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.
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.
You guys are decades deep into an ideologically propelled plan to "Starve the beast" by denying the NHS funding so that care quality declines, and use that as justification to privatize the NHS entirely.
The starting salary for a first-year doctor is below the national median income, and for a nurse significantly below. Their inability to requisition funds & time for care is something there is repeated labor action about. The NHS budget is 5.9% of GDP versus the 17.3% of GDP that the US economy spends on healthcare or the 11.3% of GDP that the UK economy spends on healthcare overall.
Maybe more funding will fix it?
Isn't one of the selling points of universal healthcare that it's overall cheaper in total cost than private insurance? If so, the UK should be celebrated for having such a low percentage of its GDP being spent on universal healthcare.
UK spends about 11% of GDP on healthcare This is comparable to France, Germany, and Switzerland, which spend ~12%, and less than the USA at 16% of GDP.
Things get a little more interesting when you take the overall GDP of each country into account:
Switzerland: 106K, ~$12K per capita
USA: 85k, ~$13.5k per capita
Germany $54K, $6.8k per capita
UK: $51k, $5.8k per capita
France: $47k, $5.8k per capita
https://data.worldbank.org/indicator/SH.XPD.CHEX.GD.ZS
https://en.wikipedia.org/wiki/List_of_countries_by_GDP_(nomi...
Why not reduce it to 1% and see what happens?
It is possible for this class of approach to be cheaper, but also for this particular implementation to be spending too little.
The issue is that the Britain is stagnating, so that percentage of GDP is growing slower than costs.
This is counter to my experience - my daughter has received fantastic care. We have regular time with the endocrinologist and get phoned up inbetween clinics. They have provided a closed loop system and all the backup we could have asked for.
I agree about Glooko, it's not as good as diasend was.
What is it that Camaps + dexcom doesn't do that you want?
This is a surprising view given that I'm T1D in the UK and the healthcare I've received, along with the tech, support and collaboration with diabetic consultants has been first class. You are making an assumption that every doctor is like the one you have (I guess), but its simply not the case.
Good luck with your programming, but the agenda you're pushing for it is remarkably short-sighted.
Abbot refused to let me download my data after I was forced off their platform to Glooko
So I've been using Abbot (LibreLink) since 2019 and if you log into LibreView (https://www.libreview.com/) there's a 'Download glucose data' link in the top right of the screen.
There's also a handy PDF report that I send to my diabetic nurse before my annual meeting, I think I'm the only one of her patients who knows how to do this because she's always thrilled and spends half the appointment going through it in amazement at the data/trends.
Abbot have been quite good overall despite the fact I reported a bug to them in their Android app in 2022 and they still haven't fixed it. If you add LibreLink to the whitelist of apps that can interrupt DND, then enabled DND, LibreLink alerts you saying "Alarms unavailable."
Are you receiving your tech for free from NHS?
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-doctor...
https://www.telegraph.co.uk/news/2024/05/15/doctors-forced-t...
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??
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.
This may be a terminology thing but as a T2 I will always carry that diagnosis. However, mine is in remission because I manage it through medication/diet.
My doctor and I have talked about trying to see if I can drop the medications and still stay in remission but I'll still be a T2 patient.
Also, not all T2s can manage just through a ketogenic diet.
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.
There are some people with T2D—a minority of them—who are not overweight. I think T2D with overweight or obesity should be called something else.
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)
T1 needs insulin, some T2 are ok without it.
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/
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).
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
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.
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.
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...
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.
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.
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.
Every day is a good day to be alive whether the sun is shining or not.
I'm with you. One quick look at history shows nothing is set in stone and it can always get worse.
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.
I think that children are generally raised to not believe there is "risk" associated with listening to experts. This means specialists like Doctors but also politicians and military officials.
The idea that there could be a grift set up to take advantage of people in the medical space, for instance, which is highly regulated and supposed to be for the benefit of people first and for generating capital second, is not intuitive to children.
In fact a wide array of industries and services in the United States, and the world (to not be political, as some commenter said) are set up to take advantage of children or naive young adults.
Secondary education and student loans is a glaring example of this.
