The Unreasonable Math of Type 1 Diabetes | Hacker News Reader

The Unreasonable Math of Type 1 Diabetes

maori.geek.nz

673 pointsgrahar64299 comments

I'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.

One of the scariest experiences of my life was going on a walk after lunch with someone who had T1D and miscalculated their insulin dose. They went from totally fine, to saying “I don’t feel well, we need to head back”, to sweaty and sheet white and barely conscious within just a few minutes. The terror I felt as we waited for the doors of the lift to open so he could get to his emergency food is burned into my brain.

I’m ashamed that I spent so much of my life ignorantly thinking that diabetes was some nuisance like heartburn where you moderate what you eat and maybe take some medication, rather than the endless grind of counting units and risking your life every time you need to eat, or exercise, or sleep.

I can’t imagine living like that, and I’m so, so sorry to you and to everyone else that has no choice. A cure for cancer is often held up as the holy grail of medicine, but even cancer patients don’t have to be perfect every day just to keep living.

Yeah, getting caught out somewhere without snacks and a looming hypo is one of my nightmares. I try to always, always, always have snacks on me (for a diabetic, this is even more important to have when you leave the house than your keys or wallet), but sometimes things happen, and you end up somewhere without anything. It's really scary, but the good news is that if there is anybody around, enough people understand at least enough about diabetes to give you something to eat if you start saying "I'm having a diabetic emergency, does anyone have anything with sugar?"

The scary part is potentially getting caught out somewhere entirely alone and without an emergency snack.

My wife has t1d and when we were dating we backpacked the Lost Coast trail. She was pretty paranoid of bears, so made sure we didn't have any food in our tent and did a good job of hiding our bear canisters some place where any bears couldn't move them around if they got to them. She'd had a bad experience with bears pushing bear canisters off a waterfall.

So she had a low in the middle of the night, in the middle of nowhere. She was still verbal, but barely, and sent me to get her some snacks out of the bear canisters. However I didn't know where she'd hid them. After looking in the dark for a while I had to go back to the tent and try to get enough of an explanation out of her to find the hidden canisters. Fortunately she was abele to give me enough context that I was able to find the canisters and get her something to eat.

After that, I kept my own hidden stash of snacks in the tent and make sure she told me where the canisters were.

Oof. For finding my bearcan, adding conspicuity tape (the red/white reflector tape used on tractor trailers) makes them stand out like a beacon with a headlamp (which, so far as I know, bears have not learned to make use of). It also has adhesive good enough to stick to their slick plastic.

This is a great idea, thank you! If I can get myself into shape for it by late June, I'm going to try doing the JMT this year. This tip may come in handy. Thanks.

>The scary part is potentially getting caught out somewhere entirely alone and without an emergency snack.

First thing I do every morning is A) put on pants B) put my keys and a tube of glucose tablets in my front pants pocket.

You can probably guess the expensive way that became ritual.

I never thought about how being diabetic takes emergency preparedness to a new level. We saw people unexpectedly stuck for a couple of days in traffic because of snow recently. What if there is an earthquake and you can't get to somewhere with snacks? There are so many situations that could unexpectedly arise that could cut you off from food. If I'm cut off from food, I'll be fine for a few days. Not so much a diabetic. That's scary.

> What if there is an earthquake and you can't get to somewhere with snacks?

I’m a Type 1 diabetic (diagnosed in my 30s) and have been living with it for about a decade now. This really isn’t a “what if” situation. I know what will happen. I will die or hopefully just become incredibly ill.

It’s not really scary at all.

It’s just something I live with and prepare for as best I can. The one thing that I’ve learned from living with Type 1 is that all you can do is make the best decision you can in any given moment. My favorite doctor told me that diabetes is a disease that is all about making decisions. So is life, I guess.

Please forgive my ignorance, how is it possible that you lived until your thirties without knowing you have T1D?

The really interesting thing is not that T1D diagnosis has erased the label for "Juvenile onset diabetes" because it can happen at any age, it's that those previously-thought-destroyed pancreatic cells that produce insulin, are actually continuing decades after disease diagnosis and can be "reactivated" via BCG or Valter Longo's FMD:

"Identifying most people with T1D continue to secrete varying amounts of insulin and C-peptides for decades after initial diagnosis:

https://www.healthline.com/diabetesmine/dr-faustmans-controv...

See below for my deeper response on these and other issues:

https://news.ycombinator.com/item?id=30382364

Peak age of diagnosis is mid-teens with quite a sharp bell curve. But, it can develop at any age.

It takes a genetic predisposition and a trigger - perhaps a virus? - for your immune system to start eating your pancreas' insulin-producing cells.

The old labels of "juvenile diabetes" etc. are as unhelpful as the notion it's caused by obesity.

My nephew was 22 when diagnosed: https://www.healthline.com/diabetesmine/charlie-kimball-diab...

T1D can be triggered at any time in a person’s life. It’s autoimmune. Thinking of it as a childhood disease is outdated and (fortunately) most doctors are becoming aware of that.

diagnosed at 25, it happens :-/

Yep, very much. Most insulin pumps only cary a few days worth of insulin at a time so it's not uncommon to be heading home after work with only half a day of insulin left. That can quickly become a life-or-death situation.

Kind of reminds me of the movie with Justin Timberlake where people trade lifetime, not money, because people live forever.

I guess this is somewhat similar. Especially in places where your health insurance isn't a given.

I always have 4 or 5 glucose gels in my car. My diabetes kit has a couple more. You learn pretty quick you need to be able to treat at least a couple of hypos by yourself

I had a “drunk” parked in the inside lane of the four lane road in front of my house one evening. He was just stopped in traffic and got out stumbling around. I was annoyed (naturally) and he handed me his phone. Whatever, dude; I don’t want to talk to your friend right now. Somehow he insisted and his friend told me he was diabetic and to call an ambulance.

I did, got him some OJ, and moved his car out of traffic. He went from incoherent and “drunk” to “seemed pretty OK” in just a couple of minutes before the medics even arrived. (He still took the ride, but it was none of my business at that point.)

I've had the "are you drunk" comments a few times while hypoglycemic.

I once walked home from work and apperantly didn't notice it, walked a few busy intersections and finally sat down somewhere where someone noticed me and called an ambulance who game me a glucose iv and everything was back to normal in a few minutes. So everything was still somewhat working and the "go home" signal was set but everything else was broken. Not everyone responds the same though and concerning cars I have at least some dextrose with me at all times and some in the car as well, as well as hidden at work and at home and in all my coats and backpacks and everywhere... OJ works quite well since it is readily available.

They did teach my parents one thing when handeling people with hypoglycemia: never try to stop them from consuming your entire fridge. Motor control is lacking and a young adult can easilly hurt you badly if you try to intervene.

One of the slightly scary things about T1D is that at first you get a weird feeling when your blood sugar is too low, and you can notice when that happens. But if it happens too often, those warning signs stop, and you can get into a really serious condition without noticing for yourself.

The worst is during the night: You are sleeping, in a partial-dream, know you have hypoglycemia --somehow you know-- but you don't know for sure but it feels like something you experienced before, you do not completely wake up, dream somewhat lucid and are aware but you cannot decide to wake up and get something to eat but keep on dreaming and it's not a happy dream and keeps on going. Usually my dream-self starts screaming at myself to wake up. I've had that a few times and it's scary as [expiative here].

A CGM, app like xdrip and a smartwatch to display the current glucose value, trend graph and insulin on body has completely removed these situations from my life. As people normally check the time, you'll be checking the glucose value when walking outside

That's the glass half-full. If that works for you, then I'm happy that at least one of us has found a solution that works reliably.

The glass half-empty is...

I'd be much happier if I actually had an information device that I wore on my wrist that gave me all the data I need to manage T1D at a glance without igniting arguably the worst alert fatigue ever seen in healthcare when I have a smartphone, a pump, a CGM, and a watch which all go off in a discordant concert with one another with no clue that the other is alerting or any mechanism for stopping the noise save for turning off the device. In short, my wish is that the companies making these devices would give more care to the _design_ of the ecosystem around them, not just their individual device. I know, this is an emergent problem, but one that I've dealt with nightly at 3 AM when the devices go awry, not my diabetes, which is actually quite stable. The vast majority of my disease control and management issues arise from technology. Like insulin, it's the exogenous nature of the device that indicates there will be side effects, whether we design for them and manage them, or not. Unfortunately, patients pay with their user experience, all day, every day. There is no greater use case for the design of a killer app for the smart watch, i.e. wrist-worn information device, because I don't actually care what time it is. Rather, I'd be happy if the device actually made BG and related information the primary data currency of the device, not time. Time is actually secondary to the primacy of BG in this particular use case. I wear two watches to account for the fact that I need BG at a glance and the sensors for tracking exercise and metabolic impact. I've not seen a single device or interface that gives me what I want on one device at a glance without a byzantine UI.

Here is what I have in my watch:

https://i.imgur.com/Iv6V3ap.jpg

Date, time, glucose graph, steps, pulse, time from last value, last glucose value, delta from previous value, current pump basal rate and units of insulin from the base.

More than enough to understand your current situation. Battery life after few years of use about three days.

The alert fatigue is _very real_; I have a dexcom and consistently see it:

- mis-calibrate (first day's readings are garbage after new sensor insert)

- UI on the app will sometimes mis-render by 10-15 minutes. On several occasions I have been watching the graph while dosing, didn't see any change whatsoever after 30/45 minutes, and gave more insulin because of that information. 5 seconds later the screen changes and displays 15 minutes of BG going steeply down as I would expect, but now I have 2x the dose in me -_-

While I'm swimming in sensor readings the actual impact on my treatment quality has been close to nil, but it does make the people around me feel better. I feel as if my ability to sense my own levels has worsened because I default to trusting the graph over how I feel.

> A CGM, app like xdrip and a smartwatch to display the current glucose value, trend graph and insulin on body has completely removed these situations from my life.

If my body wouldn't dislike those I would agree. But my experience is after about a day the results get so mixed up and unreliable that it's pretty much worthless. Hopefully they get better over time.

He needed the ride. OJ solves the problem quickly but he could crash again unless he gets some slow carbs. He knew that.

I once took a 5 hour bike trip on an empty stomach. At some point I couldn’t even turn the pedals. I had to lay on the ground, not feeling better even after half hour. I can still remember the feeling of eating some sweets. Felt like I was reborn. Can’t imagine what it’s like for T1

The interesting thing is that your BG levels may have actually been fine. Physical exhaustion doesn't necessarily lead to hypoglycemia in a healthy person. Hypoglycemia feels significantly different than just being hungry, for example.

A bizarre phenomenon: feeling stuffed because you ate a huge meal, but having a hypo anyway. You don't want to eat anything because you're not hungry, but feel an overwhelming urge to stuff your face with sweets anyway.

I worked in the university library and a few times a year we had girls studying for hours on empty stomachs (brains consuming glucose is a different process from normal). They usually felt dizzy, were bleak and confused and were sometimes sweating and usually came to ask for some OTC painkiller or something. Usually gave them some of my dextrose tablets and someone's lunch and almost always it was fine a few minutes later. I'm pretty sure they had hypoglycemia. Though for (us) diabetics hypoglycemia where we start feeling it isn a considerably lower blood glucose level than for most regular people so there is some difference in how far you are gone down the rabbit hole already.

This necessity of eating after you overate but mis-treated is one of the worst feelings in T1. You know you screwed up and you know you're going to pay for it, because you'll probably spike later and you don't know if it is the big meal you just ate or the snack you ate to keep from going low first. I love pizza, my body hates pizza

You were likely short of potassium too. This is why professional cyclists pack bananas for the ride.

You weren't necessarily hypoglycemic, just low on glycogen. The former is a life threatening condition, the latter is more of a deep exhaustion.

well put. After swimming 10km on a empty stomach that first glass of chocolate milk and a banana were near psychedelic. Obviously not the same life threatening situation as a diabetic but I can imagine there'd be some similarity to the experiences

is this like “the wall” marathon runners are said to experience?

Yeah. Runners call it the wall; cyclists call it "bonking".

I've been told that it can come on more suddenly and acutely for cyclists. As a marathoner I find that I feel it coming for several miles, which is tens of minutes. The activities are somewhat different so it's not impossible that they manifest differently.

But the basic idea is similar. You've got so much readily available glycogen in the body, and when it runs out, you have to shift to a different metabolic pathway -- and your body starts sending up warnings that you are rapidly running out of reserves and must stop now.

It's as much mental as physical at that point.

> some nuisance like heartburn

Unmanaged heartburn can lead to esophageal cancer, you shouldn't take it too lightly.

Now imagine what it's like for someone with T1D to live alone, if you haven't yet been to a funeral for that. Every single time you go to sleep is a roll of the dice.

This is a bit melodramatic. I've lived alone with T1D for the better part of a decade without any problem. I went to uni, alone, without any problems.

Frankly, I think depending on other people is a liability. I can't count on my hands how many times I've had to explain to people that you don't give an unconsious diabetic insulin, you call an ambulance and follow the instructions you're given. I just don't trust the average person enough to burden them with the responsibility.

