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Taking my diabetes treatment into my own hands (janiczek.cz)
485 points by mjaniczek 12 months ago | hide | past | favorite | 356 comments



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.


Honestly, as a society we should be able to guarantee most if not all of those. Every single one of them is an economic trade-off and when you put for profit companies in the loop, it’s obvious that they will prioritize their profits.

The system is for profit by choice, it is under our control as society to guarantee that list or not, and we have chosen not to.

Might be the right or wrong decision, that’s up to each of you, but denying it’s has been chosen it’s very naive


It's beyond economic trade-off. You're talking about full perfect control over people's behaviours.

> That things that are legal to put in your body will not cause irreparable harm to you

You can get water intoxication by literally drinking too much clean water. How are you going to get anywhere close to controlling that?

> That your medical professional knows what they are talking about

You just lost all medical staff, because they're people and people make mistakes. Even when they don't, people are extremely fuzzy puzzles and we don't have enough tests available to do precise diagnosis of lots of things.


The challenge with medicine, if one is dealing with a known condition, there's a known intervention. And Any number of simple and straightforward tests will make it easy.

It's with the unknown conditions, that doesn't fall into the mental flow chart of a medical professional's mental model are SOL.

The real answer to most folk's chronic conditions are lifestyle interventions, but of course, medical professionals most difficult challenge is ensuring compliance. The only tools available for a medical professional to a patient is to beg, plead, threaten, yell, discuss the interventions till they are blue in the face, but unfortunately, you can lead a horse to water, but can't force them to drink.

The elephant in the room that no one wants to admit is that a lot of health issues are both self-inflicted through lifestyle choices, and it creates an negative feedback loop of demand for professionals to be able to truly have more time to care for the patients that truly need help.


> You can get water intoxication by literally drinking too much clean water.

This is such a disingenuous response. It's clear that you are attempting to engage in bad faith here, so no response is necessary.


I think a decent number of them are non-economic statements, particularly the motives for doctors, insurance, and interests.

>The system is for profit by choice, it is under our control as society to guarantee that list or not, and we have chosen not to.

The system is for profit by choice, because most people care about themselves. It would very hard to make your doctor care more about your life than theirs, or care about your kids more than their kids.

You can institute harsh criminal penalties for doctors like some suggest in this thread, but even then, they are still putting themselves first.

Im not sure I'm "denying" any choice. Im just stating how it is. I have no doubt the world would be different if people chose different - which is a tautological claim.


> Everything beyond nothing is an imperfect and unstable solution held together with duct-tape.

What a depressing worldview... :(


I dont think it is depressing. I think it is marvelous and a testament to human engineering, perseverance, and collective spirit that we hold things together.

As I said down thread, it is something to be grateful for, given that we are always one major catastrophe away from robbing and killing each other in the street.

While sure, things could be better, I think it is overly cynical to consider the status quo garbage. If you wanna see some real garbage, go to Haiti, Donetsk, or Liberia and report back about US society isnt "good and just".


I'd challenge you to attack it logically on it's merits. I think parent poster is obvipusly right, civilization exists on a precipice at all times. The natural state of the universe is toward entropy.

That's not to say we can't make it better, just that we should have no illusions about its stability.


Lots of folks on the internet misunderstand entropy.


> 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.


I almost completely agree, and think we mainly disagree on the nuances.

>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.

The first thing I wanted to touch on is the idea of grift. Just because some has their interests ahead of yours doesn't mean they are a grifter. I think the childish view is the expectation that other people put your interests above their own, like the selflessness of a loving parent. A doctor doesnt put your individual wellbeing above their own, but that doesnt make them a grifter or a bad person. Expecting that kind of selflessness is entirely unrealistic, and is what causes cognitive dissonance when it clashes with reality. Thats not to say that grifters dont exist, who actively manipulate and deceive, but simply having unrealistic expectations for something does not make it a grift.

One example would when a doctor doesn't provide the depth of care and consideration the patient wants or would expect from a selfless caregiver. Most people come to the realization that they need to provide the drive and motivation for their own care, and doctors are just hired experts to help with things you cant do. You have to manage them and tell them what you want them to do. If you dont manage them like hired help, they will do very little indeed.

>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.

I didnt mean to say that everyone is an island and forever alone. I mean that these things are not guaranteed entitlements, but conditional on human relations, standing, and mutual exchange. That is to say, they took work to maintain and were subject to constant scrutiny and mutual consent. Even in a tribe, goods and services were not provided unconditionally as some human birthright associated with tribal membership. Instead, they were conditional on good standing and mutual consent.

>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.

Im not arguing that beneficial institutions and functional societies are beyond human ability. Im saying their existence should not be taken for granted.


The quality of the American medical system has deteriorated to such a point that if the Doctors are not the grifters they may at least be culpable for enabling the grift.


That hasn't been my experience. I have never experienced or heard of a doctor deceiving or lying in real life. I dont think I can think of an example from hospitals either.


I've had dentists discover that I needed a filling after they found out how good my dental insurance was. Their justification was that the tooth seemed "soft". They never took an X-ray or provide any other data than that.


Do you think they lied and completely made it up? If so, I hope you refused to buy the filling.


I don't know, but in hindsight I would have asked for an X-Ray. I think it was a borderline call and they went on the side of doing it because I had good insurance.


I don't see anything wrong or nefarious with deciding a borderline call based on ability to pay.

Better preventative medicine and proactive treatment is one of the perks of having good insurance, so I would expect a recommendation from a good dentist to take it into account.

Ideally there is some discussion, but at the same time, the idea that someone with great insurance would want to use it seems a reasonable assumption.


> I have never experienced or heard of a doctor deceiving or lying in real life.

Meet Dr. Stella Immanuel who tells her patients that medications are made from alien DNA and that their illnesses are caused by demon sperm. In the USA she gets to keep her medical license/practice. (https://en.wikipedia.org/wiki/Stella_Immanuel)

See also: every doctor that accepted bribes from Purdue Pharma in exchange for knowingly prescribing excessive amounts of opioids to people who never needed them.