The default state is for none of these services and protections to exist whatsoever
In all of human history this is mostly untrue. Humans have always formed societies, and those societies have always provided services for their people. In fact, before capitalism, most of these services were provided in-kind as a right of being a part of the tribe.
This idea that every person is born as an individual and nothing is granted to them belongs to a certain political ideology that is designed to make sure people feel entitled to nothing, and keep things in the private industry, and keep government small. But I digress.
Of course someone has to provide the service, and collect the materials for the service. And that person deserves to be compensated for that work. But the idea that the default state of a human is to be alone with nature and subject to pure individualism is simply not true, and never has been the norm, until that idea was used to justify not providing people with anything.
Everything beyond nothing is an imperfect and unstable solution held together with duct-tape
This idea is also untrue. We've had a lot of time to perfect these things. If we can build skyscrapers and infrastructure to maintain them, we can provide these services. You are conflating political ideology and economic motivation with literal ability. The ability is absolutely there, and was in the past as well. There is something different going on that causes these systems to be "held together with duct-tape" and it's actually other humans actively trying to destroy these systems, not that they are impossible.
There's a time in every human's life where the rose tinted glasses wear off and the reality of human living hits you.
agreed. I think we are at a unique time in history where the rose tinted glass can even exists. Where children can live sheltered in a low risk reality well into their 20's and then whiplash and disappointment and cynicism hits them like a ton of bricks.
I think that low baseline expectations is very important for mental health and general resilience.
This is naked political activism that clearly breaks the HN guidelines and offers zero informational content, intellectual gratification, or other value to me or anyone else here. Please don't put stuff like this on HN.
There is nothing political about what I said.
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.
You can always trust people to act in their own self interest, everything else (including your list) can be proven from that first principle.
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.
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
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).
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#.
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/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)
Interesting, last time I looked at it, it was early alpha or something, a few years ago.
I wonder how the mobile support is.
But have you tried the NET(X)BigTHING framework for GUI? Its a chain of hype-(r-links) forming a gui..
... and it works on every platform from BlackBerry, iPhone, MacOS, Windows, Linux, desktop, and mobile! Has lots of tools to handle different resolution sizes and alternate languages!
Of course it's often a little less performant and requires Learning New Things. But generally the trade-off is worth it for the significant benefits if you want to share it with the most people.
A sensible decision indeed
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.
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.
Just anecdotal. Was T2 and getting kidney stones every two or three months (cause not related but treatment was). Cut out oxalates which restricted diet. Monitored sugar 3-5 times daily. Switched to carnivore diet + onions and mushrooms and went on Metformin. All at the same time. Did this for 2.5 months with no additional exercise. This dropped me down below T2 level. Went off Metformin and am maintaining with same daily testing. Off carnivore for paleo minus anything with oxalates after the 2.5 months strict carnivore.
Strict carnivore for me was steak, hamburger, stew meat fried in butter, mushrooms and onions in butter, bacon, and very sharp cheddar (only on burgers or raw). Eat every bit of gristle and fat. It is very hard to get enough fat.
Brain fog lasted for 10-11 days. Felt fantastic after that.
To keep your carnivore costs down I would recommend stew meat from Costco fried with onions and mushrooms when you can't stand steak or plain burgers.
This has worked for me for the last 6 months. I have no idea what it will be long term. Maybe someone will find something useful in it.
I've found I do best with a very similar diet... mostly meat and eggs, some cheese and sometimes onions, mushrooms etc. I notice that some starchy foods hit me worse than others. Legumes are pretty bad on how I feel, and spike me to no end. Similar with wheat products. Corn, rice and potatoes spike my glucose, but I don't feel physically ill the next day like with many other foods.
It sucks, and I wind up cheating 2-3x a week (I live with people that eat different than I do).
Check the work of David Unwin from NHS, who has reversed T2D in many patients using dietary interventions: https://www.diabetes.co.uk/blog/2015/08/dr-david-unwin-publi...
This publication is a good starting point to his approach. Early time-restricted eating of low sugar and low starch meals is the key: https://nutrition.bmj.com/content/bmjnph/early/2023/01/02/bm...
