic people, taking insulin several times a day via injections or a pump aims to imitate the normal pattern of insulin production from the pancreas as closely as possible.
What are the different types of insulin?
The insulin used by Type 1 diabetics is made in one of three ways:
I mean luckily I'm one of the people who have, I only have to take it twice a day but I'm aware that it's in, some insulin's you have to take three, four times a day [Mmm] but I don't care who [laughs] I don't care I just I would not ever do that, when my doctor asked me whether I had to do that I go no way, two's enough, you know two's too much, it should be one, that's it.
What type of insulin are you taking?
Right now I'm on Humalog mix 25.
And what has been your doctor's response when you said only two, twice a day?
No he was fine with it, like whatever works for me, that's what he said, would I consider it and I said no [laughs].
I think because I was on another insulin before where I had to eat six times a day, you know, breakfast lunch and dinner. Plus three snacks after each meal and well not between not after each meal but you know in between, between your breakfast and lunch and. blah, blah now with this insulin that I'm on, I don't have to eat any snacks, so it's easier for me.
Changing your insulin regime
What type of insulin are you taking?
NovoRapid and Insulatard.
And you take four injections a day?
Four injections a day. Three of NovoRapid for your breakfast, lunch and dinner, and then the Insulatard keeps you going - keeps it for the rest of the day, keeps it at the main rate, and you just take your NovoRapid for your meals so covers for that and'
Are you happy with the insulin you are taking or have you talked to the doctors about other type of insulin, or have they told you about'?
I haven't been on this for that long so I can't really judge it but I just try and work out the same pace but I've had one good test with it so far, which is a good start but it - it's mainly - if you're having problems getting your HbA1C right it's probably a lot to do with your age and the hormones and everything. And it's just really hard to get it thingy because when you're a child it's really easy, because your body's just there. As soon as you change from puberty your body's going everywhere.
They have told you about it at the clinic?
Yeah, I've been reading it in a magazine that loads of people have problems with it and I just reckon that it's your age and all that.
They changed the insulin type recently?
Yeah, last year.
Last year?
Yeah.
What were you on before? Do you remember?
Humulin and Humulin I.
So that was just two injections a day?
Yeah.
So the type of insulin you're using at the moment is?
I'm on. Well I've got two types. I've got Humalog and Lantus. Humalog is a short-acting one. I take it in conjunction just before every meal and it peaks after about fifteen, twenty minutes. It's effective for about an hour and it still gives some effect for up to, I think it's up to two and a half hours. Do that before every meal.
And I've got Lantus as well because, which is a background one. It's a long-acting one take one, one much bigger injection once a day. I do it in the evening before I go to bed but it needs to be roughly every 24 hours. And that sort of acts as a top up. So if I have a snack or anything during the day it doesn't go straight off the chart, straight away. And to be honest I really quite like doing it that way because it gives, gives me a lot more flexibility than having to inject 20 minutes before I eat. I can just do it and with the Humalog as well I can do it just after I eat as well which is really useful. Like some, like on a plane or something so if you're getting - come round with in-flight meals save you having to wander past this cabin crew while they're serving it, just wait until after and then go and do it. It's yeah I do like it a lot more that way.
I used to be using, I used to use Humulin I instead of, instead of Lantus well they changed it to Lantus. Came out, it's relatively new [laugh]. They changed they changed me onto that because they thought I would be slightly better suited. I went through a, I went through a phase of having quite low blood sugar levels first thing in the morning but if I'd cut back on the Humulin I anymore it would have been a bit too high for the rest of the day. So instead they said ok we'll try you on this new type of insulin. It's what , they produced all these graphs showing how effective they are and that the lot more effective over a steady period whereas Humulin I would peak in the middle of the night and then that would leave me a bit low in blood sugar in the morning. So yeah they tried me on that and then I do like it. One thing I don't like about Lantus is the stupid disposable pens which are absolutely rubbish and the worse things ever invented [laugh] ever for diabetes care. But yes anyway.
Tell me a bit more about that?
The the pen I use for the Humalog I had two the same for the Humulin I I've got the same cartridges as Humalog. It was fine. You could dial up however many units you want in single unit increments and if you, like put in too many you can just turn it back and then just push the button down on the end and it would go in. And the cartridges, 300 unit cartridges, yeah up to 60 units at one time which I don't actually. I've never had to do more than about 14 I think was my highest [laugh] at one point. But I mean you've got the potential to go all the way up to 60. With the Lantus, they're fairly well built, the Humulin I once I mean I've been using the same one since I was diagnosed. I mean that's what four and a half years now. And there's one crack on the casing that goes around the cartridge where I dropped it on some concrete [laugh] but apart from that it's fine.
