-----Flatliners Club-----

[Terry4]

Jen - You are really making great use of your CGM data. What you’re learning about diabetes blood glucose control and female monthly hormone fluctuations comprise a great big hole in medical knowledge. Has anyone written a book on this? I feel like you are on the frontier of this phenomena!

To tell you the truth, I felt a bit sheepish about my success post when no one responded. It made me feel that celebrating success can really get on people’s nerves. The reason I persist is to put this data out there to let others know what is possible. I don’t think their doctors will.

Anyway, I like reading a post in the style you’ve written. In all the chaos that is diabetes, with a CGM and some precious attention, we really can start to tease out some actionable data. (By the way, that overnight line is gorgeous!)

[Jen]

No book has ever been written on hormones and blood sugar, at least not that I’ve seen. I think there have been a handful of studies done that indicate that women do experience a shift in their diabetes control throughout the month. But in books, I’ve only ever seen one or two sentences that say something to the effect of, “Women may find that their cycle affects their insulin requirements…” with no direction on determining what effects hormones have and how to respond to them.

I used to lurk on the old flatliners group, but rather than participating I just read the posts with awe and a sense that I would never be one of “those people” who managed such tight control. Then I got the Dexcom and began carefully analyzing its trends and responding to it many times throughout the day, and everything changed. I am still not perfect, and there are some things (like going low carb) that would probably help my control but that I’m not willing to do. But, diabetes has become a priority for me and so I put in as much effort as I’m willing to keep tight control, and the times when things still go crazy I try to figure out the cause, and if I can’t figure out the cause I just let it go without emotion (another big change I’ve made, not getting frustrated over blood sugar levels).

I can see how people might get frustrated reading this thread, especially if they feel like they put in 110% effort and still can’t achieve good control. I was there for over 20 years of my diabetes life. In the end it wasn’t so much about effort but about having the right tools and knowledge and perseverence. I realize that I’m incredibly priviledged to have access to these tools, even if I gripe about having to pay for a CGM out of pocket.

I think in this thread it’s important to show successes as well as failures. Even those of us participating here don’t have perfect control—there is no such thing. I wish that there were more posts where people shared their learning experiences and their decision-making processes as examples. It’s definitely something doctors never provide.

And you are right about teasing patterns out of chaos. The post focused on hormones, but that was definitely not the only diabetes decision I made throughout that day. On those days above I used nudges of glucose tablets and small boluses, temporary basal rates, food and pre-bolus times that I knew worked for me.from previous trial and error, and regularly checked the CGM so that I could take action if I felt there was an impending high or low, rather than waiting for the Dexcom to alert me when I was already there. The hormones bit was only a small piece of the overall puzzle.

[Terry4]

@Jen

On those days above I used nudges of glucose tablets and small boluses, temporary basal rates, food and pre-bolus times that I knew worked for me.from previous trial and error, and regularly checked the CGM so that I could take action if I felt there was an impending high or low, rather than waiting for the Dexcom to alert me when I was already there.

Even though I was doing some of those micro-nudges before reading Sugar Surfing, I am more attuned to that whole philosophy of diabetes requiring more dynamic rather than static responses to blood sugar moves.

I’m impressed with how much the CGM has changed your point of view. I wish everyone that wanted this technology could gain access to it. That, plus the even more important knowledge required to use it well.

[Jen]

Continuing on from my previous post:

I ended up running in the upper half of my target range all morning Saturday despite doing “nudges” with small boluses, and then in the afternoon was outright high. So I decided to up my basal rate by an additional 0.05 u/hr and used 1:7 for my I:C ratio. But then I had a low in the evening and another overnight, so I put those settings back to what they’d been Saturday morning after only about 12 hours.

Sunday was pretty good. I again went high during the late morning and early afternoon. So, I decided to bump up only my basal segment from 6:00 AM to 9:00 PM by 0.05 u/hr, rather than bumping up everything. The evening seemed fine.

But then the clock ticked over to Monday, and this happened:

Suddenly, out of nowhere, my settings all seemed way too high. I got very little sleep overnight and I spent the morning trying to take minutes at a meeting while simultaneously trying to shut my CGM alarm up every 15 minutes and eat an entire tube of glucose tablets (while trying to look as inconspicuous as possible in front of 15 of my colleagues).

Around noon I lowered all my pump settings right back to where they had been on Friday. Despite this, I had to eat about 30 grams of carbohydrates without a bolus throughout the afternoon, and I had another low as I was commuting home. I’ll leave my settings the way they are for now and see how things unfold.

It’s times like these that I find myself fighting not to get frustrated with diabetes. I put a lot of work into it and try my best to respond to changes and also consider what’s coming up so that I can try to manage it the best I can. It can be very, very, very frustrating when I do that and things still go so wildly out of control. I also strongly suspect that having blood sugars that are far out of range for hours (not to mention not getting a good night’s sleep) contribute to my feelings of frustration.