My doctors care about my inflammatory markers and nothing else
They care about your payments, more likely...
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.
What is your weight situation?
Eat less, exercise more, and you may delay T2D. Reduce or avoid fast carbohydrates. Reduce carbohydrates.
Get a continuous glucose monitor. You should be able to convince your doctor to write you a prescription for it. If not, there brands that will do the prescription for you after a quick video call with a doctor (but they're more expensive).
Also the FDA cleared at least one brand of CGM to be sold without a prescription, starting "summer 2024": https://www.dexcom.com/stelo
You should expect to pay $80 - $200 per device, and they last one 14 days, but the insight they give is really worth it.
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.
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?)
It's official - UK (England).
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.
The mental and physical benefits of improved glucose management cannot be overstated
Definitely - but it is also that she doesn't need to keep such a management on it, freeing her mentally. That and not yoyoing in sugars (and feeling like a failure).
Her description: what else can you do for 30 years and still feel like a failure as it isn't working like it should?
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.
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'.
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/10.10... https://www.sciencedirect.com/science/article/pii/S221479931...
Type 2 has had a high correlation with obesity and high carb diets.
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%)
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.
very high genetic factor with 90% of identical twins both having T2DM
Or both not having it, I hope?
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.
There are several more studies and dietary recommendations regarding oat, just search Google Scholar and similar.
I'm skeptical of any claim that says consuming carbs is helpful when it comes to type 2 diabetes.
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.
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.
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?
You forget one very important rule: it's all vibes :D No but seriously: insulin starts to act after 20mins. Its action is more like a flat parabola.
Glucose acts more in harsh peaks. So you want the glucose peak to hit when you are at the maximum of insulin action. Hence the 15mins delay.
This is all roughly speaking, YMMV.
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/
one more tip I want to share: when you have a dramatic hypo or your blood sugar is dramatically high, double-check with the old school prick-test device. Your CGM might exaggerate. That stopped some nefarious cycles of being too high, then too low etc. for me.
It's hard at first. It is a habit to take, and you have to withstand a bit of social pressure first, when you're late with taking insulin and still want to wait. But I root for you, you can do it!!
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).
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.
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.)
A datapoint of one: T1D has definitely made me crave sweet stuff more. Perhaps due to being "forbidden fruit", etc. etc.
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.
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!
Just living my life in an urban setting it’s never been a problem.
Had a serious episode about a month ago (ketones at 9 mmol/L). I was on a short backpacking trip with some friends: four 15 mile days. I don’t carry a lot of carbs. My pen became hot despite my best efforts.
Had another episode earlier in the year in a similar trip backpacking in the snow — shorter distance, harder work; my meter froze and stopped working so I don’t know BG level. On the second day my pen got “slushy” even though I carried it next to my body/in sleeping bag.
My understanding is that in these cases your liver starts out dumping glycogen into the bloodstream but reserves are exhausted and so you start going into ketosis. I don’t understand the mechanism under which my glucose then hikes — some stress reaction?
This is generally scary for my companions but not for me as I am a bit confused, falling over etc. The only feasible way out was to hike. Fortunately on the first trip we had adequate water access so I drank (and pissed out) about a litre a mile.
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.
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.
So Metropolis-Hastings for example is a probabilistic algorithm. You don't need a probabilistic algorithm. (Well, you do when you want to estimate your physiological parameters, the Bayesian stuff and so on, but that is a whole separate can of worms). I didn't look too carefully at your objective function but it looked continuous - small perturbations in input mean small changes in the objective function. Like hypoglycemic readings, you can easily calculate "how hypoglyemic" rather than a yes/no. Naturally there are places where the objective function isn't continuous and that's where you have to do a discrete-style search, but when it's mostly continuous there are well-known numerical methods. Like check out https://docs.scipy.org/doc/scipy/reference/optimize.html, it isn't necessarily what you need but looking up the Wikipedia pages of the method names will be helpful. I've also found ChatGPT knows an insane amount of math, I wouldn't trust it to write a specific algorithm but it can give intelligent comparisons and list similar algorithms.
