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.
>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
I think the problem is that you were raised to think that a "good and just" world is one where there is no risk, no variability, and limited self-reliance. This is a fiction and has never existed.
The default state is for none of these services and protections to exist whatsoever. Everything beyond nothing is an imperfect and unstable solution held together with duct-tape.
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.
I've realized similarly and by being "blessed" with very low-grade chronic conditions (family of diabetics, fatigue), I've created my own low grade insurance policy by creating lifestyle interventions in nutrition and exercise to maintain my health.
If I were to summarize the thousands of hours of what the Phd/MD health podcaster space has promoted, the jist of it comes down to:
- Get about 1 cup of 5 colors a day. Usually a smoothie is the way to achieve this. I make them in batches and they are conveniently available as grab and go.
- Prioritize sleep
- Exercise to improve v02 max as high as possible
I think _most_ of the population on hackernews has the financial privilege to implement the above 3 in various ways. But those will provide such a quality of life improvement to anyone dealing with chronic illness that it reduces the need for medicine a ton. And much of the damage from the environment can be mitigated by providing the body with the nutrition necessary to detoxify and deal with the various stresses they bring.
The way to look at modern medicine is that, modern medicine is very good at fast death scenarios. Heart attacks, randomly acute conditions, but they are terrible when it comes to slow death conditions like diabetes and dementia.
We need to look to rely on modern medicine for quick death, while creating interventions on the slow-death side ourselves, unfortunately.
It took me a long time to get to grips with the fact that you can't even take for granted that your own parents act in your best interest. We were all propagandized with love and kumbaya songs. In reality life is a lot more.. erm let's say self benefit driven with a lot of sprinkles of ego in it. People optimize their language output for their self benefit while actions don't really need to be aligned to get most of those self benefits.
When I was first diagnosed with T2 diabetes I was sent to a dietitian who handed me all kinds of pretty literature from the ADA about how great grains and pasta is for diabetics and food pyramids and “eat want you want in moderation and use insulin.”
After 5 years I decided that method was bullshit designed just to sell insulin. Went keto and was off insulin withn 2 months and haven’t had a drop of extraneous insulin since (7 years).
My doctors advised against me going keto because the ADA recommends their diet. When I explained I was going to try it anyway because it made sense that if my body was having trouble processing glucose, that eating a diet that minimized glucose would probably have a beneficial effect.
It was at that point that I realized that many doctors are simply following a treatment formula. Ultimately the ADA had to recognize that keto can be affective at managing diabetes. Yet, they still publish the pretty literature that advises type 2 diabetics to eat a diet that for them is significantly worse than a low carb diet.
While all that is true... the other part is that it's not like non-medical professionals are particularly good at knowing what they are talking about or acting in their own best interest either. In many cases, the institutional care is both horrible and better than what you'd get without it.
It took me a long time to get there, but I eventually did - I agree with every one of things that you listed. Fortunately, I have also learned that there are a whole lot of things that you can do to overcome each of those challenges. It does require a good bit of time to research, understand and apply them - as well as some luck.
Having experienced healthcare in multiple countries I can say most of the items on your list are pretty much universal, unfortunately. Skipping over the capitalistic and legal issues, which people more or less expect, I'd like to zoom in on your item #3. The fact that doctors are (often) clueless for complex diagnostics (not talking about a broken arm, etc.) is shocking to many people.
I think the two main factors driving this outcome are:
1. Due to the complexity of the problems they face and the quick diagnosis expected from them, medical professionals are taught to think in an expert system-like if-then statements. Some of these are rules of thumb, some may no longer apply due to latest research, and some may not be applicable to you.
2. Metabolisms may differ in important ways. A new doctor is trying to make a decision in a highly complicated high dimensional space with the few data points that you provide. This is OK, but they get too confident with their diagnosis.
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.
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.
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.
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.
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!
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...
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
Unironically I use React or htmx with Typescript if I need a UI in front of dotnet. Having spent far too long dealing with all the dotnet thrash, all to build a GUI that only works on Windows desktops, I said enough is enough and learned how to build a web front end.