I included real life as an intentional qualifier. I know that quacks, grifters, and criminals exist.

The fact that they exist doesn't bother me. Some will always exist. What matters is how common it is and what the average experience is.

I don't think most doctors treat their patients the same as Stella Immanuel. Same for the two doctors that perdue was convicted of bribing


Half of all doctors in the US accept money or gifts from drug and device companies. (https://www.statnews.com/2020/12/04/drug-companies-payments-...)


I actually really liked that article and how it at least tried to present both sides. However, I tend to agree with the opposing side, but think there are some edge cases that could be improved. I have spent my career working in drug and device development so I probably have a more nuanced view informed by my experience. I have payed millions to doctors, and think my actions are justified.

One thing that the article touched on that I like is the role of non-industry associations, which I think could do a lot more to spread information. However, there's no one that will pay them to do it.


> I have payed millions to doctors, and think my actions are justified.

You aren't at all worried that paying those doctors will result in them prescribing something to a patient when they might not have otherwise or influence their choice for one option over another? I'm not talking about the education or awareness a doctor might get, purely the influence of the money/benefits and perhaps their hope to get more of the same from you later.


The vast majority of the payments are either education or payment for services rendered, like the article mentions.

At a high level, companies actually think their products have value to patients and want doctors to know about what it can do. It is virtually impossible to decouple knowledge sharing from influence. The point of knowledge sharing is to impact choice and behavior.

On the services front, If I want to hire a doctor to fly across the country and do Brian surgery on a pig or cadaver, I expect to have to pay them. Similarly, if they are running a clinical trial, I expect to fly them to the surgical training and feed them, and pay for their time.

>purely the influence of the money/benefits and perhaps their hope to get more of the same from you later.

Direct kickbacks for prescriptions are a thing of the past. It is pretty hard to come up with a situation where future benefits is conditional on the behavior. Like, I suppose you wouldn't invite a doctor that doesnt use your product to give feedback on it or be part of a clinical trial, but that is a niche feedback to worry about.

Lastly, articles like are very misleading when it comes to the details. In their reference for $2B in payments [1], includes things like Royalties.

>The greatest proportion (27.3%) of value was from royalty or license payments (≈$484 million of $1.8 billion) followed by service fees (26.6%), such as faculty lectures ($472 million of $1.8 billion).

If they are claiming paying royalty or license payments for inventions (like developing a hip implant) are a kickback, it frames the whole argument as rhetoric.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5470350/


I’ve found the “collective common knowledge” regarding pop-culture topics such as this, is much like generals preparing for the last war they fought.

Direct kickbacks were an actual problem decades ago. That has long been “solved” all the way to the typical over correction the industry is known for.

The same holds true for the opioid epidemic and folks still thinking pill mills and the medical industry as a whole are the primary way folks get hooked.

It’s fighting last decades battles that have long since moved on. The zeitgeist seems to “stick” each generation and does not seem to keep up with current reality.


yes. Conflating Perdue Pharma/OxyContin with the larger opiate epidemic is a particularly egregious example.

Perdue engaged in criminal actions, but it did not cause the epidemic. It is just a small part of the story. Deceitful labeling and aggressive marketing of OxyContin in the 90's has zero bearing on people dying from fentanyl laced weed in 2024.

I think the biggest factor in all of this misinformation is a human desire to compress the complexity of life into simple soundbite narratives that make sense.

The more emotionally charged or pressing an issue is, the greater the human desire is to think/feel like they have it all figured out. Even if that means sacrificing truth.

Humans have a compulsion to categorize and explain everything they encounter. Failure to do so is cognitively painful so anything too difficult is simplified until it "makes sense".

In my opinion, this compulsion is at the heart of all human problems, but also all of our achievements.


My dental surgeon refuses to design or install an implant. They will only put in the screw for the implant.

Why? Because of a pyramid scheme.

That might not be a direct "lie," but it is misleading. Doctors mislead constantly. They tend to accept norms that are harmful because they are systems outside of their control.


I think there is a conflation occurring between harm and sub-optimal behavior (from your perspective). Is the doctor harmful or simply less helpful than you would like?

Would you be better off with no dental work or healthcare? Zero harm is being done in this case IMO.

If Im alone in the desert dying, I dont think others are harming me for my lack of water and food. That is simple neutrality and indifference.


I don't think you understand what a pyramid scheme is. There are some unethical providers who optimize for their own profit rather than the patient's best interests but those are a small minority. And it is entirely normal to separate implant design from installation; those things take different skills and equipment.


There are a large number of cardiologists who advocate patients for invasive surgeries they don't require so that they can make a bit more money.


Work with one and you’ll see. Many are burnt out, it’s not even malice just indifference. Little lies here and there. Adds up.


I love when I am arguing with someone who I secretly agree with. I appreciate your response.

> A doctor doesnt put your individual wellbeing above their own

I think an example we could both agree on, would be something like...let's say you have several indicators that you might have a type of cancer. But the doctor will say, well let's not do a whole biopsy, because it's expensive and it's not covered by your insurance, and there's a low chance you have this cancer anyway. That might seem like a sensible conclusion to draw, but actually if we were simply caring for every person in a real way, like we would wish to be taken care of individually, we would do that biopsy anyway, because the alternative is death.

Now to draw a parallel to ancient tribes as I was doing earlier, the resources of the tribe dictates the care each tribe member can have. Okay. But we live in one of the most abundant eras in the history of the world. And, strikingly, we also have insane wealth inequality. So what I am positing here is that the default resource allocation for you is much lower than you might assume. People are going to make cost-cutting decisions that impact you greatly. And the only resort is for you is to manage your own health. Not that you SHOULDN'T manage your own health anyway, but this cost cutting resource allocation acts as a kind of betrayal. Things being "held together by duct-tape" is not the vision that children are raised with. We don't assume we are still in a period of being "left behind by the herd" because of how great everything is. But in fact, you will realize, when you see someone deny treatment for their advanced cancer due to finances and "the odds of survival" that in fact, you can be left behind by the herd. And the more you look into the way the healthcare system is structured, you realize that there really is no herd at all. At every step you are paying for help from someone who, in many instances, could care less.