What I was saying is I don't think N_51 is the right way to model a dose. I would model it as a real number in the interval [0,50]. I would still round whatever the model gave to what I could actually measure out decently, but within the model I would not use discrete numbers.
Oh and regarding probabilistic stuff, I have been playing with PyMC, it seems eminently usable. There is some slightly more specialized software like Stan, and it is certainly worth looking at some Stan tutorials if you don't know anything about probabilistic programming, but PyMC is hackable and modular in a way that Stan is not. There is also tensorflow-probability but I couldn't get it to work, it seems not as active as PyMC. Haven't read it but I found https://github.com/CamDavidsonPilon/Probabilistic-Programmin... and that's probably going to be my coffee table reading for the next few days.
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.
Don't worry, his doctor doesn't know what a differential equation is either so this is a large improvement.
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...
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.
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.)
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
Apparently the flu can trigger it too.
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-ad...
I haven't, but I am now! Thank you for the suggestion
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.
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.
They probably knew about it, but not about strict keto diet.
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.
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.
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.
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.
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.
To put it bluntly: You don’t understand it.
Type 1 is different from Type 2.
A Type 1 person without insulin will die.
“I will see that in someone with 0 percent insulin production, they’ll begin to fall ill within 12 to 24 hours after their last insulin injection, depending on its duration of effect. Within 24 to 48 hours, they’ll be in DKA. Beyond that, mortal outcomes would likely occur within days to perhaps a week or two. But I could not see someone surviving much longer than that.”
https://www.healthline.com/diabetesmine/ask-dmine-lifespan-s...
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.
99% TIR... that's crazy. Well done. You're an inspiration!
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!
This sounds interesting, which basal insulin do you use?
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.
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.
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...
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.
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.
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.
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?
100kg+. It's a joke :)
I see. And won't weight loss help in even Type 1? Is it not a valid argument?
It will help, definitely! As will exercise itself etc. It is a valid argument and the doctor is right.
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.
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.
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.
(2024)? We're still in 2024, aren't we? (@dang)
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?
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).
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.
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.
There ARE licenced closed loop systems for blood glucose/insulin management out there. As always - $€£
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??
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.
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.
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.
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).
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.
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.
Your experience underscores the importance of user-centered design in medical devices
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.
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!
My wife is T1D and she is really scared about the idea of moving to a closed loop system with a pump, but her endo is constantly pushing her towards it even though she is keeping her A1C at like ~6% with her Dexcom CGM.
The concern is the the G7 CGM seems to have times where it is so wildly off with readings that a closed loop system could kill her. This weekend the CGM was saying she was all the sudden at 40, but she was at about 115. I am scared to think what would happen in the night if the closed loop system thought it needed to raise her blood sugar... Logically I know it wouldnt raise it to a point that would cause medical harm, it would still put it higher than would be ideal for her health.
Maybe there are differences between the different brands, but the G7 from Dexcom's big selling point was "no more calibrations" and the FDA approval for that tagline, and we've been seeing a need to calibrate more than the G6, which is disappointing. Granted... sample size of n=1 so...
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.
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.
I find that a lot of medical research literature is like this. A couple of "X is associated with increased mortality" papers that make no attempt at a causal analysis is enough to get doctors to recommend against X.
As far as I can tell, the organizations that make these recommendations don't want to run the risk that maybe the relationship is causal, and moreover don't know all the mediating/moderating factors and so can't safely recommend something that is associated with harming people even if they realize it's not necessarily causal.
The inverse is true for positive outcomes. Y is associated with lower mortality, so we recommend Y, even though we don't understand if it's causal or not. But we do not recommend Z which is closely similar to Y and, if there is a causal connection would share a common causal pathway with the Y benefit, because we have only studied Y and not Z.
It's a weird kind of extreme causal reasoning that ironically leads to a kind of abandonment of causal reasoning.
This is definitely at least one contributing factor to the situation. But another one is that many medics sadly refuse to learn from a patient. Even when the patient is an expert in practice.
A cure for these kinds of issues in medicine and in software engineering is humility. We must understand our knowledge is incomplete. Our learnings are often the best that circumstances allowed us to learn, but not the best one could learn.
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...
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
Please share more.
