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Taking my diabetes treatment into my own hands

• floam 2y ago
  My dad had a strange case of Type-1 diabetes that manifested later in life, at the same time he also got hit with rheumatoid arthritis. > injecting insulin ~15min before you start eating would do wonders for neutralizing the BG spike, the issue is, nobody does it, My dad did. Yeah, it did cause a couple scares. He had very well-controlled numbers but it was all-consuming and I can’t imagine the average person being as thoughtful or on top of it. I’d probably become quite depressed.
  • lazyasciiart 2y ago
    The two T1D people I know both started as fairly small children, so perhaps having parents managing them made it easier for them to always do the injection 15 minutes ahead. I wonder if the author has looked at an insulin port: makes the injection aspect much simpler. https://www.diabetes.shop/i-port-advance/iport_6mm/i-port-advance-6mm https://www.diabetes.shop/i-port-advance/iport_6mm/i-port-ad...
    • mjaniczek 2y ago
      I haven't, but I am now! Thank you for the suggestion
  • cperciva 2y ago
    Not that strange. Adult-onset T1D is just as common as Juvenile-onset; it just happens to often get misdiagnosed as T2D. Both T1D and RA are autoimmune, so it's not surprising they showed up around the same time. He was probably infected with a virus a few years earlier which caused the production of auto-antibodies; Epstein-Barr and CMV are famous for this, and it takes a few years for enough damage to take place that symptoms show up. (Symptomatic T1D starts at around 90% beta cell loss.)
    • floam 2y ago
      I was aware of the autoimmune nexus but not that adult-onset type 1 is common or the likely mechanism that’d trigger them. Thanks
      • lazyasciiart 2y ago
        Adult-onset being common is actually why they stopped calling it “juvenile diabetes” and now call it “Type 1 diabetes”.
    • e40 2y ago
      Apparently the flu can trigger it too.
• Mathnerd314 2y ago
  > https://github.com/SmartCGMS/core/blob/dffdd89a274144d0e9ecbe9f581db9eca0e4b8ed/model/src/bergman/bergman.cpp#L21 https://github.com/SmartCGMS/core/blob/dffdd89a274144d0e9ecb... > Especially, a diabetic patient is warned that unauthorized use of this software may result into severe injury, including death. I like the idea of the post - I have actually been thinking about including some biophysical models for medications in my app - but I do think that if you don't understand what a system of differential equations is, maybe trying to use a software library as a black box is a bad idea. For example... genetic algorithms... really? Like use a shooting method or bisection or something. If you have 3 doses you have 3 variables and it is all continuous so searching the space of inputs should be much easier than examining 51^4 discrete possibilities.
  • bigiain 2y ago
    > but I do think that if you don't understand what a system of differential equations is, maybe trying to use a software library as a black box is a bad idea. <looks at all the AI hype> Seems it's just you and me that think that way...
  • mjaniczek 2y ago
    Don't worry, I'm not using the app's suggestions blindly (or at all, currently). But yeah the SmartCGMS authors disclaimed as much - you're using it on your own risk. This is probably also why apps like LibreLink don't provide predictions but only show historical data - easier to not get sued if you don't give the user advice that could kill them? Re models, differential equations and finding minima: I do agree genetic algo is a bit wonky, and the greedy random walk at the bottom was able to get similar results. Do you have some resources for optimizing a N_51 x N_51 x N_51 x N_51 -> R+ unknown black-box function? My googling led me to eg. Metropolis-Hastings algorithm, but I don't currently get it (the translation to the probability domain escapes me). You're mentioning shooting method and bisection, I'll take a look at those.
    • nerdponx 2y ago
      > Do you have some resources for optimizing a N_51 x N_51 x N_51 x N_51 -> R+ unknown black-box function? Maybe Bayesian optimization? That's often how hyperparameter optimization is done in machine learning, but that has the additional constraint that each computation of the loss function is very expensive. In general the term "black-box optimization" is the right search term, or "derivative-free optimization" which is what Wikipedia calls it.
• kelseyfrog 2y ago
  The author can simply use the adjoint method to estimate their personal parameters, no?
• rpgwaiter 2y ago
  Hey fellow T1D, this is good stuff. As a tip, I’d recommend taking your daily insulin dose, splitting it in half and doing twice daily. It helped me quite a bit in dealing with the inconsistency of it all. I personally inject around midnight and noon if I can remember. Also, if you have an android phone (I have a separate android exclusively for CGM use), there are open source apps that can connect to Libre 3 sensors and let you export data in several formats[0]. You can even connect it to home assistant if you’re into that. It would be really great to have these app readings integrated into your simulation. Can’t wait to see where this project goes! [0] - https://github.com/j-kaltes/Juggluco https://github.com/j-kaltes/Juggluco
  • ollysb 2y ago
    This sounds interesting, which basal insulin do you use?
    • rpgwaiter 2y ago
      Lantus, I started doing this when my insurance stopped covering Tresciba for some reason. Probably less needed on good basal insulin but I imagine it would still help some.
      • ollysb 2y ago
        I'm using Toujeo which I believe is more consistent over 24 hours but I'm going to try your suggestion and see how it goes.
• gumby 2y ago
  The fat thing mentioned in the post: fat seems to slow down absorption in my experience, though not to the extreme that some self-described “body hackers” (who don’t have DM) seem to think. I basically consider my malfunctioning pancreas to have been replaced/augmented by my brain, assisted by a cgm. My diet is rather boring but keeps me alive and keeps the BG in a pretty tight range. My biggest problems are hypo (usually due to being in “flow” for long periods…bliss) and DKA (when I’m backpacking or on long bike rides, which my doctor recommends I not do, but I do anyway).
  • wwilim 2y ago
    See, that's the thing. I've had T1D for 26 years now and I have stubbornly refused to accept that it's not a smart idea to eat anything I want. I am not going to give up hash browns until I lose a leg.
    • croemer 2y ago
      As long as you measure often and inject control amounts liberally eating pretty much everything is fine. I think the diet restrictions were very much necessary before frequent testing and fast acting insulins were available.
    • mft_ 2y ago
      Interesting; as a non-diabetic, there are lots of (nice) things I don't eat regularly (pretty rarely in reality) for general health reasons. Hash browns aren't a particular thing for me, but they'd definitely be on my 'not regularly' list (deep fried, comparatively simple carbs, lots of salt, etc.) Genuine question, not trying to 'gotcha': do you think your stubbornness in this regard was somehow accentuated by having T1D? Is this perhaps a recognised phenomenon amongst diabetics? (An old friend with T1D was similarly [maybe even more extremely] stubborn, being perhaps the most badly-behaved and impulsive of our friend group at that time.)
      • mjaniczek 2y ago
        A datapoint of one: T1D has definitely made me crave sweet stuff more. Perhaps due to being "forbidden fruit", etc. etc.
• arcb 2y ago
  Incredibly motivating to read.
• oezi 2y ago
  My uncle died after getting into a hypoglycemic coma at night. I think it is a real shame that technology hasn't been able to solve what looks like a medium-complexity feedback loop system.
  • friendzis 2y ago
    There ARE licenced closed loop systems for blood glucose/insulin management out there. As always - $€£
  • manmal 2y ago
    The down correction is pretty much solved (injecting insulin automatically). But the body is unpredictable, so the up correction is needed to prevent hypos. The one thing we currently have is automated glucagon delivery, but this has severe downsides: - Liquid glucagon can last only 24-48 hours at room temperature - Once glycogen storage in the liver is depleted, glucagon does help promote blood sugar production, but the effect is way lessened and unpredictable. - The liver‘s glycogen storage is for many T1Ds a life saver in case they have a severe hypo. Injecting glucagon can deplete glycogen so you lose this buffer when you really need it - meaning you won’t wake up again when otherwise you would have. So ideally, one would inject glucose directly, but that’s a volume/convenience problem. It would be ca like carrying a colostomy bag.