What I am also saying is blatantly that these people make mistakes and sometimes do not care. And there is little recourse for that. Which isn't a point that you addressed, but anyway.

> Instead, they were conditional on good standing and mutual consent.

And this good standing has been converted to currency. Which is a much more isolated and cut throat version of good standing. In many ways it is more unfair. And what you don't realize as a kid is also how EXPENSIVE this "good standing" actually is. To receive the benefits of the technological state we purport to be in you usually have to be upper-class. The poor are often much closer to being completely alone. As if no society exists for them at all.

> Im saying their existence should not be taken for granted.

I, on the other hand, think that they don't go far enough. They aren't good enough. I'm actually not so sure what is being "taken for granted" in a for profit system, I pay every fucking dime of it. I am not impressed with its state.


responding a little out of order

>And this good standing has been converted to currency. Which is a much more isolated and cut throat version of good standing. In many ways it is more unfair. And what you don't realize as a kid is also how EXPENSIVE this "good standing" actually is. To receive the benefits of the technological state we purport to be in you usually have to be upper-class. The poor are often much closer to being completely alone. As if no society exists for them at all

I think this is a supper interesting observation, and a useful way for viewing this whole thing. At some point, people did rely on social currency and their personal memory of interactions to know if someone is "credit worthy".

I'm not sure that it was more "fair" than the hard numerical of financial currency, but I agree that social currencies could have been more forgiving. With social currency, you could go into debt with someone, and start fresh with someone new. The financial currencies, debt/assets follows people through their lives, and even across generations.

Yes, poor people are by parts of society who find they have little to offer. Poor people are free to associate with each other, but often have little use for eachother as well. This

>We don't assume we are still in a period of being "left behind by the herd" because of how great everything is. But in fact, you will realize, when you see someone deny treatment for their advanced cancer due to finances and "the odds of survival" that in fact, you can be left behind by the herd. And the more

I see how that could be jarring realization. If someone thought they had an equal ownership of social wealth, and equal say over the direction of the herd, it would be devastating to learn that it was all a lie at the last minute when it actually matters. I think many people were grifted by those who told them this would be the case, by people who were stating an aspiration as fact, and hoping that enough lies would make it true. Society has a little bit of compassion, but not nearly as much as some want and act as if it does. I do think it is sad and cruel that many people were indoctrinated with this false expectation. It set them up to live their lives thinking the world is a cruel and malicious place, when it is simply indifferent.

>I, on the other hand, think that they don't go far enough. They aren't good enough. I'm actually not so sure what is being "taken for granted" in a for profit system, I pay every fucking dime of it. I am not impressed with its state.

When I say "taken for granted", I mean the little compassion the society and the herd does have, and it is not guaranteed that it stay this way. In fact, it could very easily be much worse, and there are place with no compassion or welfare. There are places even worse than that, without decent rule of law, where being dangerous means you can take what you want or buy and sell humans for their commodity value.

Thats not to say that you cant want and advocate for something better than the current state. Im not sure what you mean by you pay for every dime of it. Is your ideal system one where you dont have to compensate others for what you take?


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.


> with YMMV caveat to go along with it

Isn't it suspicious to offer YMMV caveats in a situation that is obviously dripping with caveats?


I find communities that constantly add gratuitous "YMMV may vary - everyone's body is different and no one really knows anything" tend to have less groupthink and are generally more adaptable both to new research and old research. The "YMMV" should be obvious in any discussion about individual humans, but when communities don't emphasize it constantly, people start thinking that "90% of patients benefit from $INTERVENTION" somehow means that they should just shut down discussion around the other 10%.


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.


What types of things do you put into your 5 color smoothie?


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.


> you can't even take for granted that your own parents act in your best interest

Or they're delusional and legitimately believe the nonsense they're up to (insert your personal childhood gripe here) is in your best interest.


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.


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 don't mind point one, and it can be improved in many ways. AI being a huge one.

Point two, though, is just an example of how preventive medicine is forgone due to its cost. The system doctor's use to share data could also stand massive improvements.


Regardless of how good AI clinical decision support models are, they're still garbage in / garbage out. The hard part of diagnosis is gathering all of the signs and symptoms that might potentially be relevant and AI can't help with that.

Cost is only one of several factors for forgoing preventive medicine. Many preventive services haven't been proven effective, or carry a risk of iatrogenic harm. And the healthcare system overall only has a limited capacity which is difficult to increase for a variety of complex reasons, so delivering preventive care to one patient may reducing access for other patients who already have medical conditions.

There are a limited set of preventive care services which most US health plans must cover at no cost to the patient because they have been proven to be net beneficial.

https://www.healthcare.gov/coverage/preventive-care-benefits...

If you think that more preventive medicine should be covered then you can submit public comments to the task force responsible for writing the requirements.

https://www.uspreventiveservicestaskforce.org/


If you think doctors can be overly stubborn to change once they've made an initial diagnosis .... you're going to be very unhappy with an AI diagnosis model. As one of many tools, I can see some value. But I'd hate if there was no way to at least try to convince an actual doctor that my issue might be something less expected.


One of the first things I did when GPT 3.5 came out was to give it some medical symptoms I had when I was a teenager that was wildly diagnosed by my primary care doctor that I finally (at least partially) figured out by doing my own research 10 years later.

It nailed what tests I should have done one the first try, one of which I still need to get done because my current primary care doctor doesn’t know how to run it and an endocrinologist straight up refused in the past. However, one of the other two tests suggested would have led to my quality of life improving to such a great extent I would be living a completely different life right now.

I had really, really bad fatigue and we had noticed my shoe size was shrinking as well. The doctor, who is now president of the clinic itself, diagnosed it as depression. The shoe size thing was explained as my arches maybe getting taller. As it turned out, I also lost 2 inches of height as well but I don’t know if we had noticed that at that point yet, but I’m willing to bet it was being charted.