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.
n++
Dr. Bernstein's book is a must read for every diabetic person. His YouTube channel: https://www.youtube.com/channel/UCuJ11OJynsvHMsN48LG18Ag
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:
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.
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
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.
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.
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.
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.
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.
The author can simply use the adjoint method to estimate their personal parameters, no?
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.
Incredibly motivating to read.
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?
The pdf here:
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
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.
In the US, my experience has largely been that it's not healthcare, it's sickcare. Wait until sick, get treated. Annual checkups are a weight check, blood pressure, a few questions, maybe a blood panel if you're lucky, and then a "you look great see you next year", aka, come back when you're sick.
I spent the last few years seeking proactive healthcare and the "system" is very much stacked against you. If you're fortunate enough to have the resources to push through, you can get all sorts of stuff done -- broader blood panels, body scans (eg. Prenuvo), VO2 max, metals tests, mold tests, genetic tests, GI tests, etc etc. But these are luxuries and if you ask most doctors, you'll get back "you look great why would you do that?", aka, come back when you're sick.
A friend of mine in the middle east says you can do all that for almost nothing by walking into any hospital, but it's subsidized by government (oil) dollars.
[edit] Reading more of the comments this seems par for the course in many "wealthy" countries.
None of those things are necessary most of the time, and they’re usually just going to make you paranoid. It’s why doctors don’t generally like to do full-body scans on healthy people: they’re rarely going to find anything clinically significant, but they’re often going to find something that causes a scare and some unnecessary tests. (And if the scan is a CT scan, on average, the radiation may cause more cancers than it catches if you’re scanning healthy people for no reason.)
If you want to have the best shot at preventing disease and living a long, healthy life, it’s not complicated: eat a healthy diet, exercise, get a good night’s sleep, avoid drugs and alcohol, and have fulfilling relationships with other people. Beyond that, you’re spending a lot of money on things that are going to have a negligible or even negative impact on your health and quality of life.
Understanding the results does take education, I agree with that, but having more data over time seems much better than flying blind and then being surprised when something actually does happen.
If getting that extra data imposes a risk (eg. radiation) then the tradeoff is not so simple.
ya agree there. but most of those things aren't tradeoffs, aside from a bit of time and money (both of which go back to my original point about why I think the system is not working)
People in high risk categories are warranted to go further than that
I did a CT scan recently for something unrelated which found some soft tissue lesion in the thymus. Cue doctors trying to tell me that I should just remove the thymus since it's not possible to do a biopsy and anyway the thymus is useless. Read recent research in NJEM that shows that removing the thymus increases risks of getting cancer and that it's anything but benign.
Eventually, I did a PET scan, got second opinions (that think it's most likely hyperplasia), determined that given the result of the PET scan, I don't have carcinoma or anything that is likely to be fast progressing. So, I won't operate, I will do regular MRIs to check the progress and monitor that it's not anything.
All this to say, that yes, having that result mostly caused additional stress for something that is actually likely to have already been there for years and years.
Proactive tests are great! Except for the false positive challenge. If the test has a 99% accuracy and it detects a problem that presents in 0.1% (1 in 1000) of general population, do you have the issue? Should you do something about it?
Well it turns out you only have a 3% (my math is likely imperfect) chance of actually having the thing you tested for unless you also have other symptoms. Now what do you do about it? Unnecessary medical interventions kill people all the time.
Prostate cancer is a great example here. If you’re over 30 and male, you very likely have a little bit of detectable prostate cancer. But you’re fine just leaving it alone for another 30 years and there’s a huge likelihood it’s never going to become a problem at all. Getting it fixed would be way worse for you than leaving it alone. (1 in 8 men eventually gets diagnosed with this meaning way more actually have it)
It's funny that we only apply this "more data = bad" logic to things that aren't readily visible.
If you have a palpable or visible likely-benign condition that isn't causing symptoms, such as a mole, rash, or lump, every doctor will recommend getting that checked out. Most of the time it'll turn out to be completely innocuous, but you'll go to the doctor and they'll decide between it's fine, monitoring, invasive investigation, and urgent treatment.
