The Unreasonable Math of Type 1 Diabetes
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The Unreasonable Math of Type 1 Diabetes
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Re: The Unreasonable Math of Type 1 Diabetes
#2The one that a lot of people seem to neglect is that the factors change. This can be slow or abrupt and often or rare. It happens and learning to recognize(the hard part) and then adapt can lead to better outcomes. Waiting for a MD/Nurse to suggest changes is often too long.
Re: The Unreasonable Math of Type 1 Diabetes
#3My younger brother was diagnosed with Type I when he was 4 and I've always thought I had a pretty good handle on how tough having diabetes must be. I recently had gestational diabetes when I was pregnant and boy was I wrong. It's TOUGH. Particularly getting a handle on glycemic indices. I will say it turned me into a huge proponent of massive amounts of protein and fiber in my diet (but kinda turned me off Thai food :/ )
Re: The Unreasonable Math of Type 1 Diabetes
#4Hey Graham -- great post! The Medtronic / Guardian sensor combo is generally disliked by patients, though (in the US) the Medtronic 770G is FDA approved for ages 2+.
Most prefer the t:slim X2 with "Control-IQ" (their hybrid closed-loop: https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu...), which is FDA approved for ages 6+, and works great.
The bleeding edge is the Beta Bionics (https://www.betabionics.com/) bi-hormonal system (insulin + glucagon), currently in clinical trials for ages 6+.
Re: The Unreasonable Math of Type 1 Diabetes
#5The one that a lot of people seem to neglect is that the factors change. This can be slow or abrupt and often or rare. It happens and learning to recognize(the hard part) and then adapt can lead to better outcomes. Waiting for a MD/Nurse to suggest changes is often too long.
This is an excellent point. What makes this even harder is that some of the changes (like basal rates) the equipment is good about supporting multiple profiles and letting you switch between them. Where as the carb ratios and correction factors are set once and overwritten when you update them, and hard to generate reports on how they are changing over time... so not designed to really be adaptable.
There are micro factors (time of day, activity level, sickness level, gut health) and macro factors (months/years, age-dependent / hormone-dependent, growth spurts, climate / time indoors versus outdoors, etc.) factors that will impact both your basal rate and your carb ratio / correction factors.
So the carb ratio and correction factors are programmed based on hour of the day. 18 carbs per unit from 12am - 8am, 16 carbs per unit from 8am - noon, 14 carbs per unit from 12-8pm, etc... and then all these numbers may need to be shifted from time to time.
The urge is to somehow try to track everything (mood, health, activity, phase of the moon, food intake, and of course your blood glucose level every 5 minutes) and input into an algorithm that will look at how often you ended up too high or too low after eating XYZ, or how much your BG rose or fall when you weren't eating, and then make tiny incremental adjustments to the carb ratio, basal rate, and correction factor curves every week.
Currently the state of the art is the doctors generates a bunch of reports once every 3-6 months, eyeballs them, and decides; "Hey, we're gonna try bumping up your morning basal rate by X, change your evening carb ratio by Y, and ..." and then you make the changes and hope things get easier.
When the ratios are right, you can dose for what you eat, and end up back in range after a few hours. You can give yourself a correction and go to sleep, and wake up in range, etc.
The "artificial pancreas" is going to do a tiny percent of this job. It will basically see you are high or low based on the 5-minute BG reports, and bump your basal rate either up or down slightly to put a finger on the scale and move you in the right direction.
It doesn't know what you eat, so it can't bolus for meals. It might eventually get you back in range many hours later. Even with fast acting insulin, you have to bolus ahead of time anyway to get an ideal glucose response, so it's not something an artificial pancreas will be able to solve without much faster acting insulin.
Re: The Unreasonable Math of Type 1 Diabetes
#6Hey Graham -- great post! The Medtronic / Guardian sensor combo is generally disliked by patients, though (in the US) the Medtronic 770G is FDA approved for ages 2+. Most prefer the t:slim X2 with "Control-IQ" (their hybrid closed-loop: https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu... ), which is FDA approved for ages 6+, and works great. The bleeding edge is the Beta Bionics ( https://www.betabionics.…
Bi-hormonal was always something I thought they should do but didn't know anyone was actually trying it! Thanks for the link.
Although in theory you've screwed up if you need to bolus glucagon. Also, I can't imagine it feels all that great to be getting exogenous glucagon....
But from a safety perspective, having the device have a reserve tap of glucagon ready to deploy allows the algorithm to deploy full insulin dosages and true corrections boluses, versus just tip-toeing around a HIGH with a temp basal.