The only people I would trust to look after my unconsious body during a severe hypo are medical professionals - and there are medical professionals that I still wouldn't trust!

Yes, the maths is unavoidable. Diabetes burnout is real. But if you've it had for nearly 3 decades, like I have, then you learn coping strategies. My advice is to spend some time finding a specialist who listens and answers questions. Use the devices available to you and learn them well. Don't make changes to your insulin regimen when you're angry or hypo. Most importantly, don't strive for unattainable perfection.

Yes living alone with diabetes is fine given modern treatment and some robust habits.

Here's the instruction to the people I know I will be spending longer stretches of time with: When I look very tired, disoriented, or talk incoherently: fetch orange juice or some other sugary drink. Make sure I drink it. When you find me unconscious: roll me on the side, call an ambulance. You can put sugar under my tongue but do keep watching me. If you feel confident, apply the syringe from the orange box in the fridge.

Thankfully, none of this has played out so far. Except that I had to rely on friends a few times when my sugar ran out. That's already plenty scary.

Everybody’s T1D experience is different and it’s not that melodramatic. Before I had a CGM I went so low at night my partner had to call 911 in the morning.

Sure I bounced back and got a CGM, but only because I could afford one. I was terrified of going to sleep at night without a handful of alarms set to wake me.

>Every single time you go to sleep is a roll of the dice.

Isn't that the case even if you have someone sleeping beside you? I suppose it mitigate some risk on the off chance that your partner wakes up and notices you're sweating or whatever, but what if they're sound asleep? Does someone who's high/low on blood sugar exhibit symptoms that are easily picked up by a sleeping person?

The good news is that for most diabetics, your body will automatically wake you up for a hypo. It's a survival mechanism. But some people suffer from hypoglycemic unawareness, and their body doesn't wake them up.

Most diabetics have CGMs these days, though, and somebody like that should be setting hypo / hyper alarms so that either them or their partner wakes up.

(The problem there becomes false alarms and the subsequent alarm fatigue that results in you turning them all off.)

“Most diabetics have CGMs these days” - not where I come from :-(

You're right, the truth is probably actually that only a minority of T1Ds have CGMs. My post was a bit insensitive, not everyone has easy access to them.

What's even more frustrating is the disparity in who can get them and how even if they are cleared for use in your country. The author here points out that New Zealand's medical system doesn't always pay for CGMs, while the Australian system does. In Ireland, the Dexcom G6 system is available but the FreeStyle Libre 2, an updated version of the FreeStyle Libre with more frequent reads and better alarms (Libre vs Libre 2), is not.

CGMs are available over-the-counter, just like finger stick machines, in a variety of countries like Canada and Ireland. But in the United States a prescription is required for any CGM even if insurance doesn't pay for it and insurance generally only pays for it once you are actively on full-time insulin treatment, so type-2 diabetics can't avail of insurance to reduce the cost of potentially not needing to go on recurring insulin by getting a handle on being pre-diabetic. (Plus many doctors won't write a CGM Rx for someone who isn't type-1 or very symptomatic type-2. This has resulted in nutritionist businesses springing up whose purpose is to turn a credit card charge into a prescription for a CGM.)

But of course different countries have different regulatory systems, we all know that. This is to say that even when you find a system and method that has worked for others in your online community, that method might not be available to you, and it causes even more stress to have the idea, right or wrong, that a useful tool is just out of your grasp. And carbohydrates help you if you dare move between countries.

My doctor had to fight to get me one. I workout and was highly insulin sensitive (she made me workout less and gain some weight by doing less cardio - drives me nuts, I liked running). The insurance companies didn't want to fork over for the upfront cost, even though I had been to the hospital several times for low blood sugars. This included a stroke caused by a severe low blood sugar (yes, I lived alone at the time, pre CGM. Coworkers called a friend who had a key).

Granted this was 4 years ago, so I'm unsure how things have changed. The CGM is a game changer. I wish I had had it earlier. Would have kept me (hopefully) from a lot of issues and putting my friends and family through unnecessary pain.

The alarm fatigue is no joke, and CGMs get less accurate the lower ones blood glucose goes, so false alarms on the low end are common.

My wife has a Tandem T:Slim and Dexcom G6 and she can't turn off the urgent low alarm. The alarms drive her totally crazy.

Though I'm happy to know at least the system will disable her basal rate if she's heading low.

It’s about a 3 in 100k chance you’ll die from hypoglycemia in your sleep over a year. So the die you are rolling every night has about ten million sides.

> A cure for cancer is often held up as the holy grail of medicine, but even cancer patients don’t have to be perfect every day just to keep living.

Wow. There is no need to dismiss the plight of cancer patients in relation to that of diabetes patients.

As a diabetic, if you go through the (granted, horrible) grind, you can be fairly certain you'll live for quite some time.

If you are a cancer patient, even if you are currently in remission or even 'cured', you don't know if the cancer will come back. And if it will respond to the same treatment and if not if there is an alternative. Your survival timeline basically becomes one giant question mark.

https://xkcd.com/931/

I don't think there was any dismissal of the awful seriousness of cancer. In my experience, those who 'know' T1D (via themselves or close family) tend to be _extremely_ empathetic to the impact of most other health conditions, too.

What I read in that comment about "being perfect every day" -- and what I notice about having T1D compared to the awful experiences of family w/ cancer -- is the distinction b/w experiencing suffering caused by some terrible external force (cancer) vs experiencing suffering that can be interpreted as caused by yourself. Or suffering for which it's always easy to partially judge yourself.

The reason this post (notice even the 'defensiveness' in its title) resonates so much w/ those w/ T1D is because this condition presents one with non-stop, 24/7 complicated problems to solve w/ serious consequences...and yet, any time something goes wrong, it still feels like it's kinda your fault. Like you made a mistake.

That is a non-stop mental grind that is unique to T1D and a small set of diseases. The uniqueness certainly does not make cancer less awful.

Not that it's a competition, but T1D can and does just come out of left field and fuck you over. Not only for annoyingly prosaic things like forgetting a Snickers in the car and passing out alone and never waking up, but also sudden cardiac death is an order of magnitude higher.

I had cancer, it was shit, and yes, there's always a chance its not done with me, but at least the cause of death won't be "finally forgot a snack".

Type one diabetes is an auto immune disease whereas type two diabetes is a symptom of the food industry, those are hardly comparable.

Same here. 100% dead accurate description.

> 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?

Love this part. Had to do it literally yesterday to prep for interviewing a job applicant. Imagine the stress of an upcoming meeting, but also your brain might stop functioning half an hour into it! Ha ha! Good times.

Perhaps the only good thing about T1D is the immediate camaraderie you feel with other T1Ds. When I spot somebody else in public with a CGM or a pump, it's just that instant feeling of "hey, we know nothing about each other, but we have a very intimate understanding of each other's suffering".

> Love this part. Had to do it literally yesterday to prep for interviewing a job applicant. Imagine the stress of an upcoming meeting, but also your brain might stop functioning half an hour into it! Ha ha! Good times.

Haha, yeah, this is one of those things that every T1D has had to do at some point, that non diabetics would probably be shocked by. There are just times when you can't risk going low. Going high ain't great, but it at least doesn't involve the immediate danger that a hypo at just the wrong moment does...

I did this applying for an internship at Microsoft. First big company interview for me and I didn't realize they would be taking me to lunch. The interviews after lunch were miserable as I was dangerously high.

> Perhaps the only good thing about T1D is the immediate camaraderie you feel with other T1Ds.

On that note, feel free to send me an email if you want. Or not, no pressure. (I would've sent you one, but your profile is empty :) )

> I'm literally crying while writing this post, because it's so exhausting and it never ends.

If it helps (?), I also broke down crying reading this, because I have MS and it is so true to my experience. I've never been able to communicate well how exhausting the constant mental load is, and I imagine it's even worse for people with T1 diabetes since blood glucose can get out of whack a lot more quickly than my immune system can make more holes in my nervous system.

You nailed it on the head exactly with the constant balancing.

"Okay, so I didn't sleep for crap last night due to symptoms. Do I have some caffeine and spend the rest of the day in pain due to the increased muscle spasticity? Maybe if I have 3 cups of coffee instead of 1 and also take some of my muscle spasticity medication, I'll be able to stay awake but not be in too much pain. Except if I dip into what are supposed to be nighttime pain meds too often, I might run out of Tizanidine. When will my insurance refill? How much will it cost out of pocket when I have a bad pain month?"

And then I get stressed out about the MS, and we're supposed to avoid stress, so then I stress about my stress. Fantastic.

And all until the day we die.

Oof. Even without any physical issues if I get stressed about stuff in a way that makes it hard to concentrate I usually then manage to do the 'stress about my stress' thing on top of that and damn but that's no fun at all.

Are you tired of boring, old stress?

Try new and improved META-stress: all the worrying and none of those pesky resolutions or good things!

I'm sorry

I've been diagnosed with gastroparesis [1], and reading this gave me the exact same reaction! Almost all of my day is consumed with "what did I eat most recently? when should I eat next? How much? What am I short on for today? Protein? Carbs?" It's mentally exhausting. I'm thankful though that I only have to be concerned with "how much I can eat in a day" and there is no upper threshold. Lately I've been thinking about T1D and similar issues that have a high focus on managing food intake, and I completely empathize with you and everyone else who has to do this.

If anyone reading this struggles with gastroparesis I'd love to chat about diet choices that have worked for me. Contact info in my profile.

1) https://www.mayoclinic.org/diseases-conditions/gastroparesis....

I have had Type 1 for 30 years.

To be honest, i don't do the math. I choose the amount of units to inject by feel. I mean, i know by eating a banana, i get something like 20g of carbohydrates, and i should take 3u. But if i feel, that the correct dose is 6 units, then i take that.

I cant really explain it. But i kind of feel the state, where i am going, and can adjust instinctively. Works more often than not. I have never passed out.

Edit:

I measure blood sugar A LOT, though.

Most important things are what i think as the Morning Gate, and the Night Gate.

For Night, must have blood sugar under 10mmol/l. Preferably without pending effects such as food or recent injection. If i get that right, the night blood sugar is steady.

In the morning, must account for the morning blood sugar raise phenomenon.

I'm at 10 years, and this is basically how I do it as well. The math just doesn't work, because there are too many factors at play, most of which you don't even know about, and can't plug into a simple equation. You might have the exact same meal and the exact same insulin dosage on two different days, and go low on one and high on the other.

You eventually gain an instinct for it. Doesn't always work, but for me it works better than the formulas...

> I measure blood sugar A LOT, though.

That is the most important part, you can really live a good life if you have that. I hope we get more powerfull and cheap way to do that continously. At the momemnt it's at least 300 USD a month for a CGM device that can measure every five minutes. It's abit like monitoring traffic load and adding more servers as you go, except too many servers kill you.

That with knowing how you react to changes in life works wonders, e.g. exercise, eating fat foods, sitting all day.

Well, I have had the incredible luxury of being born in Finland, so state/municipality pays everything. Insulin, Glucose-test-supplies, Doctors. I truly fell sad when i hear what US based persons have to go through. Though, i suppose i pay it in taxes :)

About devices.. The first Glucose-test-device (what are they even called in english) took 5min to process the results. Current one is 5sec. A massive improvement in both speed and accuracy in these things.

I hope a good non-invasive device is developed, though i'm not sure it is essential, for me anyways.

I'm not diabetic, but I tried a FreeStyle Libre 2 continuous glucose monitor to measure my blood sugar, and I think it's basically what you are asking for. Tap your phone on a patch on your arm to get a instant view of your blood sugar, plus see the previous 8 hours. It is pricey though.

My understanding is that all current devices like this use a thin sensor "fiber" that is inserted under the skin, which is then connected to the coms-unit, which is in the sticker which remains on top of the skin. So they are still somewhat invasive.

And also annoying if your body really doesn't like them since they clog up after at most a day with me... (I've used them a few time since they were the size of bread boxes with long wires and the results after about a day always become erradic and unpredictable)

It is expensive, but testing with strips >5x a day can easily end up costing more. When I was on strips I usually needed at least that to have anywhere near decent control.

> It's abit like monitoring traffic load and adding more servers as you go, except too many servers kill you.

Not even just that, but with fairly primitive monitoring tools. The built-in stuff for Dexcom can only alert on highs or lows, not on things like the rate of change, which would be much more useful IMHO.

The Dexcom G6 is capable of alerts for rate of change, but it's about what the rate was, not what it will be. It still can be helpful.

(When looking at the app, there are "trend arrows," also, but they unfortunately are misleading in some situations. Often looking at the data points can give you a sense of your situation, though.)

TIL that this must be in the main app somewhere, but not Follow. (and yeah, the arrows are all over the place, sometimes different between Follow and the main app... the data points is the best, for sure.)

There are open source apps such as xdrip that can alert on a trend change, and androidaps that turns off insulin delivery way before you get to a hypo.

The official one from Dexcom is not very good.

Yeah, if you're technical, there's options. But if you're not, it can be harder.

