A Dafne account

Important note: nothing in this piece must be construed or used as medical advice. It is a personal reflection designed to give a flavour of the Dafne course for type 1 diabetics. ***Many ideas and principles used within Dafne are likely to be completely inappropriate for type 2 diabetes.*** Dafne involves equipping type 1 individuals to make the adjustments suitable for themselves. Any type 1s wishing to find out more about any of the ideas expressed here should consult their own doctors or diabetes professionals.

Getting to know Dafne – Dose Adjustment for Normal Eating

Maybe they just wanted a challenging group on whom to try the inaugural Dafne course in this area or maybe my DSN was just playing a cruel trick on the organisers, but somehow, when they were casting around for prime candidates, my name came up. The fact that the course was set up locally at all is a tribute to a DSN who pushed long and hard, even having to come up with the funding from a pharmaceuticals company – the local PCT wasn’t about to dip into its pocket.

I have always been deeply cynical about what I gathered was essentially carb counting, but, on the basis of everything Dafne veterans had said, felt it was worth staying open minded. I was also curious because, despite strenuous efforts, I could find nowhere on the web that would actually detail what was involved. There were plenty of general pieces, but the specifics seemed to be guarded with Masonic fervour.

Add to this the fact that it was an inaugural course in this area, and I felt it was worth taking a week away from work and bringing along all that this group stands for in the hope that it would help provide useful input for subsequent courses.

So it was that I pitched up at the preliminary meeting with the course tutors a week ahead of the start. The heroic DSN was one tutor. The other was a dietician. Now there’s a job title to get the hackles up!

The preliminary meeting

Mind open – with heavy-duty wedge – it was actually very enlightening. The tutors has, apparently, learned “lots of new stuff” during their Dafne training and seemed a bit gobsmacked at what I was doing. For example, they seemed to be expecting everyone to be taking the (probably wrong) dose of basal that their quack had told them, and then probably a fixed amount of bolus for every meal. So when they discovered that I adjusted hugely and stuck in correction doses any time I needed them, it was a bit jaw-dropping all round. “Please don’t expect the other course members to be doing anything like that, and bear with them,” they told me.

There were some questionnaires about attitudes and feelings, which I think will be repeated in a month or two, so Dafne can show that people are less depressed and anxious after they’ve done the course. My bg diary was inspected (again, stunned looks!), checks on injection sites, getting medical details up to date etc, and arranging an HbA1c.

Then they announced they wanted everyone to start on a baseline regime which they’d tweak during the week. Dafne has discovered, they said, that people tend to take too much basal which actually buggers up control. So would I please take 24u of basal.

At the time the figure seemed plucked from a hat. It certainly hadn’t reflected the fact that it was the figure I already used. In retrospect, I’m certain they were applying some variant on the principles of 0.5-0.8 units of insulin per 1kg of body weight to give a TDD (total daily dose), that most people need about one unit of basal per hour, and keeping the basal and bolus split somewhere near 50/50.

They also asked that, on the morning of the course, I take 1u of rapid for every 10g of carb. Fair enough. I was doing one to nine anyway.

So off I went for my blood test, fairly convinced that, as I already had my insulins worked out and used adjustment doses, there probably wasn’t much more to know. But mind still open…

My HbA1c, incidentally came back at 7.9, which was a disappointment as I thought it would be about 7. All the lipids and trigs and creatinine, TFT and stuff were fine.

Day one

On arriving at the venue – a council-owned former manor house or similar, with huge grounds, mixing the outward style of a country house hotel and the inward style of a youth hostel and clearly used as a conference facility for local businesses, schools etc – first impressions of the other hand-picked guinea pigs were good. A friendly bunch comprising three blokes and a woman. We were to be five in total. A sixth didn’t show. Tragically his control had seen him admitted to hospital just in advance of the course. Hardly a representative group, we ranged from 30s to 60s with a mix of childhood through to late onset. I suspect they deliberately looked for characters they felt could stand up to whatever the initial run-out of the course threw up. They were probably too correct for their own good!

