FUDiabetes

Three months pumping and really frustrated

exercise
hormones
insulin_pump

#61

Well, we obviously are not, which is why we are having so much trouble :slight_smile:

Many of you are suggesting opening up the triggering range. I understand why you would. But, in our case, I am not sure that it would do us a lot of good. Our primary issue is this constantly shifting basal. Our secondary issues are uncontrolled highs and sustained lows consecutive to factors we don’t understand, Neither of them would be helped by opening up the range.

The other side of it is – we have been able to use this range for almost two years now. It would be a big setback for us to lose that control. Of course we don’t have that control now, so I guess the argument does not apply :slight_smile: But my point here is that we have had the control up to when we started the pump.

After reading all the opinions in this thread, right now my first thoughts are:

  • we are going to prioritize sleep more than we have in the past. We will be ready to pay the cost that comes with it. If it means a more open triggering range temporarily, so be it.

  • we are not quite ready to go back to MDI for good yet. My son, in particular, loves the ease of use of the pump. We want to stick to it further before we write it off. But we will consider going back to MDI for two weeks to see what changes.

  • we are going to harden up further our criteria for changing basal, and see if some of our basal changes are unnecessary.

  • ultimately, we need to do better with the pump than without.

My problem is that probably none of these changes are going to significantly improve our present control. They are only going to allow us to live with less control. This is not the outcome I want :frowning: I want to be able to have as much control as we had without the pump, AND get the control capabilities that the pump gives us for sports.


#62

There was a very important thing missing from your list. I hope you’ll consider it.


#63

The changes suggested will both improve your control and your sanity.

Increasing your “trigger range” will actually improve your over all control because you are correcting at levels that you should not be correcting which is causing lows later on. You should not be correcting at 120 in the middle of the night. You certainly shouldn’t be waking up for it. There is a difference between good control and unhealthy over management One is a good thing and the other is counterproductive

Adjusting your basal less will improve control

Switching to a long acting will also improve your control if you can not resist the temptation to constantly adjust with the pump basal.

And K taking charge of his own management at night will both improve his control and the entire situation for everyone involved


#64

I italicized the part that I’m having trouble accepting. Maybe it’s the same thing that Eric and Sam were pointing to when they talked about treating with bolus and glucose rather than changing the basal. Here’s the thing: I suspect that you are using incorrect criteria when you come to the determination that the basal is wrong. It is routine and ordinary for BG to go to some level that is not where we think it should have gone based on our knowledge of food intake, insulin dosing, exercise, and so on. The fact that the BG went astray is not a signal that the basal is wrong, it is just a signal to correct with carb or insulin.

The signal that the basal is too low at a certain time during the day is that, starting at that same time every day, for at least 3 days in a row, the BG starts rising all by itself. If you see that, it is reasonable to change the basal schedule to increase the basal rate a small amount, starting about 1 1/2 hours before that time. Similarly if you see a pattern of BG falling all by itself, starting at a certain time of day, every day, for at least 3 days in a row, then you could change the basal schedule to decrease a small amount 1 1/2 hours before the drop always starts.

So you change the basal schedule only to fit the regular pattern of background insulin that the body needs every day. And this sort of tweaking is infrequent, because the background insulin needs are quite stable, perhaps changing with the seasons.

It’s a completely separate issue to put on a temp basal to deal with a predicted response to some particular circumstance, such as a particular sport, or a day of the week that is quite sedentary, or an illness. These are temporary circumstances, so they deserve a temporary adjustment. But again, this is an adjustment, before the fact, to anticipate a change in insulin requirement. “But the BG is running too low this evening!” isn’t a reason to change the basal. It’s just a reason to take some carbs. “But we can’t be taking glucose tabs every 30 minutes all night!” Ok then, take a good amount of slow carbs (like peanut butter) that will last for hours. A BG excursion is not suitable for a basal adjustment unless it is a regularly repeating event.

When I started with insulin I recall a time where I was getting kind of nutty because I just couldn’t figure out what was going wrong all the time and I didn’t feel like I was able to control my BG as I wanted. My CDE was very helpful by giving me a single sentence: “Just remember, if your BG is too high, you need more insulin.” It’s really as simple as that. You don’t have to understand every twist and turn. Don’t think you need to change basals or I:C ratios or correction factors just because the BG is wandering around, those fluctuations are unavoidable. The body isn’t repeatable and controllable like a mechanical device. Just gently push the BG back towards 100 with insulin and carbs when it wanders off, and everything will work out fine.

Some folks like to calculate numerous detailed factors to make sharp predictions about what the BG will do, and if that works then less correction is needed. But remember that a functioning pancreas doesn’t predict the future, it just makes lots of small corrections, and this is a simple approach that even humans with diabetes can do (Steve Ponder calls it “Sugar Surfing”.)

