FUDiabetes

Is it me, or am i managing this completely wrong?

Greetings all,
I never cease to be amazed when i read about T1Ds looking to target c. 110-115 (6.1 to 6.4 in my European language) as a waking BG level, and those that look to keep standard deviations down to c. 25 (1.4mmol). This sort of glycemic management is quite literally light years away from my daily struggle to make it through each day with an average BG of below 8. Does anyone else find this? Or is my diabetes impossible to manage? Or am i utterly useless at managing it? If i wake up anything between 3.5 and 10, i consider that to be a successful start to the day. When people talk about targetting such narrow bands, it’s as if they’re speaking another language. It’s honestly quite depressing - I could only dream of actively looking to target to anything like this quantum of accuracy. My daily standard deviation stands around 3.5mmol (65) and has recently dropped to around 2.7 (50ish) after i have installed a miaomiao thing to my Libre arm to convert it to a CGM… which is an improvement, but just nothing like levels i see people on this forum casually discussing. My A1C is around 6.5, which i don’t consider to be a disaster (and has hovered around there for the last 3 or 4 yrs), but i think this really masks a continual load of highs and lows… which i’ve read could in fact be worse than running a high average, ceteris paribus. My average daily BG is around 7.5 (135)ish.
I run or cycle every day, eat a low carb diet (as low as i can without wasting away - you need carbs on the day of a 15mile+ run!) and try to generally be as healthy as i can, but i’ve just no idea how these sorts of levels and this degree of management are achievable.
What on earth am i missing?

10 Likes

John, my son (17) seems to be the same as you as far as control goes, and I would not say you or he are completely wrong. I think there is a combination of things going on. First, some people are able to enjoy living a very structured lifestyle which I think makes really tight control quite possible, additionally I think there is a pretty wide difference in alpha cell functionality in T1’s which can account for much of the YDMV type of reactions. If a T1 has more regular alpha cell functionality then they would be more easily able to run higher amounts of insulin without going low as often. Finally, we have been amazed by differing carb responses in my son’s T1 friends. Where they can eat 15 carbs and only go from a low to normal blood sugar my son will very often go from 40 (2.7) to 250 (14) on a smaller amount of carbs. In fact when my son treats a low he will always inject insulin at the same time to blunt the rise.

Since you have access to the CGM data, are you constantly working on improving your approach to different situations to dial it in better? If so, I think you may be able to work toward the next step lower in A1c management.

5 Likes

There are several of us here at FUD that exercise daily. You could check out some of the previous threads and wikis discussing strategies to stay in range pre, during and post exercise. @Eric has helped many put into practice these techniques, and I for one have been a beneficiary of his posts. I run or bike most days, too, and without paying close attention to prepping for a run, I would be a mess!

I agree, the CGM is key to lowering SD and increasing TiR. Are you also on a pump? I am on OmniPod and Dexcom G6. I continually have issues with G6 but when it is working properly it gives me peace of mind and I’m able to respond quickly to any trend. I also use Loop which is a DIY automatic insulin delivery system which integrates the CGM and pump data to give auto corrections either by instructing the pump to bolus corrections, increase/decrease basal, or suspend basal. It is not a cure but certainly takes some of the burden off of constant BG management. Many here use Tandem’s commercial, Control IQ system which works similar to Loop.

3 Likes

Thank you both for your comments. No pump, i’m on Tresiba (17u daily) and Novorapid (wildly varying doses…anything from 5u to 30u per day).
I actually manage okay while exercising, because i generally know what happens and i’m focussed on it… i know i need 10-15g of carb for every 5mi or so, and i will always start out at 7-10. it’s all the other times, just living life, when in meetings, on calls, on the Tube, out for dinners/lunches that the wheels come off.
And just as a thought experiment : let’s someone who targets 6.1 - 6.4. If they glance at their CGM and see they’re at 7.5 - what do they do? for me - i think there is little, if anything, i could do. 1u of NR will send me down anything from 3 to 5mmol, and i can’t seem to get a pen with 0.5 increments… so i’d just leave it. in other words, i feel incapable of making adjustments on this sort of microscale, and simply don’t understand how others can?
Similarly, i find i’m always on a glycemic excursion. i’m going up, or i’m going down. i never seem to stay constant. does everyone share this? if so, doesn’t it require constant tinkering to stay at 6.1-6.4? otherwise, how do people stay so constant? if exercising daily, surely they’re needing to replenish their liver with glycogen through carbohydrate intake, that needs insulin… how are they maintaining their levels? i just don’t get it. i’m 16yrs in, and i’m still missing something fundamental here.

