Predictions when almost everything is unpredictable.

[sgm14]

I think that a key part of blood glucose management is predicting what is likely to happen. For example, how much your levels will rise after eating some carbs, or how much they will fall when you take insulin or predicting how much insulin you need to cover a meal etc.

So how do you cope when almost everything is unpredictable?

Background: Retired, diabetic for 9 years. Originally thought to be type 2 but now classified as Type 1 and I've been on insulin (novorapid and lantus) for 6 years.
I've been using the Freestyle Libre for 5 years and my TIR is > 90% (which I'm content with) but my last three HbA1c results have been 48, 47 and 49 (which I'm not happy with) Also last check-up the endo told me that I needed to work on reducing the spikes, especially the one after breakfast.

So what sort of things do I find unpredictable.
I can never tell what my blood glucose will be when I wake up or what it will jump up to when I get up or what it will be when I start my breakfast (about 25/30 minutes later).
Yesterday was 6 on waking jumping up to 8 and ending up near 10 at breakfast time. Other days I might start at 7 and jump to 8 and back down to 7 by breakfast.

I can't predict how much it will rise when I eat. It is common for me to go high and I need to take a walk to bring my levels down. But it is also common to need glucose to avoid a low.

When I go for a walk, I can't tell how far I have to walk. It usually takes a while before they start dropping and then they may drop slowly for a while and when start falling fast (I have gone low several times when this has happened). Other times they don't drop at all.

A far as insulin doses are concerned , what I try to do is aim for the middle and hope that I will be high (and need to take a walk) roughly the same number of times that I go low (and need glucose) and also hope that I don't need to do either for a reasonable number of times as well.

Even taking a correction insulin dose is unpredictable. Previously I've only took correction doses when my blood sugar is really bad, but I have been taking them more often in the last month or so. But several times when my blood sugar has been stable but just a little high, I have taken just one unit of insulin and it doesn't seem to do a thing. Either that or it takes more than 90/120 minutes for it to work. Yet when I take my normal insulin at meal times, I need to be careful if my figures are low as that could be one of those days where the insulin takes 15 minutes and the food 30 minutes. Other times one unit can drop my figures between 2 and 3 mmol/l.

Treating/avoid lows is also unpredictable. Quiet often 5g is enough, but other times I need ten times that.

Any tips or advice.


The rest of the post is something of a rant, but illustrates the issue. None of the events I mention are unusual, except for the fact that they all happened on the same day (Thankfully not every day is as bad as today)

After breakfast I went high and started out for a walk. Twenty minutes later my figures start dropping slowly and fell slowly for another 20. Then they start falling fast and it becomes clear at that rate I am going to go low before I get home. So I take 9g of glucose and bottom out at 4.2 and arrive home with my levels around 6.5
But they don't stop at 6.5 and continue rising and an hour after I was almost going low I am high again.

Decide to go for another walk and my figures rise to 12 and then stay fluctuating between 11 and 12 and just as I am opening my door at the end of the (almost two hour) walk,
my phone goes off with the 'really high' alarm of 13! (2 hours wasted!)

So I decide to take an early lunch and take extra insulin to bring me down. Sort of works, but it looks like things are staying above 8 and I would like to bring them down below 7. So off on my third walk of the day. Expected this to be fairly short, but then my figures started rising and got to 12 before falling back and then yet again, started tumbling, but I managed to get back home with BS at 5

Phew I thought. Finally I can get back to reading my book. Wrong!

My figures started rising again and I end up almost high. So I kinda gave up and took a correction dosage and walked (just around the house) until my figures went below 7.

So that's over four hours in total that I've been walking today to try to bring my levels down and my average is still well over 7.

 

[Juicyj]

90% (which I'm content with) but my last three HbA1c results have been 48, 47 and 49 (which I'm not happy with)

I get that and felt the same as my TIR is 85% but HbA1c is 52, so spoke to my DSN this week who advised that they are trying to steer away from HbA1c and to TIR as this is a better indication of control, HbA1c's are brought down by hypos which is why they prefer us to not aim for low 40's, the NICE guideline is 48, NICE TIR is 70%, so you're doing great.