Immediate conversations revealed that carb counting and adjustment etc was a new idea to just about everyone. The order of the day tended to be fixed doses for meals, erratic and high bg or reasonable control more by accident than design.

In the meeting room a Dafne assessor sat in the corner. I guess this might be because it was a first course. She took no part in the first day’s discussions, but was more forthcoming on trickier points of Dafne recommendations or clarifications as the week progressed without ever really joining in.

Introduction

Session one was introductory, with the issuing of large packs containing a Dafne handbook, diary, carb counting book, leaflets, quiz booklet and a pile of other stuff I still haven’t got through. Then out with the flip chart and a chat about ground rules we wanted for the course. I think they were anticipating pledges of confidentiality, agreement on how we’d take turns to speak etc. It was here that the group character instantly asserted itself. “We’re all adults who’ll treat each other courteously. We’re not bothered about confidentiality. We don’t need rules.” And so it was the “rules” flip chart remained starkly blank except for a rule about mobiles being turned off that the tutor had sort of sneaked up as a discussion starter until everyone caught the plot and put an end to it.

Then we had to express personal goals in diabetic terms and what we expected to achieve from the week. All written down in the appropriate book from the Dafne folder. Again there were a lot of “to get better control” answers. I think the tutors were hoping for something a bit more meaty and angst-ridden.

Diabetes background

The first proper session was on the basics of diabetes: types – type 1, type 2, gestational, LADA and MODY, how each affects the body, compared with non-diabetics, and the range of treatments. Pretty standard stuff. This moved on the targets for bg control. These were fairly predictable (5.5 – 7.5 fasting; 4.5 – 7.5 pre-meals; 6.5 – 8 bedtime) and the whole programme is geared to achieving these as much as possible.

Food basics

Session two was on nutrition, starting with the Dafne basics: Dafne isn’t about “healthy eating” per se, because it’s not looking at preventing heart conditions etc. I took this to mean “forget all that dietitians have ever told you if you thought it related to bg control”. Dafne is only concerned with carbs and the insulin that will be matched to them. So we were to be spared the healthy eating homily. That was something.

This general session then looked at the constituents of food, most specifically identifying carby foods and explaining why we weren’t going to bother too much with fats and proteins. The idea of a Dafne “carbohydrate portion” was introduced – otherwise referred to as the CP. This is the basic Dafne measure of carbs in food. Every carb counting system has something similar. In this case a CP represents 10g of carb.

A carbohydrate portion book with which we’d been issued identified a wide range of common foods and assigned each one a CP value per portion. For example, an egg-sized boiled potato (60g) has 1 CP. The book covered everything from breakfast cereals to MacFlurries. For those items not specifically listed, we were encouraged to find the nearest equivalent, so, for example, cake might be counted at the same value as sponge pudding.

The approximations surprised me somewhat, having been used to counting every last carb. This is very much round-it-up or round-it-down and don’t get too hung up on fine detail.

And ALL vegetables (apart from the obvious starchy ones such as potato and sweet potato) are not counted at all. Neither are pulses – everything from chick peas (including pureed chick peas as in houmous) to lentils and beans are treated as free foods. This was explained by some talk of how carbs affected bg, explaining about low GI and how the fibre in veg and pulses slows down the carb release.

Conversely there was talk about the high GI foods/drinks as hypo counteracters. Why Lucozade and fruit juice work and why advice many people have had to eat chocolate for hypos is bad (the fat slowing absorbtion).

Lunch on the course was provided each day. Indeed it’s an integral part of the course. So the carefully chosen meals of lasagne, veg, fruit etc etc arrived and everyone, carb portion book in hand, had to identify the relevant carbs, first estimate by eye and then check on scales the portions in terms of CPs. Special dietary needs had been catered for too. Then it was a case of 1u of rapid for each CP.