• stranded22 2y ago
  Interesting read. My wife is T1D, moved to a closed loop last year. It has been life changing for her - this is not an understatement. Her mental health has massively improved because she isn't having up to 3-4 hypos a day. One thing not mentioned in the intro, hormones hugely affect T1D. She's started perimenopause and everything went out of the window. Closed loop has made this much more manageable.
  • mjaniczek 2y ago
    Out of curiosity, is your wife's closed loop solution official, or homebrew? (If official, which country do you live in, if I may ask?)
    • stranded22 2y ago
      It's official - UK (England).
      • jevogel 2y ago
        In the US, the official Omnipod 5 with Dexcom G6 closed loop solution is also available, starting early this year I think. My wife prefers her DIY AndroidAPS setup with Omnipod Dash and Dexcom G7, though, because the G7 allows you to warm up a new sensor when the old one is still active, so she doesn't have any gaps in her data.
  • croemer 2y ago
    Indeed, insulin sensitivity varies so based on amount of movement during day, stress, hormones, allergies, slight cold, etc that the rigid algorithmic approach they teach patients doesn't work in practice. I.e. you can follow what you're taught by diabetic nurse and you'll have bad control nonetheless. What's the model she uses? My guess would be tslim+Dexcom? It does reduce stress a lot.
    • stranded22 2y ago
      She's using omnipod + dexcom g6. The omnipod was a good change for her as there was one fewer places to fail (being airbubbles in the piping). And now with the closed loop, it's stepped up again. One thing she has found though - her hypo awareness has dropped. They 'feel different'.
• wwilim 2y ago
  One thing you would really benefit from that you don't need a doctor for is getting your BG displayed on a smartwatch. Assuming you have an Android phone and a compatible smartwatch (Galaxy Watch4 in my case): 1. You need to install G-Watch Wear App on your phone and watch 2. You need to replace the official Libre app with a 3rd party app supported by G-Watch like xDrip or Juggluco. There are a few of those, mostly not on the app store and you can even feed their data into eachother, I'm not going to go into detail here. 3. Set your watch face to one of the two available godawful ugly G-Watch Wear App watchfaces and enjoy a live glucose graph on your wrist Depending on your datasource it updates every minute or every 5 minutes with some smoothing applied - again, lots of fiddling here. There are some alternatives for iPhone and probably other watch apps for Android as well.
  • trimethylpurine 2y ago
    Did you have good luck with these? I've tried 6 of these on my mom, at every price point, and compared with a prescription monitor (back of the tricep, needle thing). I couldn't find anything even remotely accurate.
    • tgaj 2y ago
      He is talking aobut connecting the monitor like yours to the smartwatch so you can see you glucose level without pulling our your smartphone. There is no smartwatch on the market that is able to read glucose level using some kind of infrared blood sensor. All the ads are lying.
      • trimethylpurine 2y ago
        Thanks for clarifying. I can see that's what he meant now.
• DoreenMichele 2y ago
  The pdf here: https://news.ycombinator.com/item?id=14667430 https://news.ycombinator.com/item?id=14667430 Suggests muscle protein impacts insulin resistance. If you have glucose in interstitial fluid, physical activity may help. See: https://news.ycombinator.com/item?id=25427090 https://news.ycombinator.com/item?id=25427090 I did a paper on Functional Hypoglycemia a zillion years ago. I have a condition which puts me at high risk of diabetes. Some thoughts I'm not going to try to give citations for because it's based on decades of reading etc: The liver stores sugars that the body calls upon when you are hypoglycemic. Liver support, such as milk thistle, may help. (Tldr: you need to provide the building blocks for glutathione, which the liver uses a lot of. It cannot be consumed directly and must be manufactured in house.) Diabetes is associated with inflammation which may be caused by either infection or high acidity. You could get pH test strips to pee on and track your pH levels as another data stream and IF you see a correlation, treat that as well. Functional Hypoglycemia was traditionally managed with diet. I managed mine that way for years. Avoiding sugars and having fatty, high protein foods late in the day helped prevent middle of the night severe hypoglycemic attacks. Studies show aloe vera does good things for diabetes. Will it help T1? No idea. But you could read up on that and firsthand experience suggests to me it may remedy other issues that are pertinent to diabetes but maybe not recognized as directly related because it's more like an underlying issue.
• rozman50 2y ago
  A friend of mine had to take insulin dose daily. Talking around with people, he found out that diet with carbon hydrates (bread, potato, rice…) increased blood sugar. For the past few years, he is now on keto diet and eats 2-3 eggs per day, due to some missing aminoacyd (not entirely sure why). His blood sugar is normal and he doesn’t have to take insulin anymore. If anyone needs some more info, contact and I can ask him for more details.
  • deleted 2y ago
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  • xboxnolifes 2y ago
    > A friend of mine had to take insulin dose daily. Talking around with people, he found out that diet with carbon hydrates (bread, potato, rice…) increased blood sugar. I'm confused. Is your a friend a diabetic whose doctor never told them that carbs increase their blood sugar level? Because this isn't exactly hidden knowledge for diabetics.
    • rozman50 2y ago
      They probably knew about it, but not about strict keto diet.
    • ddorian43 2y ago
      There are very big misconceptions about keto (ketoacidosis, too much protein, high fat is bad, cholesterol bad, etc) and many doctors don't mention it at all. They tell patients to "navigate carefully on a world full of addictive carbs" which has disastrous results overall.
  • ddorian43 2y ago
    Note that this is possible only for T2D. For T1D, keto supposedly still helps to maintain lower & more consistent blood glucose, thus needing less insulin, but you still need it. Source: I do keto for other reasons.
• gukov 2y ago
  One of the first things I figured out on my own right away is my carb ratio. 15 minutes before eating is a must or else you’ll be on a wild chase. We’re somewhat insulin-resistant in the morning. Plus some glucose is dumped into the bloodstream to wake us up. This requires some units of a fast acting insulin or else the BG will go up even if you don’t eat anything. This is also why carb heavy foods are the worst breakfast foods.
  • protomolecule 2y ago
    >15 minutes before eating is a must or else you’ll be on a wild chase. Also going for a walk after meal smooths the BG curve wonderfully.
• iamthejuan 2y ago
  I would suggest to drink psyllium husk mixed with water, 15 minutes every meal. It would prevent glucose spikes which is the number cause for diabetis, lowers cholesterol level, regulates bowel movement and it is also an instant relief during hyperacidity.
  • carlmr 2y ago
    Are there any studies on this? Not diabetic, but kind of want to prevent getting there, and although I always try to eat enough fibre I guess this could help add fibre anyway when I don't have enough.
    • ddorian43 2y ago
      Another alternative for not going there is to eat: low carb -> weight loss keto -> carnivore -> epilepsy keto -> epilepsy carnivore / KetoAF (the later being the strictest & highest efficiency).
• acron0 2y ago
  This is very cool. I am fortunate enough to have access to a pump and have been hacking closed loops for a few years now using software like Nightscout, AndroidAAPS and xDrip+. My understanding is that none of these are exclusive to pump users, they just work a little easier with them. Maybe there is some interplay with these tools that you can leverage?
• monero-xmr 2y ago
  For those of you on the cusp of diabetes, immediately start working out intensely and reduce your sugar intake. There is still time! It’s not inevitable
  • mjaniczek 2y ago
    You're talking about T2D (which is more about insulin resistance than not producing insulin at all) which can be somewhat mitigated with lifestyle. Healthly lifestyle (exercise, diet, ...) can help T1D management, but T1D is an autoimmune disease: our bodies literally destroyed the cells in our pancreas that produce insulin.