You're likely as old as my kid, so I am sad to see this. Yes, take your health into your own hands. Medicate as little as possible - but this won't work for many people - in fact it could be dangerous. I am lucky to not have chronic conditions so I could afford not to believe my medical professional.

In my case - just to get the facts on Blood pressure took quite a bit of digging - thanks to some independent doctors who went against the grain and had a conscience and courage to dissent. Cholesterol is an even murkier pool. Its amazing how muddled the picture is.


Any idea how to remove the most common pollutants we run into everyday? I try to avoid high VOC materials and use charcoal filters for water. Kinda lazy to set up reverse osmosis system right now.


1) You're pretty much just screwed unless you're both very wealthy and make this topic your primary hobby/past-time. To really answer this you'd need to do an incredible amount of testing. Like buy 10 of everything you're considering and send off to labs for $100,000 of tests. Or install a million dollars of chemical air quality monitors in and around your home.

2) Large activated carbon air scrubbers. For air filtration you really need not just HEPA particulate filters, but robust VOC capture. The tiny bit of activated carbon in things like a Winix C535 or Coway Mega/AirMega really don't clean much. Instead, consider something like buying two 10"-12" carbon scrubbers from https://terra-bloom.com and get a matching size of their in-line "Silenced Ultra Quiet EC Fan". You can just stack these three items together and it forms a tall but not horribly ugly appliance that doesn't take up much floor space. You'd probably need to replace the filters once a year, and have quite a few around a normal-sized house, just like standalone HEPA filters (which you'd also probably still want as well).

3) Wash everything often - bedding, clothes, carpets, floors, walls, appliances, etc. Obviously, attempt to use a soap that won't add additional pollutants. Wash them twice, once with soap then again without soap.

4) Time. Assuming similar materials, something that is 5 years old should have already leeched out a lot of the chemicals which are going to off-gas/transfer/leech from it. So the polluting rate of something 5 years old that's been washed 50 times and already worn and broken in should be assumed to be lower than an identical, new, version of the same thing.


Outside of switching things up like using glass containers, enabling the body to detoxify itself and repair itself by ensuring that it gets adequate nutrition (daily) and exercise is the key.

But for a simple pill solution, consume sulfur. For as important as it is, it's not widely front of mind in the health space. So much focus on Vit D, Magnesium, Omega 3s, etc, which are all absolutely necessary.

Some great sources of pill based sulfur are Taurine, NAC, and MSM (methylsulfonylmethionine). My preference to recommend blindly as a general pill is MSM. But sulfur is key for the liver's detoxification functions to work ideally.

There's quotes flying around that say something like: 80% of the population (US or world) is deficient in X.

Usually X is omega 3's, Magnesium, Vit D, and also to add to the list, Sulfur is a huge one. Outside of being in a culture like Koreans that consume cruciferous veggies 3x/day (via kimchi), most americans only get it from meat, garlic, onions and broccoli. If one has brittle nails or hair doesn't grow as quickly, that would be the sign that something like MSM in pill form would be helpful. Otherwise, folks are probably fine if they are consuming daily amounts of anything containing sulfur.


You can always trust people to act in their own self interest, everything else (including your list) can be proven from that first principle.


And this makes for a pretty lonely and downright harmful society, when viewed through that lens.

And I'm not going to feel stupid or naive for feeling like children are tricked into believing the opposite is true.

I want to also say, this state that everyone is acting in their self interest is not something we should promote, or be proud of, or assume is the natural state of things. It is a state that we are being forced into, and we are being convinced to accept.

People as individuals are actually very good. And if we were to get over a few little logical fallacies, we could extend that goodness onto our whole society. But there are many reasons why that is considered harmful by some in power, and then many more who are propagandized into agreeing with them.


Being good and working in your own self interest aren't mutually exclusive though. In fact most of good things are genuinely done out of complete self interest, and practically all good things on the corporate or bureaucratic level. There's always someone involved in the decision who directly benefits, luckily sometimes it's all/most of us too. Society gets better when the self interested goals of an individual are aligned best with the majority of people (e.g. why presidents are on average better than kings).

To give a very active example, Zuckerberg isn't throwing billions into making ML models and then giving them out for free out of some sense of cosmic right, he's doing so to eliminate competition and further Meta's goals of making more money. But since his actions align with what most of us want, i.e. open source models, it's all seen as a relatively good thing. There is no such thing as "objective good" in nature, there's just how actions influence the person doing the moralizing.

Every living being on earth is hardwired to do two things first and foremost: survive, and make sure its species survives. The ones that weren't are simply no longer around. Helping others is ultimately something you do out of self interest, since you benefit from it indirectly. It is absolutely the natural state of things.


> Being good and working in your own self interest aren't mutually exclusive though.

Being good and selfish/doing whatever is in your own self interest no matter who else gets hurt are mutually exclusive. The reason we can't trust the food we eat is because companies are selfish and don't care that you get sick. They'll feed you poison because even though they already have billions in profits, it makes them a few extra cents every time they do. That's where we're at, and allowing it to continue isn't the natural state of things.


A company only cares about money, always have, always will. The way you make them care about their actions is by taking away their money, it's all pretty simple.

The monetary damage from bad PR when caught clearly isn't enough, but when you have regulators like the EU who impose massive fines as a percentage of gross revenue, suddenly every company becomes super careful about what they do. And those regulations are there because it's in the selfish self interest of the electorate to not get poisoned :)

We don't live in the natural world, we bend it to our will. By recognizing what's the default we can leverage that to improve on it more effectively. If you know a bad person will do bad things, you can plan for it and make sure nobody gets hurt. Pretending a bad man isn't bad is just optimistic delusion and why libertarianism doesn't work in real life.