Best decision ever. I know plenty of dotnet folks who would rather eat a shoe than learn how to build a web front end, but frankly it's still better than what I would get with Winforms. There's so many great free libraries, tutorials, and resources for webdev.
And best of all, now I have something I can host on a free GitHub site and share with people, instead of figuring out how to build an installer.
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).
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.
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).
I've never had DKA in 12 years. How does it happen? I've been on CGM (Libre/Dexcom) and it's impossible to get high enough values unnoticed to end up with ketoacidosis for me. Even before with sticks, I just measured often enough.
Would be really curious to know more how DKA happens to you!
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.
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.
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??
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.
It would probably a very good idea if you can keep to it.
Doing so with mild T2 diabetes could lead to complete remission (as long as the diet is kept).
In more advanced T2 diabetes it could lead to significant improvement, and reduction of required medication.
People with T1 diabetes simply don't produce enough insulin. External insulin is required.
Management of T1 diabetes is also way more complicated and mistakes are immediately life threatening.
Are you familiar with Dr. Richard K. Bernstein's approach? It is a very low carb diet (he doesn't call it Keto as Ketosis is not the aim) combined with a lifetime of experience managing it.
See his book The Diabetes Solution, his Youtube channel, and the Type1Grit facebook group. There are a lot of type 1s running <5% HbA1C on his program.
He's definitely very contreversial, but I always found his reasoning extremley presvasive. Not to mention that he's a 90 year old with T1 from childhood, still practicing medicine and seeing patients (or at least he's been practicing up to a few months ago).
It's actually a quite complex question that does not have a clear cut answer. In case of T2D you can 'go into remission' meaning you can get your blood glucose levels to 'normal levels' with little or even no medication (T2Ds are not necessarily using insulin, they can also use medication that increases insulin sensitivity such as metformin). Generally weight loss, exercise and a healthy diet are what allows them to accomplish that and a keto / low carb diet can definitely help there.
For T1Ds I'm afraid even a keto diet still contains too much carbs to live healthily without insulin. Unfortunately if your body has fully stopped producing insulin and you don't take any artificial insulin your life expectancy is not looking good regardless of how you live.
You require at least a low level of insulin to keep metabolic systems in balance. Whether they eat carbs or not, T1 diabetic patients need insulin or they will go into diabetic ketoacidosis and die. Because insulin necessarily lowers glucose in addition to suppressing ketoacidosis, T1 patients need carbs.
T2 patients are on a spectrum with some having enough insulin production and sensitivity left that they can do okay with no/very low carb intake and may even get better as they lose weight. Some T2 patients get a kind of burned out pancreas and severe insulin resistance which requires exogenous insulin to treat and behaves more like T1 but with the caveat that due to reduce insulin sensitivity, they usually need much higher doses in insulin than T1 patients.
I've lived low-carb as a T1 and my blood sugar was very stable. I would still take sugar to stabilize levels when dipping low. A completely ketogenic diet would be very hard for a T1 and not a sensible goal. Insulin management was simpler, but still required. On many days I would just do the one injection of long-lasting insulin.
While the scantly researched health risks associated with a ketogenic diet remain, the diet is very effective to keep blood sugar stable. A low-carb diet protects most people from T2, and people with T1 profit from simplified insulin management.
For a T2, eating ketogenic could be healthier than eating carbohydrates. Depending on progression, they would recover quickly and not be a T2 anymore.
A ketogenic diet can do some pretty wild things to medication. I'm bipolar and I am unable to do a ketogenic diet without serious side effects, like loss of motor control. If done for a prolonged time, it is possible those side effects become permanent.
I can reduce sugar but not carbohydrates as a whole.
It's worth while reading the literature on pre-insulin treatments, but for type 1 diabetics, the answer is: you might be able to live, if just, for a while (a decade or so), but lifespans are greatly shortened. Probably depends exactly on the particular characteristics of the disease for a patient.
Insulin is cheap to make, now, it is expensive because of commercial considerations like monopolization or investment. In reality any national system worth its salt could produce enough insulin at a very low cost for all diabetics in the world. But, this won't happen because of trade rules and so on.