I see that you had an easier time on MDI. Why not treat the pump more like MDI? Put in a simple basal schedule that is basically right, and then just use the pump as a way to give insulin without having to carry around syringes and a vial. Don’t turn it into a big fight, it’s just an insulin delivery device.

The CGM needs to wake him from lows. If the alerts are already set on the most aggressive setting at night (“Attentive”), then add to the racket, such as by putting the receiver in a drinking glass with a few coins to rattle around. Someday he’ll be on his own, so you need to find the tools that enable him to take care of BG excursions. A CGM receiver plus a microphone and an amplifier turned up to 11 is highly likely to work, but there likely is a milder solution that the neighborhood would prefer…


#65

This is not a physiological issue in your son’s body. This is an issue that is being introduced solely by how the pump is being programmed. You absolutely have the ability to eliminate this issue.

As evidenced by the fact that it was not a problem with Lantus, until you got on the pump and started programming and constantly adjusting basal rates.

Sorry if it sounds like I’m being stern I just really want to help you get a handle on this and feel like I’m having a hard time getting through to you.


#66

@bkh, your whole response was very well stated. Nicely put!


#67

The fact is that, right now, he can be stable for multiple days at -30% when in strong exercise mode, and at +30% when in no exercise mode. So, clearly, his BG needs are varying by that much.

The pump intro was practically coincidental with the start of the school year and all the sport seasons that come with it. There were many changes at the same time, a mistake on our part: we were overconfident, obviously. But it is not possible for us to compare pump and Lantus one-on-one right now. We would have to go back on Lantus for 3-4 weeks to figure that out, something we are considering doing.

@bgh, I really appreciated your post! And I understand the feeling that inspires it.

His daily basal curve is reasonably well adjusted. It is a very simple one, up at night by a small percentage, down the rest of the time. It matches his daily rhythm reasonably well, and, right now, there is no repeating event that would cause us to believe we need to change it. We have not changed it for the past 2 months since it works well for us. The issue we are dealing with is not a changing daily curve, but a changing overall level as the intensity of his sports activities varies over the week and over the weeks.

I appreciate the fact that it is an easy thing to suspect when you are not faced with the reality that we have on the ground right now. But it is in general pretty easy to figure out. When, outside of any bolus DIA, we are in a sustained low that requires a lot of sugar every hour, or if we have to inject more bolus insulin every 60 to 90 minutes for multiple hours on end without taking any carbs, we know there is a basal problem. We have been sugar surfing for 18 months and learned basal vs bolus management from Ponder’s book when my son was diagnosed.

I understand that it may be difficult for many to identify with a highly varying basal. But, as I mentioned earlier in this post, it is a fact that, in some circumstances, he is stable for days on at +30% as well as, in other circumstances, at -30%, again for days on end, when his sports and health parameters are stable in this given set of conditions. And he clearly goes from one end of the range to the other as sports activities change: there is no magic wand that takes him from -30% to +30%, it is a progressive change. It is a challenge we have not been able to solve so far: we are unable to adjust to these changes fast enough as they occur, because it alaways takes us a while to figure out the change, so we are not in phase with the actual basal a lot of the time.


#68

Could he add moderate exercise on the “off days” so as to dampen the difference?


#69

We started doing it in the last 3 weeks. I think it will eventually be the way out of this. But we have not been successful yet.

The main thing we have done is using the stationary bike, because of the weather. It has been difficult to get to the intensity of swimming with it. One complication is that his BG reacts in an opposite manner to biking after exercise: it goes up quite high post exercise. So we have to learn how to deal with that, which won’t take too long I am sure.

I am also looking at the excellent suggestion that @TravelingOn made: workouts that simulate swimming. I had not thought of this.


#70

@Michel, In terms of the additional exercise, could “close enough” be “good enough” ?
ie - adding the bike in the house on the off days could possibly be enough to reduce the differences between the days even though the types of exercise are quite different?


#71

You can make it the same. Perceived level of effort, heart rate, same duration and intensity. You can pedal a bike at any speed and resistance. The only difference is that it will be just legs burning muscle glycogen instead of legs and arms.


#72

The plan we started 3 weeks ago was that when he does not have a sports practice, he jumps on the bike for 45 minutes the moment he gets home. But life got a bit in the way: he was sick for a week , then he had daily auditions for the school musical until late every day for a week, extracurricular projects etc. So execution has not been steady :slight_smile:

I am really hoping that this will make a big difference when we are actually executing well. He is on the bike right now :slight_smile:


#73

@Eric, is there a way to do some simple comparisons between sports so that we can come up with a parallel profile for biking in comparison to his swim practices, for instance? How would we approach it?