4 Likes

Tresiba limits your ability to have a variable basal rate. Personally I am not a big fan of this basal for T1’s.

If you are using NovoLog insulin, get this pen. It has 1/2 unit dosing. It is called the NovoPen Echo.
(If you prefer Humalog, they have some 1/2 unit dosing pen options also.)

4 Likes

Yes, that is one reason I switched to the pump - so I could give smaller correction boluses. Another reason was so I could suspend/reduce the basal for exercise. When on MDI (humalog), I simply tried to “eye” a bolus that was less than the syringe 1U (I used syringes not pens). Not at all ideal so I feel what you are going through.

The basal should be keeping you pretty constant outside of meal time. I think you are extremely active and that may have something to do with the glycemic excursions. Your basal may not be tuned to all the activity your body experiences. Yes, indeed, you certainly need to replenish your carb, and I was missing something fundamental, too, for many, many years!! @Eric is the expert on this subject of carb replenishment! I think he can better describe the mechanisms than I can so I’ll let him add his comments!

3 Likes

Well for my son, the way we get a level day (not all days are level) is by tweaking his basal profile on a pump. His current settings deliver between 1.2 to 1.7 units per hour. He currently has 7 segments where his basal rate changes during the day. We are working to try and get that to 4. When we were only on Lantus we used to split the dose to get at least a different day/night basal rate.

2 Likes

That looks to me like you have just identified perhaps your primary obstacle.

To maintain BG in a tight range you need to notice when it is starting to wander off, and you need to take a correction of insulin or carb that will push the BG back into the good range. If you see you’re at 6.7 and rising, you need a small bit of insulin to keep it from getting to 7.5.

There are basically 2 ways to accomplish that. One is with a dosing device that can give a small enough correction bolus. Most insulin pumps are suitable and can give really small and accurate doses. Before I had an insulin pump I was on injections with the small 30u syringe. I could estimate a dose to 1/4 unit by eye, drawing the plunger to an intermediate position between the 1 unit lines. For me, 1/4 unit was small enough to solve the problem. You may be more sensitive than that, in which case look to the second approach.

The second approach is to use diluted insulin. I think it may be Lilly that can provide vials of dilutent for insulin, and so if you take an empty vial, add 90 parts of dilutent plus 10 parts of normal u100 insulin, you get insulin that is 1/10 the normal strength. Injecting 2 “units” of this mix with the insulin syringe only gives you 0.2u of insulin.

Given the CGM and the ability to take really small doses of insulin or glucose, it then becomes possible to learn how to recognize from the shape of the CGM graph where you may be headed, and take a sufficient but not excessive correction before the BG has a chance to wander off very far. Dr. Stephen Ponder has popularised this technique as “sugar surfing,” which is described with many examples in his book of that name. There’s the related web site at sugarsurfing.com that can give an introduction.

6 Likes

@john_coburg, how old are you?

I am 15.5, and I also have not been able to be even close to that since I got into puberty. I understand that, for most males, that is true until at least age 25 or later.

I am like @Chris’s son and you. I also run almost every day like you, typically 6-7 miles. I eat low to mid-carb, for sure not very carby. I do target 100 or lower but I go up and down like an elevator every day, with huge hormone peaks. Sometimes I need 20 units or more just to get back to normal after a hormone peak when I have eaten nothing for 4-5 hours.

Like you, I control my A1c pretty well: I am typically between 5.5 and 6.5, and mostly around 5.8-6.0. But, many days, it is just an average between being very low and very high. However, I talk to an endo who does research and studies, and he tells me that the “standard range” is 70-180: I still do pretty well for that range. Of course, the range I’d like to be in is 70-120, and that is another matter. And there are times every day when I am way over 180, or way under 70.

I think it takes a lot of hard work to do well when we face these conditions. What I like least about my control is that I spend way too much time in deep lows. I want to improve that. I am almost ready to go Looping. I think I will start in a week or two, and I will see if I can make it work: I have the hw, and I have set up all the sw with my mom and dad. Now I could start openlooping any time but I want to gather a bit more data about the parameters the model asks for: I might as well get it as exact as I can (if such a thing exists for us T1Ds).

