DAFNE is doolally

michaeldavid

Well-Known Member
Messages
387
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
not thinking
I remember how it used to be: I'd go to bed each night not knowing whether I'd wake in the morning, or whether I'd be dead.

Not surprisingly, then, I became obsessive about whether I'd eaten enough. I'd get back up out of bed and I'd eat a piece of toast, or whatever. And sure enough, nine times out of ten, I'd wake with blood-sugar in the high teens.

So then I'd take my morning insulin, and I'd immediately go for a long walk. And then I'd wonder whether or not I'd get back safely (I was living in the middle of the countryside), or whether my corpse might not be found by a passer-by a few days later.

Then one day it occurred to me that if I simply dropped the long-acting insulin altogether, and if I didn't take any fast-acting insulin after a certain time in the day, then that would be my problem solved.

The effect of the fast-acting insulin I take, Actrapid, runs out after around 13 hours. So I didn't take any insulin after .... 11.00am!

But then I found, unsurprisingly, that I would get hungry in the afternoon and evening. And I would eat. And my blood-sugar would rise. And then I'd have to go for a long walk in the evening, just to burn it off.

So I asked at the diabetes clinic whether there wasn't a faster-acting insulin. 'Yes', I was told: 'Novorapid', it's called. So I started taking Novorapid at 4.00pm. That way I could ensure that it's effect runs out before I go to bed. 

My HbA1c readings improved - and very significantly. I remember a consultant at the diabetes clinic saying: "That's a bit TOO good."

And indeed I was constantly having hypos, especially in the mid- to late afternoon.

Then, by accident, I discovered rye bread: dark rye bread. I happened to move house; and I happened to move close to an excellent baker. And I happened to start eating dark rye bread - because it tasted good.

Suddenly I found I was no longer collapsing to the floor with a hypo every other day. Eating dark rye bread steadily throughout the morning and into the late afternoon makes for effective hypo prevention. (I stop eating rye bread after 4.00pm, for otherwise my blood-sugar rises in the evening.)

So I don't have to 'count carbs'. I don't have to calculate anything. I just eat, on and off, more-or-less all day long: I eat quasi-obsessively. (That includes eating lunch and dinner: I like to cook.)

'Feeding the insulin', it's called. And part and parcel of this practice is that I test my blood-sugar quasi-obsessively.*

But that's far, far simpler - and far more realistic - than quasi-obsessional 'carb counting' and 'dose adjustment'. My typical HbA1c readings of 4.6%, or 27mmol/mol, are testament to that.

'Feeding the insulin' has rightly been described as 'doing it backwards-way-on'. For indeed, if you're not diabetic, then your pancreas's beta-cells would respond to any increase in blood-glucose by releasing insulin. So conversely, if you're diabetic, you can do the reverse: you can first take the insulin, and you can feed it! You can do precisely what a healthy body would do, but backwards.

Or alternatively, you can do what orthodox insulin-dependent diabetology recommends: you can do DAFNE - 'Dose Adjustment For Normal Eating'.   

But that's completely unrealistic. For in practice, doing DAFNE inevitably involves complex calculations/guesswork and yo-yoing blood-sugar. And because insulin will be running in one's system at bedtime, doing DAFNE inevitably involves the risk of night-time hypos.

DAFNE doesn't make good sense. The typical insulin-dependent diabetic's typical HbA1c readings are testament to that.

The orthodoxy is misguided and plain wrong. DAFNE is doolally.


* I use meter-read sticks mostly last thing at night and first thing in the morning only. The rest of the time I use Betachek Visual. These visually read strips can be cut with scissors: each strip can be cut into up to five small striplets. And that makes the cost per test a small fraction of the cost of meter-read sticks. (Meter-read sticks cannot be cut with scissors, of course.) Betachek Visual are on the UK Drug Tariff, but there is at present no UK-based supplier. However they can be purchased direct from the Australian manufacturer http://www.betachek.com/uk/store
 

mo1905

BANNED
Messages
4,334
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Rude people !
Interesting read Michael, especially the dark rye bread. I've been looking out for it but as yet have not come across any. Do they sell it in supermarkets or just bakeries ?
Your regime won't suit everyone but may may help a few. One thing I have learned from these forums is rules don't work for diabetes. Everyone is different and they react different to certain food. I will certainly give the rye bread a try though ! Thanks for posting.
Mo


Sent from the Diabetes Forum App
 

phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump
You are happy with your method. I would hate to use it, I'm not quite sure how I would get on nibbling rye bread throughout a 10 mile run and can think of lots of places where that would prove very difficult. (incidently, not all varieties of rye bread are low GI)

I don't live in the UK and haven't done DAFNE, I do dose adjust according to my food intake, exercise etc. There are a number of testimonies to DAFNE on this thread.
viewtopic.php?f=19&t=26523