There was a time when I used to feel angry and frustrated after nearly every high reading. Since getting the Dexcom, I try not to get emotional about my blood sugar, but rather just respond to it as best I can. Maybe I was wrong about hormones, but maybe not. I tend to have a period of time right in the middle of the month where I struggle like this, bouncing without warning between high and low, as if my body isn’t quite sure what it wants to do. Maybe it was something entirely different (forefront in my mind is an evolving notion that different infusion sites—arms, legs, stomach, hips—absorb differently, but I have no idea yet how I’d respond to such changes if they are this drastic, since sites do need to be rotated).

So, even though I don’t know exactly why such rapid shifts happen, I just try to deal with it as it happens, consider what it might have been in case it happens again (so I can pick up on a pattern more quickly), and try to keep emotions out of it. But if the CGM has shown me anything, it’s definitely vindicated my sense that things were randomly inconsistent even when my food/routine/activity didn’t chagne at all!

[YogaO]

@Jen

So, even though I don’t know exactly why such rapid shifts happen, I just try to deal with it as it happens, consider what it might have been in case it happens again (so I can pick up on a pattern more quickly), and try to keep emotions out of it. But if the CGM has shown me anything, it’s definitely vindicated my sense that things were randomly inconsistent even when my food/routine/activity didn’t chagne at all!

UGH!! I agree with you, Jen.

Right now, I am sitting here with my CGM telling me my beautiful run of the last three weeks is over - (95% Time in Range of 65-140, btw!). I went to bed last night @ 99 (5.5mmol) and watched as I slowly climbed to 160 (8.9), including two correction boluses during the night. Today, I briefly touched 90 (5.0) post breakfast and it’s been running above 150 (8.3) for the last 2 hours, my correction boluses are maybe keeping me steady, but not dropping. I will have to change my infusion set as soon as I get home.

[Terry4]

@Jen

Suddenly, out of nowhere, my settings all seemed way too high. I got very little sleep overnight and I spent the morning trying to take minutes at a meeting while simultaneously trying to shut my CGM alarm up every 15 minutes and eat an entire tube of glucose tablets (while trying to look as inconspicuous as possible in front of 15 of my colleagues).

Jen - It’s these kind of episodes that really try our souls! The rest of the world just doesn’t see how many things we attempt to balance. You toughed your way through and now you’re trying to regain your footing. I’m sure you’ll pull through to a better place!

@YogaO

Right now, I am sitting here with my CGM telling me my beautiful run of the last three weeks is over - (95% Time in Range of 65-140, btw!).

@YogaO, that’s an incredible time in range number. Congrats! I’m sure you’ll also figure out how to get back on track.

Maybe it’s the change of seasons cause I had a tough night last night, too. And this is problem I thought I had dealt with and solved. My diabetes never ceases to humble me!

red line = 65 mg/dl, yellow line = 140 mg/dl

Got back up, dusted myself off, and tried to restore some metabolic sanity.

[Dragan1]

Hi all! I am relatively new to TUD (or any other online community). I’ve been very impressed by TUD overall - so many supportive and thoughtful posts. Looking forward to learning more from you guys and will try to contribute myself if I can. 40 years T1, I have been pumping for about 15 years, and have had Dexcom CGM for about a year (what an amazing tool!). With CGM I’ve decided I should set some really ambitious goals: 100% time between 70 and 140, and an average around 90. Not easy or even realistic, but it never hurts to do the best you can. I guess I should post some graph here, so here is my last week. Following @Terry4, I have set the range to 65-140.

[Terry4]

@Dragan1 - Congratulations on your amazing control! My goal for time in range is 80%; I consider 90% better and 95% best. I rarely attain 95% and I know how hard that is. Good for you!

I set the lower end of my target to 65 mg/dl since that is the level that I start to experience symptoms like an adrenalin response. Is this true for you, too?

[Dragan1]

If I were to pick a single value, it would be 65 for me too. However, it is a bit more complicated in my case - depends not just on a particular bg value but also on how fast bg is dropping, and on other factors. For example, when exercising I would feel low when my bg is crossing somewhere between 80 and 70. If you asked me the same question a year ago (before I used CGM) I would have to say that I simply did not know. Over the years, I had lost the ability to sense lows. Luckily I was still able to stay away from passing out and seizures, but it was not fun. This was how I finally convinced my endo that I really needed a CGM! The first thing I did with it was to figure out how to properly anticipate and treat lows, which is not that difficult when you can see the trend. As a side note, this was a good exercise to better understand the dynamics of bg control more generally, which remains work in progress, but I feel pretty good about what I can do these days. I have since also regained low bg awareness (to large extent).