The Lantus one was their stupid flimsy plastic. It's just, they're disposable as well so it's all sealed up. So what you do is you stick the needle on the end, take the packaging off that. Put the lid back on and away you go. It only goes up in two unit amounts. You've got to pull a thing back to get it to, before you're able to use it. And if you've doubled up the wrong amount of insulin you can't put it back in again to cleanse it, you've got to just count the clicks really carefully and you can never get the last one i
Some young people said that their previous insulin regime had been inflexible and too complicated. Many young people said that they didn't like regimes where they had to eat snacks between meals whether they felt hungry or not although this regime is unusual now.
Do you remember the insulin regime you were on?
Yeah it was it was syringes which was a complete pain in the neck. As soon as I stopped syringes it all got a lot better.
And I used to be on two injections a day and so you had to mix the short-acting and the long-acting insulin. So drawing up the syringes used to take, well probably not long but it seemed like quite a long time. And you had to sort of make sure the air bubble was out and make sure that there was enough insulin in the cartridge before you started drawing anything. So yeah my parents did that for a while and then I started doing that but pretty much as soon as I started injecting myself I decided that this was far too complicated. And so I started using pens which made my life a lot easier.
So you changed to pen and which type of insulin with the pen?
ActRapid and Monotard I think. Would that be right? Yeah
Initially?
No. First of all I went on to a 30/70 mix Humilin I think it was called.
Ok.
Because that, from a pen. But then that wasn't working out right because the 30/70 mix just didn't suit me. So then I went onto having ActRapid three times a day and then Insulatard at night from the age of maybe eleven or twelve. Yeah for the first two or three years we tried out lots of different ways of doing it but it never worked.
Tell me a little bit more about when you had problems with the insulin, the 30/70?
Ok. Well the thing about 30/70 was that kind of if you have X units at breakfast you're still going to have X units in your system at lunch so it didn't take into account like some days if it was raining then I wouldn't be playing sport. I wouldn't be running around at playtime but obviously when you inject yourself at breakfast you don't know that necessarily that it's going to rain at 11'30 in the morning so you had no control over the long-term insulin that you injected in. So I'd have problems if suddenly my routine changed. And initially that was less of a problem because I was at primary school where it was very much, you know, playtime is 10'00 and then 11'00 and things are sorted. But as I got older and had a slightly less regulated life it became more of a problem.
And then the same in the evening and the problem with the 30/70 insulin was that you had to have snacks. Which is fine at break or something because everyone has snacks but like, I'd eat dinner and I don't tend to be hungry after dinner before I go to bed so you end up eating food that you don't really want and you don't really need. And it was just really complicated because you always had to have things available. And I think also you could. There was no flexibility because if you, if you increased the insulin overall you'd increase both the long-term and the short-term so when I started we used the exchange rate. So every ten grams of carbohydrate I guess was calculated for the amount of insulin I'd have but you know sometimes you might have more and then you couldn't just stick up the short-term insulin because that would also stick up the long-term insulin. So it just got too complicated. I'd be high or low and I'd kind of. As I was injecting myself before dinner or breakfast or if my parents were they'd know almost that I was going to go high but they couldn't do much about it because I would have had to have eaten more at breakfast if I wanted to eat more at lunch again, sort of thing.
So you found the whole regime inflex
Some young people had experienced problems with some types of insulin routine. One young woman, diagnosed as a child, became irritable and very tired when starting to use a new insulin routine. Doctors kept trying various types of routine until they found one that suited her and her lifestyle. Another young woman who'd been on the same insulin routine for thirteen years was advised to change to another type of insulin to allow for a more flexible routine. One week later she became very ill and was admitted into hospital with DKA (diabetic ketoacidosis). She had several episodes of DKA which didn't stop until after she was put back onto her original type of insulin but with more frequent injections. It's very important to closely monitor blood glucose levels - doing the 'finger pricking' - as instructed by the consultant or nurse, especially when changing insulin routines.
I was there for a couple of months and then they decided to change my insulin, after 13 years. And after that, within 4 weeks, I was rushed into intensive care with DKA (diabetes ketocidosis). When my blood sugars just went totally off the scale. All my blood turned to acid and I was very, very ill with it. I was in hospital for about a week trying to get over that. I was in and out for two weeks and went back in with exactly the same thing. Blood sugars went off the scale, really, really ill. Since then I've been in five times with the same thing. They've tried changing all my insulins about but it just didn't work. Nothing really worked with it. The last time I went in they put me back on my old insulin but they put me on it four times a day so I was originally on two times a day. They put me on four times and since then I've stayed out of hospital for the last four months. Which has been really good. But it's just taken its affect on me It's like I've been down with viruses. I find it very difficult to get over them. I'm left very weak and not being able to do much, really. So it's had that knock on effect.
