Nicky - Interview 18

Age at interview: 46

Age at diagnosis: 42

Brief Outline: Diagnosed 4 years ago. Nicky was taking metformin but having established very good control through diet and exercise she no longer takes any medication for diabetes. She also has hypothyroidism.

Background: Nicky is an IT software designer and is married with two teenage children. Ethnic background/Nationality: White British.

More about me...

Nicky found out by chance that she had diabetes. She went to see her GP with a urinary infection; a urine test indicated she had diabetes. Her GP told her to lose weight (she wore size 22 clothes) and take up sports such as squash - advice she felt was inappropriate for a woman her weight and size. She found herself further at odds with her GP when he said that the diabetes would shorten her life by 15 years and implied that there was little she could do about it. 

As a physicist and IT consultant, Nicky knew how to use the internet to investigate diabetes and find out what other people were doing. She refused to accept that her life would be curtailed and her response to her GP and diabetic nurse, particularly to their dietary advice, was to question it, read up on it and test it. If something didn't work for her, she wouldn't do it. 

Having looked at US websites, she decided to test her blood glucose levels systematically after every meal and work out precisely which foods and in what quantities raised her levels. She wanted to learn how to control and manage her glucose levels herself. She discovered that, contrary to most UK diabetes dietary advice, carbohydrates (e.g. oatmeal, pasta and bread) raised her glucose levels. She read what others with diabetes (mainly in the US) had written about cutting carbs, and decided to work out a diet that suits her. She avoids certain carbs and has enjoyed experimenting with alternative foods such as linseed and almond flour for baking instead of cereal. 

Nicky has also approached exercise scientifically, testing her glucose levels to find out the best time to take exercise - which for her is about 45 minutes after eating. She is now in a routine, manages her diabetes well, and no longer takes metformin or any other diabetes medication. She has also lost 75 kilos in weight and is now a size 14. She goes to weekly karate club with her daughters which she enjoys. She does weight training, walks regularly and feels young, fit and content with life.

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

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.

Nicky knew she was overweight when she got the diagnosis but she felt so fit and healthy she didn...

So when they, when the nurse said well you've got diabetes, what did you feel?

Rubbish - of course I haven't. You know, I know diabetic people, you know, have got missing legs and you know, they can't walk properly and, all that kind of stuff, and that doesn't apply to me at all. And of course I eat this nice healthy low fat diet, you know, hey, of course I haven't got diabetes. Don't be stupid. And, in fact, it wasn't until the doctor had taken an A1c test, to confirm, that you know, I believed it at all.

So what was your weight like at that point. You said you'd been?

Weight was high. I'd gone up to about 115 kilos, just after the birth of my daughter (and don't ask me what that is in stones, I'm sorry I don't think in those terms). And I'd got that down to about 105 kilos at that time. That was a BMI of 33ish. But you know hey, I was eating healthily. I was reasonably active. We went for walks every weekend. Holidays were, and still are, (assuming a husband with a good back), mountain-walking type holidays, and couldn't possibly be diabetes. Ridiculous.

The other, the other part alongside the disbelief, was complete denial, because one of the first things my darling GP said to me was, 'This is going to knock 15 years off your life.' Gee thanks, doc, you know, sod off!

And the other thing is that I had these two young kids. I think they were about 8 and 10, maybe 8 and 11, at the time. You know, it was inconceivable to me that I was having a degenerative disease that was just going to tail off until, poof, there wasn't going to be anything there. So, no, that was definite denial.

Also what he told me to do was to lose weight. Well, you know, like every other damn woman in Britain, I'd been trying that for some years without any success. And to take up squash. Squash was going to sort my obesity problems. Okay, right!. You know' [laughs] bloody ridiculous. So my first reaction to anything is to go and learn about it so I. Oh and 'don't look on the internet because the internet is full of rubbish'. So, went on the internet, as you do, you know, [laughs].

Nicky enjoys cooking and now makes her own bread, tortillas and muffins without using flour.

The other response that I had as a fall out from the denial of diabetes was, 'Well I am going to figure out how to eat bread and muffins and all those other things'. And, you know, I'm a fairly keen amateur cook and I found ways of making low carb versions of these things. So, from time to time, I will make myself a low carb pizza base that's mostly based on linseed. And the three of us will have a pizza fest when elder daughter is off with a friend or something like that.

And there's a kind of pasta - I don't know if I'm allowed to mention brand names here - but there's a kind of pasta 'Dream Fields' pasta. It's an American invention, patented. What they claim to have done is locked away the carbohydrate content somehow... God knows how, but it works for about half the diabetics I know who've tried it. You know, there's a couple hundred people who I talk to regularly on the diabetic forums. And for about half of them it works fine, and I'm one of them, luckily. So I've now discovered a source of buying this stuff in bulk in the UK, and you know, we eat it perhaps once or twice a month as a, as a nice change of pace.

I make my own bread now, again based on linseed and vital wheat gluten. Thank goodness I don't have one of the common comorbidities which is coeliac because, you know that would really make my life very difficult. My tortillas are nicer than anything I can buy in the shops, I have a little stash of chocolate almond flour muffins in my freezer for when I need a muffin-fix. You know, I really do not go without anything these days. If I fancy it, I find a way of making it.

Nicky lifts weights when food programmes are on TV and recently joined a karate club with her...