Children aren't tricked into believing it because it's actually true. As you point out, people are inherently good, and they act against their self-interest all the time. It's always a mistake though. ;D


It's important to separate objective self interest (knowing all the facts combined with perfect reasoning) and subjective self interest (based on limited and likely misleading data, with possibly faulty reasoning). The first one will obviously not be true for the most part and is usually only knowable in retrospect, but aside from some amount of purely random decisions, the rest will largely fall in the second group, if only subconsciously. But I'd argue it's still the same exact principle :P


That is the literal definition of cynicism.


Quite right, even the broader philosophical definition of "cynicism rejects all conventional desires for wealth, power, glory, social recognition, conformity" fits perfectly with my views. I am a cynic in every sense of the word :)

Ahem, I meant to say: This but unironically.


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.

https://news.ycombinator.com/newsguidelines.html


There is nothing political about what I said.


> 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.

This is political. You are extremely clearly dog-whistling to the "government needs to reform healthcare" and "America bad" groups. Precisely zero people use this kind of hyper-charged, content-less language without a political agenda.


I think that's a fair bit of stretch


You are wrong. People do not say things like

> 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.

on HN without a political agenda.


Can you please elaborate on what the political activism in the above comment is?


The long list of statements carefully chosen to maximize emotion with minimal information transfer, followed by

> 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.

...which is a clearly political call for "someone to do something", using extremely emotionally charged language with zero (negative?) utility such as "pardon me for being propagandized at a very young age that we lived in a country that was good and just".


Sadly very true. Makes you wonder why we have big government.


Like, it behooves one to know enough about one's car or house or computer in order to not get scammed/idiot-screwed by mechanics and contractors and tech support

It would be surprising if one's body were different. The general level of faith there seems inconsistent with reality


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.


Sumo wrestlers kind of fascinate me in this regard. It's very rare to find a professional who is diabetic, even though they eat one big carb-heavy meal a day and are morbidly obese. IIRC, this is explained by their low visceral fat levels, which are driven by high adiponectin levels that are themselves driven by their intense workouts and consistent sleep habits. Their high subcutaneous fat proportion is actually thought to be protective. T2D catches up to them after they retire and stop exercising and sleeping well.

Their experience touches on 3 factors:

>Exercise volume (which, according to newer research, should be spread out over the course of the day)

>Diet (which should be focused not just on maintaining steady, low blood sugar levels, but on dietary factors that encourage subcutaneous rather than visceral fat deposition)

>Sleep quality

The last, I think, is extremely undervalued. My father developed T2 in his 30s, and it progressed consistently until he was diagnosed with sleep apnea and received treatment. Around the same time, his work schedule finally became more reasonable after a career of early mornings and late nights. This is someone who had to pass annual physical fitness exams for his job, cooked and ate relatively healthily, etc. I'm convinced it was the years of poor sleep that set him up for insulin resistance.


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...


Other researchers have also achieved T2D remission in many patients through nutritional ketosis (carbohydrate restriction).

https://doi.org/10.1007/s13300-018-0373-9


And here I am following a WFPB diet with high carbs and reversing my A1C + some other markers.

My philosophy is that many diets work, you just can not have a cocktail. Our body is not a hybrid car. It takes time to switch/

Choose what you can live with - high carb, low carb, keto - and stay focused.


There is of course substantial variability in individual patient response to treatments. But a high-carb diet is unlikely to work out well for someone who is already insulin resistant. If that's the only diet that they can live with then their life is likely to be drastically shortened.

As for plant based versus animal based diets, we don't have any high quality RCTs to indicate that one or the other has a different impact on insulin resistance (assuming the same macros). So that's unlikely to be directly relevant for most patients, except to the extent that it impacts ease of living permanently maintaining carb restriction.


Sure but 1) there are many of us who are helped by WFPB and 2) Whole Foods plant based != plant based. High carbs was just my paraphrasing of what we do - lots of greens, lots of raw, elimination of meat, oil and sugar. And a bunch of other things. And while it helps reverse a few things, I agree it may not work in some or many scenarios.


I'm WFPB (plus salmon and eggs) myself. I grew up as a vegetarian and the carnivore diet is too unpalatable to me, even though it would probably work. WFPB can work to stave off T2D, but at least for me, I have to be vigilant about my choices and always pair carbs with proteins and fats.


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).


I like to add that the reason why the carnivore diet seems to work really well is a couple of things.

- compliance is straightforward

- on average, will tick all the boxes for nutritional needs. (ie. vegans eating only oreos would not be very healthy, while vegans eating 5 colors a day would be far better off)


What have you used as a source for low oxalate foods? My husband has to avoid them for the same reason but it seems like superficially reliable sources disagree on which foods to avoid.


Sounds like a good way to trade one problem for another.


Which is why I went paleo after 2.5 months minus oxalates. I honestly have concerns about stomach cancer (family tree) and it allowed my to substitute coconut oil for a lot of the animal based fat I needed to consume for those 2.5 months. It is hard to do 20% of your calories in animal fat (male) and 30% (female) to maintain hormone levels. I don't know if those are hard and fast rules but they were the generic guidelines given to my by my PA.


Which problem?


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.


I was diagnosed with T2 last year, and started a CGM (Freestyle Libre 3) like you did. I started off with lists of foods I could eat, but the monitor let me see actual data on what was happening. Its not very accurate, but the absolute numbers don't matter as much as seeing the actual trend effect on my own body. I never let it go over 150, ever. I can eat some legumes in moderation, but your specific body may be different. I initially took Metformin, but discontinued. My last A1C was 5.1 and and endocrinologist I was consulting with put in his notes that my diabetes is "remission." So, if you're prediabetic, keep at what you're doing. I eat very little meat, btw, so while that might work for some people, its not strictly necessary.


Is it conclusively proven that glucose spikes influence the risk of T2D by a big margin? Like imo calorie balance is more influential than glucose spike. This is all assuming that you are currently healthy. I don't think spiking blood glucose is a good idea of you are diabetic


There is no conclusive proof that occasional blood glucose spikes by themselves significantly increase the risk of T2D. In particular we know that the stress hormones produced during high intensity exercise cause temporary spikes by stimulating glucose release from the liver. But we have fairly good evidence that such exercise actually decreases the risk of T2D. Insulin resistance seems to be triggered more by chronic elevation of blood glucose and not clearing the spikes quickly enough.