Obviously if the test itself is invasive (e.g. has a dose of radiation) then that is something that needs to be compared against the potential benefit. I certainly would not have a preventative head CT scan.
However if we're talking about things like an MRI, urine/stool test, or even something like a blood panel that has extremely low risks for most apparently healthy people (I donate blood 6x a year anyway - why not take some of that and test it), then why is it so different to a skin check, besides the cost?
A test isn't always a binary 'you have X ' . Look at PSA screening for prostate cancer starting in your 40s is not recommended for that reason.
I'm aware but also not sure how that changes anything.
Say you're 40 and you get a positive PSA result, maybe that means your risk of having prostate cancer has gone from (for illustrative purposes) 0.1% to 2%. That means the next step is "what do you do to someone who has a 1 in 50 chance of having prostate cancer?", and the answer is almost certainly not a biopsy or anything majorly invasive. The answer might be a finger up the butt, an MRI, monitoring for symptoms, repeat the test in a year, etc.
The problem is that patients aren't used to handling these ambiguous results from tests because we don't do much routine testing, and doctors don't want to face the potential consequences for getting a positive test result and recommending against invasive treatment. However, in many cases, a test would still tell you something useful even if it won't directly be used to escalate to a more invasive test or treatment.
For example, if a routine blood test shows prediabetes (which has happened to a few people I know when having blood tests for unrelated matters), you won't get any treatment for it, but you may be referred to a dietician and have a fire lit up under your ass to make those lifestyle changes you've been putting off.
the test isn't the problem, it's that doctors and patients aren't used to making decisions based on probability (patients demand something must be done, while doctors run on vibes and cover your ass)
(context: spent some time working in a prostate cancer research lab and have doctors in the family)
This isn't my experience. Every time I've gone in for an annual check, the doctor has either suggested that I get or asked if I would like a blood panel. Maybe you should try another doctor.
I don't know why you would expect the healthcare system to do all of that stuff. If you want to know your VO2 Max you can just go to the local running track and execute a Cooper Test for free. But the results aren't really actionable. Regardless of the quantitative result, unless you're already an elite athlete the prescription will always be the same: exercise more.
Do you really need VO2 max test to tell you that you get out breath climbing a set of stairs? What genetic tests are you even talking about( brca ? ).
Is there any actual proof that "catching cancer early" has any long term impact on survival ? ppl can go waste their money if they really want for entertainment but I don't suggest burdening public healthcare with voodoo science.
What do we want them to do. They are not going to come to your my home and switch out your burger and fries with a salad.
I don't get where this notion that you need to go to doctor to keep yourself healthy even comes from. Its not a secret how to be healthy.
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.
Their work hours are no longer than anyone else, their pay is way above the average, and their liability is as low as possible.
My doctor spends it explaining to me how I should just not care that something is wrong and accept that the medical industry is too incompetent to figure out what it is and that there are people who have worse problems, even though he has no idea what is actually wrong.
YMMV but as a software developer I am certainly not going to start throwing stones in a glass house. :)
Also consider additional time and cost of a doctor completing their education while working up to a max of 80h per week, which would be illegal for any reasonable profession.
I'm not sure why the educational requirements are so extreme for all doctors. Certainly for some, like surgeons, I get it, but for my GP I think it's a total farce. I don't make the rules though, I just can see a broken system when it's right in front of me.
Not sure how it is outside the US, but subscribing nurse-practitioners (requires just 2 additional years after a nursing degree) have been quickly replacing GP docs in the US for this reason. They'll send you to a specialist just like a GP would. It's all the same problems in terms of the underlying model, but the financial and time costs to the system are lower.
I'm not totally sold on what I'm selling though. My spouse has been a nurse practitioner for over 10 years; she had the option of becoming an MD but picked that route because she saw the grueling 80+ hr work weeks of older doctor friends and decided it wasn't for her. Unfortunately, she's still stuck with only 20 minutes for sometimes extremely complex patients that require a great deal of research and follow-through outside of work hours, and the extra slack in the system that is provided by her lower wages has just gone to hiring additional administrative middlemen that are seldom capable of actually filling in the gap, whether for reasons of liability, knowledge, skill, or motivation. These positions exist to try and ease the pressure on docs just like NPs exist to ease the pressure on docs, but it doesn't work because at the end of the day you need someone who can hold the liability (both legal and moral) and the knowledge (the correct diagnosis and the correct plan of action) within the same person.