They don't know what caused it at the moment. They keep saying it's viruses. They can't put their finger on it. All they can think of was the insulin I wasn't reacting well to. But apart from that, my blood sugars have, are stabling now but they did go up and down because I have been so ill. And that they have gone up a couple of times but not to a level where I've ended up back in hospital. So'
Which insulin were you originally'?
I was on Humulin I and Humulin S, cot, no vials I was on and the actual injections. They then changed me over to the NovoRapid and Lantus which, that didn't work. They put me on pen four times a day with that one but that didn't work so when I went into hospital'
Why did they change it, did they explain it to you?
They thought it was better because I was on twice a day. I had to have them at the set times. They didn't, they wanted, the, me to run the diabetes rather than the other way round. They said, on four injections a day I could, if I wanted to lay in I could have my injection a bit later and eat a bit later whereas before I had to have my injection at 7 o'clock in the morning and then eat within half an hour. I had no flexibility. At night time I had to have my insulin at 5 o'clock and eat my dinner. So if I wanted to go out with friends and eat at 8 o'clock at night it was very difficult to do that. Whereas they said on the four times a day, if I wanted to eat at 8 rather than 5 then I could have a little injection at 5 o'clock with a small sandwich, then have my main meal at 8 o'clock with my main injection. So they said, it just, it helped me to control it more.
Flexible insulin regimen
Explain to us what carbohydrate counting is.
Counting because, with the rapid acting insulin you're giving yourself the exact amount of insulin that you require for how much you've eaten and so you have to work out how much carbohydrate you've eaten how many grams of carbohydrate you've consumed and the, say for me, for every 10g of carbohydrate I eat I give myself one unit of insulin. So I work out a slice of bread is, I know is about 15g of carbohydrate and a size of, bowl of cornflakes, say, I would normally eat is about 40g, so I know to give myself 4 units of insulin for a bowl of cornflakes and so you're, at the beginning when I started carbohydrate counting they gave me this big book with photographic atlas to carbohydrates, or something, it was called and it had on each page six different pictures of different portion sizes of a certain type of food. So the first page was porridge and it had six bowls of porridge. One massive, going down to small. And, so if I had bowl of porridge I'd get my book out and be like, 'Hmm. Which, which bowl does mine tally to.' And then it tells you how many grams is in it.
And then it, it goes through loads of different food types, different cereals, and then potatoes and pastas and pizzas and rice and apple pies and it has some random things in it. It was so funny, and my friends just thought I was insane. Going out for supper or we were eating in the university canteen where there are hundreds of people and I would sit there and get my book out [laughs] It was like, 'What are you doing?' It was quite embarrassing. I got teased quite a bit and people were saying, 'Why do you bring it? Surely you don't have to do that.' And, and the peer pressure nearly stopped me but you, you've got to.
You were still on Mixtard insulin when you started having problems with your insulin?
No, I'd moved to four injections at, well, multiple injections a day where you take one in, injection of a long-acting insulin which lasts for 24 hours and that's in your body just, as like a base line, base level, and then every time you eat you'll give yourself an injection of a fast acting insulin to cover that meal or to cover that food So they say, you know, generally most people have three meals a day, so you, in total you'll be having four injections a day but they literally, you can adjust that to however many times you eat. And I'm still, I'm doing that now still, that's what I still do, because it's a lot better for sort teenagers and young adults because on Mixtard 30 you have to take the insulin at set times, specific times and you've no flexibility, you know. You can't have a lie in like, I'd hate to do it now because I love having a lie in and like when I've not got a lecture till one o'clock, you know, I've, I love to stay in bed [laughs] But you can't do that on the other regime.
Fixed insulin regimen
But I got on with it. The hardest thing to deal with was, for me was, the change in food and the routine. There, the, when I were first got diagnosed I was on Mixtard 30 in the morning and Mix, Novomix, no sorry Novomix 30 in the morning and Mixtard 20 in the evening. And that changes because that was twice a day and then I changed to having it four times a day every time I ate which didn't work out for me because it wasn't.
The routine was a pain, pain and then all of a sudden the routine just went out the window and I found that even difficult than, even more difficult than the routine was. But I got on with it. The extra food was quite nice actually. I enjoyed the extra food that I got to eat with all my snacks in between meals. The hardest thing was cutting down on chocolate but I soon learnt that just because you have diabetes doesn't mean that it rules your life. It means that you just have to mix and match. Whereas before I had a whole chocolate during the day and all that happened was it got changed and I'd say I had half a chocolate during the day. Just it doesn't mean that you have to quit having all the food that you need and stuff like that. You can, what I was always told by a diabetic nurse is, was to rule your diabetes, don't let your diabetes rule you.