300 USD? That is incredibly expensive! In Germany, the general public can order a Libre 2/3 from their website for 60 EUR. That's 150 USD per month (assuming 26 devices per year). Though that's a purely theoretical price: As with insulin, the mandatory health insurance seems to pay for it anyway.

Even with import taxes/tariffs applied, I could imagine a vacation to Europe being massively subsidized by just bringing back one or two years of GCM supplies (obviously Vimes theory of socioeconomic unfairness[1] applies).

[1] https://www.goodreads.com/quotes/72745-the-reason-that-the-r...

In Germany a Dexcom G6 sensor is 80€ per 10 days. A transmitter about 400€ per 90 days. TK pays for all of this if you can show nightly hypos and jumpy glucose values, which should be easy for any T1d...

Dexcom is the only one accurate enough to use with SMB looping. And the only one in germany that sends the glucose numbers to your phone with BLE. Libre 2 can be hacked to do the same though.

Hm, possibly? I mean, I luckily don't have diabetes and know the Libre 2 only second-hand (my Dad uses it to monitor his non-T1d). So I am not too familiar with the details, hence first of all thanks for the clarification of what that device can or much rather can not do.

However, I was under the impression that the GP [emj] was "only" considering good monitoring to improve their decision about insulin application. Not a closed loop system. But yeah, if they meant a closed loop and if the Dexcom is the cheapest option here, then the 300 US$/month is actually cheaper than the 380 US$/month you outlined.

> honest, i don't do the math

Also 30 years here. I have exactly the same thing as you describe though when I switch insulin I do start calculating again to be sure it matches with my assumptions. Blood glucose measuring is required though as you mention. I'm one of the lucky ones with very lineair and predictable response to every unit more or less of insulin. Not everyone is that lucky though.

There are some pros and cons to managing T1D but not being the person actually managing it. The main con is that I have no idea how he is feeling, which makes us very numbers obsessed, hence the post :)

Having an 18 month old means we are in full control of everything he does and eats and doses and even with all that control we see wild swings and weird shit every day. Having all the energy needed to manage T1D and the self control to do it is superhuman. I wrote this post mostly because I didn’t know that before and I want more people to know. You are doing great.

I'm a dad to 9 month old twins and I'm a Type 1 Diabetic.

The picture of you and your son in that hospital bed broke me. You're doing great.

Thank you! Being a parent of a T1D (especially an infant) is also a monumentally stressful task, and your post shows you're doing a great job. Keep up the good work, and please take care of yourself as well.

> a survival instinct to EAT EVERYTHING that's extremely hard to control

T1 here too. The weird part about this, is that it happens while you are aware of it.

My brain: "hey, you're doing it again. stop it. You know it'll end bad". my hand: "nope. here's more cookies".

100%. A minor low doesn't cause this reaction from me, but at a certain point the survival instinct kicks into gear so heavily there's almost nothing you can do until your BG starts to rise, even when you know you've overdone it.

It's the real life experience of this Frog and Toad meme: https://i.imgur.com/YdSSscE.png

And of course, those are both your brain. The self-aware rational parts just aren't always in charge (heck, I'm not sure if they're even in charge most of the time, no matter what they would like to think).

Eh, don't feel bad about the inevitable. My conscious self knows well to just count the carbs when I'm too low to behave. At least then I'll know how much insulin to dose when the curve ticks upwards again.

Continuous blood glucose monitor and insulin pump. It's reduce the stress and the nearly dying incidents dramatically. The bigger concern for me in my life now is having a backup carbohydrate supply on me so if I go do something like hiking that I have enough glucose to make it back to the next carbohydrate source.

Of course being able to even afford this in the US requires a certain level of privilege. Supplies are very expensive.

If you have an insulin pump, can you also have a glucose pump?

Or a glucagon pump: https://beyondtype1.org/future-artificial-pancreas/

(causes your liver to release its glucose)

Thanks for sharing this. I wasn't aware of this, going to keep on eye on it.

In The Netherlands there’s a group of a few 100 people using a device like this already: http://inredadiabetic.nl/en_GB/

It’s sort of in a testing phase…

No. But a hormone called glucagon is used in some pumps. It puts your liver to produce glucose.

My sister is T1 diabetic (diagnosed at 11). Your description is extremely accurate.

I used to think that if you control all the parameters, then you can control diabetes. Thinking in this way is incorrect, and my lack of understanding caused a bunch of arguments between me and my sister. I wanted her blood sugars to be better, and assumed her bad blood sugar days were caused by poor control. They weren't, and quite honestly, only God knows the real cause.

I was pretty ignorant about what I didn't know. My sister is 32 now, and I feel like she's got a very good handle on her condition in the last decade or so. It is a continual struggle, but I'm proud of the fact that she now has mostly good days, with the occasional bad day here and there.

Non-zero chance you might see a cure for type-1 in your lifetime.

https://www.clinicaltrialsarena.com/analysis/vertex-stem-cel...

It's a stem cell therapy, in human trials (not the usual "in mice" crap).

A single patient already had their diabetes disappear: https://www.fiercebiotech.com/biotech/vertex-diabetes-cell-t...

The downside of stemcell therapy is that it is essentially an organ transplant, aka requires immunosuppressants, for life.

I'm a T1D for 45 years, and since my first diagnosis there has always been a cure that would be available "within the decade". This is the way.

That being said, every decade has seen life-changing therapies introduced. The introduction of long-lasting insulins. At home testing for glucose and ketones in urine. Mixing insulin formulations together to reduce the number of injections at a time. Thinner needles greatly reduced pain from injections (this one happened almost every year.) Moving from urine tests to blood glucose tests! Introducing shorter-acting insulins that reduce onset time. GLUCOMETERS! Moving from needles to pens allowed crazy-simple and virtually painless injections. Moving from pork formulations to human formulations of insulin. Carb counting: previously we used fixed diet - eat the same thing at the same time every freaking day. INSULIN PUMPS!!! Crazy fast-acting insulin formulations cutting onset down to 15 minutes. CONTINUOUS GLUCOSE MONITORING!!! Tracking and alerting for low glucose, overnight and remote. CUSTOM-BUILT CLOSED LOOPING!!! Reliable/medical grade CGM. Approved closed looping systems.

Many folks have worked very hard to make my life more livable, and I thank them for it. Today is, without a doubt, the best time to be a diabetic.

That being said, I still wouldn't recommend it;)

I wonder if there's any good reason to reduce my pessimism about it: I can't help but think there are such strong economic incentives against having a cure (vs ongoing treatment) that it's very unlikely to become available during my lifetime.

I don't know much about medical research, but I've looked into some of these trials. They are generally being done by startups and not the established players who sell the diabetes management stuff.

So think disruptive tech. A new player comes into the market with something that obsoletes the old tech, and maybe destroys a whole market. But that new player makes their own money off it.

So yeah, maybe Tandem, Dexcom and Medtronic don't have a big incentive. But someone else can make some real money if they can find a cure or novel treatment that obsoletes all those others things.

I don't want to feed your pessimism too much but I think the general culture of being too reserved with funding and testing is going to do more harm than that.

The reason for the immunosuppressants is not the same as for a classic organ transplant. For a normal organ transplant, you need immunosuppressants because otherwise the body will recognise the new organ as being a foreign body that it doesn't recognise as self. For a stem cell transplant, the immune system has already gone around destroying every pancreatic beta cell it can find. The immune system is primed, and it absolutely recognises beta cells as something to destroy. The end goal is to encapsulate the inserted beta cells in a membrane that allows glucose in and insulin out, but keeps the immune system away.

I wake up at the same time and eat the same thing every weekday morning. Still, my bg at noon will range from 3 to 12. This after having this thing for 17 years. Yeah, it's hard.

Edit: On the 42 factors, during-sleep BG is either stable or up. For me it's either side or down (but occasionally up).

I do have the 'pre-sleep' BG that usually goes down, right after brushing my teeth (is it post-brushing then?), which is a well-known factor on Reddit. Basically, doesn't matter if I'm going to sleep at 10pm or 1am. I check my BG, it's 8, arrow straight or even up (CGM indicates the trend). Brush my teeth and check again, 7 with arrow straight down to the floor :/

Although I haven't experienced this first-hand, my partner has T1D and I can see her reflected in everything you say. I'm hoping for a near future where technology paliates some of the dread of living with T1D. Some lines of research, such as implantable insuling-producing islets [1] seem promising, at least to someone without the chops to judge what's going on.

[1]: https://www.clinicaltrials.gov/ct2/show/NCT03513939

Thanks for the kinds words.

The primary problem with those types of treatments is you have to be on immunosuppressants, or the immune system just kills the cells again. That type of treatment is typically not recommended unless the patient is already on immunosuppressants, or has extreme hypoglycemia unawareness, or extreme needle phobia. Immunosuppressants are typically considered a worse outcome than properly treating T1D with insulin + CGM.

For the same reason, sometimes T1D's will get a pancreas transplant if they are also getting another required transplant that will require immunosuppressants.

I think the best hope in the next 50-100 years or so is continued development and improvement of closed loop systems. Eventually we should get to a point where highly sophisticated closed loop artificial pancreases can automate much of the process away. This will improve treatment and long term health outcomes, but will still require a fairly significant level of maintenance and oversight on the part of the patient (or their parent). There's a lot of really promising work being done there.

I've been following the press about closed loop artificial pancreases closely, too. Currently, the open-source solutions there are require using insulin pumps that are pretty big and for some, that's not a choice they're ready to make. I too hope this tech continues to advance quickly.

The AndroidAPS works with many Omnipod models, and with DanaRS or Accu-Chek insight which are all quite small pumps.

If you have the knowledge, I can highly recommend doing some research and try looping. I've been doing it now for three years. Time in range is about 92%, A1c always 5.8-6.0%. 80% of the stress is gone. Life is better.

But, it's not accepted therapy and you have to do lots of research to learn how to use the systems. For me it has worked like nothing else. I got my life back after 21 years of suffering with T1D.

The Omnipod 5 just received FDA approval, and looks really cool. I'm going to wait a bit and see reactions from other diabetics, though, before I jump onboard.

Oh, sweet! It looks like it's not out yet in Germany. You can get the Omnipod Dash here. It does look like it's going to be available soon, though. Will keep an eye out, thanks for the tip!

> a near future where technology paliates some of the dread of living with T1D

I thought pump implants already did that, what's missing?

Pumps aren't implants, you replace them regularly. They are a massive improvement in care for many people, but they do not remove the daily toil of managing diabetes. Personally, I found a CGM to be even more helpful than a pump.

Closed loop artificial pancreases are the future, but they will still require a large amount of attention and management by the patient.

Indeed. I am not diabetic, but a close friend is, and I have observed all of the effort and uncertainty that goes into it.

My friend got a new high-end closed loop system, and it's so much better than the previous pump. There's still a long way to go before it's truly an artificial pancreas, but my friend already has much higher quality of life, and the tech is still improving.

Insulins that themselves react to blood sugar levels are another interesting path. Not that they could ever do the entire job, but they could lend some first-order stability.

The secret to managing Type 1 Diabetes is a ketogenic diet. You will observe extreme stability of blood glucose (low variance) and because the brain uses ketones as fuel, occasional hypoglycemia will be an easily-managed non-event.

You should get most of your calories from olive oil and nuts.

Protein intake should be just as much as you need. Excess protein causes blood glucose instability.

Carbohydrate intake should be as low as possible.

Here is a sketch of a ketogenic diet that works long-term:

  - 2 eggs over medium with 4 tablespoons of olive oil
  - walnuts/almonds/pecans with a little cheese
  - hazelnuts, peanuts, macadamias for hunger
  - a little chia seed (2 tablespoons)
  - salad with avocado (14g of fat) and 9 tablespoons of olive oil, with vinegar

The salad is by far the largest meal of the day should include wide variety of vegetables. Leafy greens, broccoli, brussels sprouts, zucchini, tomato, etc. Add walnuts.

Get a lot of salt. Take a multivitamin and fish oil capsules.

Once a week, eat a burger with no bun. Cheese and meat. This should be eaten after hard exercise (e.g., a hike). You might eat other cheat foods (e.g., seafood, steak) but avoid carbohydrates.

This is a pretty dangerous comment, if you consider going the Keto route and are a diabetes type 1 patient please consult your doctor, there are some risks involved and it definitely does not work for everybody.

Thank you for your concern, friend!

Tell us, how long have you been diabetic?

Anecdotally, I have maintained a HbA1c below 5 for more than 20 years using small variations on the ketogenic diet described above. I need just 6 units of Humalog (short-acting) and 16 units of Lantus (long-acting) per day. It makes diabetes very, very easy to manage.

If anyone reading this is tired of struggling with diabetes, please consider adopting a ketogenic diet.

Consult with a physician!

I'm not sure why you're being downvoted. I know jacquesm is a very well-respected poster, but unless he's got diabetes himself, he's providing his opinion with absolutely no real-world-experience vs someone who has been managing diabetes with keto for two decades.

Even if keto "isn't for everybody" (and KetoType1 should have put a disclaimer), I'd certainly much rather take advice from someone with skin in the game.