I already mentioned some of this in another response, but I'll include it here as well: you can take measures to not have to take medication / insulin if you have type 2 diabetes. The number one thing to avoid it is to stay lean and not be over-weight, but some other things which can greatly help out:

- Exercise: 'Exercise plays a major role in the prevention and control of insulin resistance, prediabetes, GDM, type 2 diabetes, and diabetes-related health complications. Both aerobic and resistance training improve insulin action, at least acutely, and can assist with the management of BG levels, lipids, BP, CV risk, mortality, and QOL, but exercise must be undertaken regularly to have continued benefits and likely include regular training of varying types. ' - Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2992225/

- Intermittent fasting: there's great evidence that IF (intermittent fasting) can put it in remission: https://www.endocrine.org/news-and-advocacy/news-room/2022/i...

- Minimally processed and ketogenic diet: avoid foods which have sugar or high-fructose corn-syrup and mostly stick to low-glycemic index minimally processed foods. 'Diets with a high glycaemic index and a high glycaemic load were associated with a higher risk of incident type 2 diabetes in a multinational cohort spanning five continents. Our findings suggest that consuming low glycaemic index and low glycaemic load diets might prevent the development of type 2 diabetes.' - Source: https://www.thelancet.com/journals/landia/article/PIIS2213-8...

- Take a teaspoon with turmeric + black-pepper daily: 'Clinical trials and preclinical research have recently produced compelling data to demonstrate the crucial functions of curcumin against T2DM via several routes. Accordingly, this review systematically summarizes the antidiabetic activity of curcumin, along with various mechanisms. Results showed that effectiveness of curcumin on T2DM is due to it being anti-inflammatory, anti-oxidant, anti-hyperglycemic, anti-apoptotic, anti-hyperlipidemia and other activities. In light of these results, curcumin may be a promising prevention/treatment choice for T2DM.' - Source: https://www.preprints.org/manuscript/202404.1926/v1


>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.


I was talking to my physical therapist this morning about my experience with the recent exercises he'd given me, and I pulled up my Garmin workout calendar to show him my inconsistency. He'd told me to do a particular stretch every 3 hours or 6x/day, and I'd been having several days a week where I'd only completed the routine 4 or 5 times.

He said that level of consistency was fantastic, that at least a third of his patients flat-out told him they hadn't done any of the exercises at all, another third showed no improvements above baseline and he suspected they had lied about it, and the remainder had moderate compliance. When he'd told me 6x/day, he was anticipating 2x on the high end. We adjusted to 4x/day, where morning, lunch break, after work, and before bed were easier habits to stick to than trying to drop and do press-ups in the middle of my 9:00 meetings.

And that's at a sports and fitness-focused PT organization, not an average general practitioner working with median diets and advising a society that by default trends towards diabetes.


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


The world needs more mad scientists.


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.


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...

https://www.bbc.com/news/uk-england-birmingham-64938278


Those are junior doctors on dirt pay. Consultants earn up to £95k a year.


You were specifically criticising "younger diabetes nurses and doctors". Bear in mind also - part of the reason trainees and nurses have such poor pay (and far more importantly, awful suicide inducing hours and conditions cross nationally), is a rigidly hierarchical system where consultants who were themselves overworked and underpaid themselves see this as a right of passage.


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?


> The starting salary for a first-year doctor is below the national median income

Is it really that low?

In the USA an entry level doctor will make around $130,000 and the 'Average doctor' makes $200-$350,000/year depending on what website you want to believe.

And we're running like 13% of the population having diabetes.


Median wage in England is about £35k and a first year doctor gets £32k. https://www.standard.co.uk/news/uk/junior-doctors-earnings-s...


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.


>The starting salary for a first-year doctor is below the national median income

Here you are comparing a doctor at the start of their career with a population consisting mostly of workers with decades of experience.


Diabetes consultants can earn salaries up to £95k. Far from what junior doctors earn.


My diabetes consultant is on more than the national median income and only works part time in a low cost of living area of the UK. They are far from hard done by. Throwing money at them will not change what is effectively a systemic error in how they approach the disease.

The NHS is underfunded, but this isn't a problem of funding. The lack of a scientific approach to managing diabetes is strictly down to ineptitude.


> 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.

Mind providing some sources for this? Rather tired of hearing this unfounded conspiracy theory from people

> Maybe more funding will fix it?

Where does the money come from?


Tax the rich? Close to 100 billionaires live in London I've read.


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.


This was my experience when I was first diagnosed, too (minus closed loop - it was the early 90's). They put more effort in with children, as it's a dedicated team. Same as gestational diabetes care.

Expect to start having appointments cancelled and to go years without hearing from them once she is passed to the adult diabetes team.


What is it that Camaps + dexcom doesn't do that you want?


> 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."


'...diabetes healthcare in the UK is effectively non-existent past diagnosis.'

I was referred to a dedicated team with a specialist nurse who checks in with me regularly. Maybe I am fortunate not to live in a big city where most NHS facilities seem to have descended into third world standards?


I think it depends where in the UK you are, as I believe different areas healthcare is run differently. This has not been my experience, I've found the care to be good, as long as I'm willing to put in the work on my side and be proactive on occasion about looking for help. In my local area the diabetic team is stretched thinly (that's what the staff said to me themselves) and I am relatively proactive with reaching out, research and asking questions. With that said they really want me to succeed in keeping in a healthy range and have been a massive support as much as they can. Also the fact I don't have to pay for Insulin or my CGM is something I am really thankful for. Threats of criminal punishments for lazy medical professionals doesn't sound like a good fix to be honest.


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.


I've had 4 consultants over the past 10 years. The first, who was forward thinking and kept up with the latest in the field, helped me acquire an insulin pump. Sadly, I had to transfer clinics when I moved across the country and have never had another consultant that helpful.