    • shewbees 2y ago
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  • deleted 2y ago
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• voidUpdate 2y ago
  >Aside: what do you .NET folks use nowadays? Winforms lol, it just works and I don't have to spend most of my time trying to work out xaml stuff. Just add the components to the window, set up some event handlers, done
  • neonsunset 2y ago
    AvaloniaUI is nice and a commonly recommended choice nowadays if you are targeting desktop. It is interesting that the author chose to use Elm to describe C# code. If it is their preference, they could have gotten all that with writing the "core" of the project with F#, without having to change examples neither in the actual implementation nor in the blog post (the author does mention F# but not whether they looked into using it).
    • mjaniczek 2y ago
      Yeah, I do have some passing experience with both F# and C#, and since the example code provided by the university was in C#, I kept that code and built on it. But I would have felt better in F#.
      • neonsunset 2y ago
        That's fair, thanks! There's an Elmish FuncUI extension for Avalonia that lets you write applications in Elm style: https://github.com/fsprojects/Avalonia.FuncUI/tree/master/src/Examples/Elmish%20Examples https://github.com/fsprojects/Avalonia.FuncUI/tree/master/sr... (a caveat applies that it is very niche compared to regular Avalonia let alone WinForms or WPF, so the options for idiomatic graphing ui controls might be scarce)
    • oblio 2y ago
      Interesting, last time I looked at it, it was early alpha or something, a few years ago. I wonder how the mobile support is.
  • interludead 2y ago
    A sensible decision indeed
• flanked-evergl 2y ago
  Not a diabetic and I live in one of the richest countries with a social medical system, but the medical industry is an abject failure. My experience with most Doctors who are not surgeons has mostly been that are overpaid for doing essentially nothing and think all their patients are hypochondriacs.
  • alex_duf 2y ago
    I also lived in two of the richest countries with a social medical system My experience is that GPs are over-worked, under paid (given their responsibilities), and can only afford to do shallow diagnostic in the 5-10 minutes they've got per patient. That's explained by a slow but relentless dismantling of any operational margin that existed in the system, whether it's financial, time etc. I'm talking about the situation in France and the UK, not sure where you are, my point is that I agree about the system failing us, there's a lot to be said about what could be done but that's outside my area of expertise. I'm just being a little nicer to the doctors, as there's only so much they can do given the means they're given.
    • jajko 2y ago
      My wife is a doctor (GP, before internal medicine in biggest hospitals), experience with France and Switzerland. What you say is true - they all start as naive optimists who get treated brutally by whole healthcare system first 7-10 years after school, everybody knows it, often illegal from hospitals but good luck suing your employer. Burned out, 60-70 hour work weeks with weekends is the standard, night shifts, a lot of responsibility with little help/oversight. Always 1 oversight away from harming/killing somebody. Many in Switzerland that are Swiss dropped out, foreigners don't have it so easy. Then afterwards they are put into position where they have 30 minutes for patients (in France its ridiculous 15 mins, saving money = worse diagnosis/treatment, no way around it). Don't expect miracles if they see 20 folks like you daily, ideally with very vague problems like chest pain which can be anything from sprained muscle due to bad sleeping position last night to heart attack, while having 10 other comorbidities and taking various medication. Doctors behave as whole system forces them to behave.
• meroes 2y ago
  Was dorm-mates with a T1D. Four of us total. His bunk mate and best friend basically saved his life twice in that semester. How come the disease gets so little publicity??
  • mjaniczek 2y ago
    In my checks the calendar 15 years with the disease, I've thankfully only had a hypoglycemic coma once, at a summer camp. I was leading a bass guitar workshop and just suddenly started making less and less sense. It was the only time my blood sugar dropped so fast my brain didn't notice, didn't alert me to eat something, just went straight into being unusable. Supposedly I laid down on a couch and passed out, which is when one of the kids at the workshop realized it's a similar symptom to what their grandpa had, and alerted a grown-up. I'm very glad there were people around me at that moment. I woke up to a full bottle of cola and some bread rolls with Nutella being forced into me.
  • globular-toast 2y ago
    I wonder if the emergence of type 2 diabetes has had a negative effect. Many practitioners call it something like "fake diabetes" as it has very little in common with type 1. It's not uncommon to meet people who are "diabetic" today, but most of them are type 2, they don't need insulin and you probably won't have to save their life.
• Scotrix 2y ago
  I‘m T1D and using Freestyle Libre + Omnipod Dash and iAPS + Apple Watch. Apple Watch is for me primarily to automate physical exercise detection and target adjustments but also works great with iAPS to control bgs and inject insulin from your watch without taking your phone out of pocket. All built as a homebrew closed loop. While it was somewhat difficult initially to make it work I managed to get over the last year to 85% in range continuously over weeks with a (for me in comparison to before) very low amount of hypos (3 or 4 per week). Happy to share more and the challenges I had if someone is interested...
  • e40 2y ago
    Please share more.
  • sjhatfield 2y ago
    Are you still announcing meals? I know some people use iAPS with no meal announcement which sounds amazing. We are moving our T1D son from OP5 to Loop but would consider iaps in the future. Hoping we can recreate our 92% average time in range with less work needed
  • RandomUser4976 2y ago
    Please share more
• caseyy 2y ago
  I completely agree with the author. T1Ds must take care of themselves. Doctors and nurses suffer from Dunning-Kruger massively. They will quite often be confidently incorrect. I’ve seen this living in large cities in the US and Europe. Or you can read about how medics often make potentially murderous decisions on diabetes treatment — there are plenty of stories. Humility is the cure. I say this as someone who went to medschool myself and I have a lot of respect for medics. The most infuriating thing is when they say that diabetics just die in surgeries, but forget to mention that often the reason is medical negligence. Anyone who has had their T1D loved ones go through general anesthesia surgery knows some of the things doctors tend to suggest, like going off the pump for a number of hours with no insulin replacement. Or demanding significant diet changes just before the anesthesia with no insulin adjustment. One doctor once told a patient I know their blood glucose is okay in the morning, so they don’t need to check before the general anesthesia surgery in the evening — the blood glucose only needs to be checked twice a day. I’m sure the care diagram in that hospital says that, but it’s with the assumption that the patient is conscious and actively managing blood glucose on their own. Another way I agree with the author is about closed loops. Many T1Ds, I believe, cannot have adequate control with the “one basal pattern and set carb ratio boluses” approach. Much less with multiple daily injections. Their daily insulin needs just fluctuate too much for an appointment with the doctor or nurse once or twice a year for dose adjustment. If the patient has any sort of hormonal deregulation day-to-day (which many of us do), it will just not work. My closed-loop total daily dose of insulin fluctuates between 90 and 220 units with very good control. Any sort of “roughly one total daily dose every day” approach will fail spectacularly in this case. Such a patient cannot achieve good control with traditional treatment, in my opinion. Though they sure are shamed a lot by doctors who, once again, Dunning-Kruger their way into thinking that treatment absolutely should work. All in all, closed-loop is leaving many medical teams dumbfounded, some are even afraid of it (and refuse funding or tell parents their treatment is good without closed loops), but it’s a life changer. And a patient with this disease always needs to take it into their own hands because the 30 minutes T1D of training in medschool that I got is absolutely nothing compared to years of first-hand experience patients like myself have. That’s why I don’t blame doctors for being misinformed, but I do blame them quite a bit for not realizing the shortcomings of an education that, once again, generally touches on the subject very little.
• tornadofart 2y ago
  I'm a T1D and I mostly agree with the author. I think this simulation is very interesting. I disagree with the author however on the following point: "injecting insulin ~15min before you start eating would do wonders for neutralizing the BG spike, the issue is, nobody does it, because what if you then get a smaller serving at the restaurant or it gets delayed?" My doc told me the same, which I think is insane. "Here is a hack that solves 80% of your problems but nobody does it, so don't bother." WTF? If you get a smaller serving, order some bread or eat some of your emergency snacks you should always have. If it gets delayed, do the same. You don't need to cover the whole insulin dose, just delay the hypo a little bit. Relax. We live in an industrial world where glucose bombs are available always and everywhere. You'll be fine. Injecting 15mins beforehand has made my life so much easier that I would not miss it for anything. Feel free to ask me anything.