 

[sgm14]

so spoke to my DSN this week who advised that they are trying to steer away from HbA1c and to TIR as this is a better indication of control,

Depends on the TIR range. (I know I can change this for me on the phone, but not on the website which endos sometimes look at)

For example, if my glucose levels were always at 9.9, then I would have a perfect TIR, but the HbA1c would clearly show things are far from perfect, so I think you still need both.

(I really don't understand why the AGP people didn't make the TIR range 3.9 to 7.0 !)

 

[EllieM]

(I really don't understand why the AGP people didn't make the TIR range 3.9 to 7.0 !)

I think the 10 comes from the days before glucometers, when you only knew that your bg was high if you passed sugar into your urine, at 10 mmol/L

And the long term data on diabetic control and complications includes the pre-glucometer years and had an hba1c of 6.5% or 48mmol/L being the point below which there were very few eye complications. That's an average bg of 7.8mmol/L so though a lower TIR range may be more like that of a non diabetic it isn't necessarily better for an insulin using T1. (Pre cgm, I aimed for an hba1c of around 50mmol/L , because whenever I went lower I lost hypo awareness and had some hospital inducing hypos.)

It's easy to assume that lower is better, but too many hypos can cause loss of hypo awareness and that is really not good news for an insulin user.

Personally, I couldn't hope to achieve a 3.9 to 7 range and I don't think I need to as regards my health outcomes (54 years T1 with some very poor control in the early pre glucometer years.) I'd be very happy with your results, though I totally empathise and understand your frustration about the non repeatability of our bodies' reaction to insulin. The trouble is that there are so many things that affect our blood sugar, 42 according to this article

42 Factors That Affect Blood Glucose

Adam Brown with diaTribe put together a comprehensive list of 42, yes you read that right, 42 factors that affect blood glucose in Type 1 Diabetes.

diabetesresearchconnection.org

I think mental health is part of T1 management, so it's partially a question of setting achievable goals which also combine with good health outcomes. As the tech improves those goals may change, but we're not there yet.

I moved onto a pump earlier this year which has greatly eased the burden of diabetes management for me, but I don't think it's changed my hba1c. It has however drastically reduced my hypos, which is very important for me, ( will be interesting to see what my clinic say when I next see them.)

 

[Tony337]

To the OP i feel your pain and please don't beat yourself up with hba1c in the 40s.
I would be fascinated to know what you are eating to cause such large spikes?
Also how much insulin are you on and when you take it?
The CGM is a wonderful tool and with the alarm i have achieved 39 which is 5.7 i think.
I do go low from time to time but this is where you have to analyse the data.
Its generally only the libre that goes low as my alarm is set at 3.2 ......at this point i have already eaten and its not that low....i use my fingerprick test to prove it subsequently my hba1c is always slightly higher than the libre suggests.
The libre is 25 minutes behind so you have the opposite problem as if its showing 9.9 going up with the arrow pointing up you are much higher and harder to correct.

I scan/view 50 times a day and whilst thats not for everyone it gives me excellent control.
I'm in my 50th year of being a type 1 and have never been hospitalised or passed out nor do i struggle to function unless below 2.9.
I keep myself higher if driving and walk alot.

As i say this works for me and the data is the key for me.

I wish you well

Tony

 

[sgm14]

I would be fascinated to know what you are eating to cause such large spikes?
Also how much insulin are you on and when you take it?

Carb-wise breakfast is hard to count as it is bought in the butchers and unlabelled. In theory there should be very little carbs, but I tried several different types of breakfasts with a labelled carb content of around 5g or 6g and they caused similar spikes. I usually take about 3 or 4 units of novarapid for breakfast.

Lunch is almost always 14g and I usually take about 7 or 8 units.

Dinner is usually around 6 or 7g and and I usually take about 5 units.

Also 8 units of Lantus which is taken at night.

 

[SimonP78]

The issues with breakfast are probably partly to do with foot on the floor (hormonal hepatic glucose production) and the variable effect that can have day to day, which can depend on what exercise you did the previous day and whether you ran low overnight.

