DAFNE - For me - didn't work

[Fearless36]

So I see a lot of posts recommending DAFNE. I did it last year, and was told that it was revolutionary and would be life changing. Don't get me wrong, it was great to meet other diabetics and discuss some of our experiences and learn about the carb counting. But for me, it was a bit of a let down. During the whole 5 days my sugars weren't balanced once. They were constantly up and down. I did the doze according to what was advised by the nurses and they got me to calculate based on the food etc, but I didn't come into balance at all. Initially I was told that perhaps I needed more time for my body to adapt to the principles of DAFNE. Yet six moths plus later on and I'm still umbalanced. I spoke to a new medical team after I requested a change through my GP, and this new centre seems to indicate that I should retake the training. I'm a little reluctant to do so, as it just doesn't seem to be working in my case. I am on a ratio of one unit per 10 grams of carbs, and its become really complex in that at some meals I'm now doing 1.5 units per 10 grams of carbs for monring and lunch, and then in the evening this switches to .5 units per 10 grams of carbs. I'm doing everything I can, but it just isn't working. I never used to have problems till I switched onto this fast/slow acting stuff. I was even on pigs insulin at one point and my sugars were perfect - in fact text book good the doctors used to say. I am not overweight and relatively active too. However since doing DAFNE I feel like I am so restrained. I used to love cooking, and have struggled doing that with the carb counting. So I then started eating a lot of ready meals (as that was easier to work out the carbs, but its just never ending.

I just dont know what to do. For me, when I did DAFNE I was repeatedly told that it was going to be good and balanced most people. Yet in the group I was in, only 2 people got good levels on the final day and the rest of us were all over the place. So Im a bit frustrated in that it doesnt seem to be working for me.

My medical team have tried to tell me that it works for everyone, but I suspect that this is not true at all so was just curious if anyone did DAFNE and didn't get good results and how you have gotten good results instead?

 

[EllieM]

Hmm, I'm assuming you're on a basal/bolus regime.

Different people have widely different insulin needs, the 1U for 10g just tends to be a starting point, some people need 1 unit for 20g and others 1U for 1g.... And yes, it can vary by time of day and illness and exercise.

But the first basal/bolus question is to get your basal right. If your basal is wrong then you have no chance to get the bolus ratio (or ratios) right.

So how confident are you that your basal is right?

Have your clinic refused to put you back on your old insulin regimes? Basal/bolus is great if you want to have more freedom about when and how much you eat, but if you don't want or need that freedom there's nothing wrong with a fixed dose system.

I've never done DAFNE (left UK in 1999 and am not sure id it was around then) but my NZ clinic have actually been pretty helpful in suggesting/tweaking insulin correction factors and ratios. But I've got to admit that I find things harder now than I did 20 years ago, when I was on basal/bolus but not the "modern" insulins. I'm a little cynical as to exactly why new insulins are brought in. Is it to help diabetics or is it motivated by changing insulin formulations so that patents and pricings can be maintained....? But I also suspect my issues are more related to the fact that I have more insulin resistance than I had 20 years ago, or just that I'm older.

But as regards DAFNE, I'm pretty sure it doesn't work for everyone, as there are plenty of us out there who aren't in control of their diabetes. I'd hope that it does help many, though.

 

[Japes]

I did DAFNE at the end of last year and I've given it all a good go, but have come to the firm conclusion "normal" eating, as in three meals a day based on the Eatwell kind of plate, and me just don't go together and what's more, never did. I'd found a balance that had worked well before and worked out which carbs/proteins affected me. The massive debate over eggs was fabulous! (All of us were adamant eggs needed to be bolused for, we kept being told "No, they don't" we all went home and proved it!!)

The most useful thing for me most definitely was meeting up with others and we have remained in touch - especially through this strange period of time when it hasn't been so easy to get in touch with our medical teams. It's also given me more confidence with adjusting ratios for fast-acting (which definitely has different ones for different times of day along with different ones for active/inactive, working/not working days) as needed. I'd already got the idea of getting my basal right and had been adjusting that as needed but again it gave me a bit more confidence to adjust as need be.

It certainly hasn't had any impact on improving my Hba1c, I'm still struggling with random overnight unexplained highs, and my own spreadsheet records show that. Others in my group, however, had a great experience of it, it's worked brilliantly for them, and they have massively improved Hba1cs. (We've all had at least 2 since doing DAFNE.)