  • mjaniczek 2y ago
    You're definitely making me reconsider it, thanks! Along with the person in another thread saying walks after meals help as well. With a fully remote work these risky "oops I injected but there's no food yet" situations should not happen as often, considering the time-to-fridge is like 10 seconds.
    • InvaderFizz 2y ago
      Knowing little about the subject. If Insulin is a 20 minute lag, and eating is a 20 minute lag. Shouldn't you just dose immediately before eating so they hit at the same time?
      • mjaniczek 2y ago
        It's a very rough rule of thumb, take these numbers with a grain of salt. It could very well be that some food activates in 5 minutes etc. Different insulin types also have different curves. Anyways there are studies about the "inject 15min before food" approach: eg. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945151/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945151/
      • 2y ago
• croemer 2y ago
  Fellow T1D here. Switched to a pump (tslim) 2 years ago, which is a stock/market semi-closed loop requiring no homebrew when paired with Dexcom. Works pretty well in that it keeps things in range when not eating/exercising. Nights in particular now are chill, no more waking up in sweat. Unfortunately the pump vibrates/alarms far too much, causing notification fatigue. I don't even look at them anymore. I wish there was more information in the vibration pattern: just morse code or something, so I can know what the pump is saying without having to do 3 taps to unlock and see whether it's just telling me something I know already. I wish the developers had to dog feed their product.
  • mjaniczek 2y ago
    The LibreLink app allows me to use different alarm tones for lows and highs, and I'm _still_ getting alert fatigue. To the point that my wife needs to ask "is that your phone telling you you have a hyper?" for me to actually start doing something about it, sometimes.
    • eep_social 2y ago
      I disabled all the alarms on my libre 2 (which incidentally is why I won’t be going to the 3). Doing so explicitly puts the responsibility back on me where it was all along.
  • interludead 2y ago
    Your experience underscores the importance of user-centered design in medical devices
• heraldgeezer 2y ago
  >You should also lose weight, when you started coming here you had 80kg, now you’re a centurion. Like seriously, WTF. OK cool bye, see you in 3 months!” a centurion? an officer of the roman army? I do not understand the phrase, is the author fat or not?
  • mjaniczek 2y ago
    100kg+. It's a joke :)
    • heraldgeezer 2y ago
      I see. And won't weight loss help in even Type 1? Is it not a valid argument?
      • mjaniczek 2y ago
        It will help, definitely! As will exercise itself etc. It is a valid argument and the doctor is right.
• janandonly 2y ago
  Very dumb question here, but I don’t dare ask it to ChatGPT. What would happen to T1 or T2 diabetics if we would stop eating all sources of sugars and carbs? So no fruit, no rice, no potatoes and so on? Would it be possible to survive and live comfortably in a state of Ketosis? Or is a 100% ketogenic diet simply not possible on diabetes? I’m asking because my true question is: what if insulin becomes too expensive? Then what? Do we die? Or is there some form of diet that we could live on??
  • throwaway454590 2y ago
    I'm not a medical expert, but as far as I'm aware even a 100% ketogenic diet would still have fluctuations in glucose levels which would require insulin to manage. But, it's entirely dependent on how much insulin a T1 or T2 diabetic's body is still capable of producing which would determine if they would still need exogenous insulin. (Because the quantity required _would_ be much lower than on a higher carb diet)
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  • DougWebb 2y ago
    T1 and T2 are completely different diseases. T2 should not be called diabetes. It should be called insulin resistance or chronic carbohydrate overdose. I was diagnosed as pre-diabetic/T2. I started wearing a cgm and watching how various foods affected my blood sugar. I eliminated foods that caused spikes, and started cooking my own meals so I could control what went into them. I wound up with a very low carb diet of meat and vegetables, and a very stable blood sugar with NO spikes ever. According to my blood work and checkups I cured my NAFLD, cured my hypertension (including getting off drugs for that), and "cured" my pre-diabetes. I lost a lot of weight, but still have a lot more to lose. I put cured in quotes because I don't think this diet can cure you once you're bad enough to need treatment. I think it can only put your disease into remission so that you don't suffer any health effects from it. Some of us just can't overeat carbs or we develop this disease, and the only effective treatment is to stop eating the carbs.
    • 2y ago
• mono812 2y ago
  Interesting stuff! I'm a late T1D and there is just so much that subtly influences your blood sugar levels. I adhere to quite a strict diet and adapt my insuline dosage based on not just the carb contents and glycemic load of the meal, but also the starting point / trends I see in my libre readings. If you can predictably consume carbs (and glycemic load) you can also inject early with confidence (or even post-meal if your meal is really 'slow' or your blood sugar level is low). Going for a 20-30 minute walk during a meal spike (mostly after breakfast and lunch) does wonders for me too. I manage to maintain roughly 99% TIR (4-10mmol/l) on my Libre with this, virtually no hypos and just the occassional bit of hyperglycemia when I just don't want to care. Although obviously this does require you to plan a lot of things in advance and requires effort and all of this is just based off of personal experience and experimentation and does not necessarily translate to anyone else. I'm still really hoping for a more low-effort solution to T1D treatment (or even a cure), but I'm skeptical that we'll see that anytime soon.
  • mjaniczek 2y ago
    99% TIR... that's crazy. Well done. You're an inspiration!
  • vallassy 2y ago
    I still haven't found a tactful way to bring this up, but have you considered a low- or zero-carb diet? As far as I underdstand it, if you don't eat carbohydrates, you don't require insulin to deal with the spikes, and apart from a few grams in the bloodstream, humans require extremely little to no exogenous carbs. I'd love to hear your thoughts if you've looked into this already.
    • mono812 2y ago
      Imho you can't really do a zero carb diet that's healthy. Keep in mind that even leafy vegetables have a bit of carbs in them. Low carb is possible and does indeed generally keep your blood sugar levels more stable. But even a meal that's mostly low carb vegetables and some meat still requires insulin if your pancreas has stopped working entirely. I'm obviously a patient and not a doctor, but from what I've read as a Type 1 diabetic with (next to) no insulin production you have a life expectancy in the order of weeks, no matter what your diet is.
• jhoho 2y ago
  Not sure how widely known this is, but recent studies have shown great, sustained results for type 2 through dietary interventions using wholegrain oat (as it contains beta-glucan): https://www.thieme-connect.com/products/ejournals/html/10.1055/a-0677-6068 https://www.thieme-connect.com/products/ejournals/html/10.10... https://www.sciencedirect.com/science/article/pii/S2214799317300073 https://www.sciencedirect.com/science/article/pii/S221479931...
  • gitfan86 2y ago
    Type 2 has had a high correlation with obesity and high carb diets.
    • Engineering-MD 2y ago
      But interestingly also a very high genetic factor with 90% of identical twins both having T2DM (which is greater than that of type 1 which if I remember correctly is 40%)
      • telgareith 2y ago
        Sounds like Nature vs nurture to me. Until there is a proposed genetic marker... it's just another item confusing the public about correlation vs causation.
      • CRConrad 2y ago
        > very high genetic factor with 90% of identical twins both having T2DM Or both not having it, I hope?