It sounds like you're running a very low carbs diet, in which case you really need to keep a very close eye on protein and fat as these will both be converted to glucose (in varying proportions) with such small quantities of carbs on board. To make matters more confusing this happens over quite a long period too, so split bolus is almost certainly going to be required. In addition low carb diets tend to produce insulin resistance, which may explain partly why insulin isn't necessarily doing what you expect (I also find that when high insulin is less effective, which is likely to be an additive effect you'll see).

If I were you I'd be logging what and when you eat, etc., to try to spot patterns - if you are already doing this or start to do so please do post some data and the hive mind can try to help you spot some patterns.

 

[sgm14]

The issues with breakfast are probably partly to do with foot on the floor (hormonal hepatic glucose production) and the variable effect that can have day to day, which can depend on what exercise you did the previous day and whether you ran low overnight.

I know I am usually affected by foot on the floor syndrome, but did not notice any pattern between it and what happened the day before. Mind you I wasn't looking so perhaps I have missed that. I'll have to keep an eye on that.

It sounds like you're a running very low carbs diet, in which case you really need to keep a very close eye on protein and fat as these will both be converted to glucose with such small quantities of carbs on board.

There does not seem to be general agreement on how many carbs is 'very low'. I've seem one place say < 20 per day and another <50 and one place describes what I eat described as "moderately low" . Do you know roughly at what point this becomes a factor.

I seen the same spikes when my carb intake was around 150g. Also there was not a sudden switch in my carb intake as I made sure I reduced slowly and this unpredictability has always been there.

In addition low carb diets tend to produce insulin resistance,

That's strange. I always heard that low carb diets reduce insulin resistance.

please do post some data

What sort?

This is a screenshot of nearly two years ago.

The part that the endo was not happy with was the blue area above 10 specifically the peak at around 9am


This is a similar screenshot of figures now.

The profile graph shows the peaks have come down, but the actual time spent high has not really changed and neither has GMI.

What has changed is how much walking I am doing , was about 9000 steps per day and now it is over 14,000.

 

[SimonP78]

That's strange. I always heard that low carb diets reduce insulin resistance.

I'd have to leave that to some of the forumites who are low carb, I'm certainly not, but that was the impression I got from reading various threads.

What sort?

Comparisons of some of the unpredictable variability?

 

[CheeseSeaker]

To use an American term - its all a bit of a cr*p-shoot

To cover all this stuff I use:
1. CGM (know whats happening with my BG 24/7 and can see patterns and alter where necessary)
2. A pump - more fine control (for me at least - others prefer injections)
3. A Loop (either HCL or FCL) preferably with Dynamic Insulin Sensitivity turned on
4. Ultrafast acting insulin - it takes 20 mins for the CGM to read BG, and then the delay for insulin to kick in, so ultrafast rather than fast makes the loop work much better

It makes life much easier to live with (though more work than MDI to get it initially set-up and requires tuning when things change (weather, time of year, bad cannulas etc etc)

Haven't worried about going to sleep and waking up in the throws of a 'severe outage' for years, but the work is in setting the loop up and reading all the information needed for that (the amount I now know about T1 has spiralled up over the past 3 years - I'm better for that, but nothing is ever perfect).

Its as good as I can get it, and better now than its ever been (T1 for 51 years) so love the stuff we have available and the future of whats coming next.
The 'events' you describe I know well - BG's like a table tennis ball in a world championship match - there is tech and advice available to help you - for me it took a few bad lows to make me change my approach and move from old and comfortable treatments to new and unknown.

But I'm better now than ever and love being able to eat stuff and not think about carbs and insulin - just jam it in my mouth (I make an exception for pizza, still have to declare that) my FCL (Fully Closed Loop) handles it all

 

[Circuspony]

OP I'm another whose body hasn't read the rule book and I react to food very, very quickly. Although if I inject insulin too early you can guarantee that'll be a day when I'm having jelly babies pre dinner.

I also have a very active job 4 days a week and a sedentary one on the other 3. I feel insulin dosages are more guesswork than science most days.

Case in point - breakfast usually gives me a short term spike to around 10 which comes down very rapidly. Today same breakfast pushed me to 19!! And it isn't coming down fast and that's all because I went to bed a bit late after a theatre trip.