Taking my diabetes treatment into my own hands

First of all, this blogpost is kinda long. Let me prove to you reading it will actually have some payoff:

OK, now that you’ll stay, let’s start from the beginning…

I’m a Type 1 diabetic. This means my pancreas doesn’t produce insulin (which allows cells to use blood glucose for energy) and I have to provide it externally.

This is a finnicky process, because you need to balance your glucose in the right “zone” - not too high (hyperglycemia, >10 mmol/l, is a long-term danger to your body) and not too low (hypoglycemia, <4 mmol/l, is a short-term danger to your body). If it’s too high, you need to inject insulin, and if it’s too low, you need to eat some sugars.

A commonly used metaphor for this is flying a plane. There are games illustrating the process as well: click blue button, bird flies down, click orange button, bird flies up. Too high bad, too low bad, just right good.

The issues with manually managing this process you’ve inherited from your douchebag pancreas are manifold:

the insulin doesn’t act immediately, there’s around 20min delay (depending on the brand) before your blood glucose goes down

the food doesn’t act immediately, there’s around 20min delay (depending on the food!) before your blood glucose goes up

simple sugars (eg. fruit) are faster (and stop acting faster as well)

complex sugars (rice / potatoes /…) are slower. You usually want your blood glucose as constant and flat as possible. The worst thing you can do is to go from hypo to hyper to hypo to hyper in huge amplitude swings.

fats also somehow affect the digestion of sugars. I can’t be bothered to remember how, I just ignore them honestly.

injecting insulin ~15min before you start eating would do wonders for neutralizing the BG spike, the issue is, nobody does it, because what if you then get a smaller serving at the restaurant or it gets delayed? What if you get called somewhere urgently and can’t finish your meal? People usually inject right before the meal / after the meal as a result.

there’s no generic formula (that I know of) for estimating how much will a gram of sugar increase your blood glucose, nor how much will an unit of insulin decrease your blood glucose. It’s all vibes.

mathematical models do exist but you need to find your body’s parameters - I’ll get to it below!

the body has its own emergency reserves of glucose, which it can sometimes decide to use (though beware, this system turns off when you’re drunk), so maybe the Snickers bar you just ate to save your life wasn’t actually needed anymore, and you end up with a hyper

you’re not quite yourself during a hypo (you get slower, dumber, I’ve heard of people getting stuck in thought loops in front of an open fridge), and so even though you intellectually know you just ate enough to get back into the correct levels eventually, your brain is screaming at you “EAT! YOU’RE DYING! I AM LOW ON SUGAR NOW!! “ and in my case this leads to overcompensating quite knowingly and willingly. Yeah one more yoghurt can’t hurt. Well…

insulin doesn’t work when eaten, you need to inject yourself with it (though nowadays we do it under skin, not into veins, I sure am glad I’m not living 50 years ago) or inhale it. Since injections aren’t the most pleasant thing in the world, the dosage is usually limited to 4x a day (to counteract the three main meals + a long-acting different type of insulin once a day), even though you’d be more stable if you injected more often, with smaller doses.

(no experience with inhalations here, so I’ll skip this)

(insulin pumps do exist, I’ll mention those briefly in a moment… maybe)

measuring your blood glucose level is painful if you are using test strips and need to prick your fingers to provide a blood drop, so measuring your sugar is usually limited to 4-6x a day – again, even though it would be better to have more data points.

this is less of a problem nowadays with Continuous Glucose Monitoring systems like Freestyle Libre, which you install into your arm once every 14 days and get a measurement every minute through Bluetooth to your phone

things like physical effort, illness, stress, heck, even seasons of the year do all affect how your body behaves and reacts to sugar / insulin

there’s this damn thing called dawn phenomenon that some diabetics, me included, experience: in the morning your sugar will just start going up and up. If you wanted to sleep in on the weekend, well tough luck, you’re now in the 15 mmol/l range.

I hope this incomplete list gives you an idea of how wonky the process of trying to make your blood glucose stay in the right levels is.

My treatment is usually: keep the Freestyle Libre app on my phone open as much as possible and when I see my BG’s getting high, I inject a small amount of insulin. How much? No idea. IT’S ALL VIBES.

But sometimes the app is yelling at you: “you’re at 15 mmol/l for an hour now, idiot!” and you just don’t (want to) pay attention. Alert fatigue is a real thing.

I have some recommended insulin dosages that we’ve settled on with my diabetologist, whom I visit every three months. So my regimen can look like:

Breakfast: inject 18 units, eat 24g of sugars

Lunch: inject 22 units, eat 60g of sugars

Dinner: inject 21 units, eat 60g of sugars

Before sleep: inject 32 units of long-acting insulin

And then I see my diabetologist, she looks at the 7d / 14d / 30d averages and says “maybe you can try fixing the 15:00 hypers you’re getting quite regularly, by injecting more insulin before lunch. You should also lose weight, when you started coming here you had 80kg, now you’re a centurion. Like seriously, WTF. OK cool bye, see you in 3 months!”

Lovely.

If you can’t tell, the thing that irks me the most about the whole thing is: Ï̷̛̛̮̏̀̊͠T̵̨̡̏͝’̵̧͍̐̂̑̈́͐̐͜S̸͉̖͒̈̀̕͝ ̴̢̺̤̜͎͚̙́Ạ̷͕̱͖͙̉̊L̴̼̞̺̤̞̬̟̅̈́L̷̠̔̏̐̃̚ ̴̞̊͛͝V̸͇͚̱͑̄̈̌̊Ḯ̴̧̧͚̰̞̈́͝B̸̡̬̪͊̌͂̓̐E̵͙̼̰̞̹͇̎̽̈́̓Ş̷̱͍͖̼͍̯̉̾͊̂̾͝. I’d seriously appreciate it if my diabetologist used a model, or a simulation of some kind, got my body’s parameters there somehow, and found the improvements to my schedule that way. Maybe she has some expert knowledge in her head but from my perspective it’s all guessworks. Err, I mean v̴̼̂i̴̥̇b̸̠̌e̶͙̕ś̴̲.

And this is where my programmer mind comes in.

There are people who take insulin pumps (which provide insulin in very small very frequent doses and are ~permanently injected into your body, but are otherwise dumb as a brick) and combine them with continuous glucose monitors, and make the glucose measurements inform and control the pump. This is called “closed loop” or “artificial pancreas”, and getting one officially is very hard or impossible: not FDA approved yet / you need to be part of an university study to get one /… It’s one of those things that “will be here in 5 years”, they say every year for the past 30 years.

Aside: I try not to be too butthurt about it: CGMs have just recently started being available and even fully sponsored by the Czech health insurance companies, and having a 1440-datapoints-a-day graph is a MASSIVE improvement compared to pricking your finger 4x a day and getting 4 datapoints for your blood glucose graph with nothing in between. So, the artificial pancreas is slowly coming. Unlike nuclear fusion.

The most prominent of these people hacking their devices together, in my social bubble at least, is Scott Hanselman, the Microsoft programmer guy. (Check out his talk.) He’s a T1DM as well and has been promoting the #WeAreNotWaiting initiative where people take their own pump and their own CGM and hack them together despite the healthcare companies’ pleas that it’s not approved and not safe etc. #TheyAreNotWaiting.

And that is really inspirational.

I don’t have a pump myself (and to have a chance of getting one I’d first have to find another diabetologist, which makes this into a “too much work, can’t be bothered” issue for me), so I can’t currently do quite what they are doing, but I can go with the high-level idea and #NotWait in my…