The other thing that's important to do, because muscles aid in reducing insulin resistance and clearing glucose, is some kind of weight training. So I started doing that. I went to my local gym for about four sessions to learn how to, how to do it. And I, I own a set of free weights and two or three times a week I get those out in front of the telly - having discovered that I loathed and detested the gym environment and there was no way that I was going to spend any more time in there than I absolutely had to. So, you know, I learned the technique and I now, you know, do it at home. I also own an, an air walker when, when the weather is horrible. (It's that thing propped up in the corner that's I've just completely spoiled your camera view to.) But it's a very low impact treadmill type thing that, I started had quite profoundly arthritic hips and I didn't want to even think about jogging or even doing long distance walking. Again that turned out to be a side affect of the diabetes and has almost entirely gone away. But, if the weather's grotty, I'll I put up the treadmill- thing in front of the television and I have a rule I don't watch food programmes unless I'm doing something energetic, these days, which works.

And about six months ago, I took up karate by accident. My youngest wanted to do it again, she'd had a break and her teacher had given up and she'd found another school. And so I taxied both kids over to the karate thing, and the teacher assumed that I was there to try it out too, so, you know, rather than sit in a dark car park for an hour, I thought, okay, fine, we'll do this, and it turns out that I really, really, really enjoy it. I'm lousy at it, but, you know, hey it's ever such fun, and it's something that the kids and I can do together. And then they take it out on me at home as well, but you can't have everything. And, you know it strengthens our relationship. It's a fantastic form of cardiovascular exercise. It's also got a resistance element to it. We go twice a week, and that is a big part in my health and fitness routine, and it's also something that will continue to challenge me for the rest of my life.

Nicky reacted badly to some of the suggestions made by her GP when she was first diagnosed.

The other part alongside the disbelief, was complete denial, because one of the first things my darling GP said to me was, 'This is going to knock 15 years off your life.' Gee thanks, doc, you know, sod off! And the other thing is that I had these two young kids. I think they were about 8 and 10, maybe 8 and 11, at the time. You know, it was inconceivable to me that I was having a degenerative disease that was just going to tail off until, poof, there wasn't going to be anything there. So no, that was definite denial. Also what he told me to do was to lose weight. Well, you know, like every other damn woman in Britain, I'd been trying that for some years without any success. And to take up squash. Squash was going to sort my obesity problems. Okay, right, you know, bloody ridiculous! So my first reaction to anything is to go and learn about it so I. Oh and 'Don't look on the internet because the internet is full of rubbish'. So, went on the internet, as you do you know!

By controlling her blood sugar levels and exercising, Nicky dramatically improved the neuropathy...

And, at that point, instead of doing the filament test for neuropathy - they poke you with a plastic needley thing and if you go 'ouch' you're all right - he did a tuning fork test. And, again you can feel that, or not feel it, depending on what degree of nerve damage you have and how far it had it's up your legs. And he discovered that, at this point, I had deep neuropathy that was three quarters of the way up my shins, but it didn't affect the surface of the skin on my feet, so I could still feel this damn pinprick thing. But the neuropathy was there and was going to get worse unless I did something about it. And so, that again was another critical thing, another diving straight back into the research literature, and finding out what kind of blood sugar levels damage nerves, or, particularly, the nerve sheathing.

It's the myelin sheathing thing that goes first, and it turned out that that was pretty well anything above seven millimoles. So once I'd got up to eight, it was important to panic, to do something useful about my diet, to go out for a walk and keep below seven and above four at all times. And after a few months of doing that, my feet started to hurt like hell. Absolutely excruciating pain - you know the fairy story about the mermaid who wished and wished and wished for feet, and her feet, she got feet but it was like walking on knives - that's what it felt like for, for months and I can feel, if I ate something and I went too high, I could feel the pain starting and then increasing as I went up through the, the blood sugar mark. And it took months and months and months for that to heal completely, but it finally has, and I have no neuropathy at all by anybody's tests and in fact, that was the, the trigger that decided me that I'm as fit as anybody else and karate would be a good thing to do. I could probably play squash now as well, except I don't enjoy it.

So, do you think you've reversed it?

I'm sure I have reversed it and I, I've proof that I have reversed it - through diet and exercise and keeping below damaging numbers - through testing and, you know, finding out about what those, what produces those damaging numbers.

Nicky's family help her to monitor her diabetes. She thinks her children don't worry about her...

The family have been incredibly supportive of what I'm trying to do. Even through my rattiest moments, bless them. They are now actually more strict with my diabetes control than I am. If, if I eat something that they think I shouldn't eat you know, they, they will keep an eye on the clock and poke me to test an hour later, and if I do test and it's gone up too high, they'll be shoving me out the door for a walk, occasionally coming with me, but they are very supportive.

Do you think they worry about you, I suppose, is what I'm getting at?

I don't think they do any more. Again the karate was really the icing on the cake because if I can beat them and, you know, we went to a karate training course a few weeks ago, where it was, it was the bank holiday weekend, three days of six to eight hours of karate a day and I was fitter than they was, so I think they've given up. I beat them in things like jogging three times round the football pitch [laughs]. And if I can continue to beat them at sparring sessions then I think that they've stopped worrying about me.

Nicky knows many people with diabetes who are not overweight and believes that the main cause is...

I really do not believe that obesity is a primary cause of diabetes. For a start, I know lots of obese people who do not have diabetes. I also know a fair number of diabetic people who have never in their lives been overweight. What seems to be the direct link is how much truncal fat you have. How much fat there is around your middle and, and coating your organs. But the direct link, obese-and-diabetes link, I think is completely the other way round than the normal take on it. Obesity causes insulin-resistance, I think most obese people actually do have insulin-resistance, and therefore are probably putting a strain on their pancreas. But unless they have the additional defect in their pancreas, that people with diabetes have as a gene-related thing, it's not going to do any harm at all. They are not going to tip over and have the, the huge loss of beta cell function that diabetics do.

So what do you think caused yours then?

I think I have a genetic problem that runs throughout everybody I know in my father's family now looks like they are diabetics. My mother's family, nobody has diabetes that we know of, but my mother was a very small apple shaped person who died in her early seventies of effectively a heart attack.