Re: The Unreasonable Math of Type 1 Diabetes
#7The one that a lot of people seem to neglect is that the factors change. This can be slow or abrupt and often or rare. It happens and learning to recognize(the hard part) and then adapt can lead to better outcomes. Waiting for a MD/Nurse to suggest changes is often too long.
This is an excellent point. What makes this even harder is that some of the changes (like basal rates) the equipment is good about supporting multiple profiles and letting you switch between them. Where as the carb ratios and correction factors are set once and overwritten when you update them, and hard to generate reports on how they are changing over time... so not designed to really be adaptable. There are micro f…
I use Loop and it takes a LOT of the thought out of it. Being incorrect is ok because the system a) knows about what the work of the carbs should be and b) is often checking the glucose levels vs predicated(from carb/insulin curves) and doing small corrections via either basal rates or bolus's.
The way it plays out those is that being wrong is ok. So the carb count is off, what was important was that it was timely and roughly close. What this makes more difficult though is seeing the patterns of when it is doing corrections more often. There's software for that too. Also, disabling it and seeing what happens can give some insight. Another thing is that systems that use temp basals to reduce insulin introduce a state of low insulin levels and a "bounce back". This is where I would like to see a system that converts that negative insulin back into carbs. I can do it, but would be nice.
Re: The Unreasonable Math of Type 1 Diabetes
#8I'm a type 1 diabetic, and this was a helpful post at showing non diabetics why it is so. hard. Non diabetics typically think the difficult thing must be the shots and the finger pricks, right?
Not really. The majority of diabetics get used to those things quickly (of course there are some of course that deal with a major major needle phobia that can make it even harder). The hard part is that it never ends. Almost every moment of every day, your brain has a background process running that's evaluating every decision in context of your diabetes. There are no breaks. Your prefrontal cortex now has to take the place of a previously complex and automatic bodily process. It's the last thing you think about when you go to bed and it's the first thing you think about when you wake up. It's what you think about when you want to go on a walk, are about to enter a meeting, go into an interview, get on a plane, take a shower.
It's usually little things: "okay, where am I at now? which direction is it going? when did I last eat? do I have snacks ready? do I have enough insulin for the day? what if I start to go low during this meeting? should I pop some carbs and run high for this interview, so I don't risk a hypo partway through? why am I going low right now when I took the same dose I took yesterday for the same meal? why am I now skyrocketing for no discernible reason, I didn't even eat anything? shoot, I'm starting to hypo out of nowhere in the middle of this great conversation, which I now have to interrupt to eat a snack and recover for 15 minutes. I fell asleep with a perfect BG, but now I'm awake at 2AM half delirious because my BG fell all the way down to 50, and I'm in the kitchen shoving cookies down my throat because hypoglycemia activates a survival instinct to EAT EVERYTHING that's extremely hard to control, and I know that I'm gonna shoot all the way up to 250 shortly, which I'll have to treat with insulin, and I'm basically not going to get any sleep tonight".
And then the math often doesn't make any sense. There are so many factors that effect it. One day the same number of carbs + insulin may make you go high, and the next low, because of other environmental factors. (See the "42 factors that effect blood glucose" chart in the post.) You're constantly having to adjust.
I'm literally crying while writing this post, because it's so exhausting and it never ends.
Re: The Unreasonable Math of Type 1 Diabetes
#9The one that a lot of people seem to neglect is that the factors change. This can be slow or abrupt and often or rare. It happens and learning to recognize(the hard part) and then adapt can lead to better outcomes. Waiting for a MD/Nurse to suggest changes is often too long.
> Waiting for a MD/Nurse to suggest changes is often too long.
Exactly this! I am single expert on my diabetes. Doctors and endocrinologists are helpful, but they don't know all the factors that effects my BG in both directions on a daily level. I have to adjust how I do things all the time.
Re: The Unreasonable Math of Type 1 Diabetes
#10That was a detailed post. Fellow kiwi and parent of a T1D diagnosed at the same age. Our kid is now 16, so I'm pleased to have the toddler years behind us. That said, teenage years bring different challenges.
I wish we'd had the option of a CGM at diagnosis - despite the various challenges they simplify so much. We were early into pumping - around age 4. Now using closed loop CGM + pump.
There's a good T1D subreddit for tips and advice. My one bit of advice, is that if you're having issues with bolusing before a meal and the kid then doesn't eat, is to bolus after or split bolus. It's not ideal, but it's massively better than cranking them full of insulin for them to then refuse to eat.
Good luck!