I think the routine actually made my life better. Because before I was eating whenever I wanted to. You know what I mean. I was pigging out quite a lot during the day and stuff like that but when I got the routine it actually helped me to bring my life together sort of thing. I was in at certain times to eat. I wasn't late home and stuff like that, you know. Because I had to, obviously I have to have a snack in the evening time so I can't be too late in coming home in the, of an evening. And to be honest it actually helps a lot.
Humalog? Okay, and you had to take that twice a day?
Yeah. Because I had half long acting and half fast acting. I had - I think I had one with breakfast and one with tea, and that took me through the night.
And how did you adjust to that? Did you have any problems with that, or not?
I - it was a bit odd, obviously, but I had - they'd given me a structured regime, something you must eat, here, here, here. And that was good for me, the fact that they told me what to do because it would be a bit daunting being left to yourself. So, yeah, the structure helped me, because they tell you when to eat, how much carbohydrate, roughly. It's quite advisable to do it with a parent or someone, [laughs] because even now I sometimes, there are some things I don't see that I'm doing wrong. If you get like an outsider view of someone who knows you really well, like my mum and my dad, they can just tell what's going wrong. So at the beginning they were like learning with me, and saying, 'Oh I think it should be this many units' and I'd be like yeah I sort of agree.
So it is a learning process to start with?
Yeah, definitely.
So for how long were you on the Humalog?
Quite a long time, it's only [pause]. Four or five years? No about four years.
So that takes you to when you were sixteen years old?
Yeah, roughly.
They suggested you change the insulin, or you suggested it?
I had - I kept going really low in the mornings, and then bouncing high in the aft - evenings, and although I worked closely with the diabetic team, they couldn't - we changed my diet, we changed how - what place you did it, because that affects it and - we just tried all the variables, and they discussed it with me. They said, 'Do you want to do this?' and I said 'Yeah, okay I'll try it', and then - yeah, they suggested it. They didn't tell me I had to, because obviously it's your choice.
And then you get to choose.
So you started on four - you are on Lantus and NovoRapid now?
It's still Humalog, but it's just a different type, different mix. It's just fast acting. And then the Lantus is really long acting. You have to do that once and then you have to inject for each meal.
So what happened about changing the pump? You described a bit of that before?
It was really difficult. Because going from something that's, well, because with the pump you just took, you just, you had a certain bolus that goes in, you know, every hour or something. And then, and then you, whenever you eat you take a certain amount of extra. You sort of press it in and take that amount extra insulin. So to go from constantly being aware to changing to two injections, where it's only two times a day that you need to be aware of it, was quite difficult. Because you, it's, I don't, to not like have it on you is difficult because, because it was on me I was always aware that I had to put it in. But to go for two injections which aren't always in my pocket or in my bag, to like, you know, it's, be teatime and my mum will say, 'Take your insulin'. I have to go all the way down to my room and change the needle and, and do all that. Which was difficult because it was, it was like she was nagging me. Like I know she wasn't at all, but it felt like, it felt like I was being nagged to take my insulin. And it shouldn't feel like that, because it should be natural. But just, it was difficult. And it probably took me about six months to get used to it and back into, you know. It was like when the pens run out, you have to change it, and I just, I didn't like, I don't like doing that. I still don't like doing that. Because it just, it just takes time. It's, but it, I suppose it's not really that, because it doesn't take too long. But it's just the fact that it's time that you have to be dealing with it. Which, I mean I probably deal with my diabetes the wrong way. I like to sort of block it out. And it does end up mounting up on me. Which I really don't mean to do. But in another sense it, it just, it's easier that way.
Could you tell me about the name of the insulin that you're using at the moment?
It's Mixtard 70/30.
And you've had other types in the past?
Yes, I think I've, the mixes have been different like of, you know, the 70/30. I think the percentages have been slightly different. But, and then I've used ActRapid a lot as well. And just, I'm not too sure on the whole background of what the insulin type was. I don't really like getting into all of that a lot of the time.
Do you know how long you've been using this particular insulin?
It will have been one, two, three, about three, about three and a half years or so. So it seems it's, for me it's working really well. There's talk about me maybe going on, back on to four injections. But I'm not sure about that. I don't know if, I don't know if it's for me.
Finding the right insulin routine depends on being aware of what your eating patterns are likely to be and checking the results with daily glucose tests, especially when you unexpectedly eat more or less than usual. (See also 'Diet and diabetes', 'Doing blood glucose tests' and 'Managing diabetes as a teenager'.)
What are the different types of insulin?