Dose adjustment

Other sessions that day covered the basics of dose adjustment, bg monitoring and ketones. Packs of ketosticks were issued, as were scales (courtesy of another pharma company).

The initial advice on testing shocked me. Four tests a day. Before meals and bedtime. Later in the week this was to become less shocking, but having felt the first day had covered stuff I pretty much knew already followed by what sounded like loony advice I wasn’t feeling entirely favourably disposed to Dafne.

It wasn’t helped by the adjustment rules for high bg: only before meals and bedtime and then to a strict scale. 1u was taken to reduce bg by 2-3mmol/l. Fair enough. I’d always done 1u = 2mmol/l, but here we had to err on the conservative side, so it had to be taken as 3mmol/l. And this was only permitted to cover levels above the top of the target levels before each meal. And again we had to err to the top end. So, for example, at lunch, only clear 3mmol/l increments above 7.5 were allowed to be compensated for.

Conversely 1CP (10g carb) was taken to raise bg by 2-3 mmol/l. Fine. That accorded with what I already did.

Then, add to that the insistence that an HbA1c below 6.5 was NOT something to aspire to because the health benefits were minimal and the risk of hypos much greater.

The day ended with a one-to-one review of bg that day, goals etc. I definitely left feeling unsure about whether this much irritation was worth the hassle. It definitely seemed very rule-bound and rigid. But, having got there, there was only one sensible way to play it. I’d let them do it by the book – their book – and judge the results at the end of the week. It would be a waste of my time and theirs if I went off and did my own thing at night, out of their sight, however tempting it was to throw in a few extra units to get the numbers down nearer 5.

I have to say, the others on the course found the whole process a complete revelation and, with no pride in previous personal systems clouding their judgement, began to see some light of salvation, even if I was fretting over being tied to the top end of pre-meal targets of 4.5-7.5 (5.5-7.5 at breakfast and 6.5-8 pre bed).

Day two

Day two started, as every day did, with a group look at everyone’s bg/dosage diary and discussion about the results.

Insulins:

The next session was an in-depth look at all the insulins that are out there and what they do – their profiles, speed of onset etc. It covered all the expected advice about how to store it, its shelf life and a check that everyone knew how to inject properly, rotated injection sites etc. All the generally used insulin pens were there to be examined and there was an Exubera inhaler too. Prescriptions were available for those who needed a piece of kit they didn’t already have.

Carb counting practice:

The estimation of carbs continued with a bunch of pictures of plates of food and a fine selection of the Early Learning Centre’s finest plastic food. So armed with the Dafne book of carb estimation, everyone had to work out the sort of stuff we might encounter at home or when eating out.

It threw up a few interesting things for me. Bearing in mind that pulses are not counted, we came to baked beans, which threw up another interesting rule: because the beans are free, but there are countable carbs in the sauce, the formula is to read the total carbs on the tin and only count half (for the sauce) towards the insulin required.

Hypos

Another interesting session. The definition used was that a hypo is less than 3.5. There was a look at causes, symptoms and treatment. Again Dafne has a formula. Depending on when the next meal is due, the required treatment ranged from 1.5 CPs of quick-acting carb, to the addition of 2 CPs of slower-release carbs for more than two hours until the next meal. As someone who’d generally popped a couple of glucose tabs or a small swig of lucozade, it was a bit of a shock to discover that some glucose tabs (eg Dextrose and Lucozade tabs) only have 3g of carb. That means a couple of CPs would require six of them! And half a teacup full of lucozade or a 130ml carton of fruit juice – the requisite dose for a hypo – was far more than I was used to taking.

The session went on to cover the use of Glucogel and, in severe cases, glucagon. Kits were there to be inspected. Prescriptions issued for anyone who needed one.

Another thing that emerged that was new to me was an absolute Dafne rule: any night time hypo not explainable by exceptional circumstances immediately means a 2u drop in basal thereafter and a 3am blood test.

And the final shocker: at the next mealtime blood test after a hypo (when the attendant liver dump may be kicking in) there is no insulin adjustment for that rise. Only at the meal after that can a corrective dose be included to bring down high bg.