By this reason any doctor that doesn't have the disease they help curing should be disqualified as well. Maybe think a bit longer and realize that expertise can be gained in more ways than experience alone.

I've posted a pretty good link below from a respected source if you don't believe what I wrote and whether or not I have diabetes type 1 is not relevant.

Of course you're not immediately "disqualified" from providing meaningful information if you don't have skin in the game. However, the current state of pretty much any science-related-to-food is woefully inadequate (remember the food pyramid? and how fat was evil and going to kill you? And don't even get me started on carcinogens and meat). At this present moment in time, people who are actually trying and living on keto (, in particular those with diabetes) are actually on the bleeding edge of food science.

I personally have friends who manage Type 1 & 2 diabetes with little-to-no insulin on Keto, and I'd hate to see people being turned away from at least researching a lifestyle that could significantly benefit them because a well-respected member of the community said it was "dangerous" (and often, deferring to doctors can be not helpful for reasons mentioned above - I wish people would at least research for themselves).

I'm vouching for this because there is indeed a community of type 1 and type 2 diabetics using keto for management.

Obviously it isn't a one size fits all approach, and the above poster could have been a bit more diplomatic, but IMHO it is worth discussing treatments that have been demonstrated to work.

I do want to try keto at some point, as I've heard a number of success stories for keto / low carb and T1D. It's hard to gather the motivation to start it.

One important thing to point out is that you can't reverse T1D with keto, like some people are able to with T2D. It can greatly reduce your insulin requirements, but not to zero. Your pancreas will not return to normal function.

As far as I know you indeed can't reverse T1D with keto, but making it (much) easier to manage still seems like a very big win.

It's actually pretty easy to get used to a keto diet. Initially you might crave a lot of food items that you were used to eating, but eventually you stop missing them. I don't feel like I'm missing out on anything when I'm having some aged cheese and roasted nuts as a snack (which replaced eating cookies or chips for me). It is a little bit more expensive though.

As for drinks, eliminating fruit juices and opting for the 'light' or 'zero' variant as a drop-in replacement if you want something sweet is pretty easy.

One further thing - the article doesn’t talk much about the physical response to wearing a CGM such as the extreme skin irritation some people get from the adhesive. Or the fact that the CGM reading could be way off the reading you get from a finger prick test - which can in turn vary significantly from a lab test result!

I did the test once with most meters I still had laying around: ballpark correct but according to them my blood sugar level was between 3.8 and about 7 mmol/l. I have one which is very finacky in the 4.0 and lower range which is annoying if you want to know if it really starting hypoglycemia or you are just tired.

Thank you for sharing. As a T1 diabetic too, I was reading this nodding my head all the way through.

Is it not possible to have a device always connected to the bloodstream, with a replenishable supply of glucose and insulin in different compartments, that periodically checks the blood sugar level, and injects what is appropriate to keep it normal?

This kind of exists, and here is one such system:

https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu...

The pump delivers insulin and gets blood glucose readings from a CGM (continuous glucose monitor) over bluetooth. Then the pump can make decisions such as stopping insulin delivery if you're going to go low, doing small correction boluses, and adjusting basal rate.

However it's far from perfect and still needs a lot of management. My wife has T1D and was recently pregnant, which really raises the bar on how tightly you need to control your diabetes. She ended up mostly micromanaging it all herself rather than trusting Control IQ to do the right thing.

The other issue is CGMs are not that accurate, so these systems are making decisions based on not great data.

I have a tandem pump. The problem I see is that you still have to wait an hour for the insulin to take affect. And like you say, it’s based on CGM data which is not always accurate enough. Perhaps in the future there will be implants that deliver insulin in a more direct route, such as intravenous or intramuscular. That would also make an overdose more dangerous, though.

This is either in trial or already in distribution, it is essentially a metered insulin pump coupled with a continuous glucose monitor.

https://www.diabetes.org.uk/guide-to-diabetes/diabetes-techn...

There are systems that automatically deliver insulin, but I don’t know of anything that automatically delivers glucose. That would be convenient.

This all sounds really really hard, I'm sorry you have to go through that.

It’s just insane. I had no idea until Covid triggered the onset of type 1 diabetes in my niece. I was fortunate to spent time with her a year later. Her mother and father seemed to have aged a decade from the stress. I can only hope that the AI monitored artificial pancreas tech currently in testing is approved for general use soon. The cognitive load of monitoring and treatment is insane; the impact of any unanticipated variance so severe.

A solution to this (from a non-diabetic) would maybe to always be eating a keto-like diet. It's not easy, but far easier than having to constantly juggle 100s of carb combinations.

"Diet" might even be the wrong word, more like a lifestyle.

Would it not be better to eat only once a day so the potential for errors is minimised?

Skip carbs altogether?

Continuous delivery closed loop delivery systems are in the works, are they not?

This.

I'm a type 1 diabetic and data scientist. Estimating the causal effect of a unit of insulin or food on blood sugar is an absolute crap shoot. Consider that there's a +/-20% margin of error on the reported carbohydrates on nutrition facts. We might consider this irreducible error that just cannot be modelled (Maybe you could get a calorimeter, estimate the distribution of errors, and reduce that error somewhat). Therefore, even if we created a model that explained all explainable variance, we still have a 20% margin of error. If a meal has enough carbohydrates, a 20% overestimate of insulin requirements would lead to an insulin overdose that would kill you if the resulting low blood sugar is not dealt with. In other words, the irreducible variance is so large that a "perfect" model would regularly suggest lethal insulin doses.

My "solution" is to eat low-carb/keto as a "variance reduction" strategy. Still, removing carbs also introduces gluconeogenesis (the production of glucose from protein) as a factor to consider. The synthesis of protein to glucose also occurs on a much time different time horizon than the consumption of carbs themselves which has implications for insulin dosing and insulin type.

I could go on! But long story short, modelling blood glucose is bloody hard.

This "variance reduction" strategy is also an approach by Dr. Richard Bernstein. Basically smaller doses means smaller mistakes. It's a great approach in my opinion. Obviously the key is sticking to a low-carb diet for that to work, along with tweaking your basal insulin dosage.

For me, this approach worked when I switched from Novolog to Novolin R, which has a slower effect rate. I use shots so it helps match the blood sugar profile of eating higher protein and fat meals. If you use a pump, you can adjust your bolus to give a % upfront and a % over a period of 2-3 hours so that you can match the slower glucose production from protein. In Bernstein's book, he had some typical ratios for grams of protein to insulin that turned out to be pretty close for me.

It obviously doesn't solve everything but I certainly feel better when I'm at 60 and have 1.5 units on board compared to if I had 7. The Novolin R makes me feel even better because I also know my blood sugar can't drop too fast, where Novolog I could be dropping 6-7 mg/dl per minute. So I have time to react and let my body absorb some simple sugars before it's too late.

Just a personal anecdote, maybe someone will find this useful!

Thanks for this! Bernstein's book is the source of my "variance reduction" strategy too! The one thing I haven't adopted is the slower acting insulin. It's one of those things that I know I should try but just haven't gotten around to yet, so thanks for the extra incentive to try it.

> that would kill you if the resulting low blood sugar is not dealt with.

My wife is type I, so I have a sense of what you live with.

She bought a book, "The Insulin Murders", which looked at a number of cases where insulin was the weapon of choice. The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available.

Coma to death is > 12 hours, more like 24 or 48. Assuming other people are around, there is plenty of time for medical response. And treatment is easy, glucogon turns it around in minutes.

And I'm not sure a 20% insulin overdose would trigger coma. Definitely hypoglycemia, but blood sugar has to be pretty low for coma.

Look, I'm not saying it is easy, and risk of harm from getting it wrong is high (as you wrote), but risk of death is much lower than you might think

> The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available.

Yes, but the bad news is it only takes one mistake to do you in, and the battle never stops for your entire life. I had a fellow T1D friend die last summer from hypoglycemia. Wikipedia says (with a citation, available at link):

> In terms of mortality, hypoglycemia causes death in 6-10% of type 1 diabetics.

It's the kind of thing that hangs over you. Every time you go to sleep, you wonder if maybe you took too much at dinner and this will be your last night. (I'm sure you know this from your wife--there's a reason she was interested in that book--but the reading audience may appreciate the context.)

[1] https://en.wikipedia.org/wiki/Hypoglycemia

> The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available.

Except it's extremely hard to get medical care when your mind and body shuts down because of a severe case of hypoglycemia. There isn't always somebody around to call an ambulance.

If you haven't experienced a severe episode of hypoglycemia yourself, you really don't understand fully how it can effect both the mind and body, even if you've seen it in your wife.

And like the other poster mentioned, 6-10% of T1D's die of hypoglycemia. It's a lot easier to die of than you're giving it credit for.

If COVID had a 6-10% death rate, I don't think anyone would be saying "it's actually really hard to die from COVID".

> And I'm not sure a 20% insulin overdose would trigger coma

You can experience hypoglycemia without any insulin overdose. There are many other factors that impact your BG, and sometimes a combination of those will hit a T1D with a severe hypo, even if they took what should have been the correct insulin:carb ratio.

> You can experience hypoglycemia without any insulin overdose.

One of the worst hypos that I have had (Fingerprick said 1.9mmol/l which is about 34 mg/dl) was a 'Lantus low' which is not really an overdose.

It adds a bit to the risk that going down to hypoglycemia is not very good for your brain cells. And staying in hyper is not good for your cells in general, for your eyes or for your internal organs.

You might not die, but might develop some nasty problems later on in your life...

I 100% agree with what you're saying.

Assume a 1:10 insulin to carb ratio (though I don't think insulin dosages have a strictly linear effect) and a meal of 100 carbs. If the meal, in reality, has 80 carbs, you've injected two extra units of insulin. We might expect a unit of insulin to reduce blood glucose by 30-50 mg/dl, so we've reduced our expected blood glucose by 60-80 mg/dl. If you target a blood glucose of 80 mg/dl, this would mean your expected future glucose is 0-20 mg/dl. In that case, you would die.

Now, the problem with this example is that I would 100% take action to avoid dying, so my actual risk of death is still minute despite having a lethal dose of insulin in my body at the time I inject myself. However, it's still a bit strange to know that, conditional on me taking no independent action, I'm hours away from death in certain situations.

> The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available.

And yet, have there not been a number of cases where medical professionals have been convicted of the murders of several patients by injecting them with insulin? I would expect that these patients should have had 'good medical care' available to them.

I have not read the book, but perhaps it is ignoring the fact that extreme hypos may trigger other problems such as heart attacks. When a condition becomes common enough to be given a non-medical name, as in the 'dead in bed' syndrome, then I you can't *assume* you will survive for 24 hours.

The risk of death might be lower than I think, but I'm not to be ignoring any alarms I get.

(Type 2 but insulin dependent)

Insulin overdose is very hard to die from, but it can easily cause permanent brain damage. And that's just in healthy adults. In terms of immediate risk, hypoglycemia is far more dangerous than hyperglycemia (though this is not to discount the severity of DKA).

> gluconeogenesis

I am very curious about gluconeogenesis. I am well aware of this pathway but have read a few times that glucose generation from protein happens very rarely. Have you ever tried eating zero carb whey protein in a fasted state? If yes, have you noticed a spike in glucose? I am genuinely very interested in your experience with gluconeogenesis as a person with diabetes.

Oh, I am very happy to answer this to the extent I can. Whey protein impacts my blood glucose in confusing ways! Most days, I'll have a whey protein shake that consists of one scoop whey protein, a little bit of coffee for taste, and some almond milk. This will typically be my first meal after ~12-16 hours without eating. The correct dose of insulin for this shake can vary from 2 units of insulin to 4.

First, I believe you're correct that gluconeogenesis happens rarely. More specifically, I believe it happens in the absence of carbohydrates in the food you consume. Since I eat a low carb diet, it would make sense that I experience gluconeogenesis.

Second, have I noticed a spike in glucose? Yes! I have to take some amount of insulin if I have a protein shake. The coffee has no effect, so any effect comes from the almond milk and whey. There's maybe half a cup of almond milk in my shakes which is close to negligible. We can probably assume that whey drives most of the glucose effects from my shake.

Third, why is there so much variance in my blood glucose response and insulin requirements? Here, I do not have a defined answer. One aspect may be that whey is quickly digested. The quick digestion may accelerate the effect of gluconeogenesis. Another factor may be the state of the glucose reserves in my liver before I consume the whey. If I'm in a state of ketosis, it may be that my body accelerates gluconeogenesis because it believes it's in a carbohydrate shortage. In this situation, the glucose spike may exceed what would otherwise be expected. There's a few other things such as exercise I'd include here, but I don't have a single definitive answer to this.

A final note: In some sense, I can feel/anticipate my insulin sensitivity during the day. I cannot explain this in writing in any coherent way, but I have decent intuition on what insulin dose between 2 and 4 units I should pick each day. Or, before bed, even if my blood sugar appears constant and in-range, I may anticipate that it'll go up and down as I sleep and eat/inject insulin accordingly. One part of this intuition is "knowing" rather a protein heavy meal will kick into gluconeogenesis while I sleep. Anyways, I can answer more, but as you can perhaps tell, most of my explanations are of the waves hands variety.