  • telgareith 2y ago
    Looked at the first paper. I have significant concerns that, frankly, I didn't finish reading. 1. Small sample size, <20 iirc. 2. No control group at all. (There should have been a group under the same requirements and same diet) 3. They picked 'uncontrolled', and from my own experience that term is synonymous with "unmanaged." Which, translates to "patient is not compliant with treatment." As such, feeding them exclusively a vague "diabetic diet" coupled with the 5 day hospital stay- well its enough to cloud the results enough that no conclusions can be made. 4. Cont. Because people rarely intentionally make themselves feel like crap- which you will with uncontrolled type II. The hospital stay, its exposure to allegedly* diabetic friendly foods, and subsequent time for the subjects to realize "I feel better, I like this!" Basically invalidates the entire paper. * allegedly, because I just got out of a hospital with a fantastic cafeteria. But, the "diabetic menu" had way to many items with high glycemic indexes, and nothing to maintain a steady sugar level until the next meal. Finally: ''HbA1c was lower four weeks after the oatmeal intervention.'' Two days of fasting won't change an A1c value.
• cpwright 2y ago
  One thing that I would object to is this characterization from the article: >There are people who take insulin pumps (which provide insulin in very small very frequent doses and are ~permanently injected into your body, but are otherwise dumb as a brick) and combine them with continuous glucose monitors, and make the glucose measurements inform and control the pump. This is called “closed loop” or “artificial pancreas”, and getting one officially is very hard or impossible: not FDA approved yet / you need to be part of an university study to get one / … It’s one of those things that “will be here in 5 years”, they say every year for the past 30 years. I've had a Medtronic CGM and pump for 6 years now (680G, now 780G). It is an FDA approved system with feedback from the CGM to the pump. The only thing I needed to get insurance approval was a blood test showing that I was T1 and not T2. The auto mode has been greatly improved in the 780G pump vs. the 680G pump. I only need to stick my finger a couple times a week, and my control has improved. Without the pump and MDI it was quite a bit higher. It's nowhere near as good as an actual pancreas, but it is definitely not vaporware by any stretch of the imagination. The Medtronic support is (mostly good), and I have a pretty high degree of confidence that it will keep me alive. I do have Kwikpens as backup in case of malfunctions - which do happen. The biggest things for me are as simple as ripping your infusion set out while away from home, or the thing has an intractable Bluetooth communications problem or other kind of hardware error. The author is pretty much 100% right about "vibes" though, even with a pump.
  • mjaniczek 2y ago
    Hey, thank you for the correction! I am not keeping up to date with how are the closed loops progressing, and from quite a few of comments here it seems like the future is already here :) Maybe just not evenly distributed - I just need to wait for it to get from US to CZ. I'm glad closed loops are already helping people around the world!
    • brandall10 2y ago
      I recently worked for a company called Tandem Diabetes which has multiple closed loop, FDA-regulated systems going back 9 years: "In July 2014, Tandem announced that it had submitted a PMA for the t:slim G4 insulin pump, which integrated t:slim Pump technology with the Dexcom G4 Platinum CGM System. This device was approved by the FDA in September 2015." https://en.wikipedia.org/wiki/Tandem_Diabetes_Care https://en.wikipedia.org/wiki/Tandem_Diabetes_Care We were still working on international support when I left last year. As you can imagine, there are quite a few regulatory hurdles esp. regarding patient data portability and access.
• umvi 2y ago
  I highly recommend the book "The Diabetes Solution" by Dr. Bernstein. It's written by a T1D-since-childhood who was a manufacturing engineer and used his engineering skills to "debug" his diabetes despite his doctor's efforts to the contrary. However the medical industry rejected his findings on blood sugar control because of lack of medical credentials so he went and got an MD and suddenly more doctors started listening. He basically got ahold of an early glucose tester and turned it into a CGM by pricking himself dozens of times a day and around meals to collect data.
  • PhilipJFry 2y ago
    n++ Dr. Bernstein's book is a must read for every diabetic person. His YouTube channel: https://www.youtube.com/channel/UCuJ11OJynsvHMsN48LG18Ag https://www.youtube.com/channel/UCuJ11OJynsvHMsN48LG18Ag
  • ipnon 2y ago
    The world needs more mad scientists.
• winddude 2y ago
  are you familiar with LoopKit (an opensource automated pancreas)? I'm looking at moving from injections like yourself to this, it looks more complete than the closed systems, and also the closed systems aren't approved in my country.
• underdeserver 2y ago
  (2024)? We're still in 2024, aren't we? (@dang)
  • mjaniczek 2y ago
    I saw this format in the other HN submissions so I assumed it's always supposed to be there. Is it optional when the article is current-year?
    • underdeserver 2y ago
      Interesting, I don't see this in the guidelines or FAQ. The idea as I understand it is that articles that are not from the current year should be marked to highlight they might be out of date. There's no reason to put the current year on it, and as you can tell from the home page, most articles don't state the year (and they're recent).
• noodleman 2y ago
  I'm T1D and currently working on something like this because diabetes healthcare in the UK is effectively non-existent past diagnosis. Managing the condition isn't too difficult after 30 years of it, but dealing with the politics of NHS diabetes care is astronomically more difficult than it was in any decade previously. In my experience, if you are not pregnant, or you aren't at risk of passing out in the next 15 minutes, they don't care. Whatever long term consequences you experience are another department's responsibility. A trend I've seen is that younger diabetes nurses and doctors are extremely dependant on tech (CGMs, insulin pumps), but don't comprehend how they work or what the data means. They don't know what patterns to look for beyond a 24hr window and generally seem to think everything is a bolus ratio or basal problem, overlooking other settings such as correction factor, duration, etc. Because they are tech illiterate, vendor lock-in is becoming an issue, as no health tech companies want you using another tool except the one they get paid for. So I find myself being swapped from platform to platform as they change my devices every year or so, each one being less workable than the last. Glooko only allows 6 months of historic data to be viewed, and only through their web UI. Abbot refused to let me download my data after I was forced off their platform to Glooko. I was happy on Tidepool, but it doesn't work with my current set of devices. No, more funding will not fix this. Threats of criminal punishments for lazy medical professionals and unlimited fines for anti-competitive behaviour from diabetes tech manufacturers will.
  • dbspin 2y ago
    I feel your pain, but 'threats of criminal punishments for lazy medical professionals' isn't a great idea. There are already laws against medical malpractice, but it's pretty obvious why prosecuting doctors and nurses for 'laziness' would be incredibly counterproductive and result in a massive increase in bureaucratic ass covering rather than improved care. Ask yourself - what caused the NHS to get into this situation? Certainly reversing those causes would be a good first step to improving the service and fixing the issues they've caused. According to the doctors and nurses themselves, it's all about cost cutting, increases in hours and generally the financial starvation of the service. They're literally out there striking to be allowed to treat you better. https://news.sky.com/story/the-nhs-sold-out-its-staff-doctors-whose-lives-were-devastated-by-long-covid-to-sue-health-service-13055384 https://news.sky.com/story/the-nhs-sold-out-its-staff-doctor... https://www.telegraph.co.uk/news/2024/05/15/doctors-forced-to-choose-between-patient-safety-and-careers/ https://www.telegraph.co.uk/news/2024/05/15/doctors-forced-t... https://www.bbc.com/news/uk-england-birmingham-64938278 https://www.bbc.com/news/uk-england-birmingham-64938278
• digitalsin 2y ago
  When my wife was diagnosed with T2D, we went through the typical process many do - meet with a dietician, learn what to eat and how much, learn about insulin types and injections, etc. etc. She followed the process to the letter, and what we saw was the insulin injections make you gain weight, weight gain causes more insulin resistance, more insulin resistance means more insulin, more insulin means more weight gain, and on and on you go in this cycle that gets worse over time. We researched more and more and found cutting out carbs heavily helped more than anything else, but she still needed some insulin. When mounjaro started getting a lot of attention, she tried that along with metformin. With those two drugs combined, she was able to get completely off insulin. She lost the weight gain from the 2 years of insulin, which reduced her resistance. She started having hypoglycemia and was able to reduce the metformin by half to get back to normal levels. Her A1C is now 5.5 and has been < 6 for over a year now. Although the metformin was recommended by her endocrinologist, both the carb change in diet and trying mounjaro was something she had to take upon herself, none of her docs told us about this. It's an absolute shame, and it feels like you're meant to be kept sick if you go strictly by the guidance from the ADA and even the doctors.