Right now we basically set up a resistance level and he aims for a specific cardiac rhythm, but with no calculations. Today, he is at 80% resistance and he tries to maintain 150 bpm, but it is a WAG on our part.


#74

The sick thing - totally discount that and put that right into its own category. Don’t even consider that one of your problems. Sick days are simply their own beast. I never make any permanent basal adjustment (or any other pump config changes) for sick days. I just tack on the temp basal for about 24 hrs at a time and keep pumping bolus every two hrs or sometimes just go with longer extended bolus. It is what it is.

If the Dex says high, we pump insulin. If it crashes too fast before we can let off the insulin then we carb up. Sick days suck.


#75

Since you don’t have heart rate data from swimming, the easiest way to do it would be just using perceived effort. Try to mirror the same thing the swim practice has - warmup, duration of segments, different intensity of segments. Go by feel. Put in the same effort during each biking segment that he feels during the different swimming segments. If swimming lasts 2 hours with a few 10 minute breaks, do the same with the biking. When he is done with the bike, it should feel the same as after swimming in terms of how tired he is.


#76

Give our advice a shot, if it doesn’t work out you can go back to what you’re doing now in a heartbeat…


#77

This is largely a function of how much more efficiently the insulin is being absorbed when he’s more active-- again not a physiological mechanism but a function of the insulin itself. I suspect you will see this effect reduced if you were to try tresiba for a basal, I certainly did myself… sure would be easy to find out… but you’re going to have to make other changes as well regardless of what you do for basal in order to find a healthy balance… that includes sleeping through the night unless it’s urgent


#78

@Michel, thanks for your clarification. It’s abundantly clear that you have good knowledge.

Nevertheless, I’m going to push back again, to a limited extent, just to be sure the issue has been fully explored.

First, let me absolutely agree that you can treat these situations with a temp basal. Now let me explain why, sometimes, that may not be the best approach.

In the first case, that of the sustained low, let’s consider the cause. If it follows (possibly by many hours) a rigorous workout, it’s not caused by too much basal insulin. The body is working to replenish its glycogen stores by sucking all the glucose out of the bloodstream, and rather than impairing this by cutting insulin, it may be better to support the glycogen replenishment by taking carbs. Some fast carbs to solve the immediate low, plus lots of slow carbs that will trickle into the bloodstream over time to replace the glucose being vacuumed out. I think Eric is an expert in this approach.

Similarly, there sometimes is a non-basal explanation for a sustained high: one that results from protein and fat that was eaten many hours before. In this case a long square-wave bolus may be a better adaptation than a temp basal. Some folks solve this via an approach called TAG bolusing. “Total Available Glucose” refers to the fact that it is not only carb digestion that puts glucose into the bloodstream. Some fraction of protein gets digested in a round-about way to glucose, over a period of several hours. A smaller fraction of fat intake also gets converted to glucose, over an even longer timeframe. So for TAG bolusing, they take 100% of the carb weight as an immediate bolus, plus some fractions of the protein and fat weights (I’ve heard 40% and 10% but it varies for different people) taken as a square wave over numerous hours (like 8, but it also varies for different people).

All that said, there’s nothing wrong with treating sustained highs or lows via temp basal changes on the pump. I did get misdirected when you called sustained highs or lows “wrong basals,” and that was the reason for my pushback. Thanks for responding so graciously.


#79

Yes, exactly! The most effective way is with a decent carb amount immediately following exercise, followed by smaller amounts at regular intervals for the next several hours.


#80

Michel I woke up to this cgm line and thought of your situation… according to this cgm is was just under 140 most of the night then drifted down to 113 by time I woke up. When I actually tested with a meter my bg was actually 92 at that time.

So the difference between me and you here is that I actually had perfect blood sugar all night and slept like a baby, whereas you’d have been up all night making adjustments, and then later overcorrected into a low and got no sleep.

When you hear old timers like doc and Eric talking about how they didn’t always have good control you realize they aren’t talking about not waking up to correct 120s? They weren’t checking their blood sugars at all, for decades… their levels were bouncing between probably 50 and 500ish (maybe higher even) all day every day, and they’re still doing well… of course nobody is recommending that… but you need to realize that setting a cgm upper limit above 120 so you can sleep is in no way, shape, or form loosening up your grip on control. I honestly expect that doing so would actually result in MORE stable overall levels… because youd not be correcting at inappropriate levels, which is no small part of your issue now… well, that and inconsistent and always changing basal levels… if we can iron out those two things I guarantee you’ll be able to sleep better, have better control, and this will become a smaller part of your and your son’s lives. I can promise you this.