Thank you for such a thorough and informative response!

> have to take some amount of insulin

There are quite a few pathways for your muscles and liver to release "stored glocose". If you want to artificially do it, get a glucagon siringe and get the worst hyperglycaemia you ever had since your liver starts converting glycogen into glucose en-masse. Natural release of glucagon is also regulated by having a low carb diet.

I just want to point out that gluconeogenesis can also use fatty acids to obtain glucose.

In addition to the margin of error on food labels, there's also the margin of error on blood tests, which IIRC from the spec's on the one my wife uses it too is about +/- 20%.

If you have the misfortune of having those errors match up (and they will at times) they you eat something that overestimates carbs by 20% and a blood test that overestimates your current glucose level by 20%. Give yourself a corresponding dose of insulin and drive your levels through the floor.

>Consider that there's a +/-20% margin of error on the reported carbohydrates on nutrition facts.

Is this accounted for by product-to-product variation or package-to-package variation?

The 20% seems to be how much you are allowed to lie by. You get another bit for variability of the test, and a third error term for variability of "good manufacturing practice".

Here is the actual rule from https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/cfr...

A food with a label declaration of calories, total sugars, added sugars (when the only source of sugars in the food is added sugars), total fat, saturated fat, trans fat, cholesterol, or sodium shall be deemed to be misbranded under section 403(a) of the act if the nutrient content of the composite is greater than 20 percent in excess of the value for that nutrient declared on the label. Provided, That no regulatory action will be based on a determination of a nutrient value that falls above this level by a factor less than the variability generally recognized for the analytical method used in that food at the level involved.

Reasonable excesses of vitamins, minerals, protein, total carbohydrate, dietary fiber, soluble fiber, insoluble fiber, sugar alcohols, polyunsaturated or monounsaturated fat over labeled amounts are acceptable within current good manufacturing practice.

I am not a lower but the 20% do not seem to be about carbs. Only sugar. Carbs are only covered by the second paragraph and must be 'within current good manufacturing practice', whatever that means. Am I reading this wrong?

The toothless FDA allows for a 20% margin of error on nutrition facts labeling, so it could possibly be one or the other or both.

Some products may just have variation. Some foods will be maliciously mislabeled with 19% less calories/sugar/fat but may have little to no variation within the same product.

I am beginning to believe those who count calories and lose less weight than they anticipate.

Yeah 20% is massive if most of your calories come from carbs.

Sensible dieting talks about 10% reductions in intake along with light exercise.

Trying to manage that by those labels would be impossible.

However eating packaged processed foods isn’t a very good way to lose weight anyway.

I lost 180lbs a few years ago by cutting processed food, soda and alcohol out of my diet. Didn’t change anything else.

I presume the carbs in veggies are pretty much accurate by weight a carrot is a carrot (except for water content).

And there can be large errors in the CGM data as well!

Hi, I'm an artificial pancreas developer! Our device has been approved for human trials which we're going to begin shortly, probably near the end of this quarter.

One thing that the article (which is very well researched, by the way, kudos!) does not quite get right is that the insulin sensitivity _changes_ hour to hour, day to day, month to month. It changes nonlinearly with exercise, stress, sleep, diet, and in a million other subtle ways that we're still trying to characterize. This dynamism is part of what makes management of blood sugar so hard, because the same dose that got you in range a couple days ago now sends you into a hypoglycemic episode, which can be really really dangerous!

The good news is that, while cures for diabetes have been Five Years Out (TM) since the 1980s, artificial pancreas technology (like Loop, OpenAPS, and recently approved Omnipof 5) is here _today_ and already giving people a real solution, not to mention peace of mind, but we still have a long way to go! Access issues, trust relating to years of anxiety induced trauma, cost etc are all barriers to making these solutions widely available, but I feel hopeful that in 20 years, a T1D diagnosis will be as manageable as an eczema one.

If anyone has any questions about APs, I'd be happy to field them!

I just looked at your profile and saw what your company is working on. Very interesting!

My wife and I were recently in a situation where I'd wondered why the hospital didn't have such a thing!

My wife has T1D and we just spent 3 days in the hospital for the birth of our daughter. The most scary and frustrating part of the whole process was my wife's diabetes management. She uses a Tandem T:Slim and a Dexcom G6, and generally has very tight control. But the hospital insisted on taking over during active labor, and we had a very tense conversation with a tactless perinatologist about it.

They wanted to put her on an (IIRC) intermediate acting insulin drip, and rely on finger pricks. We were very worried that they would basically be following a canned script and would end up yo-yoing her blood glucose during labor.

We ended up getting our OB to convince the completely tactless perinatologist that we'd define "active labor" as actually pushing. So we delayed getting her off her pump/CGM and self management for quite a while. And by then we'd also fortunately convinced our nurse who was responsible for the insulin that we knew what we were doing. So she consulted with my wife (literally between contractions and pushing) on any insulin delivery. They adjusted the plan in real time based on what my wife said they should do. Had they just followed the script/protocol the hospital had, we probably would have seen them give my wife way too much insulin.

Then for the rest of our stay, the hospital insisted on checking her blood glucose with finger pricks, though she was self treating with her pump. It really felt like it was for their benefit and not hers.

It was really clear that literally every person we interacted with (except maybe the tactless perinatologist) knew less about T1D than we did. They are much more setup for poorly managed gestational diabetes.

Watching the hospital try to manage her T1D made us feel like we were jumping back in time a decade or two. And this was one of the big, nice, (and expensive) hospitals in San Francisco.

If she would have had a c-section or some other situation where she wasn't able to help direct her diabetes management, I'm kind of afraid of what could have happened.

It really made me wonder why there wasn't an artificial pancreas type system for hospitals.

Now I see that someone is actually working on that!

Sorry to hear about hat - it must have added a huge amount of stress.

I had a similar experience thirty years ago, after being hospitalized for ketoacidosis. (Fun fact: As a DKA patient, I found myself next to an attempted suicide, and noticed that med staff treated us both with disdain. Seriously bad way of managing health outcomes. But I digress.)

The experience in question was a doctor-prescribed insulin injection that the nurse insisted on injecting. I objected, but was unable to be heard. I calmly demanded that the nurse return at 11PM with orange juice to counteract the reaction that was inevitably coming. She did, and the crisis was averted. The next day the doctor prescribed that I could manage my own dosage.

Diabetes management is remarkably complex, and few medical folks know how to do it.

Sorry to hear about your terrible experience, which is unfortunately all too common when it comes to glucose control.

We're on _exactly_ the same page. When people really get what we're doing, often times the reaction is "wait, that doesn't exist yet?" The reasons are complex, and there's lots of hurdles to overcome (IMT was formed in 2014, in development since 2007, we're only just now starting human trials), but we believe that there are millions of people every year who, like your wife if you hadn't spoken up, slip through the cracks and suffer from poor glucose control in the hospital.

Glucose control has the potential to be the next penicillin, in terms of how broadly applicable it is, and how drastically it reduces mortality across a whole range of conditions. We're pretty excited about it!

My girlfriend has T1D, she diagnosed when she was very young. She’s great at managing it and has a pump and a CGM, but there’s still so much bullshit that she goes through when parts break. It’s really made me furious at the medical device industry, so I’m happy to see you’re working on new solutions. As a software engineer, I often wonder if there’s anything I can do to help with T1D management, so if anyone knows of projects/companies that need devs, I’m all ears.

OpenAPS is the big one, though I think they need _documentation_ more than code. Reach out to Dana on Gitter or Twitter, she's always been very helpful in the past!

Hey Jeremy, I was hoping to send you an email based on the email in your profile (jeremy@ideal.com) and received an "address not found". Would there be a better way to reach you?

It's @idealmedtech.com! I did it that way to keep the bots away, but perhaps it was a little _too_ effective

The change you've already made seems pretty likely to work but maybe @ <myusername> .com would be even clearer and still have the desired effect? (or since you have the URL in there some reference to that, YMMV, just the thought sprung to mind so figured I'd share in case it was useful)

Good call! I like that even more than what I did, will make the change

How does one go about getting on the list for trials?

Recruiting is usually handled by study centers, and depends on the study. We're going to take in healthy volunteers for this current one, but I don't think we have any say on who, unfortunately! Would also present a potential conflict of interest to have anyone even tangentially related in the study.

> A hot bath or shower can raise (then lower) BGL.

I suspect the author has come to this conclusion from CGM data, and therefore also that it is wrong (or at least not a very significant effect).

I also have T1D, and CGMs like Freestyle Libre (and probably also Dexcom) includes a temperature sensor and adjusts its readings based on the external temperature to increase accuracy. I think the changes in blood sugar levels during hot showers (etc) is probably due to the sensor not adjusting quickly enough to the rapid change in temperature, and not a physiological response.

For example, if I go directly from room temperature to my cold balcony, the CGM value will immediately make a huge jump upwards with the next reading, but then quickly revert back down again within the following readings. Considering the 15 minute lag time between plasma glucose and the interstitial readings of the sensor, its unlikely the sensor is immediately measuring a change in plasma glucose – it's simply (over)reacting and adjusting to the new temperature (since the thermometer won't have such a long lag time).

Very hot environments, such as a hot sauna, also makes my CGM readings completely inaccurate.

Hm, I finger-prick test and have definitely noticed that getting in a spa or hot tub can do pretty serious things to my BGL. My hypothesis is that if I have any insulin-on-board, that the increased bloodflow causes it to be taken up more rapidly. I think this might include lantus.

Another thing you have to be careful of: pressure on the sensor can drastically effect readings. This is particularly a problem if you sleep on your sensor.

Ah that terrifying middle of the night sudden dive from 100± to "LOW" that turns out to be compression...

Cheers for pointing this out, a few others have as well. I have updated the post to reflect the "measured BGL" increases:

> A hot bath or shower can raise (then lower) the measured BGL. This might be an incorrect reading, so may be dangerous to treat.

I think the reason why this is a problem is less concerning than someone correcting after a hot shower based on faulty data.

I'm going to guess the G6 does not have that correction, based on every shower every day :)

According to [1] the G6 at least measures skin temperature, but it is unclear if it measures air temperature as well (which the Libre does). I also found a reddit thread [2] that indicates it's quite common to get drastic changes in readings during hot showers with Dexcom (probably G6 version based on the date), so you might be an outlier in that regard.

[1] https://www.diabettech.com/cgm/high-temperatures-extreme-con...

[2] https://www.reddit.com/r/dexcom/comments/eyq5h0/hot_and_cold...

Hey 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+.

There's also two "open source" systems - https://loopkit.github.io/loopdocs/ - https://openaps.org/

Tidepool is also trying to take the loop project and get a version of it FDA approved.

Both of the open source projects require you to do the work and actively take control of your setup (a cgm plus pump plus phone). They have really nice support communities. I would never go back to not using Loop.

Our 15 y/o son was diagnosed T1D Jan 2020. Finally got him on loop Sept 2021 and feel the same way. These developers are saints for doing this work. They've given us countless hours of sleep. We had another T1D family come visit us and I set them up on loop. I was in tears when I got text message from them telling us how they their kid is 85% in range and they are actually sleeping through the night. These are truly life changing projects.

I'll be adding one more, I've been using this for some years now:

https://github.com/nightscout/androidaps

It's awesome.

Indeed! AndroidAPS with omnipod dash+G6 (+Android phone) is the latest and greatest setup that you can do

+ the funny thing is that both openaps/androids + loopkit are more advanced than the commercial offerings that we are starting to see now.

Medtronic licensed their artificial pancreas system MD-Logic from Israeli company DreaMed in 2015. Dexcom bought TypeZero (who have system called inControl) back in 2018.

That's to be expected though, self experimentation goes a lot quicker than a regulated track. Even so they are doing great work, and I'm sure the industry is watching this development like a hawk to see what they can pick up.

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.

> Although in theory you've screwed up if you need to bolus glucagon.

Not at all. There are myriad reasons why one might go low despite doing everything right. For instance, unanticipated cardiovascular activity. T1D is a 24/7/365 PITA and one cannot anticipate everything, even with the best will in the world.

Or the classic: have lunch with your colleagues and then walk back to the office. I hope you didn't take all the insulin in the restaurant, just half and half back in the office. It's a nasty drop otherwise...

Jesus Christ I’m exhausted just reading these stories.

That’s fucking ridiculous.

My aunty was T1D and that was back in the 30’s until 90’s when she died, I never realized what a hero she was. Never once heard her complain thus assumed it was easily dealt with. She used to just disappear after meals for a while. It was like some dark family secret.

A loop helps a lot here. You get used to it. It is easier if you're anyhow watching grafana daily...

50% insulin for the lunch. When sitting in front of your computer the carbs are working and just press a button to dose the last 50%. Or let the automation do it.

Oh I 100% agree. I have two kids with T1D.

I think the words “in theory” are probably doing too much lifting in my original sentence.