  • zamadatix 2y ago
    The doctors didn't tell you to cut all the carbs you can and went straight to "take insulin until it's low enough goodbye"??? That's fucking wild, I couldn't make it seconds into being diagnosed type 2 with an A1C of ~20% without being bombarded about diet to the point I almost couldn't get any information besides "change your diet and try metformin and we'll see what other options make sense once we know that impact". I can see why the doctors had not been pushing tirzepatide in that timeline though, in the timeline "mounjaro started to get a lot of attention" was really "mounjaro was approved as safe to treat diabetes with by the FDA". Insulin can "cause" weight gain because having diabetes means your cells stopped absorbing the sugar from your blood properly. "Fixing" the diabetes with insulin means your cells start absorbing the energy you eat like they are supposed to, which means gaining weight again if input > output energy. On the other hand metformin and tirzepatide are also effective as weight loss drugs + lowering carb intake prevented the root problem that was "causes" weight gain with insulin in the first place. I'm hoping I can lower my metformin dosage this next checkup as well, fingers crossed.
• jklinger410 2y ago
  What I've learned that, as an adult in 2024 in the United States, you cannot take for granted: - That your medical professionals are acting in your best interest - That your insurance company is acting in your best interest - That your medical professional knows what they are talking about - That things that are legal to put in your body will not cause irreparable harm to you - That the legal level of pollutants in the water, air, ground, walls, floors, etc are actually safe or even being measured properly - That you aren't being subjected to something that later will be found to be unhealthy, even if it is currently known, until it is litigated in retrospect - That you can afford the treatment that would be necessary to make yourself healthy - That anyone in the industries that would normally protect you (healthcare, insurance, public health, government, etc) even care to do so I understand that some people would look at that list and say I should have never expected some of those, but pardon me for being propagandized at a very young age that we lived in a country that was good and just. That's my bad. So I am not surprised to see this, and expect to see more of it.
  • stonethrowaway 2y ago
    At the same time I would emphasize that people who offer any kind of advice online around life-threatening ailments do put down if they have a related degree, are currently practicing and are licensed in that or a very related field, or if they are conducting self experiments and sharing their results (with YMMV caveat to go along with it). Reasons why should be obvious, but listening to podcasts, or reading pop-science books, connecting the dots and thinking you’re qualified to give, again, life-threatening advice, does not mean you’re actually qualified or you have an idea of how deep the rabbit hole goes (as we are learning, nobody really does). Unfortunately, in my experience I encounter a lot of people who haven’t opened up an intro to biology book since their teenager days let alone an undergraduate biochem book, but they listen to podcasts and think they have it figured out and have the audacity to speak with confidence. I’ve been in situations where the practitioners are wincing but are too polite to call people out - it’s easier to let them just yap out what the podcast said and then change the topic. Don’t be one of these people.
    • 0xdeadbeefbabe 2y ago
• supertofu 2y ago
  I'm prediabetic with two T2 parents and a T2 grandparent and my primary care doctor is entirely unconcerned about it. My lowish tech solution to delay (and hopefully prevent!) the onset of T2 is to use a glucose monitor every 2 hours, every day, and create a database of foods with my postprandial blood sugar reaponse at 1.5 and 2 hours. I also keep track of how exercise affects my blood sugar. Over the last couple years, I have gotten great data on the foods which spike me and the foods which are neutral to my blood glucose. A lot of foods doctors/the internet tout as "diabetic friendly" (like beans, lentils, corn in any form, brown rice, buckwheat groats, non-granny-smith apples) spike me like crazy. Other foods are totally fine (bananas, snap peas, nuts, steel cut oatmeal, fermented dairy, fish). Having an autoimmune disorder on top of the prediabetes, I've learned that the only one who cares about my health and longevity is me. My doctors care about my inflammatory markers and nothing else.
  • mpreda 2y ago
    What is your weight situation? Eat less, exercise more, and you may delay T2D. Reduce or avoid fast carbohydrates. Reduce carbohydrates.
  • coldtea 2y ago
    >My doctors care about my inflammatory markers and nothing else They care about your payments, more likely...
    • jvossy 2y ago
      They're doctors, not CEOs. They are advising based on the behaviors they see from most of their patients, who probably come in asking for quick solutions and are unable to make lifestyle changes stick. Patients who are educated about their own conditions, willing to listen to advice, and able to keep to that advice over the long haul are a very small proportion. Not that doctors shouldn't offer this sort of advice anyway, I am just asking you to please try to understand why they behave in such a way.
      • LeifCarrotson 2y ago
• kapitanjakc 2y ago
  Dumb question here :- My father has diabetes since he was 30, my grand father had it too in his 30s. I am beginning my 30s, will I get it too ? Is it guaranteed that I'll get it ? Can I avoid getting it ? Both my father and grandfather had heart attacks...
  • shrimp_emoji 2y ago
    > Can I avoid getting it ? Yeah, by losing weight. Unless the reason they got it is because of some autoimmune timebomb that's genetically programmed to go off in the 30s and destroy the pancreas.
    • jevogel 2y ago
      FFor more context: Type 1 diabetes (T1D) is an autoimmune disease. Your own immune cells attack your insulin-producing beta cells in your pancreas, leading you to lose the ability to produce insulin to absorb glucose from the blood. You will lose weight, be frequently thirsty, and have to pee frequently. T1D seems to have a genetic factor which you can be tested for. Type 2 diabetes (T2D) is a lifestyle disease where you become less sensitive to the insulin that your body produces. It can be prevented by maintaining healthy diet, exercise, and weight, and it can usually be detected early as prediabetes. There may be a genetic factor predisposing you to T2D, but I don't know if there are tests for it. You need to know which disease your family had to know which answer it is. They are two totally different diseases that just happen to both be related to insulin.
  • sgt101 2y ago
    It depends on genetics and luck. The luck part is that it seems that infections trigger the autoimmune reaction that kills the pancreas. The genetics bit is that you may or may not have got the gene from your father. Most people die of heart attacks in the end. Factors like smoking, lifestyle and fighting in wars are probably more important than well managed type 1 nowadays. The big difference now is that the insulin is human insulin, made by genetically engineered microbes. In the past it was harvested from animals and it didn't work as well. Also constant blood monitoring means that highs and lows can be detected and fixed before damage is done. So - things have moved on, there isn't as much to be frightened of, I'm sorry your dad died young, but you will probably be ok.
• tekgnos 2y ago
  It’s all vibes! Type 1 here for 28 years. You are on the right path here but I think you are missing the “big players” for lack of a better term. The prediction software available now (open source) is quite good and works with different types of CGMS and pumps. You are really going to want to look at Loop. Loop basically collects the inputs in the app automatically for insulin if you use a pump. I’m on the Omnipod DASH and Loop works with a few, Omnipod being my favorite. You can also input injections. It can also collect CGMS data automatically from that system. It works with Dexcom and others (I think Libre). You manually input carbs, and you are still gonna do that based on VIBES. After that, you get these magic prediction lines that show you where you are headed. And with the pump, it can add or lower insulin amounts (closed loop mode) to keep you in range. Pretty common to be 75-90% in range! Check it out: https://github.com/LoopKit/Loop https://github.com/LoopKit/Loop https://www.loopnlearn.org/ https://www.loopnlearn.org/
  • Suppafly 2y ago
    Off topic, but if skip your first sentence and the later mention of insulin, this reads like an acronym and jargon filled comment that could be about anything. Like you could refactor the comment to be about AI LLMs or something.
    • deleted 2y ago
      [deleted]
    • pneumatic1 2y ago
      I understand the entire comment and it literally could not be about anything other than managing diabetes.