 

[NicoleC1971]

I agree.
Dafne is based on diabetes accountancy i.e. you calculate carbs and insulin ratio (assumes you have your basal correct) whereas our blood sugars are dictated by many more things than that which can possibly be calculated using a simple ratio.
That said this method may be better than simply guessing and may very well suit people for whom normal eating means eating very similar meals at very similar times each day with equally predictable sleep and exercise patterns. Oh and it helps if those people have stable hormone levels across the month.
For the rest of us who might exercise and eat different things at different times or just have non regular working holus. We also eat differing proportions of fat and protein with a meal or have different levels of stress.
I think Dafne may over sell itself and leave the participant feeling as if they failed because they did not emerge with perfect conrol.
Dafne has been widely available for years now but still most type 1s do not achieve an HBA1c under 7. Even those who haven't done the course do intuitively understand how to guesstimate our doses and when motivated we can do a reasonable enough job of it without formal carb counting.
My other beef with it is that it encourages the eating of packaged foods because they are so much easier to put into your bolus calculation than say working out how many carbs were in the fish pie you made and how much of it did you have if you shared it with your family!
My solution would be to keep the good things about Dafne (meeting other type 1s and sharing knowledge) alongside a more agnostic approach from the dietician e.g. discussion of keto or low carb as well as the current orthodoxy or even plant based diets. My own course was 12+ years ago but it seems things haven't moved on that much.

 

[urbanracer]

Where I live they run IMAGE (Insulin Management and Glucose Education) which is supposedly based on DAFNE. Explained that the hospital has to pay some kind of license fee for each pupil to run DAFNE so they came up with their own solution.

The problem with these courses is that your brain is paying full attention to what's being said but for some of us, our endocrine system is too busy playing with it's mobile phone to pay attention.

The theory is great but when you tell them that, on Monday I had eggs and my blood sugar was fine afterwards, but today I had eggs and my blood sugar went up to 12mmol then they don't have an answer - how could they?

I would say use the theory, but understand that a good few of us have to find our own way. Now I just eat the eggs and correct if I need to. Saves a lot of worrying.

 

[ROE100]

I did the DAFNE over 6 years ago - and I concluded what I was actually doing what the DAFNE course was already about in principle so didn't get a lot out of the 5 days invested so wasn't sure that it worked for me either. I apprieciate the course may have changed over the last 6 years.

I did learn some interesting bits re excerise & insulin in the body at that time, sick day rules (but not been sick since) and basal as being the very important to get right (note still can't get this right so still have the same issues today I had 6 year ago).

However I had a few issues with the trainer/nurse so this may have masked my feelings about the course sucess - I was shot down on the first day when we were asked about the number of types of diabetes - everyone said two I said three - No there is only TWO!! Told no you don't count any veg (except starch based veg) then on the last day yes count all veg if you plate is mainly veg - why not say this at the same time - I hate mixed messages.

I wish you all the best and as most people say diabetes in not the same for everyone so not one course/regime will suit all. Even a 99.9% sucess rate means 0.1% was not sucessful.

 

[ert]

I thought the DAFNE course was great. The most important thing I took away from it was injected insulin doesn't work like a normal person's insulin and has a fixed curve, working over 4 hours. From your post, it appears that you think you should be able to achieve normal blood sugars. I'm afraid you can't on injected insulin, without giving up carbohydrates.
DAFNE explained the physiology and gave some tools to manage blood sugars, trying to guide you to change your carbohydrate ratios if your blood sugars didn't return to the same level, at the start of every meal and waking. Every day is work in progress, there is no fixed rule that works for injected insulin. You have to follow the numbers.
My diabetes nurse referred me to DAFNE to see if I could return to what is deemed 'normal eating'. It had the opposite effect, as it convinced me I was on the correct path eating LCHF.

 

[Struma]

So I see a lot of posts recommending DAFNE. I did it last year, and was told that it was revolutionary and would be life changing. Don't get me wrong, it was great to meet other diabetics and discuss some of our experiences and learn about the carb counting. But for me, it was a bit of a let down. During the whole 5 days my sugars weren't balanced once. They were constantly up and down. I did the doze according to what was advised by the nurses and they got me to calculate based on the food etc, but I didn't come into balance at all. Initially I was told that perhaps I needed more time for my body to adapt to the principles of DAFNE. Yet six moths plus later on and I'm still umbalanced. I spoke to a new medical team after I requested a change through my GP, and this new centre seems to indicate that I should retake the training. I'm a little reluctant to do so, as it just doesn't seem to be working in my case. I am on a ratio of one unit per 10 grams of carbs, and its become really complex in that at some meals I'm now doing 1.5 units per 10 grams of carbs for monring and lunch, and then in the evening this switches to .5 units per 10 grams of carbs. I'm doing everything I can, but it just isn't working. I never used to have problems till I switched onto this fast/slow acting stuff. I was even on pigs insulin at one point and my sugars were perfect - in fact text book good the doctors used to say. I am not overweight and relatively active too. However since doing DAFNE I feel like I am so restrained. I used to love cooking, and have struggled doing that with the carb counting. So I then started eating a lot of ready meals (as that was easier to work out the carbs, but its just never ending.