Your practice of not taking any insulin overnight works for you fine. However, for many people this practice would be foolhardy and for some dangerous. Most people need some insulin overnight. One of the potential problems with an insulin pump (fortunately very rare) is a malfunction causing no insulin to be delivered over night. Some particularly young people but also people whose livers produce pronounce large amounts of glucose overnight can start to develop DKA after as little as 5 hours without insulin (there were several accounts of this happening in the early days of insulin pumps)

People who are not on pumps use basal insulins (normally levemir or lantus, less frequently NPH) which they learn to adjust according to their own needs.
Ideally this should result in a fairly flat profile overnight with no more than a 2mmol/l difference.
Using a pump I can go to bed with a level and wake up at very much the same level.Last night I went to bed at 5.4 and woke up at 5,6. I can do this through a mixture of my own metabolism (that's the luck bit and important) but also because of knowledge about what my levels do overnight . I know this through testing and the occasional use of a cgms . I have also learnt how to use insulin effectively.
This book was extremely useful: http://www.amazon.co.uk/Think-Like-Panc ... 0738215147
Have you read it?

Lastly, you may have found that Novo lasts in your body for 8 hours, I think that's unusual. I've uploaded a graph of the normally accepted times for insulin action.
 

Attachments

  • insulin profiles.png
    insulin profiles.png
    27.8 KB · Views: 2,488

michaeldavid

Well-Known Member
Messages
387
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
not thinking
Mo, even my local Tesco Express sells dark rye bread: they do pre-sealed packs of Pumpernickel. But be very careful not to eat too much in one go. Or you'll find your blood-sugar rising later on.

Phoenix, one can always make adjustments. If I wanted to go for a ten-mile run, then I would go for a ten-mile run. But I'd ensure that I'd loaded up with carbohydrate beforehand. And I'd always ensure, even at the risk of getting cramp, that a good portion of that would be dark rye bread. For I need that to ensure I'm not caught unawares by a hypo.

I don't normally 'nibble' anything. Rather, I've always tended to scoff - and in more ways than one.

I do actually take just a little long-acting insulin last thing at night - as a click on my username would reveal - to prevent my blood-sugar rising overnight. (But I don't take long-acting insulin during the day, because I simply don't need to.) And I would always go for that option unless I had absolutely no alternative.

I know very well that mechanisms can develop faults. So I would never opt to use an insulin pump. Why should I? The HbA1c results I achieve could scarcely be bettered. Indeed, they're probably as good as - or better than - the theoretical results of most people who do not have any form of diabetes.

If however one aims to eat normally, such as by eating a not-insubstantial evening meal, then it's always going to be dangerous going to bed at night - with or without having taken insulin. And if people are using pumps in order that they might eat in such a fashion, then I think that's putting the cart before the horse.

People may be doing that almost unwittingly, moreover. The orthodox treatment of diabetes does indeed appear to involve encouragement to eat normally. And to be normal, and to do all things more-or-less normally, is indeed perfectly normal! But if one happens to be diabetic, and if one tries to eat normally but ends up with blood-glucose all over the place, then it must seem perfectly natural - and quite normal - to want to get a pump fitted. But it's surely far simpler not to attempt to eat normally in the first place.

I stand corrected over the action-time of Novorapid. (So I've just edited my initial posting.) I've had a look at the leaflet in the pack, and it says "the effect lasts for 3-5 hours." I've no idea where I got the idea that it lasted for 8 hours. But thank you for putting me straight on that. Maybe, with extreme caution, I will try taking my Novorapid a little later in the afternoon. 
 

iHs

Well-Known Member
Messages
4,595
After reading michaeldavid's msgs about rye bread, I looked on the internet and discovered that Polish people eat it and so was able to find it being sold in a supermarket where Polish food was also available. The bread came as already sliced and also included wheat flour and sourdough and wasn't that low in carb but tasted very nice and fairly filling...

Since that time I have also been able to buy freshly baked rye bread being sold at markets by a bread company. It resembles a tinloaf in appearance and is a dark creamy yellow in texture with a lovely crust dusted with white flour. It needs a very sharp knife to cut it (electric is better) and can be cut to any thickness required. If kept in the fridge in a sealed bag, it keeps for weeks instead of just days.

I had some today at breakfast time but overcalculated the carb content so went a bit low 1hr after eating it so will have another go tomorrow morning and use the correct calculation....
 

phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump
Michael,
I'm glad to hear that you are using a background insulin. I have to say I have reread your post and it sounds as if you have no insulin in your system after the evening meal insulin runs out.

Phoenix, one can always make adjustments. If I wanted to go for a ten-mile run, then I would go for a ten-mile run. But I'd ensure that I'd loaded up with carbohydrate beforehand. And I'd always ensure, even at the risk of getting cramp, that a good portion of that would be dark rye bread. For I need that to ensure I'm not caught unawares by a hypo


I have to say that the main reason I was offered a pump is exactly to avoid having to eat carbs before every activity. When I was really active for a few days I ended up having to halve my basal dose but that change doesn't kick in quickly. I was running marathons at the time. I now adjust the insulin for exercise so that only a trickle is delivered during and immediately after exercise. It was very useful when I did the sentier des bonhommes http://www.sentiers-pyreneens.com/heb_fr.php last year Even then I had to eat more than usual but then so did my non diabetic other half (if you saw todays Tour de France you'd understand the problem).