Yeah, the tslim X2 would be the preferred pump at the moment, but by the time he gets old enough for a pump I hope the technology will have improved a lot.

Our T1D kid has been pumping since 18 months. He was diagnosed at 12 months old. He's six now and has been pumping nearly the entire time.

We're in Vietnam but we do all his endo related medical stuff in Singapore.

Counting carbs in kids is a nearly pointless endeavor. Picky eating habits, nutrition mis-labeling (good luck finding accurate nutrition information in Vietnam), etc. And you'll also need to consider that their bodies are moving targets with hormones, growth spurts, etc. It's going to be really hard to manage just by math alone.

Being five years into it now, because the math seems to be changing daily, we are doing it almost by feeling backed by CGM evidence. In our case, the only CGM available here is the Freestyle Libre which is mildly inaccurate except for informing us on the general direction his blood sugar is taking. It's enough info that we've gotten his hb1ac into near normal range and the miaomiao3 turns into a full fledged CGM that we can use with nightscout and xdrip4ios for realtime monitoring.

I'd also advise you to think about joining a group of parents of T1Ds because there's a lot of things to learn and I've personally found it helpful when working through edge case scenarios that will eventually happen.

My 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 :/ )

> 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 :/ )

Why?

Protein is low carb. Fiber is a carb that doesn't impact your blood glucose, because your body doesn't break it down. Thai food is heavy on noodles and rice, which are both very high carb.

Protein does have an effect for your glucose level. Just comes after a few hours as a nice surprise. And fat makes the insulin work worse, combine the fat with protein and it is quite complex to understand why your glucose is going up 3 hours after eating.

Oh, add some carbs to your protein and fat. Like a steak with creamy sauce and french fries. All the insulin you think is good is not enough.

Isn't this true of essentially most cuisines though, to be carb rich? Indian, Chinese, Mexican, Italian, French, etc - the typical diet in most places is heavily skewed towards carb in general. It's a matter of adjusting the ratio of protein-rich foods vs carbs within that cuisine to your needs.

Different carbs affect people differently, but for me rice was a big no no, whole wheat was OK, and corn was great (whew!).

So, Thai was pretty bad, Chinese not much better but you can find less sugary dishes. Indian was actually pretty good as long as I didn't gorge myself: The fat in the dishes helps slow down the sugar absorption so you don't get the extreme spikes, and you can pair it with a whole wheat roti instead of rice. Mexican was GREAT cause, corn + beans (beans were the best!! so much fiber and protein, barely any spike when eating them). Italian is ok as long as you make it yourself with whole wheat pasta and eat lots of meat and cheese. French is good cause they have lots of meat-focused dishes. The best meals for me were like a pork chop or steak, greens of some kind, and quinoa or whole wheat mac n cheese or polenta.

Lots of rice-centered dishes (rice has an especially high glycemic index), usually a ton of added sugar (pad thai, curries), sugar-based dipping sauces.

I am also a T1D.

This post was a great summary of the constant mental juggling that happens when you have T1D. After almost 25 years with it, the cgm has been the biggest technological leap for management, but the mental aspect is critical too. I highly recommend seeking out groups where you can meet other T1D parents, because that will be a huge help! Seeing people who understand what you are going through, and can help talk you through situations, or heck, just be an informed listener can be huge! :)

I participated in JDRF as a kid, went to Diabetes camp (which I highly recommend!), and now participate in a young adults t1d group where we meet once a month for appetizers and drinks (pre covid, now we meet virtually).

When I am not doing those things, I also like to write and do projects around t1d. Here I write about converting a day's worth of cgm data into sound: https://dddiaz.com/post/glucose-sound/ or here I write about using my health-kit data from my apple watch and combining it with my Dexcom data to try and create a ML algorithm that can predict which days I exercised. https://dddiaz.com/post/glucose-datascience/

My wife developed type 1 diabetes as an adult (40s) from an autoimmune disease (it attacked her thyroid as well). At first her pancreas still had a bit of function left, which made things even harder because there would be unknown random extra insulin, so the only way for her to manage was to eat ultra-low carb and not very much, so she lost a ton of weight. She actually did better once her pancreas no longer produced insulin, because then the calculations all type 1 diabetics must do would actually sort of work (and I emphasize "sort of", for all the reasons explained in the articles and comments) and she could eat a bit more normally.

A problem not mentioned in the article is that the different insulin formulations that are supposedly in the same category (fast acting vs basal) have somewhat different curves, and our insurance company keeps making her switch formulations depending on whatever is cheapest this month, and whenever she switches the calculations are off so she suddenly has to deal with more highs and lows.

> insurance company keeps making her switch formulations depending on whatever is cheapest this month

That's batshit insane... Around here generics are now available for short acting insulins but while they should be the same they are not (ballpark maybe) but insurance is allowed to force cheaper if equivalent (according to them). My physision is writing force prescriptions the insurance has to obey since switching will be bad for the patient with the only benefit going to the insurer.

Parent of a seven-year-old T1D here. We've had him DIY looping (Omnipod, Dexcom, LoopKit) for years now. (Wow, time flies.) Cannot recommend this technology highly enough.

Actually, there were a few big wins, in series: started with MDI (multiple daily injections) and finger pricks. That was awful with a two-year-old, lemme tell ya. Then we got CGM (and Nightscout). That let us sleep at night. Sometimes. But we still had to perforate our small child several times a day, sometimes holding him down as he screamed. Eventually we got a pump, so needles were far less frequent. Got a prescription for some numbing cream, which helped a lot, too. And then came Loop. Loop streamlined the meal process and gave us a lot more margin for error, and it cut down on ad hoc corrections. With Loop, we now sleep _most_ nights. And things feel almost normal most of the time.

Carb math is still a lot of work. (Admittedly, we're probably more precise than most people.) And the whole system can just stop working well for reasons you can't discern sometimes. (Nah, it's always a growth spurt.) But this combo if T1D tech has really, seriously changed our lives. I'm so grateful to the folks who built the open source parts of it.

Late blooming (LADA) T1D here.

I think that CGMs are a great quality of life improvement. I have Abbott Freestyle Libre's prescribed by my diabetologist every 3 months, and they work well with Glimp[1] and any android phone with NFC - the app has nice statistics that really correlate with glycated haemoglobin (HbA1c - long term sugar level indicator) results from my checkups. You can (and should) calibrate the CGM results with prick tests in the Glimp app as well.

It takes a long time testing what kind of carbohydrates work the best for you - how high / how fast your blood sugar levels rise, and how long they stay high. You have to keep yourself as close to the ideal range as possible, while are literally trying out every available carb in the pantry. I've tested all kinds of carbs to find out that potatoes and chickpeas are fine, and that rice is forbidden in my diet. So long kimchi fried rice, I will miss you.

[1] - https://play.google.com/store/apps/details?id=it.ct.glicemia

Beware of apps like Glimp as the Freestyle Libre gone trials with its own, proprietary algorithm. I saw studies reporting a difference between Glimp and the official Libre HW reader (or App) where it turned out to be off by quite a lot..

Moreover, as far as I know Glimp is a closed source App (even if free) and no one except the developers has a clue about how they treat data inside it.

That 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!

We are very lucky for the state of the technology at the moment, and that we can afford it. I spent a lot of the time at the hospital on the subreddit, seeing people living and being happy with it was very good for my morale. We are 100% trying the split bolusing after he went low tonight from not wanting to eat his food. He doesnt mind the injections too much, especially if he is eating cheese or has "wheels on the bus" on the TV :)

It's not relevant for a toddler, but for future reference, another thing to look into is inhaled insulin (brand name in the US is Afrezza, not sure if it's available elsewhere or under what names). The big benefit is that its onset is very fast and duration very short, so you don't have the inject + wait 20-40 minutes cycle. And if you accidentally take too much, you're not dealing with hours of lows because the duration is short. Most people I know who use it wait until after they've eaten (or maybe in the middle of he meal if it's big/long), based on readings from their CGM. It's not perfect, but it's a good tool to have in the toolbox.

The 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.

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.

The oref1 algorithm in AndroidAPS can detect unannounced meals and together with a very fast insulin such as Lyumjev can automate meal boluses for some people.

I know diabetics in 85% in range using this method. Doesn't work super well for me though.

Loop does this too, in a way. But it's still delayed and the insulin peak doesn't match the carb peak. But better than not having too.

> is that the factors change.

Indeed. The weather, (lack of) sleep, stress, mood, etc. All can have a big influence on the rates and factors.

For me, for example, summer is entirely different from winter (and spring and autumn). if everything else would remain the exact same, then still I'd have to switch rates at least twice a year because in summer my body works different. apparently.

> 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.

This a good article. Pretty much sums up everything.

I developed type 1 two years ago as an adult, over 40. It's difficult enough for me, as a former software engineer who has always been decent at doing math in my head. I practically die every other week or so. Just tonight I walked to a bar and barely made it back because I didn't bring enough extra Doritos. Having an infant or toddler with t1 must be nuts. In addition to all the factors mentioned here, I read a medical article a while back which asserted that no two doses of insulin affect someone exactly the same. That's my experience too. Struggles with the medical/insurance system make it even more difficult, whether it's the total mess of the US or systems like the British NHS. The entire thing is basically insane.

Another long-term T1 here. This is one of the best posts I've read describing how hard it is.

The only thing I'd add after a couple of decades... the psychological side gets harder and harder as fatigue sets in, and you have to keep working harder and harder to beat it.

I can't imagine how difficult it would be for a parent and for the post's author. That sounds 1000x harder than facing T1 for yourself. Some of the stem cell research work being done is really exciting. And there is hope that by the time this little kid is grown up, it might be a solved problem.

In the meantime, shame on the pharmaceutical companies for their years of price gouging with insulin in the USA, a creation for which the original patent was gifted to the world for free.

I love this post so much. I'm very grateful for the time the author spent writing it. Thank you!

My dad was Type 2 before he passed. My wife and father-in-law are both Type 1. They both use a Dexcom and an InPen to help regulate insulin.

What's striking about the chart "42 Factors that affect Blood Glucose": There are so many items influencing on this chart that my wife's Dexcom has no information on. Sunburn? Altitude? Hydration levels? The Dexcom is completely oblivious to these factors.

It seems like there is a better model that would do a better job of suggesting insulin levels, but if anything it's input-constrained right now.

I am up reading this in bed. Also watching my 11 year old’s BGL slide down under 80. I’m about to go wake him and make him drink some milk.

Diabetes is a shit autoimmune disease. But the tech gives us some hope. And I treasure every day, no matter how hard, I get with my kid.

Hang in there. It gets easier to manage as they get older and more involved in their care.

Rule #1 if T1D is never be out of reach of food.

The author of this article is correct that too little insulin is bad, but the margin of error for acute distress in that direction is much more forgiving for high blood sugar than low blood sugar (at least in the short term dying-on-the-floor time frame)

Target level is around 90. A little too much insulin can easily push that down to 25/35, which gets you into passing out territory. Conversely, you can get up to 300-400 by not having enough insulin and simply feel very crappy. (Caveat: an 18MO's system may be much more sensitive to highs at that age)

So yes, the acute dangers skew more towards too much insulin & low blood sugar, which is quickly fixed by a high glycemic index food. A small tube of icing is a good emergency supply here, especially for a loved one to carry. If the person with T1D is unable to help themselves then you can gently smear the icing in their mouth and it will begin getting absorbed pretty quickly. Not quickly enough to avoid a terrifying experience, but it works.

We have small stashes of shelf-stable snacks and juice boxes all over our home, multiple layers of redundancy when outside the house... It probably seems strange from the outside, but after so long it just feels normal and there's no feeling of cognitive overhead thinking about it.

We already had nappies, wipes and bags hidden everywhere as emergency supplies. We just added the hypo packs of juice and shelf stable baby treats to them :)

Hah, yes-- since exiting your home with a young child is already an exercise in micro logistics, adding one more item to the list is pretty straightforward.

I'm sure you're already aware of the advantages of pumps, so I'll just chime in with a complete endorsement of them: Switching to a pump for my wife certainly made things easier-- less planning, more freedom. It was also a significant health benefit: Not needing to make educated guesses with long/short acting insulin means things stay in range on a much more regular basis, which keeps your A1C significantly more in control, limiting the long term consequences of lifelong diabetes.

A side comment: beware of how CGM systems are evaluated, it is like if basic statistics gets constantly ignored [1]

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5375072/

Fun read. In addition to a CGM, there are some useful apps to help with some of that math--I use Inpen which also syncs my Novolog pen injections to the app.

Consistent exercise also helps adults make the math consistent, as does diet. Good luck with a toddler or teenager in those areas. :)

A sense of when to preoccupy yourself and when to focus elsewhere can be difficult to develop. Some do not have the personality to accept the lifestyle, and it makes me sad both to see people overthink things to the point of tears and limit their life, as well to see wanton carelessness. But both are understandable because you know a number 20 points off the ideal mark represents potential years of shortened life, which tempts obsessiveness as well as hedonism.