Some people are trying to build the infrastructure for local/homebrew insulin production, but it's proving to be challenging. See this site for more: https://openinsulin.org/2023-recap/
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)
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.
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.
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? :-)
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.
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.
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.
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.
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.
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.
[+] [-] jklinger410|1 year ago|reply
- 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.
[+] [-] s1artibartfast|1 year ago|reply
I think the problem is that you were raised to think that a "good and just" world is one where there is no risk, no variability, and limited self-reliance. This is a fiction and has never existed.
The default state is for none of these services and protections to exist whatsoever. Everything beyond nothing is an imperfect and unstable solution held together with duct-tape.
[+] [-] stonethrowaway|1 year ago|reply
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.
[+] [-] itchyouch|1 year ago|reply
If I were to summarize the thousands of hours of what the Phd/MD health podcaster space has promoted, the jist of it comes down to:
- Get about 1 cup of 5 colors a day. Usually a smoothie is the way to achieve this. I make them in batches and they are conveniently available as grab and go.
- Prioritize sleep
- Exercise to improve v02 max as high as possible
I think _most_ of the population on hackernews has the financial privilege to implement the above 3 in various ways. But those will provide such a quality of life improvement to anyone dealing with chronic illness that it reduces the need for medicine a ton. And much of the damage from the environment can be mitigated by providing the body with the nutrition necessary to detoxify and deal with the various stresses they bring.
The way to look at modern medicine is that, modern medicine is very good at fast death scenarios. Heart attacks, randomly acute conditions, but they are terrible when it comes to slow death conditions like diabetes and dementia.
We need to look to rely on modern medicine for quick death, while creating interventions on the slow-death side ourselves, unfortunately.
[+] [-] Nathanba|1 year ago|reply
[+] [-] xeromal|1 year ago|reply
[+] [-] kcplate|1 year ago|reply
After 5 years I decided that method was bullshit designed just to sell insulin. Went keto and was off insulin withn 2 months and haven’t had a drop of extraneous insulin since (7 years).
My doctors advised against me going keto because the ADA recommends their diet. When I explained I was going to try it anyway because it made sense that if my body was having trouble processing glucose, that eating a diet that minimized glucose would probably have a beneficial effect.
It was at that point that I realized that many doctors are simply following a treatment formula. Ultimately the ADA had to recognize that keto can be affective at managing diabetes. Yet, they still publish the pretty literature that advises type 2 diabetics to eat a diet that for them is significantly worse than a low carb diet.
[+] [-] cbsmith|1 year ago|reply
[+] [-] kinleyd|1 year ago|reply
[+] [-] Jun8|1 year ago|reply
I think the two main factors driving this outcome are:
1. Due to the complexity of the problems they face and the quick diagnosis expected from them, medical professionals are taught to think in an expert system-like if-then statements. Some of these are rules of thumb, some may no longer apply due to latest research, and some may not be applicable to you.
2. Metabolisms may differ in important ways. A new doctor is trying to make a decision in a highly complicated high dimensional space with the few data points that you provide. This is OK, but they get too confident with their diagnosis.
[+] [-] supertofu|1 year ago|reply
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.
[+] [-] umvi|1 year ago|reply
[+] [-] noodleman|1 year ago|reply
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.
[+] [-] flanked-evergl|1 year ago|reply
[+] [-] tekgnos|1 year ago|reply
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://www.loopnlearn.org/
[+] [-] Scotrix|1 year ago|reply
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...
[+] [-] voidUpdate|1 year ago|reply
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
[+] [-] interludead|1 year ago|reply
[+] [-] JackMorgan|1 year ago|reply
Best decision ever. I know plenty of dotnet folks who would rather eat a shoe than learn how to build a web front end, but frankly it's still better than what I would get with Winforms. There's so many great free libraries, tutorials, and resources for webdev.
And best of all, now I have something I can host on a free GitHub site and share with people, instead of figuring out how to build an installer.
[+] [-] neonsunset|1 year ago|reply
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).
[+] [-] InDubioProRubio|1 year ago|reply
[+] [-] stranded22|1 year ago|reply
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.
[+] [-] gumby|1 year ago|reply
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).