Day three

To be honest, I can’t really remember much in detail about this day, and the programme timetable isn’t much help. Certainly there were more sessions on eating out and guestimating carb content, using pictures of different meals.

Snacking was covered and can best be described as: less than 1 CP, do nothing; anything more that that, inject the appropriate units of rapid insulin.

I think we pretty much passed over a Dafne section on pregnancy and contraception because it wasn’t directly relevant to anyone there, and looked at the effects of stress and adrenalin. Driving rules, regulations and dangers were also covered.

Different mealtime insulin ratios

It was on this day, though, that the principle of dose ratio adjustment was introduced. Having got everyone’s basal correct and working to 1u of rapid insulin per CP, the concept of daily bodily response patterns was considered. Basically, the same meals are compared, day-to-day, to see if the 1u rapid insulin per CP is enough. So, for example, if it became clear that there was a consistent pre-lunch rise, then the insulin ratio could change for breakfast. The first increment would be 1.5u of rapid for each CP. Then, if necessary, 2u per CP.

Thus we would devise an insulin ratio for every meal. I think I’m not atypical in that experience has shown that I need 1.5u/CP for breakfast; 1u/CP for lunch and dinner. But it will vary by individual. Some may find, for example, that the evening meal requires a higher ratio.

Day four

Aside from the scrutiny of bg diaries, the progressively more informed discussions arising from these and decisions on any tweaks to insulin doses, the significant sessions of the day were on illness and exercise.

Illness

This session started with the expected strictures about never stopping insulin during illness and then proceeded to look at minor and serious illness. There followed considerable explanation of ketones and the importance of stopping them before DKA developed.

Two flow charts come with the Dafne manual, and very useful they are too for illness.

The first tracks minor illness, running through BG under 8 and over 8, giving, for each, the ratios of basal and bolus to use and the intervals at which to monitor blood glucose and the corrective doses of bolus. All treatments here assume no more than trace ketones. A bg of over 13 or more than trace ketones puts things into the severe illness category.

Again a severe illness flow chart tracks the options, with adjustments to be made to both basal and corrective bolus (based on a percentage of total daily dose) and the length of testing intervals until the bg comes down and the ketones are gone.

The most interesting fact from this session: if bg is over 13 and there are ketones, then exercise should be avoided until that figure drops below 13 or it could make things worse.

Exercise

The theory of how exercise affects the body and blood glucose were explained/discussed. There was (yet another) table on carb intake to compensate for impending exercise depending on its duration and the bg before starting. It got interesting with prolonged exercise (more than four hours) where not only bolus insulin would be reduced at the preceding meal, but the previous dose of basal could be reduced too. That reduction could be as much as 50 per cent for prolonged exceptional exercise.

Much of the theory here seemed to assume the use of Levemir, which is claimed to be more or less immediately reactive. In other words, reduce a dose and you get a consequently reduced effect during the next 24 hours (daily dose) or 12 hours (twice daily dose).

The course did suggest that the same applies to Lantus. Maybe it would work that way for some. Personally I find it takes a day or two to adjust, so I’m a bit sceptical about cutting a dose and expecting an instant fall-off in its activity.

Changes for exercise are exempt from the general law that says “drop by 2 units and wait for three days before changing again”.

The theory in the classroom was followed by a brisk 25 minute outing so everyone could test and apply the chart for extra carbs if needed.

One interesting thing had emerged at this point. Having started off by saying Dafne was based on four tests a day, to my horror, we’d now been told to test before driving and on long journeys, at any sign of hypos and before and after exercise. This was much more what I’d been used to. I think the initial statement, therefore, was confusing – or I just took it up wrongly. What it had become clear Dafne was saying was that there were four routine, mealtime, tests on which normal insulin dosages are based (remember, Dafne isn’t too bothered about post-meal levels and doesn’t suggest between-meals corrective doses of insulin: high bg is treated at the next meal, illness excepted) but that actually there are numerous other occasions when testing should be done.