Are you receiving your tech for free from NHS?


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.


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.


It will be interesting when LLMs can do more to advance general public health more than the entire medical system in recent history.


What do you think that LLMs can do exactly? Sometimes naive technologists think of AI as some sort of magic solution. But if you look at overall healthcare system costs, very little is being spent in areas that could be easily automated with an LLM.

And for T1D specifically it would be very dangerous to put an LLM in control of something like an insulin pump considering that we don't have any way to do quality assurance to the level required. Simple, deterministic algorithms are preferred for safety critical systems because they're less likely to fail in bizarre or unpredictable ways.


When I was self diagnosing, my Google queries were simplistic.

E.g.

resistant hypertension many medications

Which led me to a couple of research articles about pheochromocytomas and a Washington Post article about someone with high blood pressure on a "bucketload of medications".

e.g. https://www.washingtonpost.com/health/2022/04/23/high-blood-...

If the LLM can provide a sample Google-like analysis, data points that my 7 specialty doctors missed, that's an improvement.


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.


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.


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


Sure, but most people are by definition not high risk.


> 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.

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?


> 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.

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)


>Annual checkups are a weight check, blood pressure, a few questions, maybe a blood panel if you're lucky

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.


In my experience, a blood panel doesn't cover everything typically. My A1C, Insulin, and fasting Glucose levels are all within normal range, but actually I have insulin resistance, likely genetic that wouldn't appear in my general panel for at least two or three more decades. This is common in people whose family history includes poverty or subsistence farming. I'm glad I have the resources to address this while I'm still a young professional with no children of my own to manage and full healthcare benefits including out-of-network, but I had to find my own specialists to investigate what was going on with me.


Why would a genetic tendency towards insulin resistance be correlated with a family history of poverty or subsistence farming? Is there any research on that? Which specific genes are involved? Which tests were used to diagnose your insulin resistance?


I don't know the details. This was just something that I was informed after I was speaking to a specialist about a separate issue at a world-class medical campus, who happened to also be studying the effects of insulin on the thing I was actually there to get examined and after some testing and calculations that are more used in research than clinicals.


Given the context an epigenetic factor is also plausible.


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.


Are you exercising enough or do you need to exercise more is an actionable question worth asking.


Enough for what? It's kind of a meaningless question. Unless you're already an elite athlete training 30+ hours per week, you could always benefit from doing more.


Absolutely untrue. There is such a thing as overtraining, having to eat a lot of food to make up for the energy expenditure from exercise, time constraints vs health goals, etc etc etc.


> broader blood panels, body scans (eg. Prenuvo), VO2 max, metals tests, mold tests, genetic tests, GI tests, etc etc.

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.

> 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.

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.


Are you asking if early detection of cancer results in better outcomes? Yes, the data unequivocally supports that diagnosing cancer before it spreads leads to lower mortality.


That’s only true if it’s actually a cancer that’s going to spread. Certain things like benign prostate cancer are often not worth treating. Testing everyone for everything leads to overtreatment and anxiety and worse quality of life.


I see the distinction. Thank you for clarifying. I think generally speaking I would prefer to have more data on my health. I don't like the idea that this information might be held back because it would make me "paranoid". That is my decision.

I can see that in the general case, it can lead to increased spending and worse outcomes.


> I don't like the idea that this information might be held back because it would make me "paranoid". That is my decision.

Yea you can get prenuvo or a psa test by paying out of pocket. No one is holding anything back from anyone. I got a PSA test out of pocket for $60 at quest ( family history of PC) .


Yes I put those in quotes because that's how Prenuvo sells their product to the public. If fullbody scans truly improve survival then they wouldn't need kim kardashian to sell their product.


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.


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.


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.


> My experience is that GPs are over-worked, under paid (given their responsibilities

Their work hours are no longer than anyone else, their pay is way above the average, and their liability is as low as possible.

> and can only afford to do shallow diagnostic in the 5-10 minutes they've got per patient.

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.


> Their work hours are no longer than anyone else, their pay is way above the average, and their liability is as low as possible.

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.


> > Their work hours are no longer than anyone else, their pay is way above the average, and their liability is as low as possible.

> YMMV but as a software developer I am certainly not going to start throwing stones in a glass house. :)

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)


> 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.


Excellent article in Bloomberg on this subject: https://www.bloomberg.com/news/features/2024-07-24/is-the-nu... (non-paywall'd link: https://archive.ph/03f4u) -- not the standard r/noctor drivel, but a well-researched and sources cited article exploring this phenomenon. Not discussed in the article is the phenomenon of more unnecessary testing with less trained providers doing the ordering which has downstream effects of cost and overdiagnosis.

I agree with a lot of the critiques of our healthcare system and as an emergency department doctor share them, but I doubt LLMs or NPs are going to fix our system. I also have a lot of concerns about broader societal trends in looking for pathologies / diagnoses in ourselves to justify or validate not feeling "well", repeatedly asking for more and more tests or self-identifying with a nebulous diagnosis and then incorporating that into identity as one who is perpetually sick. Particularly with younger generation, this is a really big issue and I don't see it getting better.


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.


It’s all vibes! Type 1 here for 28 years.

You are on the right path here but I think you are missing the “big players” for lack of a better term. The prediction software available now (open source) is quite good and works with different types of CGMS and pumps. You are really going to want to look at Loop.

Loop basically collects the inputs in the app automatically for insulin if you use a pump. I’m on the Omnipod DASH and Loop works with a few, Omnipod being my favorite. You can also input injections. It can also collect CGMS data automatically from that system. It works with Dexcom and others (I think Libre). You manually input carbs, and you are still gonna do that based on VIBES. After that, you get these magic prediction lines that show you where you are headed. And with the pump, it can add or lower insulin amounts (closed loop mode) to keep you in range. Pretty common to be 75-90% in range!

Check it out:

https://github.com/LoopKit/Loop https://www.loopnlearn.org/


Please share more


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.