[+] [-] croemer|1 year ago|reply
Would be really curious to know more how DKA happens to you!
[+] [-] wwilim|1 year ago|reply
[+] [-] rpgwaiter|1 year ago|reply
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
[+] [-] ollysb|1 year ago|reply
[+] [-] janandonly|1 year ago|reply
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??
[+] [-] DougWebb|1 year ago|reply
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.
[+] [-] oldgradstudent|1 year ago|reply
Doing so with mild T2 diabetes could lead to complete remission (as long as the diet is kept).
In more advanced T2 diabetes it could lead to significant improvement, and reduction of required medication.
People with T1 diabetes simply don't produce enough insulin. External insulin is required.
Management of T1 diabetes is also way more complicated and mistakes are immediately life threatening.
Are you familiar with Dr. Richard K. Bernstein's approach? It is a very low carb diet (he doesn't call it Keto as Ketosis is not the aim) combined with a lifetime of experience managing it.
See his book The Diabetes Solution, his Youtube channel, and the Type1Grit facebook group. There are a lot of type 1s running <5% HbA1C on his program.
He's definitely very contreversial, but I always found his reasoning extremley presvasive. Not to mention that he's a 90 year old with T1 from childhood, still practicing medicine and seeing patients (or at least he's been practicing up to a few months ago).
https://www.diabetes-book.com/
https://www.youtube.com/@DrRichardKBernstein/videos
https://www.facebook.com/Type1Grit/
There's also the great Gary Tabues and his books, especially Rethinking Diabets
https://garytaubes.com/rethinking-diabetes/
[+] [-] mono812|1 year ago|reply
For T1Ds I'm afraid even a keto diet still contains too much carbs to live healthily without insulin. Unfortunately if your body has fully stopped producing insulin and you don't take any artificial insulin your life expectancy is not looking good regardless of how you live.
[+] [-] _qua|1 year ago|reply
T2 patients are on a spectrum with some having enough insulin production and sensitivity left that they can do okay with no/very low carb intake and may even get better as they lose weight. Some T2 patients get a kind of burned out pancreas and severe insulin resistance which requires exogenous insulin to treat and behaves more like T1 but with the caveat that due to reduce insulin sensitivity, they usually need much higher doses in insulin than T1 patients.
[+] [-] lolc|1 year ago|reply
While the scantly researched health risks associated with a ketogenic diet remain, the diet is very effective to keep blood sugar stable. A low-carb diet protects most people from T2, and people with T1 profit from simplified insulin management.
For a T2, eating ketogenic could be healthier than eating carbohydrates. Depending on progression, they would recover quickly and not be a T2 anymore.
[+] [-] kayodelycaon|1 year ago|reply
I can reduce sugar but not carbohydrates as a whole.
[+] [-] lakhim|1 year ago|reply
I thought this was a neat discussion: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3062586/
A transcript of a speech Joslin gave https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1827782/pdf/can...
[+] [-] sgt101|1 year ago|reply
Insulin is cheap to make, now, it is expensive because of commercial considerations like monopolization or investment. In reality any national system worth its salt could produce enough insulin at a very low cost for all diabetics in the world. But, this won't happen because of trade rules and so on.
Some people are trying to build the infrastructure for local/homebrew insulin production, but it's proving to be challenging. See this site for more: https://openinsulin.org/2023-recap/
[+] [-] unknown|1 year ago|reply
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[+] [-] throwaway454590|1 year ago|reply
[+] [-] rubing|1 year ago|reply
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[+] [-] nimchimpsky|1 year ago|reply
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[+] [-] cpwright|1 year ago|reply
>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.
[+] [-] wwilim|1 year ago|reply
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.
[+] [-] a3n|1 year ago|reply
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? :-)
[+] [-] tracker1|1 year ago|reply
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.
[+] [-] oezi|1 year ago|reply
[+] [-] digitalsin|1 year ago|reply
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.
[+] [-] mono812|1 year ago|reply
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.
[+] [-] meroes|1 year ago|reply
How come the disease gets so little publicity??
[+] [-] mjaniczek|1 year ago|reply
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|1 year ago|reply