I cried for days after my 11 year old daughter was diagnosed with Type 1 Diabetes. The first week we almost killed her with an Annie’s soft pretzel. It’s been better since then. It is possible to live a good life, and be healthier than many without the disease.

I don't know how long ago that was for you. I was diagnosed at 13 (in 2001). If it's managed well and she has support, and it sounds like it is and she does, then it does indeed get better. It sucks, but it doesn't need to dominate one's life, it just becomes a part of you and you move on with it.

Best.

I was diagnosed sometime during my second year of secondary school (which I think was 2010-2011, which would make me 13 at the time as well, although I admit I don't remember much) and I can definitely back up the importance of a good support network.

I don't know anyone else with this condition and it can be incredibly isolating, and as is the case with many chronic conditions it definitely has a negative impact on mental health.

At least in my experience, it's not something that one can just move on with, as it tends to pervade every experience: "Is my blood sugar going to go too low during this exam/interview/event?" is a common thought and there have been many times where I've taken less then an appropriate amount of insulin to ensure that a hypo doesn't occur at the worst possible moment.

Ever since the pandemic began health care has been harder to access and it's been much easier to slip through the cracks, though I can't really blame anyone considering the demand on health services, it's certainly a reminder of the importance of taking an active involvement in your health.

@grahar64 You're doing a great job taking care of your son and navigating a scary reality. Thanks for taking the time to write this, it is now my #1 resource if anyone has questions.

This article and the comments here have been one of the most educational things I've read on HN. I have a much deeper (yet still superficial) understanding of the difficulties.

Sorry to hear what you are going through. A couple of comments from someone with an interest in the topic, but obviously not your practical experience on the front line as it were:

(1) You mentioned ISF (insulin sensitivity factor), but what you did not mention is that this is not a static factor. It is possible to significantly improve insulin sensitivity through diet and life style, and this is particularly useful for people with T1D. Part of this is to adapt to a significantly less carb-based diet. This is absolutely doable, carbs are not an essential nutrient.

(2) "If your BGL is high for a while (with high levels of ketones)" - this sounds wrong to me. Ketones are high when availability of glucose is low. In many ways this is the ideal to aim for. Ketones are a substitute for glucose, produced from fat. If the person is well adapted for producing and utilizing ketones, s/he can replace carb consumption with fat, which is insulin neutral, and avoid the wasting away of muscle mass which happens with T1D, because the body is energy starved and breaks down protein for glucose.

Just some well-meant input, hope to not sound glib in the context of your challenges.

"Ketones are high when availability of glucose is low" - it seems the body calculates this based on the amount of insulin available, which is why you can eat nothing (and have no basal) and have a BG spike.

Right -- because you have insufficient insulin available, cells cannot utilize the glucose. So your blood glucose rises. If BG is too high for too long, ketones build up, leading to diabetic ketoacidosis (bad), which is different than the ketosis (good) sought by a ketogenic dieter.

People with T1D are taught to check keytones if BG is very high (CDC says > 240 mg/dL; we were taught > 300) for an extended period of time, or also when sick.

https://www.cdc.gov/diabetes/basics/diabetic-ketoacidosis.ht...

AFAIK Ketones go high when glucose is low <b>in cells</b>, not in blood. DKA is literally so many ketones in the blood that it becomes acidic, this happens in conjunction with high BGL. Sams breath when he was in DKA was literally sweet smelling as his body was trying to get rid of the excess glucose. There is plenty of glucose, just none of it is available.

I’ve been a type one diabetic for over 25 years, I’ve been looping with an artificial pancreas for over eight years, and never has an article so perfectly described the immense cognitive load that we have to deal with every waking hour (and a lot of non-waking hours) as this article. This is the canonical explanation now that I will send non-diabetics

This was a great primer. I have a senior diabetic cat. It’s not unlike trying to manage diabetes for a toddler. He might eat all his food, he might not. He might eat and throw up an hour later… it’s a tricky disease to manage. He’s had a few episodes of hypoglycemia and it’s scary. Can’t imagine having to face that with a child.

Awesome write up, but one thing I still don't understand; why is hypoglycemia such a big part of the problem? If insulin is your body's way of moving glucose out of your bloodstream and T1D means that lever is broken, why do you so often end up with too little blood glucose? Is it just because of overestimating the insulin dose? Or is there some other factor; i.e. does glyconeogenesis not work properly or something along those lines?

If the problem is that the pancreas can't produce insulin, I would have thought something like a ketogenic diet would make it easier since you would have less of a need for insulin, and therefore less guesswork trying to counteract the blood sugar spikes from a high carb meal. But it sounds like bringing blood sugar up is a big part of managing T1D, so I'm just wondering why that would be the case for a diabetic but not for a non-diabetic.

> why do you so often end up with too little blood glucose?

Managing the balance between insulin and BG is normally an automatic process performed by the endocrine system. A person whose pancreas stops producing insulin now has to manage that careful balance consciously, which introduces the possibility for errors. And it's complicated even more by all the factors that can influence BG in either direction (see the chart in the OP).

A healthy body is very good at managing that balance automatically through complex feedback loops. Those feedback loops break down if the body can no longer produce insulin on its own.

> If the problem is that the pancreas can't produce insulin, I would have thought something like a ketogenic diet would make it easier since you would have less of a need for insulin

Some T1Ds absolutely do go on a ketogenic diet, or at least a low carb one. You still need insulin, just less of it. Because you still have to dose yourself with insulin, you still have the risk of hypoglycemia on a low carb diet. (Sometimes even more of a risk, because your insulin resistance typically goes down on those diets.)

That being said, there are T1Ds that have a lot of success with keto / low-carb. Just don't believe anyone who says you can cure T1D with that diet. T2D can sometimes be reversed that way, but never T1D.

> But it sounds like bringing blood sugar up is a big part of managing T1D

It's less about "bringing blood sugar up" and more about balancing the blood sugar on the edge of a thin blade. Tipping in either direction is bad.

The majority of people with "Type 2" who are also obese would be asymptomatic (i.e., "remission") if they went down to a healthy weight. (Type 2 patients who are not overweight or obese aren't so responsive to diet.)

https://www.diabetes.org.uk/guide-to-diabetes/managing-your-...

It's almost like there should be a different name for the disorder people get who are obese who develop Type 2 diabetes. Maybe "Type O" diabetes?

> But it sounds like bringing blood sugar up is a big part of managing T1D, so I'm just wondering why that would be the case for a diabetic but not for a non-diabetic.

If you think of insulin as moving the glucose out of your blood stream into a storage area, eg your liver, then, when a normal person's blood sugar goes low, their body stops producing insulin and at the same time dumps some glucose from storage (eg the liver) back into the blood stream.

But if I have injected some insulin, the insulin will still be working and I can't just tell it to stop. So even if my liver tries to help me by dumping glucose into my blood stream, the injected insulin will try to move it back! So it is harder and takes longer for my blood sugar to rise on its own.

Hence non-diabetics can increase their blood sugar levels when needed, but that is a lot harder for diabetics who are on medication.

The biggest problem that I find controlling my BS levels, is not overdosing, but dealing with the unexpected. For example, taking insulin before a meal and then dropping my dinner plate and then trying to find something similar that I can eat quickly or getting an important phone call and being interrupted before I get a chance to eat. Or maybe just getting stuck in traffic and missing a meal.

Keto/low carb diets seem to work better for non-insulin dependent diabetics who are producing some insulin, just not enough. I think most Type 1's would still need some (significant) amount of insulin even on a keto diet, so the hypo problem still exists.

Ah thank you, that makes much more sense to me now. The other answers weren't quite was I was looking for.

I really hope the CGM and "artificial pancreas" technology continues to progress. It really sounds like a very difficult thing to deal with day in and day out.

Thanks for taking the time to help me understand it a little better.

In short, severe hypoglycemia is an immediate risk to your life, and prolonged hypos <50mg/dL can lead to brain damage, especially in infants or people who don't have a lot of reserves.

Gluconeogenesis still happens, but an insulin overdose can tank your blood sugar much faster than your liver can keep up.

Sugarmate is a fantastic app/service that will call a phone number with an automated message if your Dexcom CGM falls below a certain threshold. It’s allowed my wife and I to sleep a tiny bit better knowing if our son’s blood sugar goes low that we’ll be woken up. Not affiliated, just a happy user.

Daughter got this - 100% funding for a CAMaps closed loop system + all the insulin etc. Ty UK NHS

Reply to dead comment: Suffolk Trust, I think because the system came out more or less as she got diagnosed they were keen to get her on it (after 6mths learning to do it by hand).

My thoughts on reading this article: 1. Damn. I’m so happy that my kids don’t have to go through this. 2. This person is the perfect dad for this situation. If I was his kid, he is exactly what I’d want as my dad.

City of Hope Medical Center is developing the PIpepTolDC "inverse vaccine" to treat Type 1 Diabetes and other auto-immune diseases [0]. They have had two successful trials in humans [1, 2]. The third trial is recruiting adults with T1D onset 1-4 years ago [3].

The PIpepTolDC treatment is expensive because it is labor intensive. A technician must take some of the patient's blood, isolate their immune cells, replicate the cells, desensitize them, and then inject them back into the patient. BioNTech is developing a new category of treatments for auto-immune diseases [4] which should be inexpensive injections. These should include a treatment for Type 1 Diabetes.

Frankly, this tech seems amazing and ready to cure many diseases. The pace of development seems slow. I wish there were some way to speed it up. About 80,000 children develop T1D every year.

[0] https://www.precisionvaccinations.com/type-1-diabetes-vaccin...

[1] https://doi.org/10.1126/scitranslmed.aaf7779

[2] https://doi.org/10.1016/S2213-8587(20)30104-2

[3] https://clinicaltrials.gov/ct2/show/NCT04590872

[4] https://investors.biontech.de/news-releases/news-release-det...

I find it really curious that evolution didn't get rid of such nasty condition.

Too much sugar you die, too much insulin you die.

And that affects you since birth.

How is it possible that something so deadly (that I assume is genetic) still exists?

It isn't (entirely) genetic. There are some genes that are risk factors, but no one knows what causes T1D. It also doesn't affect you at birth–it's an autoimmune disease that usually manifests between the ages of 3 and 20 but can appear at any time in life (see the other commenter in this thread whose wife developed T1D in her 40s). In keeping with this, the risk factor genes are mostly related to the immune system. Even in populations with the highest risk haplotype, only ~5% develop T1D, and many people without this haplotype also develop T1D.

If it were purely genetic, evolution would have selected against these genes long ago since T1D was a terminal disease with a life expectancy of less than a year until the discovery and development of insulin-based therapies in the 1920s.

It's an auto-immune disease with complex causality. It doesn't necessarily manifest at birth, the time to develop the auto-immune response and for it to become severe varies. For some individuals perhaps it never develops.

The same propensity to develop a harmful (until my mother's generation invariably fatal) immune response attacking the body's own insulin producing cells might be an advantage to fighting off certain infections (possibly in a different genetic context or living with a different set of environmental exposures).

It's an autoimmune condition that needs to be triggered by "something" where something is thought to be some random unknown subset of mild childhood illnesses.

Functionally, it means every generation or three you lose "a" kid at age 1 or 5 or 11, that isn't too much in the way of evolutionary pressure, especially given how many kids people used to have, and how many other ways there were for them to keel.

Insulin pumps can significantly improve ease of managing this, and are even used with toddlers. They also offer much fiber control than the 0.5u delivery mechanism the author is using for manual injections.

My wife switched to a pump many years ago and it was, instantly, a life-changing experience, granting a level of freedom she had never had before. (Instant being roughly 2 weeks of adjusting to a different insulin delivery schedule)

Sorry to hear that. Onset at that age must be really tough.

Is a CGM one of the only things that is cheaper in US healthcare? GoodRx has the Dexcom G6 for under $400. He says a CGM is NZ$400/month (~US$270).

CGMs are disposable, for example the Dexcom sensor that is replaced every 10 days.

There’s a transmitter part which plugs into the sensor and has a Bluetooth radio and a battery which is cheaper and lasts three months. You pop it off an old sensor and click it into a new one every 10 days until it expires.

IIRC the Dexcom G7 will have the transmitter built-in (and thus will also be disposable.) I'm happy about this b/c transmitter expiration anxiety is real with insurance companies being so stingy - you're lucky to get your new transmitter only a few days before the old one expires.

Hi, Nico here from SNAQ. We are a Swiss based startup that created an app which helps T1Ds to count carbs and to better manage their glucose around meals. You can download the app here:

https://www.snaq.io/

I hope it helps evey T1D to make their lifes a little bit easier.

DM me / reply to this thread if you want a voucher for the premium features.

In the inline chart "42 factors that affect blood glucose", how do I interpret the two different arrows corresponding to each entry?

If you mean an up arrow as well as a down arrow, this means it can increase *or* decrease the blood sugar levels. Usually this means it will affect different people in different ways, but sometimes it can mean that it will affect the same person in different ways at different times.

For example, most people find that exercise will decrease their blood sugars, but some people have reported that intense exercise causes their levels to rise.