Fortunately the French system doesn't use the same sort of criteria for pumps as the UK. (I had good control before I got it) Equally fortunately it isn't fitted to me, I can take it off when I need to and indeed have just been swimming sans pump, sans insulin.

I'm not really clear why you don't use rapid insulin instead of actrapid with your meals .I think that this could partially eliminate your need to eat between meals.
(However, it works and you are happy then no problem and you certainly have found a way that eliminates your fears of a serious hypo)

I appreciate what you say about carb counting . When you are starting, it is time consuming but most people eat fairly consistent meals. When the initial work has been done then for many meals you don't have to calculate every time and you can get quite good at estimating when eating out. Personally, I try to make sure that most of the carbs I eat have a lowish GI but I eat them at mealtimes.

If you really want a fast acting insulin ask if you can change to Apidra. In most people that is faster than the other rapid insulins. I use that in my pump and I am able to eat quite late without the mealtime bolus still being active at bedtime ( I went out to a friends house for a barbeque the other night and we didn't start eating until gone nine , I went to bed at 1am with no worries/problems)

IHS,
the rye bread you are describing sounds very like the local pain de campagne here. (the locals don't eat baguette type French bread) I find it better than most breads in the UK but not as good as a very grainy sourdough or a nut bread.(ie nuts and various flours) If it's like that then I don't think it's as heavy as the
pumpernickel type bread Michael is describing.
 

michaeldavid

Well-Known Member
Messages
387
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
not thinking
IHs, I just love great bread.

But that aside, I did eat Polish sliced rye bread when I'd briefly run out of the bread that I normally eat. (My local baker sells rye bread only on Saturdays.) And I believe that Polish bread is mostly made with light rye flour. But it didn't seem to make any difference to me anyway. I only know - because I asked him - that my local baker's bread is made entirely of dark rye flour.

However Pumpernickel, or Vollkornbrot, are different again. (Apparently, Pumpernickel is the same as Vollkornbrot but with rye berries added - I just learned that after checking on Wikipedia.) And when I did once run out of any other alternative, I bought a pack of Pumpernickel from Tesco Express. But I ate too much. And I ended up walking miles and miles later that evening to bring my blood-sugar down.

You mention 'breakfast'. But I don't really eat breakfast. I drink coffee, with milk, first thing. And before long I'll eat some rye bread; then I'll eat more, and more, and more. (And then it'll be time for lunch - I do eat lunch!) But I'll always be testing my blood-sugar as I go along, several times over- using the cheapo visually read strips, cut into striplets. (Nb. I certainly wouldn't use meter-read sticks throughout the morning like that. There's no need for decimal-point accuracy: I only need a definite FEELING for what's going on within; and that's just what the visually read striplets give me.)

Phoenix, I've just had a look at the paper slip that comes with the vial of Actrapid. And indeed, it says "the effect will last for approximately 8 hours". So now I'm beginning to remember why I had it in my head that the effect of Novorapid lasts for 8 hours. And I remember having a disagreement with a nurse at the Elsie Bertram Diabetes Centre. I told her that, whatever the slip of paper might say, the effect of Actrapid on me lasts for 13 hours. And simply by careful trial (not trial and error, please note), I learned that the effect on me of Novorapid lasts for 8 hours. (So I won't be changing the time in the afternoon that I take Novorapid after all!)

As a matter of experience, if I haven't eaten anything earlier in the evening that's slowly digested, I know that my blood-sugar will fall my 2mmol/l between 11.00pm and 12.00 midnight. And apart from the 2 units of Insulatard that I took 24 hours earlier, the only thing that could cause that 2mmol/l drop is the 11 units of Actrapid I took at 11.00am and the 6 units of Novorapid I took at 4.00pm.

I am very happy eating, full stop. I think I've never eaten better than I do now. I certainly feel no inclination to change the insulins I take, with or without the risk associated with such change.

The very idea of carb counting bores me to tears. When I see or hear people talk about it, I switch off. To me, it's like talking about diets. So I guess it may be a blokeish kind of thing.

All I want is simplicity, and practicality. But I certainly don't believe I'm unique in that way. I remember very well when I was first diagnosed with type 1 diabetes 30 years ago. And it was bad enough then. But if it were new to me now, I believe I would sooner top myself than contemplate having to deal with the jargon, the calculations, ..... I feel some swear words coming. My point is - the point of this thread - is that for certain kinds of people, nothing could be worse than the kind of introduction everyone now seems to get to diabetes. For such people, nothing could be worse for their health outcome in both the short and the long term. All the equipment, the 'purses' that the wretched stuff comes in. ..... All the ********.

There, I've said it now. But I'm tired, and it's time for bed