The insulin used by Type 1 diabetics is made in one of three ways:
- Animal - made from animal sources like pork or beef
- Human - not from humans but made in a lab to match human insulin)
- Analogue - made in a lab to have the same effect as insulin, but designed to work at different speeds
These days it is more common to use human or analogue insulins.
There are many types of insulin available but their basic difference is in how quickly they take effect and how often they need to be injected.
Here young people talk about the types of insulin they have used, the one they are currently using and why some have changed their insulin routine.
Some young people preferred not to change their current insulin routine because they were worried it might mean increasing the number of injections per day. Others described how, since changing their routine, they no longer need to eat snacks between meals meaning that their lives had become much easier.
She does not like the idea of injecting more than two times per day.
She does not like the idea of injecting more than two times per day.
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What type of insulin are you taking?
Right now I'm on Humalog mix 25.
And what has been your doctor's response when you said only two, twice a day?
No he was fine with it, like whatever works for me, that's what he said, would I consider it and I said no [laughs].
I think because I was on another insulin before where I had to eat six times a day, you know, breakfast lunch and dinner. Plus three snacks after each meal and well not between not after each meal but you know in between, between your breakfast and lunch and. blah, blah now with this insulin that I'm on, I don't have to eat any snacks, so it's easier for me.
Most of the young people we talked to had changed their insulin routine one or more times since they'd first been diagnosed. Many did so because they'd found it difficult to control their diabetes during their teen years. They described how their control worsened as they reached puberty due to hormonal changes. They experienced more frequent and unexplained hypos (low blood sugar) and/or highs. As teenagers, people wanted to find an insulin routine which allowed them to be more flexible and independent. (See also 'Hypos', 'Highs'; 'Diet and diabetes' and 'Managing diabetes as a teenager'.)
Recently he changed to another insulin regimen because he started to have problems controlling...
Recently he changed to another insulin regimen because he started to have problems controlling...
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NovoRapid and Insulatard.
And you take four injections a day?
Four injections a day. Three of NovoRapid for your breakfast, lunch and dinner, and then the Insulatard keeps you going - keeps it for the rest of the day, keeps it at the main rate, and you just take your NovoRapid for your meals so covers for that and'
Are you happy with the insulin you are taking or have you talked to the doctors about other type of insulin, or have they told you about'?
I haven't been on this for that long so I can't really judge it but I just try and work out the same pace but I've had one good test with it so far, which is a good start but it - it's mainly - if you're having problems getting your HbA1C right it's probably a lot to do with your age and the hormones and everything. And it's just really hard to get it thingy because when you're a child it's really easy, because your body's just there. As soon as you change from puberty your body's going everywhere.
They have told you about it at the clinic?
Yeah, I've been reading it in a magazine that loads of people have problems with it and I just reckon that it's your age and all that.
They changed the insulin type recently?
Yeah, last year.
Last year?
Yeah.
What were you on before? Do you remember?
Humulin and Humulin I.
So that was just two injections a day?
Yeah.
He likes his new insulin regimen but strongly dislikes the disposable pen that he needs to use...
He likes his new insulin regimen but strongly dislikes the disposable pen that he needs to use...
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I'm on. Well I've got two types. I've got Humalog and Lantus. Humalog is a short-acting one. I take it in conjunction just before every meal and it peaks after about fifteen, twenty minutes. It's effective for about an hour and it still gives some effect for up to, I think it's up to two and a half hours. Do that before every meal.
And I've got Lantus as well because, which is a background one. It's a long-acting one take one, one much bigger injection once a day. I do it in the evening before I go to bed but it needs to be roughly every 24 hours. And that sort of acts as a top up. So if I have a snack or anything during the day it doesn't go straight off the chart, straight away. And to be honest I really quite like doing it that way because it gives, gives me a lot more flexibility than having to inject 20 minutes before I eat. I can just do it and with the Humalog as well I can do it just after I eat as well which is really useful. Like some, like on a plane or something so if you're getting - come round with in-flight meals save you having to wander past this cabin crew while they're serving it, just wait until after and then go and do it. It's yeah I do like it a lot more that way.
I used to be using, I used to use Humulin I instead of, instead of Lantus well they changed it to Lantus. Came out, it's relatively new [laugh]. They changed they changed me onto that because they thought I would be slightly better suited. I went through a, I went through a phase of having quite low blood sugar levels first thing in the morning but if I'd cut back on the Humulin I anymore it would have been a bit too high for the rest of the day. So instead they said ok we'll try you on this new type of insulin. It's what , they produced all these graphs showing how effective they are and that the lot more effective over a steady period whereas Humulin I would peak in the middle of the night and then that would leave me a bit low in blood sugar in the morning. So yeah they tried me on that and then I do like it. One thing I don't like about Lantus is the stupid disposable pens which are absolutely rubbish and the worse things ever invented [laugh] ever for diabetes care. But yes anyway.