When I go for a walk, usually my blood sugar immediately jumps up slightly and then after 10 or 15 minutes it starts to fall. After 30 minutes I am back to where I started and then my levels continue to fall after that.

https://diatribe.org/42factorsexplained gives more details about each of the 42 factors.

I had a pancreatic tumor a couple of years ago that messed with my insulin levels (made me hypoglycemic). That gave me a much deeper appreciation for the struggle those with diabetes face. I had a CGM and had to watch to make sure my blood-sugar didn’t plummet. The “solution” in those cases was to eat; I only really had to worry about it one-way, as my body was over-producing insulin.

What a great article. Like many commenters here, I was completely oblivious to the struggle and I appreciate it a lot more now.

Now if only these companies could be encouraged to avoid creating products destined for the landfill needing people to reverse engineer them just to recharge them.

https://github.com/jakebenz/cgm is also related

I just happened to do some reading and listening recently on a topic in exercise science that may be helpful for diabetics.

Tl;Dr: The body has two basic metabolic systems, glucose oxidation and fat oxidation. Fat oxidation can be trained to be more powerful (as in wattage of output) through high volume, low intensity exercise. Clinicians have observed higher insulin sensitivity in patients who undergo this training, as their bodies simply use their blood glucose system less and thus use insulin less day to day.

Here’s a link to the paper [pdf]: https://sci.bban.top/pdf/10.1007/s40279-017-0751-x.pdf

And here’s a link to a (several hour) podcast between the author and a clinician talking about the results. It also has time stamps to sections about diabetics. https://peterattiamd.com/inigosanmillan/

I’m not affiliated with the paper, author, or podcast in any way. I just came across this research and my dad’s diabetic so I was motivated to learn more.

>A CGM can cost $400 a month

What in the world? $5k a year? How on earth are those things so expensive? 2 fully spec'd macbook pros per year? Surely they aren't that complex. Am I missing something?

They're not enormously complex from a hardware perspective, but the sensing element is really hard to get right. Interference from a whole host of common drugs (including ibuprofen) can really mess up one's signal. Not to mention the regulatory moat; many medical device startups die on the vine working for regulatory approval, or looking for funding for expensive human trials (which quickly get into the millions or tens of millions for a Phase II/III trial)

Consumables -- that go into your body, and hence are expensive to manufacture -- are a big chunk of that cost.

I know this doesn't change your point, but note that it's $400NZD -> ~$270USD.

They are entirely disposable. The transmitter lasts 3 months and the sensors last 10 days. I read something about the FDA requiring the sensors be forced to not work after 10 days, because they were worried about infections.

Interesting, so it really is a subscription cost as well

Medical equipment rules and price gouging. More medical equipment standards for the CGMs. More price gouging for the now $300+ vials of humalog.

Dunno if the millennials,Gen Z,Gen A etc. know these sorts of things - well, there is an old lady by name Julia Roberts who was nominated for an Oscar (its like an award) for a movie about Type 1 Diabetes that I first saw in a theater (that's like a place where us Boomers go to watch stuff you would normally see on your iPhone). I don't know if you have the patience to sit through a long, quite funny and very talkative movie about a bunch of old ladies, one of who's a diabetic, talking about everything under the sun but diabetes, in a salon. Half the diabetic community believe the movie is over dramatized or what have you, but hey, the other half disagrees. Regardless, it remains one of my most favorite films. https://en.wikipedia.org/wiki/Steel_Magnolias

Great write up. Definitely dispelled a few misconceptions I had.

Kia kaha, mate

For anyone following this thread, is there any online community of diabetic type 1 techies? i.e. like all of you guys commenting on this?

I'd recommend getting onto the OpenAPS gitter community! I'm sure they have a Discord by now, too, but whenever I have a question about something obscure related to diabetes tech, they've been a good resource.

To the author: you're doing a great job.

If you have diabetes you probably shouldn't have Milkshakes!

I am rooting for new non-invasive monitoring to succeed.

Your write-up was well-constructed. Thanks!

I will add a few things just to raise awareness, if it hasn't been raised already. I apologize if I missed something in my reading.

I'm the kid whose diagnosis was at a time when we didn't have fingerstick glucometers, human synthetic insulin, or any of the myriad of modern medical approaches to ameliorating the effects of living with T1D. Five decades later I can offer some insight having survived that long with reasonably well-managed T1D while making mistakes with diet, exercise, and insulin and learning from those mistakes. I've also worked in medical devices and healthcare so it's not all n=1. I am the lucky diabetic, FWIW.

It's all about executive function in the end. And you can read below how the disease may impact executive function.

A diabetic beneath a certain threshold of blood glucose may seem to be operating in the lizard brain, particularly with respect to what may seem like an addiction when he eats an entire quart of ice cream in a single sitting, alone. To make matters worse, these thresholds, just like ISF and CR are dynamic, day-to-day. One day, the kid's functional with a BG of 60 and may feel and behave terribly with a BG of 80. This is hard to describe to someone who thinks that the whole thing is linear. Quite the converse. There are points where these changes can feel like falling off a cliff. Having had an IV of insulin once, I can tell you that the adrenalin rush is like falling off a cliff - nor far from the insulin shock therapy scene in "A Beautiful Mind".

I owe a debt of gratitude to the researchers who ran the DCCT[5] when I participated in the mid 80s. Most of what I know I learned from the world-class researchers from that team and being treated at some of the best pediatric diabetes clinics in the US.

I lost a brother-in-law to T1D at an age younger than I am now, so I understand the emotional impact of the disease and what it can do to damage us in ways beyond our comprehension. It's a family sensemaking operation, for sure, because much of what you'll hear seems apocryphal but there is a wisdom that accrues from managing a disease like this without losing your mind.

1. Nicolas Bolo's research at Harvard demonstrates that there is a correlated relationship between changes in blood glucose and the brain's default mode network. [1,2] 2. Insulin is synthesized locally in the cerebral cortex. [3] 3. Exercise can raise blood glucose (in addition to lowering it) depending on the pre-exercise feeding and insulin load, the implication being glycogen release, fat burning, and anaerobic activity. [6]

It's early for a child but from my experience, prefer fat burning to carb-loading as most of the research supports. [4]

Also, while I appreciate the hope and forward-looking perspective of many of the companies involved in making solutions to these problems, we should be careful not to give false hope. There is no question that a child diagnosed now will fare better than one diagnosed without the same technology and access to care - that's provable from HbA1c data.

However, there are serious issues, for instance, in what happens when a closed loop system runs into the fact that interstitial subcutaneous fat measure as a proxy to actual blood glucose is imperfect - particularly at the edges of sleep and exercise, where the draw on fat stores (due to Somogyi effect during sleep and or fat-burning during exercise, respectively) can result in poor data veracity from CGMs that is not at a clinical standard, resistant to calibration, and treated by the industry as if its a PR problem that is dealt with best by crisis management, when it's got to be taken as seriously as calibration in a self-driving car, because that's what it is - self-driving diabetes. An insulin pump and a CGM want to be called "autonomy" when they get beyond the endless MVP, but we're not there yet.

How do I know this? Nearly every sensor I've used since September 2021 has failed catastrophically and been replaced under warranty. I'm wearing two competing brands this very moment just to cross-calibrate beyond my fingersticks.

So when I say failed catastrophically, there are myriad problems there, but the big ones are reporting a high BG when BG is actually low, or vice versa. The false high when low can result in an insulin overdose, and the false low when high can result in DKA. Imagine either of those situations happening while the patient is running a marathon, and you have a rough idea how these device can produce experiences that start to resemble the reasons we study Therac 25. [9]

So, I'm hopeful for young diabetics that they can enjoy the nearly disease-free days that I have more life-long, perhaps with less round-the-clock hypervigilance and what seems like an unintentional PhD in metabolism, tech, and pharmacology.

Just remember, most of what we are treating here is a side effect of exogenous insulin. Minimize exogenous insulin and you minimize the side effects. Minimize side effects and the patient reports less inflammation, better energy, better performance of both brain and body, etc. Literally everything improves with less insulin, much like we see in the general, non-diabetic population around the development of type II diabetes with insulin resistance. In that regard, the two researchers to keep an eye on going forward are the Denise Faustman's Lab at MGH [7], and Valter Longo's Lab at UCLA [8].

Hope my ranting, raving, and rambling help someone somewhere. Please forgive me, the sensors are having a rhetorical dialog about blood glucose data veracity and its impact on healthcare. There's still lots of work to be done.

[1] https://diabetesjournals.org/diabetes/article/60/12/3256/144... [2] https://www.youtube.com/watch?v=UwL_iMLbm1k [3]https://link.springer.com/article/10.1007/s00125-016-3996-2#.... [4] https://www.levelshealth.com/ [5] https://www.niddk.nih.gov/about-niddk/research-areas/diabete... [6] https://www.virtahealth.com/ [7] https://www.faustmanlab.org/clinical-trials/ [8] https://www.longolab.org/ [9] https://en.wikipedia.org/wiki/Therac-25

Thanks for the post! I read http://cureresearch4type1diabetes.blogspot.com from time to time and that author does not give such glimmering summaries of the work that Dr. Faustman is doing (and has been doing for a long while). I don't really know of another voice on this subject. So I'll ask if you've got the time: what do you think about the blog authors evaluation and prospects of this research path?

I think this article does a great job covering many of the difficulties of T1D.

One component I think was under-emphasized is the fact that correction insulin doses are not based on what your current blood glucose(BG) levels are, but on where you predict they will be when the dose really starts taking effect.

Take for example a current best case scenario of having a Loop system via a continuous glucose monitor (CGM) and pump:

If you took a reasonable guess dose for a meal then check your BG levels after the meal, you may find that you have a steeply inclining graph. Here are two possible cases:

  A. You took a correct dose and the timings are slightly out of sync, but BG will eventually turn around.

  B. You under-dosed and will need to either take a correction dose, or wait a long time for the basal dose to fix it.

It can at times be very difficult to distinguish between A and B, and guessing wrong has consequences. Futhermore, you won't really know which is the case until sometime later.

If you are wrong about A then you did nothing, but really you needed to take an correction dose. You won't find out you were wrong for a while, in the meantime your BG is sky-rocketing.

If you are wrong about B: then you over-dosed and are running low. How much did you over-dose? How many carbs should you consume to correct?

Because your CGM only updates every 5 minutes, and typical rapid acting insulin takes about 20 minutes to really get going, this cycle can play out every 25 minutes or so until you have stabilized your BG. all while you may have unhealthy BG levels, and you may be Yo-yo-ing.

This is very slightly mitigated by using an ultra-rapid insulin like Lyumjev, or Fiasp, which can get going in 15 minutes, giving you a tighter loop.

It would be very helpful if:

  1. ... CGM devices had options for more frequent updates during highs and lows. Tighter feedback loops could go a long way.

  2. ... pumps could dose insulin and glucagon automatically.

  3. ... there were even faster acting insulins. This is tough because most insulins are injected interstitially, which takes time for your body to absorb. Maybe an out-patient implantable pump that could inject intravenously would help?

  4. ... there were BETTER INSULIN PUMP SOFTWARE for calculating doses. I have a Tandem T:Slim x2. I  can tell it how many carbs I am eating. Only that. It doesn't count or learn from: proteins, fats, what kinds of carbs, or what specific ingredients are there, or their ratios. All of this can dramatically effect how quickly your BG rises, bringing you back to the original problem of guessing. It should be possible to select from a database of commercially available food and manually provided recipes.

Re: 3, such technology did exist and was commercialized in the early 2000s, and was well liked by those who got to use it (https://www.researchgate.net/publication/38063312_The_Implan..., but it had a host of issues that made it difficult to be widely viable, and ultimately it was discontinued.

I mentioned it in another comment, but inhaled insulin does act much faster than injected insulin. Of course, one downside is that it requires manual dosing; it can't be managed by a pump. But it's extremely fast (and finishes quickly too), so you can get much closed to dosing based on current numbers (obviously you do need to anticipate a tiny bit, but it's drastically less).

Yep - my 10 year old son has a x2 pump and a Dexcom G6. Hopefully the software starts to improve at a faster pace with smartphones becoming more tightly integrated:

https://www.tandemdiabetes.com/landing-pages/remote-bolus

Yeah, I have been looking forward to that for a while. I'm hoping that if their app isn't flexible enough to do menu-based dosing that it will be possible to side-load my own app to do that dosing.

As an aside, the OmniPod 5 was just released and already has App control[1]. The tubeless aspect of that is very attractive.

[1] https://www.healthline.com/diabetesmine/omnipod-5-tubeless-s...

Dexcom being able to send more frequent updates during a hypo would be nice, but not sure if it would offer anything other than noise. We just finger prick during hypos, because I want more immediate information.

grahar64, my nephew is in the same situation as your son he became diabetic at 18 months too, I want to ask a question, did your son get T1D after 18 months vaccination ? because my nephew got ill three weeks after vaccination. I think these data is not entered into the medical system, and if it is not entered no correlation can be made about the possible side effects of vaccines on the population at large. May God help you and your family.

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