Just like in software, where throwing more developers at a problem doesn't guarantee your problem gets solved more efficiently, for much the same reason. You need somebody who understands the domain, understands the tools, understands the business framework, and is ready to take responsibility for solving the problem. Each additional person introduces information overhead that makes each one of those tasks more complicated.
I have absolutely no idea of what's involved when working as a GP/consultant, so I probably grossly underestimate their job, but in my interaction with them (involving my health as well as my family's) most of them seem to just put your case into a flowchart and prescribe along, because that's what reduces the liability to 0 and works most of the time. But if that's their job, they'll eventually be replaced by LLMs.
When you don't fall into the typical case, you'll have to go through retelling the whole story to all the flowchart ones (easily 80%) only to find along the way snake oil salesmen (10%), honest "I can't take your case" individuals (5%), and the 1-5% which actually feel like scientists and problem solvers.
(percentages pulled out of my rear but that's roughly my experience)
The best sources I can find indicate that doctors work ~25% more hours than other workers, on average, though this has declined since the 70s.
https://www.ajpmonline.org/article/S0749-3797(23)00166-6/ful...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2915438/
I don't live in the US so the stat is not really relevant.
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.
Doctors burning-out is probably the worse red-flag you could have for a health system. It's frightening to think the person diagnosing my parents and children might not be in full possession of their capacity or make rash decisions.
I'm seeing the same pattern for many crucial functions having been pushed over the line during the last two decades or so. Whether it's a doctor, a teacher, a nurse, a childminder, the police, etc. All the jobs that are essential for a developed society have crumbled down to the point I'd discourage any young person to pursue a career in that sector.
If that worries you (and it should), never ever go to hospital during night (unless serious emergency of course) or very early morning, or generally just before the end of shifts. You will get potentially worse treatment by definition, depends on many things but probability is against you.
Also, the bigger the hospital usually the better experts they have on critical stuff (and more chance you won't wait long for ie CT or MRI), smaller hospitals and clinics just forward serious patients to big ones.
At the end healthcare is just another branch of market and all woes that apply to rest of us apply to them, no magical immunity due to more noble profession.
To be fair, most people probably are hypochondriacs. Somehow we have come to expect that all our nagging ailments should be fully treatable by either a pill or a surgery. In reality, human body is pretty good at self-repairing and self-regulating and modern medicine can help it only in certain clear cut cases. Medicine is just not that good and the doctors know it.
I'm certain in the sample of patients most GPs see, hypochondriacs are overrepresented, but that really does not in any way eliminate the problems I experience, so from my point of view it's still a real concern.
Health anxiety high enough to prompt doctor visits is itself a serious issue that the medical system fails to help with.
Agree - most of the advice is WebMD level.
Anything outside the check list leaves them scratching their head. They’re terrible debuggers.
I had early high blood pressure since high school. Four blood pressure medications, one being a diuretic. Signs of edema.
It’s not like my condition required any complicated diagnostics. I met the checklist.
5 cardiologists 2 nephrologists in my lifetime. Nothing but more pills for treatment. Over two decades.
I had to be the one to research and then ask to see an endocrinologist because I thought it might be hyperaldosteronism. They were dismissive when I asked but reluctantly made the referral.
Yes, it was unilateral hyperaldosteronism. Had my left adrenal gland removed because of it.
And now my BP is much more stable. I still take a couple of BP drugs, but in smaller doses. And my BP is much more normal and stable.
No more wild, 3am ER visits where my BP was 200/120. And I lost about 15 lbs of water weight.
If have long lived resistant hypertension, please ask to see an endocrinologist to get screened for hyperaldosteronism.
In reality, there are few things a GP can do better than a nurse or some technician with an LLM, and the sooner that shift happens, the better for society.
Something similar, u just switched to private clinic where i pay 500euros/year for general doctor(even when they work for insurance) and I pay like 100E for specialist. Never happier, fast and good communication.