I just dont know what to do. For me, when I did DAFNE I was repeatedly told that it was going to be good and balanced most people. Yet in the group I was in, only 2 people got good levels on the final day and the rest of us were all over the place. So Im a bit frustrated in that it doesnt seem to be working for me.

My medical team have tried to tell me that it works for everyone, but I suspect that this is not true at all so was just curious if anyone did DAFNE and didn't get good results and how you have gotten good results instead?

May be you could carry out a basal test?

 

[Struma]

Something here may help.

1- Basal test.

2- Bertie-on-line course, well thought of, easy to participate.

3- 'Think Like a Pancreas' by Gary Scheiner, 3rd edition now. Simply the best.

4- 'Bright Spots and Landmines' by Adam Brown (of Diabetes Daily fame)
This was once downloadable for free. Innovative in my opinion.

Good luck

 

[MarkHaZ123]

I thought the DAFNE course was great. The most important thing I took away from it was injected insulin doesn't work like a normal person's insulin and has a fixed curve, working over 4 hours. From your post, it appears that you think you should be able to achieve normal blood sugars. I'm afraid you can't on injected insulin, without giving up carbohydrates.
DAFNE explained the physiology and gave some tools to manage blood sugars, trying to guide you to change your carbohydrate ratios if your blood sugars didn't return to the same level, at the start of every meal and waking. Every day is work in progress, there is no fixed rule that works for injected insulin. You have to follow the numbers.
My diabetes nurse referred me to DAFNE to see if I could return to what is deemed 'normal eating'. It had the opposite effect, as it convinced me I was on the correct path eating LCHF.

I agree on that. Normal bloods just go back to normal with food whereas ours don't with it been an injection.

I was always told on Dafne to not test bloods for a couple of hours after food as you will always get highs due to the food going in but insulin not starting straight away. Once it starts working though it brings bloods right down but as you say it can be over a 4 hour period

Dafne was great for me as my bloods were 15s on a morning and mid 20s on a night. First task we set that week on the course was to get them in a range of mornings 10 and nights 15 then work from there.
In general my morning readings now are always in the 5/6s which 8 months ago I'd never of dreamed of

I also inject different amounts per meals during the day. If I'm off work it's 1to1 but if I'm at work I either skip my insulin or I take 2-3 less but dinner is usually 4cp so I just skip it
For tea it's always 1to1

I'm a bathroom fitter so at work I'm really active all day so skipping my insulin is the easiest thing otherwise by 3 I'm in hypo range and have to eat. If I skip it then I usually finish work high 4s low 5s

 

[ert]

I agree on that. Normal bloods just go back to normal with food whereas ours don't with it been an injection.

I was always told on Dafne to not test bloods for a couple of hours after food as you will always get highs due to the food going in but insulin not starting straight away. Once it starts working though it brings bloods right down but as you say it can be over a 4 hour period

The highs are due to the fixed curve of the injected insulin not matching all of the different carbohydrates that one chooses to eat, being broken down at different rates. That's why they say not to test for the four-hour window. Only a normal person's own body's insulin response can match what a normal person eats. Taking insulin earlier helps, but doesn't stop the blood sugar spike, just usually delays it. To eat normally, we were told to ignore the spikes on DAFNE.

 

[Daibell]

Hi. I think you are relying too much on DAFNE to tell you what to do - diabetes doesn't work like that. First as others have said you need to get your Basal right. Two pointers to a balanced Basal are a morning reading between 5 -7mmol and/or a stable BS over a fasting period of a good few hours. The job of Basal is purely to balance the Liver's background output of glucose. For Bolus you choose the carbs you want in each meal and then inject based on a suitable ratio. I think you are already doing that. The right ratio can only be found by experience and will vary for each meal - a lot of the time it will be guesswork helped by knowing the total carbs for that meal from packaging ingredient info. I've never done DAFNE and perhaps pleased I haven't as I think it's too prescriptive and some courses assume the Eatwell Plate is a great guide for our diet (which it isn't)