I must admit, I’m still somewhat hacked off at the “you only need to test four times a day” statement that we started with – if I understood it correctly – because it’s the sort of thing GPs hear and adhere to as being official policy without understanding that it’s not the full story.

One other point I registered on this day was from a session on reading food labels. As well as adjusting for pulses, as previously mentioned, it was also suggested that bulk sweeteners (sorbitol etc), though they do have carbs, don’t cause bg to rise and should not be counted towards an insulin dose.

Day five

Alcohol

At last, down to the really important stuff. There was a look at all manner of drinks and the amounts of alcohol and sugar they contain, how the alcohol affects the bg and especially how to look at alcohol alongside exercise.

There was the inevitable – but very useful – Dafne table of drinks, their carb values, alcohol content and how to manage them. For the binge drinkers, you’ll need to check the tables for the fine detail. For average people, the good news is that 1 or 2 glasses of wine with a meal doesn’t count for anything. Nor does a pint of beer.

Basically, in higher quantities there are formulae for injecting to cover extra carbs in the drink, then later eating extra carbs to compensate for the alcohol’s effect in reducing bg and/or reducing night-time long-acting insulin for the same reason.

Incidentally, no or low-alcohol lagers are treated like sugary drinks and are portrayed as pretty much a disaster area of diabetics, requiring rapid insulin.

Annual review

The last day also had a session on the annual review we are all meant to get, covering what all the blood tests are (kidneys, cholesterol, blood pressure etc) and the treatments if any results are out of line, ensuring everyone was getting retinopathy checks and podiatry services if needed.

There was also a session on travelling, crossing time zones etc. but nothing there I think will come as a surprise to any readers of this.

And then there was the inevitable session looking at how people had progressed through the week, their motivation, how they felt they were moving toward their goals etc. Forgive me if I dismiss it as huggy-feely flip-chart stuff.

And so the week was over.

Conclusions

My conclusion? I did learn some new stuff, though probably I was familiar with all the basics. I didn’t have it down to such a rigid set of rules though and tended to “wing it”, just adjusting as I went along, hitting highs as they happened and swigging Lucozade for the lows.

Since Dafne I’ve tried to see things more in patterns and do now have set ratios of insulin to carbs for different meals. And I haven’t done corrective doses of rapid insulin between meals even when I’ve been running high, but rather waited until the next mealtime. Also, I’d never really bothered about ketones before – the professionals I spoke to about them always just dismissed them and said they’d be picked up during urine tests at annual or six-monthly reviews. In view of Dafne’s very different attitude, taking them much much more seriously, I now do run checks if I’m over 13.

In terms of bg figures, I do now have fewer hypos because I seem to be running in a slightly higher range than pre-Dafne. And my regular upward spikes are a little higher and a little longer than they were before. Pre-Dafne, the bulk of my reading would have tended to be in the range 4 -7 (with more 3-hour post meal readings). Now it’s probably more like 5 – 9 (with many fewer post-meal readings). And the 30-day meter average confirms this: it’s now in the 6s and 7s; previously it was in the 5s and 6s.

However, the pre-Dafne meter averages translated into HbA1cs in the mid-to-high 7s. I’ll be interested to see if my next one is higher or whether there’s some other mechanism at work and it comes down. Stranger things have happened.

Another really good thing to come from the course was that we clearly had a DSN and a dietician who were very actively spreading new thinking to fellow professionals and sharing our – the course members’ – frustrations at the sort of outdated thinking that’s so frequently reflected in people’s problems on the forum, ranging from lack of information to high-carb dietary advice to refusal of test strips.

I guess it will take a few years for this breath of fresh air to filter down to practice and community levels in this area of south London, but it’s encouraging that the process has started.

There’s probably stuff from the course I’ve forgotten to include, but I hope it provides a flavour of what goes on, has broken the conspiracy of silence and encourages others to try to get on a Dafne course.