  • RandomUser4976 2y ago
    Please share more
• tracker1 2y ago
  Definitely get the "vibes" statement on how much insulin... I can literally have the same meal two days in a row, and one day it takes half as much to manage, or I'll overcorrect need to drink some tang or something similar. I'm T2D, with a completely borked metabolism and gastroperesis (thanks trulicity/ozempic). If I can manage to stick to mostly meat and eggs, I hardly need any insulin and am very stable. Unfortunately, I live with people who don't eat that way, and I'm weak in terms of temptation.
• qwerty456127 2y ago
  Why does hypoglycemia happen in people with diabetes? Healthy people can stay active for weeks without food and for many years almost without dietary carbs (on just fats and proteins - see carnivore and keto diets). How comes gluconeogenesis from triglyceride glycerol and from amino acid fails to cover the essential glucose needs?
  • mjaniczek 2y ago
    I suspect it happens because of your externally provided insulin (as in, you caused your hypoglycemia by injecting too much). IDK if hypoglycemias happen naturally in T1Ds in situations where they don't in healthy people. I assume that eg. when exercising too much etc., even a healthy person would get a hypoglycemia?
    • qwerty456127 2y ago
      > I assume that eg. when exercising too much etc., even a healthy person would get a hypoglycemia? I doubt so. I tried water-fasting for a week while exercising a lot and felt great. Fatigue from jogging felt nonexistent as compared to normal (my normal endurance is pretty low). Resistance exercise muscle fatigue felt way stronger (low recovery rate) than normal yet apparently didn't affect the brain as I neither felt sleepy, nor moody nor intellectually impaired.
  • DavideNL 2y ago
    I think it’s simple: because they injected too much insuline at some point before the hypoglycemia; Which obviously “never” happens to non-diabetics, because the pancreas regulates this automatically, adjusting to circumstances as required.
  • davidthewatson 2y ago
    The previous commenters are correct. T1D here. Sorry for the book. I think you are correct but you may be overstating the case when you say, "healthy people can stay active for weeks without food". Carbs, yes. But its worth noting that Zach Bitter, who holds records in ultra marathon emphasizes multi-modal fueling for lack of a better frame, i.e ketogenic leaning for fat burning and carbs when needed; not perfect ketogenic diet. As we like to say on HN, "dynamic at run-time". Exogenous insulin is the root cause of most hypoglycemia in insulin-dependent diabetes. There are other causes but they are relatively minor. Exercise, alcohol. Most people do not exercise or drink in a focused enough way for those to be major causes of hypoglycemia in insulin populations. Insulin is just another pill with dramatically worse side effects than an actual pill, except maybe macrodosing psychedelics instead of microdosing glucagon. You are correct in your macro diet analysis, except that fasting and ketogenic approaches are far more complex in concert with exogenous insulin than most people realize. If you have an endocrinology or organic chemistry background, this may be worth a shot; but the biochem is complex. The LSS of your last question is that you don't have discrete conscious control of gluconeogenesis or much else in metabolism because it is all driven by well-functioning hormonal changes in the autonomic nervous system. Again, "dynamic at run-time". The dynamics of insulin, glucagon, exercise, and fasting are far too complex to make this a one and done, simple prescriptive approach. It's unusual, but I've practiced these approaches for decades, much to the chagrin of my health care team. That team being highly educated and experienced know the statistical outcomes and they're not good. There are numerous problems with these approaches in diabetic populations who may not have the genetic sensors which make these states survivable, i.e. not all humans can feel changes in glycemia so overdosing insulin is a daily challenge to survival. CGMs are not a cure-all either since the veracity and failure rates are poor by medical device standards. I should know. I've worn a continuous glucose monitor for more than five years including two CGMs concurrently the last few years. They work great for some people. In my case, they're horribly inaccurate (off by hundreds of md/dl) and when I was wearing a closed loop insulin pump, they are root cause of both overdose and underdose states leading to damning hypo and hyper glycemia since the pump has no way of knowing it's being led astray. I'm sure this is covered in cybernetics, control theory 101, or the like. At least I hope so. Some, like me, can feel the glycemic changes and this promotes survival. T1D without glycemic sense may be a death sentence because the path from consciousness to unconsciousness is quick and these states are frequently not survivable without immediate action or a world class ER trauma team. There's a reason T1D is classified as a wicked problem, like COVID. This is why nocturnal hypoglycemia is dangerous even for those who can feel glycemic changes. Trust me, after 50 years of playing this game nightly, I'm not kidding when I say it takes Goggins-levels of asceticism, compulsiveness, and self-care. I believe it's worth R&D spending and a cohort like me who have the biomarkers for surviving these approaches, but n=1. There may be others but I've not interacted with them directly. Here's a well-cited oldie but a goodie on the complexity of diabetes for the obsessively curious: https://www.researchgate.net/profile/Philip-Cryer/publication/7463205_Mechanisms_of_Hypoglycemia-Associated_Autonomic_Failure_and_Its_Component_Syndromes_in_Diabetes/links/56b20cf408aed7ba3fedb250/Mechanisms-of-Hypoglycemia-Associated-Autonomic-Failure-and-Its-Component-Syndromes-in-Diabetes.pdf https://www.researchgate.net/profile/Philip-Cryer/publicatio...
• a3n 2y ago
  T2 diabetic. Metformin, and Trulicity. Although Trulicty has been hard to find recently, so I'm doing without and working harder on my management practices, which is working well. I am not a doctor and I don't know you. Interesting range of comments. I think that whatever you do to manage your diabetes, logging data (meds, food, glucose, weight and bp for me) makes it more effective. I've found that managing my diabetes and weight is better when I log. Just a text file. It keeps me honest with myself, and keeps my management practices front-of-mind. It's encouraging when I'm doing well, even very slightly exciting. And since I've learned not to beat myself up, it's gently self-corrective. Going off logging, I slide out of control. Anyway, that works for me, so it should work for anyone. Right? :-)
• CollinEMac 2y ago
  I'm a Type 1 diabetic living the United States and my experiences have been a bit different. > This is called “closed loop” or “artificial pancreas”, and getting one officially is very hard or impossible: not FDA approved yet / you need to be part of an university study to get one / … It’s one of those things that “will be here in 5 years”, they say every year for the past 30 years. These exist now. I've had one for a few years now. Medtronic 670G. > My treatment is usually: keep the Freestyle Libre app on my phone open as much as possible and when I see my BG’s getting high, I inject a small amount of insulin. How much? No idea. IT’S ALL VIBES. Your correction factor is CF = 100 / (Total Daily Dose). To make a correction you do Additional insulin to administer = (current blood glucose - target blood glucose) / CF Now, even after doing this you'll still have blood sugar spikes and dips but this should get you most of the way there when combined with diet and exercise with very little "vibes" involved.
  • eep_social 2y ago
    > CF = 100 / (Total Daily Dose). do you have a citation? that lines up close enough with my factors but I’ve never seen the formula stated that way and would like to learn more.
    • CollinEMac 2y ago
      I think I first learned this from my endocrinologist. Anyway, this is a good guide: https://www.mountsinai.on.ca/care/lscd/sweet-talk-1/what2019s-a-correction-factor-an-insulin-sensitivity-a-ratio https://www.mountsinai.on.ca/care/lscd/sweet-talk-1/what2019...
• helsinki 2y ago
  Just get a Tandem T-Slim and Dexcom G7. My A1c went from 7.8 to 6.2.