One note I have: one difference I have from you is that I am often able to wake up in tight range. But this requires a good number of wake-ups, and, when I am really tired, I don’t wake up to my alarms. I live with my mom and dad, and, if I am very high or very low at night and I don’t wake up they treat me with my PDM. So it depends on the nights. Some weeks I am able to manage my nights fully and keep in range. Others not.

But: I think we all are super different. Did you see the poll about who needs more insulin day or night? We are 50-50 here. Same for showers: some go up, some go down. So what this means to me is that, for some of us, some things are harder, and some are easier. For me it is maybe easier to manage night than for you, because that is what my T1D is like, and I am sure there are others that are easier for you than for me. I am pretty sure that your T1D, Chris’s son’s, and mine are harder to manage than many T1Ds who have been diabetic for a long time, because they don’t have as many peaks as we do. But I figure it will probably become easier as time goes on.

6 Likes

@Chris, I also had 7-8 segments. But last year I took them all off and went back to a single segment. I use extended boluses when I need to adjust. For instance, on school mornings I go +35% until noon, and I add 3 units when I leave home.

Afer going back to 1 segment, I realized that, for me, the segments were trying to control situations that were not regular enough so half the time the segments were not doing the right thing. They also confused me a lot: I had a hard time reasoning out why my BG was doing what it is doing. Now I still don’t know why, but I know it’s not because of my basal.

I don’t remember where I read it, I think, in Pumping Insulin, the author writes that he had the same problem and he also went to a single segment. So I don’t feel too bad about getting confused by lots of segments.

4 Likes

Interesting. I heard it was almost impossible to tinker day-to-day. I was on Lantus for 10yrs and switched to Tresiba at the recommendation of my endo after having a string of awful night-time hypos, a couple of which involved seizures (tongue-biting, injuries, just awful). Perhaps now i have a CGM i could consider switching back to Lantus, which is more easily adjustable. If i typically exercise (moderately) for c. 1hr per day, and one day have a day off, would you say that would deserve a c. 5-10% increase in basal, if possible? At the moment, i’m effectively unable to make such changes.

I’ll take a look at this. 0.5u increments would be helpful.

2 Likes

This is interesting… but in terms of (micro?)management, it would be revolutionary to me. My endocrinologist (since diagnosis 16yrs ago) generally seems to think my 7.5mmol average and 3.5 std dev figures, with c. 6.5A1C is just fine. He wouldn’t (i suspect) dream of suggesting a try to correct a 7.5 reading to keep it at 5.5. He would think that was micromanagement which is requires time and effort far and beyond the benefits accrued. He seems to think as long as I am staying 3.5-10 most of the time, i don’t need to worry about the rest. The talk on this forum of targeting 6.1-6.5 and having kittens are readings of 8 seems to be utterly foreign to me, and i’m struggling to work out whether my approach needs to change or not. I’d love to be able to target such tight ranges, but i can’t work out if it’s a) possible or b) worth the effort.

I’m not on a pump and am really not keen on the idea. So 0.25 and even 0.5u (currently) aren’t possible. But even if they were, wouldn’t i spend the whole day injecting small doses? It seems to be an intolerable incursion into my life, which is already utterly dominated by this disease. Maybe i’m wrong, but i’m struggling to understand the medical justification for such precise management.

This does sound interesting - but again, it feels like so much effort. Perhaps mixing can become easier/quicker with practice, but it sounds to me to be particuarly time-consuming. i try to keep to 5 or 6 injections a day, just for my own sanity. if i could regularly dose 0.2U, i can see this jumping to 10-15 inkections per day. Doesn’t that cause a risk of lipohypertrophy in the injection sites? I have a ‘typical’ T1 frame… i’m 62kg and 5’10, so very little fat to inject into at the best of times.
Of course, there are no short-cuts, i get that, but do i really need to be correcting a 7.5 reading? That would represent a sea-change in my approach to management of this disease, and i need to try to understand better whether i need to make that change…before making it.

Thank you. I’ll have a read of this.

2 Likes

I am 40. I was diagnosed at 23ish.