Tell me a bit more about that?
The the pen I use for the Humalog I had two the same for the Humulin I I've got the same cartridges as Humalog. It was fine. You could dial up however many units you want in single unit increments and if you, like put in too many you can just turn it back and then just push the button down on the end and it would go in. And the cartridges, 300 unit cartridges, yeah up to 60 units at one time which I don't actually. I've never had to do more than about 14 I think was my highest [laugh] at one point. But I mean you've got the potential to go all the way up to 60. With the Lantus, they're fairly well built, the Humulin I once I mean I've been using the same one since I was diagnosed. I mean that's what four and a half years now. And there's one crack on the casing that goes around the cartridge where I dropped it on some concrete [laugh] but apart from that it's fine.
The Lantus one was their stupid flimsy plastic. It's just, they're disposable as well so it's all sealed up. So what you do is you stick the needle on the end, take the packaging off that. Put the lid back on and away you go. It only goes up in two unit amounts. You've got to pull a thing back to get it to, before you're able to use it. And if you've doubled up the wrong amount of insulin you can't put it back in again to cleanse it, you've got to just count the clicks really carefully and you can never get the last one i
She found that as she grew up her insulin regimen was too inflexible and unpractical.
She found that as she grew up her insulin regimen was too inflexible and unpractical.
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Yeah it was it was syringes which was a complete pain in the neck. As soon as I stopped syringes it all got a lot better.
And I used to be on two injections a day and so you had to mix the short-acting and the long-acting insulin. So drawing up the syringes used to take, well probably not long but it seemed like quite a long time. And you had to sort of make sure the air bubble was out and make sure that there was enough insulin in the cartridge before you started drawing anything. So yeah my parents did that for a while and then I started doing that but pretty much as soon as I started injecting myself I decided that this was far too complicated. And so I started using pens which made my life a lot easier.
So you changed to pen and which type of insulin with the pen?
ActRapid and Monotard I think. Would that be right? Yeah
Initially?
No. First of all I went on to a 30/70 mix Humilin I think it was called.
Ok.
Because that, from a pen. But then that wasn't working out right because the 30/70 mix just didn't suit me. So then I went onto having ActRapid three times a day and then Insulatard at night from the age of maybe eleven or twelve. Yeah for the first two or three years we tried out lots of different ways of doing it but it never worked.
Tell me a little bit more about when you had problems with the insulin, the 30/70?
Ok. Well the thing about 30/70 was that kind of if you have X units at breakfast you're still going to have X units in your system at lunch so it didn't take into account like some days if it was raining then I wouldn't be playing sport. I wouldn't be running around at playtime but obviously when you inject yourself at breakfast you don't know that necessarily that it's going to rain at 11'30 in the morning so you had no control over the long-term insulin that you injected in. So I'd have problems if suddenly my routine changed. And initially that was less of a problem because I was at primary school where it was very much, you know, playtime is 10'00 and then 11'00 and things are sorted. But as I got older and had a slightly less regulated life it became more of a problem.
And then the same in the evening and the problem with the 30/70 insulin was that you had to have snacks. Which is fine at break or something because everyone has snacks but like, I'd eat dinner and I don't tend to be hungry after dinner before I go to bed so you end up eating food that you don't really want and you don't really need. And it was just really complicated because you always had to have things available. And I think also you could. There was no flexibility because if you, if you increased the insulin overall you'd increase both the long-term and the short-term so when I started we used the exchange rate. So every ten grams of carbohydrate I guess was calculated for the amount of insulin I'd have but you know sometimes you might have more and then you couldn't just stick up the short-term insulin because that would also stick up the long-term insulin. So it just got too complicated. I'd be high or low and I'd kind of. As I was injecting myself before dinner or breakfast or if my parents were they'd know almost that I was going to go high but they couldn't do much about it because I would have had to have eaten more at breakfast if I wanted to eat more at lunch again, sort of thing.
So you found the whole regime inflex
Her insulin was changed to give her greater flexibility but she reacted badly to the new insulin...
Her insulin was changed to give her greater flexibility but she reacted badly to the new insulin...
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They don't know what caused it at the moment. They keep saying it's viruses. They can't put their finger on it. All they can think of was the insulin I wasn't reacting well to. But apart from that, my blood sugars have, are stabling now but they did go up and down because I have been so ill. And that they have gone up a couple of times but not to a level where I've ended up back in hospital. So'
Which insulin were you originally'?
I was on Humulin I and Humulin S, cot, no vials I was on and the actual injections. They then changed me over to the NovoRapid and Lantus which, that didn't work. They put me on pen four times a day with that one but that didn't work so when I went into hospital'
Why did they change it, did they explain it to you?