[Terry4]

Sugar Surfing Example

I read Stephen Ponder’s Sugar Surfing book last month and have made several references to it regarding responding to diabetes in a dynamic, rather than static fashion. Last night I woke up several times to my CGM reading slightly high. Even though I was well within my target range, I wanted to nudge my blood glucose trace down into my preferred sub-100 mg/dl range. While I was not successful doing that, I woke up to a flatline overnight trace and likely pre-empted a gradual climb into the 150+ mg/dl area.

For some reason, other than out-of-range BGs, I slept lightly last night. My CGM woke me up once with a 120 alarm. Each time I woke up and noticed a 110-120 mg/dl reading, I attempted to nudge the readings downward with a micro-bolus. This is a good example of what Ponder calls sugar surfing. It simply means acting in the moment to make responses to the CGM curve. My response was an attempt to drop it to the sub-100 level with small boluses. The final two micro-boluses took place after I woke up.

red line = 65 mg/dl, yellow line = 140 mg/dl

[Ahnalira]

@Terry4

This is a good example of what Ponder calls sugar surfing

I haven’t read the book, but that’s what I have been doing for a couple a months or so… really helps me keep bgs in the “zone.” I do it by injection, and the key, for me, is to adjust in very, very small amounts

[Terry4]

@Ahnalira

I do it by injection, and the key, for me, is to adjust in very, very small amounts

Yeah, it’s amazing that when the BG is moving mostly sideways, it often doesn’t take much insulin to move the trace. My example resisted moving but did eventually budge. I never thought I would be injecting an insulin dose of 1/2 unit. Sounds like you are already “surfing!”

[Dragan1]

Very interesting! This is how an artificial pancreas system would work; probably even more frequent and even smaller boluses. I have Sugar Surfing on order - curious to compare the book techniques to what I’ve been trying to do this year. Thanks for sharing the notes.

[Thas]

Been reading Dr. Ponder’s book – and finding that what he’s saying is also what I’ve been practicing - albeit with less of a “system.” I’m hoping that with some of the advice in Sugar Surfing, I can improve on my “performance.”

Here’s yesterday’s results:

(The limits are 60-130, with the day’s low at 66 and high at 126.)

[Thas]

Bought the E-Book. I’m not good at waiting!

[Terry4]

@Thas, that is a very nice 24-hour line. I also found that I was using some Sugar Surfing techniques before I read the book, just not organized in a system. One of the most effective, and I think easiest to implement, is the “waiting for the bend” pre-bolus tactic.

The book has really changed my whole perception of diabetes. I now appreciate better how dynamic this game is. Thinking we control it with just static formulas does not work well.

Thanks for posting your line. The more variety of people that get into this thinking about their diabetes the more likely it is that others will be persuaded to give it a try.

Congrats on getting great results from what I know takes hard work and persistence!

[Terry4]

Dexcom Clarity 14-day Standard Day

This is Dexcom’s new cloud-based data report system that it calls Clarity. I really like the 14-day standard day report since it contains sufficient data to represent how you’re doing. I can quickly see I have moderate risk of going low in the 11:30 p.m. - 1:00 a.m. period. The data bars use data from the 15th percentile to the 75th percentile. This system throws out the the more extreme data and makes it easier to see where you need to focus your attention.

I had another bout of sub-65 mg/dl lows last night and that continues to challenge me. I’ve been fighting this pattern for the last month. I haven’t figured out how to systematically pre-empt this tendency. I’ve been playing with my 9 p.m. to midnight basal rates and have changed them all the way from 0.6 units per hour down to 0.1 units per hour and back up to 0.2 units per hour. Perhaps I’ll split the difference and try 0.15 units per hour and see if that might work.

I love the fact that the CGM illuminates my data in such I way that I can base tactical changes on what I see. I know some people don’t like this level of intrusion on their quality of life but I don’t mind. I realize that this style of management is a bit “down in the weeds” but overall it helps me.

[Khurt_Williams]

I guess it’s possible if the person actively monitored BG and actively did things to keep BG in range (like eating only protein and fat, exercising when BG started to trend up, eating small (<5g) carb/glucose doses to keep hypos at bay. But … thats a lot of work.

[Khurt_Williams]

You want to try this app and web site. One properly setup and after entering data points over a few weeks the app starts to notice patterns and make predicts. The best feature though is that the app starts to make suggestion on adjustments to insulin dosing etc.

I’ve been using it to work my way through some BG roller coaster rides that seems to always occur after dinner.

[Terry4]

@Khurt_Williams

app and web site

I’m glad you find ManageBGL useful. I’ve looked at this app before. Manual data entry for insulin, carbs, blood glucose, and exercise makes this app too burdensome for me. I just logged in again to verify. Am I missing something?

I use the Diasend system as well. I can upload my CGM, pump, fingerstick meter, and FitBit exercise data and get integrated reports.