I target having an average of 6-8 (110-145 in your language)…if my day’s average ends up in that range, i consider that an achievement. Having joined this forum and reading of people’s range targets, i fear this may have to radically change.
What do you mean by hormone peaks? I haven’t come across this phrase. Which hormones, doing what? Is this related to your age?
20u - crikey. i think the most i have ever injected in one go is 10, for an enormous pizza (a rare event, of course), an i’m pretty sure i went low and should have dosed 7 and 3 an hour or two later. Incidentally, i can’t remember a time i haven’t eaten for 4-5hrs (except at night). I’m semi-continually eating. Excercising aerobically an hour a day, and weighing 60-62kgs, i feel i need to!

Ditto. My endo seems relaxed. Perhaps he ignores my occasional 300+ readings.
I too spend too much time <3.5 (63). Glimp tells me i spent 10% of the time below 3.5 over the last year. That’s way too much low time… but i feel if i try to reduce that 10% to 3-4%, my average glucose will rise from 7.5 to 8.5 or higher. Feels i can’t win.

I honestly don’t know what that means. I keep hearing the ‘loop’, and i just equate it to being on a pump with a CGM, but i’m sure there’s more to it than that.

You’re lucky. My spreadsheet tells me i have a late-night/morning hypo that i sleep through to c. midday 2.1x per month over the last year. That is utterly intolerable. The miaomiao sensor (and effective CGM) i hope will be a game-changer in this regard, and stop this happening, allowing me to be more ruthless with managing highs without the fear of wiping myself out.

I really would like to know whether this is true. I’m generally my own worst critic, so tend not to believe that ‘some T1Ds’ have it worse than others… well, perhaps they do, but they just haven’t worked out how to manage it properly/aren’t as diligent. I don’t know. It feels like we have it harder, but how could that be, physiologically? I hear of ‘alpha cell-damage’ potentially playing a role here… some T1Ds may have lost their alpha cells as well as beta cells, making management (particularly of lows) harder… but since i have big morning highs (more often than not) i suspect my alpha cells are working hard… too hard.

I only wish this were true. Although my A1C has stayed fairly constant and perhaps improved a little, i find my average glucose level and std. dev. has drifted higher over the years. I think i used to average 7.0 and 3.0. I’m now at c. 7.5 and 3.6. It’s getting harder, if anything.

2 Likes

@john_coburg welcome! You’re not alone. It’s legitimately tough to get into that range, at least for us. My son is 6 and while his A1C is usually in the 6 to 6.5 range, that hides routine highs and lows which are objectively not great, and his standard deviation has never been below 45. We have not mastered getting numbers into a tighter range because it would mean a more regimented way of life (i.e. wake up at the same time, eat the same breakfast, lunch and dinner every day, have the same exercise schedule) and a ton of data collection and even then I’m just not sure. We’ve managed to improve things transiently – on the order of a few months at time – but inevitably life gets in the way, we forget to analyze the data and act on trends, and ups and downs become more frequent.

In my experience, things change fairly frequently, so getting into a tighter range often requires setting a time every week to do data analysis. When we do that, we often start with basal rates overnight, then migrate through the day. Then we do carb ratios and then finally ISF. But, we also use Loop, which is an automated way of adjusting basal and bolus levels from his pump based on his blood sugar numbers. I’m not sure if we’d even be able to achieve the numbers we currently do without that. So you’re doing great. Also know that the risk of complications from T1D, as far as we know, seem to rise around the 7 to 7.5 range, and that most studies have not found improved survival or outcomes when you get down into the normal A1C range. Now, that could be because until now, no one had managed to accomplish a normal A1C without a ton of lows and highs.It is certainly possible that a completely normoglycemic blood sugar profile would indeed lower complications further. But the fact that there are so few people out there achieving that suggests it’s very hard to do.