They thought it was better because I was on twice a day. I had to have them at the set times. They didn't, they wanted, the, me to run the diabetes rather than the other way round. They said, on four injections a day I could, if I wanted to lay in I could have my injection a bit later and eat a bit later whereas before I had to have my injection at 7 o'clock in the morning and then eat within half an hour. I had no flexibility. At night time I had to have my insulin at 5 o'clock and eat my dinner. So if I wanted to go out with friends and eat at 8 o'clock at night it was very difficult to do that. Whereas they said on the four times a day, if I wanted to eat at 8 rather than 5 then I could have a little injection at 5 o'clock with a small sandwich, then have my main meal at 8 o'clock with my main injection. So they said, it just, it helped me to control it more.
Many of the young people we talked to said that basal/bolus regime gave them flexibility, independence and control. They said that they didn't have to wait before having a meal; they can inject and eat straightaway. However they also said that knowing more about carbohydrate counting helped (see also 'Diet and diabetes'). One young man felt a bit upset because he couldn't see any noticeable improvements at the start of his new regimen. A young woman said that the new-found freedom made her less cautious and she started to eat more chocolate than usual. Young people really appreciated the fact that their new regime meant that they were now able to have 'a lie in' rather than having to wake up early at weekends just to do their insulin injection.
Talks about how she learnt to do carbohydrate counting when started using fast acting insulin.
Talks about how she learnt to do carbohydrate counting when started using fast acting insulin.
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Counting because, with the rapid acting insulin you're giving yourself the exact amount of insulin that you require for how much you've eaten and so you have to work out how much carbohydrate you've eaten how many grams of carbohydrate you've consumed and the, say for me, for every 10g of carbohydrate I eat I give myself one unit of insulin. So I work out a slice of bread is, I know is about 15g of carbohydrate and a size of, bowl of cornflakes, say, I would normally eat is about 40g, so I know to give myself 4 units of insulin for a bowl of cornflakes and so you're, at the beginning when I started carbohydrate counting they gave me this big book with photographic atlas to carbohydrates, or something, it was called and it had on each page six different pictures of different portion sizes of a certain type of food. So the first page was porridge and it had six bowls of porridge. One massive, going down to small. And, so if I had bowl of porridge I'd get my book out and be like, 'Hmm. Which, which bowl does mine tally to.' And then it tells you how many grams is in it.
And then it, it goes through loads of different food types, different cereals, and then potatoes and pastas and pizzas and rice and apple pies and it has some random things in it. It was so funny, and my friends just thought I was insane. Going out for supper or we were eating in the university canteen where there are hundreds of people and I would sit there and get my book out [laughs] It was like, 'What are you doing?' It was quite embarrassing. I got teased quite a bit and people were saying, 'Why do you bring it? Surely you don't have to do that.' And, and the peer pressure nearly stopped me but you, you've got to.
Says that one of the advantages of her insulin regimen is that she can have a lie in.
Says that one of the advantages of her insulin regimen is that she can have a lie in.
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No, I'd moved to four injections at, well, multiple injections a day where you take one in, injection of a long-acting insulin which lasts for 24 hours and that's in your body just, as like a base line, base level, and then every time you eat you'll give yourself an injection of a fast acting insulin to cover that meal or to cover that food So they say, you know, generally most people have three meals a day, so you, in total you'll be having four injections a day but they literally, you can adjust that to however many times you eat. And I'm still, I'm doing that now still, that's what I still do, because it's a lot better for sort teenagers and young adults because on Mixtard 30 you have to take the insulin at set times, specific times and you've no flexibility, you know. You can't have a lie in like, I'd hate to do it now because I love having a lie in and like when I've not got a lecture till one o'clock, you know, I've, I love to stay in bed [laughs] But you can't do that on the other regime.
Some young people found that more fixed routine helps them to manage their diabetes better. One young man recommended doing a set routine when you are first diagnosed because it would be less scary than 'going it alone'. A young woman who used to have a insulin pump changed back to a fixed insulin routine and doesn't see the need to change to a four injections a day regimen.
He found his fixed insulin regimen a pain but prefers it to the flexible one.
He found his fixed insulin regimen a pain but prefers it to the flexible one.
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The routine was a pain, pain and then all of a sudden the routine just went out the window and I found that even difficult than, even more difficult than the routine was. But I got on with it. The extra food was quite nice actually. I enjoyed the extra food that I got to eat with all my snacks in between meals. The hardest thing was cutting down on chocolate but I soon learnt that just because you have diabetes doesn't mean that it rules your life. It means that you just have to mix and match. Whereas before I had a whole chocolate during the day and all that happened was it got changed and I'd say I had half a chocolate during the day. Just it doesn't mean that you have to quit having all the food that you need and stuff like that. You can, what I was always told by a diabetic nurse is, was to rule your diabetes, don't let your diabetes rule you.
