Hacker News Reader

Comment by csnover | Hacker News Reader

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.

View on HN

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.

I think you’d benefit from an app like InPen that lets you save your novolog settings and graphs the insulin remaining in your body for you. It sounds like you don’t understand the curve. It also warns you if you’re doubling doses to dangerous levels of stacking. You really need to learn not to do that no matter what the graph says. Can you get an appointment with a diabetes educator?

> 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.

I was really surprised how difficult it is for competitors like levels to provide CGMs in the US.

Here in Europe we can simply get them from Abbot/Dexcom an ship them.

I can't make any promises, but I'm positive that I'll be able to develop a product that takes care of finding the correct insulin doses when giving activity and CGM data + meal information withing the next year's.

>The author here points out that New Zealand's medical system doesn't always pay for CGMs, while the Australian system does.

Only for under 21s, and only recently. Once you hit 21, the rug is pulled out from under you.

My province (Alberta) in Canada is just starting to cover CGM costa and only for under 18s.

https://www.cbc.ca/news/canada/edmonton/glucose-monitoring-d...

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.

Hi, do you live in the USA? I had a similar experience to you. I am considering doing a research project for grad school about patients in the USA who experienced insurance denials for CGMs.

I do live in the US. Yes. And actually, my endo is probably a better person to chat with. Let me drop her an email and see if she A) is allowed and B) has the time

sweet, thanks!

P.S. feel free to email me at t1dresearchproject@gmail.com -- thanks

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.

Reply on news.ycombinator.com