2 Likes

we have a pen that doses 0.5 unit increments. I’m not sure if we have a spare and if it works for Novorapid (we use Novolog, which I think is the same, but maybe the packaging is different in different countries?) but let me find the name for you at least. Also you can dilute insulin by 50% using what’s called a diluent and have that in a vial and use that for micro-corrections, along with old school syringes, if needed. When our son first started in insulin, he had a daily dose of less than 2 units. And we used 1:10 dilution. So it’s definitely possible. Diluted insulin is less stable so it might not last as long in the bottle but I think it could help you with microdosing. On the other hand, you’ll find you may need 20 injections a day and tons of little mini-carb bumps if you are fine-tuning your blood sugar levels to the 100 to 115 range…

2 Likes

At an A1C of 6.5 you have greatly moderated your risk of bad outcomes. It is sensible to find a good balance of effort and diminishing returns. I think the evidence is clear that A1C 5.8 — safely obtained — has better outcomes on average, and 4.8 better still, but you are right that we must find a sensible, tolerable place to live.

I got T1D in my 50s rather suddenly and with no family history, and was on injections (typically 8x per day) for the first 7 or 8 years. After my first severe low I obtained CGM (the miserable Medtronic Guardian and harpoon inserter) and found that by sugar surfing on the CGM I actually made my life better: smaller excursions means simpler smaller corrections, and being in range most of the time for me means feeling better physically and emotionally. Now I run LOOP software which automates much of that, reducing the burden on me.

The concept is simple. A computer program listens to the CGM reports of BG every 5 minutes, and instructs the pump to change the basal rate (or even give a bolus) to direct the BG back into range. Tiny automated course corrections every 5 minutes. The “closed loop” means the 5-minute periodic cycle: the current BG value controls the current insulin dose which in turn alters the BG value for the next iteration of the loop. The circular relationship of cause and effect between BG and insulin dosing is the closed loop.

Frequent small corrections when drifting high to severely curtail the hyperglycemia will give a good A1C without needing all that time too low in order to reach a good overall BG average. Each one of us must find the balance of effort and outcome that makes us most comfortable. This is not an issue of morality or strength, it is a tradeoff that is completely individual. I do find that automation tips that tradeoff in my favor by reducing the need for me to pay attention constantly and intervene frequently.

3 Likes

Are you possibly confusing “acceptable range” with “target”? I don’t think many people here are staying between 6.1 and 6.5 most of the time. I would find that totally impossible. But that’s the number they aim for (actually lower than that, more like 4 or 5 or so) while allowing a swing-range on either side.

Personally I think your endo is correct: your overall average numbers are okay, but could do with some small tweaks: your average of 7.5 and your deviation could be a little lower, and you could lower the upper limit of your range to 8 for a tighter target range. However, this will require frequent small injections or a pump, both of which you are now resisting. Your injections would be small amounts for the most part, so lipoatrophy would not be a concern (they aren’t to me, anyway, and I suffered it in childhood).

If you can’t find half-unit insulin pens where you live, have you looked for half-unit syringes? I use 3/10 mL syringes with half-unit markings. Diabeticpromotions.com sells two kinds of half-unit syringes; they say they ship worldwide, but shipping from the US is expensive, so dig around in your own country first. I use the 8 mm but there’s also a 6 mm. These are short enough to not be any discomfort even where I think I have no fat.

2 Likes

I also get the impression that other people have tighter control than I do. I’m not sure if it’s true of course — my endo is not concerned but there could be many reasons for that, one of which might be that my control is pretty good.

In any case, I’d like it to be better. This forum has given me a lot of hints. Some things that I do now thanks to what others have said here:

  • pre-bolus when my BG is high and I plan to eat soon
  • override my pump’s bolus calculation when my BG is high and I don’t think it’s going to give me enough. I carry glucose tabs all the time in case I’m wrong. I am less likely to override at nighttime because I don’t want to go low while sleeping
  • get my heart rate up when my BG is high. Now that I work from home all the time due to the pandemic, I can do jumping jacks at my desk during a meeting and nobody knows :slight_smile:
6 Likes

Interesting food for thought @Kaelan. I will talk with my son and see what he thinks. At 17, he is his own man so to speak and so my advice is considered but optional. It is great to see you back on the boards. I hope your summer of giving back to your community is rewarding enough to carry you through whatever happens for school next year which is sure to be interesting but also frustrating.

5 Likes

Thank you for the commentary. I also have frequent ‘regime changes’ where what was working suddenly doesn’t, and the whole thing needs recalibrating. Must be very difficult managing the glycemic excursions of such a young boy - well done for doing so well so far.

In your comment above, are you referring to A1C here or average BG (in mmol) ?

2 Likes