• lisper 2y ago
  I had a very similar experience with eosenophilic esophogitis (EoE). It's an allergic reaction that causes your esophagus to constrict resulting in acute dysphagia (difficulty swallowing). It can get extremely unpleasant for me as well as anyone around me when an attack happens. The problem is that the latency between eating the food that triggers it and actual symptoms is many many hours, and the symptoms only appear if you happen to swallow something that's just a little too big, and by then it's too late. It was only by sheer luck that I managed to figure out what my trigger is (scallops). In order to be diagnosed you have to get an endoscopy, which is also the only indicated treatment (other than avoiding the trigger food if you can figure out what it is). I had this idea of using gel caps to get a better read on my internal state because you can feel them going down but they don't actually get stuck (and even if they do they dissolve pretty quickly and don't cause too much discomfort). The idea is to have them in a variety of sizes, and to start with small ones and get bigger until you can feel one. That gives you much more fine-grained data which you can then correlate with what you've eaten the day before. Trick is, I can't find a source of placebo gel caps in assorted sizes anywhere. I can't even find a manufacturer to make them for me. Every manufacturer I've approach about this insists on having some active ingredient, and they also want minimum orders in the thousands of units. The irony is that I would have no problem getting these on the market as homeopathic remedies of some sort.
  • reaperman 2y ago
    I get empty gelcaps from amazon and local nutrition food stores. They cost like $5 for between 100-1000. You can get them in a wide variety of sizes, though you might have trouble if you're looking for something larger than size "000" (1cm diameter, 2.6cm length). Here is a size chart[0] (but there are cheaper sources for the gelcaps). 0: https://ibspot.com/products/capsuline-size-1-empty-capsules-5000-count-acid-resistant-enteric-colored-vegan-empty-capsules-empty-veggie-pill-capsules-diy-vegetable-capsule-filling-kosher-halal-non-gmo-certified-white https://ibspot.com/products/capsuline-size-1-empty-capsules-...
    • lisper 2y ago
      Yeah I actually tried that but could not figure out an efficient way to fill them.
• cryptica 2y ago
  Interesting read. It's crazy how artificial pancreas aren't yet broadly available. It seems like a big market and represents a big problem that people would be willing to pay substantial money to solve. Surely it's not that technically difficult.
• cryptica 2y ago
  It's kind of sad how slow some technology progresses. 10 years ago, I thought that by now we'd have self-powered machines which can manufacture insulin inside the body or replace essentially any organ. It's crazy that we still can't replicate biological processes. Literally a peace of meat can do this stuff but we can't replicate it. As a software dev, I feel like the industry has slowed to a crawl. Most of the jobs are about building gimmicky software as part of some weird corporate acquisition scheme. There are very few jobs available to build real useful stuff. Those jobs involve taking risks... But private equity firms don't see the point of taking on risks when they can just as easily get risk-free profits. I find the risk-aversion of private equity firms very weird because at their scale, with their finances, you'd think they could make a large number of risky bets and get relatively predictable results but that's not what they're doing. The alternative approach I'm suggesting clearly works; just look at what happened when companies started investing in AI. The level of risk in that case was off the charts, yet clearly, even that bet paid off. The productivity gains of recent AI innovation are broad and obvious. Why isn't this approach the standard? If incentives are the issue, we need to reform the socio-economic system to align incentives to prioritize useful innovation. Remove perverse incentives which reward useless schemes. Encourage broad bets, prioritize technical skill. Funding should be easily accessible to skilled tech people and shouldn't be based on social connections or arbitrary metrics of past financial success. Technical success and financial success rarely align these days because technological alignment with financial schemes is the main determinant of financial success in the tech industry. A lot of innovation is brushed under the rug. Useful innovations which could have provided a solid foundation to build upon are completely deprived of funding. Almost every useful innovation becomes a dead end.
  • schoen 2y ago
    The cell organelles are a bit smaller than microelectronics that we can make with photolithography, aren't they? https://en.wikipedia.org/wiki/Orders_of_magnitude_(length)#10_nanometres https://en.wikipedia.org/wiki/Orders_of_magnitude_(length)#1... Even though that chart lists semiconductor process nodes as down in the single-digit nanometers, the articles about the semiconductor fabrication say that these are marketing terms and don't refer to the size of actual features produced by the fabrication process, which are apparently an order of magnitude larger or so. So you could say cells are still doing some incredibly small-scale (yet voluminous) manufacturing, in a wet environment, such that we couldn't directly manufacture devices like that even if we understood all the details of how they work!
• nataradi 2y ago
  A little tangential to the discussion and anecdotal, but I hope this can generate some discussion. I've found different types of exercise affects my insulin response differently. I have T1D, had it for a little over 20 years. I've noticed that high-intensity short-duration exercises (hill climbs on/off bikes, burpees) have me requiring noticeably lesser insulin (both basal and bolus) for the same carb/calorie intake. This effect lasts for a couple of days, before gradually reverting back. I'm fairly active and play a few sports every other day for about an hour or two at the most, but none of them (in isolation), except for soccer, have shown similar effects. Another curious effect I've noticed is great sleep (>= 8 hours) and managing my stress levels (which goes hand in hand with sleep quality) helps increase insulin sensitivity even further, but not overly so if I haven't been active over the previous few days. Have any other T1Ds noticed something similar?
• anon1358 2y ago
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• RandomUser4976 2y ago
  Fantastic post. Great job Martin Janiczek! Fellow T1D here. Please keep posting because it is useful and interesting! I am a programmer and more glad to help you in any way with databases, SQL, Python, R, C#. Resources that helped me achieve excellent control of my type 1 diabetes. My TIR is 95-100% and lowered my A1C from 11.9 to 4.1 (not low carb, I’m high carb in fact): Fat and protein in meals require insulin 1-2 hours after eating via extend bolus (aka temp basal). Learn how to post-bolus (give yourself insulin AFTER meals) “Fat-Protein Units” (FPU). Fat x .09 x 8 ÷ I:C = units of insulin Protein x .04 x 8 ÷ I:C = units of insulin Sum both. Then dose insulin as a temp basal (extended bolus) over n-hours per the Warsaw Method time schedule linked below. And continue to pre-bolus for carbs like usual 15-30 minutes before you eat (data driven approach is pre-bolus and eat meal AFTER blood glucose values on CGM trend down for 3-4 consecutive readings) https://waltzingthedragon.ca/diabetes/nutrition-excercise/reduce-post-meal-spikes-caused-by-fat-and-protein/ https://waltzingthedragon.ca/diabetes/nutrition-excercise/re... https://drlogy.com/calculator/warsaw-method https://drlogy.com/calculator/warsaw-method Starting point to determine your insulin-to-carbohydrate ratio: 300 ÷ Total Daily Insulin Dose = 1 unit insulin covers n-grams of carbohydrate https://diabetesjournals.org/diabetes/article/68/Supplement_1/116-LB/58538/116-LB-New-Insulin-to-Carb-Ratio-Formulas-for https://diabetesjournals.org/diabetes/article/68/Supplement_... Two books: https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin-Completely/dp/0738215147 https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin... https://www.amazon.com/gp/aw/d/0593542045/ref=tmm_pap_swatch_0?ie=UTF8&qid=&sr= https://www.amazon.com/gp/aw/d/0593542045/ref=tmm_pap_swatch... One podcast: https://www.juiceboxpodcast.com/diabetesprotip https://www.juiceboxpodcast.com/diabetesprotip
• ijustlovemath 2y ago
  Howdy! My startup involves tons of glucose simulation, and I'd be happy to show you what you need to do to get more realistic parameter modelling based on your actual real world data, if you like! Just drop me an email :)
• valval 2y ago
  Treating your diabetes is surprisingly simple, actually; stop eating carbs and plants.
  • lazyasciiart 2y ago
    The problem is that he wants a plan that is not just simple, but also able to keep him alive.
    • valval 2y ago
      It's both sad and funny that it comes as a surprise to you that the diet that humans have been thriving on for hundreds of thousands of years is able to keep someone alive, as opposed to the one that was brought about a hundred years ago and has only caused misery and ill health since.
      • lazyasciiart 2y ago
        I can’t tell if you actually know what type 1 diabetes is or not, but FYI it is not a condition caused or cured by diet and your recommendation would rapidly lead to a miserable death.
• pdjljl 2y ago
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• masjl 2y ago
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