I think the routine actually made my life better. Because before I was eating whenever I wanted to. You know what I mean. I was pigging out quite a lot during the day and stuff like that but when I got the routine it actually helped me to bring my life together sort of thing. I was in at certain times to eat. I wasn't late home and stuff like that, you know. Because I had to, obviously I have to have a snack in the evening time so I can't be too late in coming home in the, of an evening. And to be honest it actually helps a lot.
It was reassuring to have a fixed regimen when first diagnosed.
It was reassuring to have a fixed regimen when first diagnosed.
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Yeah. Because I had half long acting and half fast acting. I had - I think I had one with breakfast and one with tea, and that took me through the night.
And how did you adjust to that? Did you have any problems with that, or not?
I - it was a bit odd, obviously, but I had - they'd given me a structured regime, something you must eat, here, here, here. And that was good for me, the fact that they told me what to do because it would be a bit daunting being left to yourself. So, yeah, the structure helped me, because they tell you when to eat, how much carbohydrate, roughly. It's quite advisable to do it with a parent or someone, [laughs] because even now I sometimes, there are some things I don't see that I'm doing wrong. If you get like an outsider view of someone who knows you really well, like my mum and my dad, they can just tell what's going wrong. So at the beginning they were like learning with me, and saying, 'Oh I think it should be this many units' and I'd be like yeah I sort of agree.
So it is a learning process to start with?
Yeah, definitely.
So for how long were you on the Humalog?
Quite a long time, it's only [pause]. Four or five years? No about four years.
So that takes you to when you were sixteen years old?
Yeah, roughly.
They suggested you change the insulin, or you suggested it?
I had - I kept going really low in the mornings, and then bouncing high in the aft - evenings, and although I worked closely with the diabetic team, they couldn't - we changed my diet, we changed how - what place you did it, because that affects it and - we just tried all the variables, and they discussed it with me. They said, 'Do you want to do this?' and I said 'Yeah, okay I'll try it', and then - yeah, they suggested it. They didn't tell me I had to, because obviously it's your choice.
And then you get to choose.
So you started on four - you are on Lantus and NovoRapid now?
It's still Humalog, but it's just a different type, different mix. It's just fast acting. And then the Lantus is really long acting. You have to do that once and then you have to inject for each meal.
Initially she found it difficult to go back to injecting insulin after using a insulin pump. She...
Initially she found it difficult to go back to injecting insulin after using a insulin pump. She...
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It was really difficult. Because going from something that's, well, because with the pump you just took, you just, you had a certain bolus that goes in, you know, every hour or something. And then, and then you, whenever you eat you take a certain amount of extra. You sort of press it in and take that amount extra insulin. So to go from constantly being aware to changing to two injections, where it's only two times a day that you need to be aware of it, was quite difficult. Because you, it's, I don't, to not like have it on you is difficult because, because it was on me I was always aware that I had to put it in. But to go for two injections which aren't always in my pocket or in my bag, to like, you know, it's, be teatime and my mum will say, 'Take your insulin'. I have to go all the way down to my room and change the needle and, and do all that. Which was difficult because it was, it was like she was nagging me. Like I know she wasn't at all, but it felt like, it felt like I was being nagged to take my insulin. And it shouldn't feel like that, because it should be natural. But just, it was difficult. And it probably took me about six months to get used to it and back into, you know. It was like when the pens run out, you have to change it, and I just, I didn't like, I don't like doing that. I still don't like doing that. Because it just, it just takes time. It's, but it, I suppose it's not really that, because it doesn't take too long. But it's just the fact that it's time that you have to be dealing with it. Which, I mean I probably deal with my diabetes the wrong way. I like to sort of block it out. And it does end up mounting up on me. Which I really don't mean to do. But in another sense it, it just, it's easier that way.
Could you tell me about the name of the insulin that you're using at the moment?
It's Mixtard 70/30.
And you've had other types in the past?
Yes, I think I've, the mixes have been different like of, you know, the 70/30. I think the percentages have been slightly different. But, and then I've used ActRapid a lot as well. And just, I'm not too sure on the whole background of what the insulin type was. I don't really like getting into all of that a lot of the time.
Do you know how long you've been using this particular insulin?
It will have been one, two, three, about three, about three and a half years or so. So it seems it's, for me it's working really well. There's talk about me maybe going on, back on to four injections. But I'm not sure about that. I don't know if, I don't know if it's for me.
Last reviewed December 2017.
Last updated December 2017.
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