I understand the entire comment and it literally could not be about anything other than managing diabetes.


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.


Please share more


>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


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.


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).


Interesting, last time I looked at it, it was early alpha or something, a few years ago.

I wonder how the mobile support is.


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)


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.


If it is adapted, by most people, which is not, because the company internal software graveyard calls for these frameworks


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.


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'.


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?


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!


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.


Thanks that's great context! I don't think I've been out as long in similarly harsh conditions.

I always carry plenty of backups, usually duplicates, because CGM sensors can fall off and it happens that I screw up the insertion, so having at least one is good. Also I always carry some old-style sticks with me as backup.

To prevent freezing/overheating of insulin, I'd probably pop some vials into a small thermos filled with room temperature water. Just dropping into a bottle of water is also better than leaving exposed to air.


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.)


It's just a response to the constant frustration of feeling limited, especially by something arbitrary. If I got told randomly that now every single family gathering, social event, date, drink with the boys, exercise routine, and road trip must circle around a chronic health condition that I must make conscious decisions around every day all day for the rest of my life, it makes total sense for me to occasionally go "fuck it".


I understand (as much as I can) that it must be very frustrating, as you outline. However, the post I was asking the question of sounded a step or two beyond occasionally saying "fuck it" (which we all do, I suspect, whatever out motivation for health conscious behavior):

> 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.

Maybe I'm over-interpreting a single line of text on an internet forum, but this sounds like more of a policy than an occasional lapse.


Eat anything I want, as in not limit myself to keto / low-sugar?


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.


Hey fellow T1D, this is good stuff. As a tip, I’d recommend taking your daily insulin dose, splitting it in half and doing twice daily. It helped me quite a bit in dealing with the inconsistency of it all. I personally inject around midnight and noon if I can remember.

Also, if you have an android phone (I have a separate android exclusively for CGM use), there are open source apps that can connect to Libre 3 sensors and let you export data in several formats[0]. You can even connect it to home assistant if you’re into that. It would be really great to have these app readings integrated into your simulation.

Can’t wait to see where this project goes!

[0] - https://github.com/j-kaltes/Juggluco


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.


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.


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.


It's metabolic dysfunction at its core.

Optimizing the electron transport chain via supplements like CoQ10 (Ubiquinol more bioavailable), Benfotiamine (b1 form), Nicotinamide Riboside (b3 form) are extremely helpful.

That's the reason why metformin works so well for diabetes, and has longevity extension effects, because of how it stimulates the AMPK pathway, which is also anti-inflammatory (thus lowering oxidative stress).

We can reframe a TON of chronic conditions under the umbrella of mitochondrial dysfunction, whether it's ME/CFS, T2 diabetes, anxiety, depression, and addressing the mitochondrial dysfunction tends to be extremely helpful, if not able to bring the conditions into remission.

The problem though is that addressing mitochondrial dysfunction requires a multi-pronged approach with a lot of disruptive lifestyle interventions, which makes the activation cost for such things a hump that the average person will not be able to get over unless they have enough privilege to do so.


Please share more. This is the first time I heard of mitochondrial dysfunction. The more I read and research, the more I see this type of pattern: A host of similar diseases claimed to be caused by a very fundamental process in the body, which is only malfunctioning due to the modern lifestyle. Many of those stuff are backed by research.


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

https://garytaubes.com/rethinking-diabetes/


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.


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.


Thanks for your perspective, and congrats on the lookout to not even take meds anymore. Yea didn't want to imply that the ketogenic diet would work for everybody with T2. And I can see how you'd say you'll always be T2 as you will want to keep watching your diet even if you didn't take medication 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.

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...


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/


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.


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 don't find the Medtronic solution to be that off. But the closed loop solution can't raise your blood sugar, it can only lower it. It only has insulin which it can dial back or increase. The real danger would be if it detected you very high and then tried to rapidly decrease it.

The FDA approved systems do have safeties in there that alarm persistent highs or on any lows. They also won't provide more basal than a multiple of the pre-configured setting you have.

The biggest thing for me was the 780G alarms less than 680G when there is nothing that I actually want to do to change it. Waking up all the damn time is no fun.


Ahh you are right, I had the situation reversed in my head. It would be the false high reading that would be the issue.

That is good to know there are some safeguards in place to prevent an over-correction.

And I agree about the constant wake-ups. The Dexcom system will sometimes not stop alerting when it detects a low, even if she has taken glucose tabs and knows it will be taken care of. If she doesnt interact with the notification it continues to alarm every 15 minutes or so. There is a recompiled APK for the dexcom apps that changes some of the notification behaviors but she hasnt needed to use that recently.


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!


I recently worked for a company called Tandem Diabetes which has multiple closed loop, FDA-regulated systems going back 9 years:

"In July 2014, Tandem announced that it had submitted a PMA for the t:slim G4 insulin pump, which integrated t:slim Pump technology with the Dexcom G4 Platinum CGM System. This device was approved by the FDA in September 2015."

https://en.wikipedia.org/wiki/Tandem_Diabetes_Care

We were still working on international support when I left last year. As you can imagine, there are quite a few regulatory hurdles esp. regarding patient data portability and access.


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.


Thanks for clarifying. I can see that's what he meant now.


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.


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 - $€£


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.


The doctors didn't tell you to cut all the carbs you can and went straight to "take insulin until it's low enough goodbye"??? That's fucking wild, I couldn't make it seconds into being diagnosed type 2 with an A1C of ~20% without being bombarded about diet to the point I almost couldn't get any information besides "change your diet and try metformin and we'll see what other options make sense once we know that impact". I can see why the doctors had not been pushing tirzepatide in that timeline though, in the timeline "mounjaro started to get a lot of attention" was really "mounjaro was approved as safe to treat diabetes with by the FDA".

Insulin can "cause" weight gain because having diabetes means your cells stopped absorbing the sugar from your blood properly. "Fixing" the diabetes with insulin means your cells start absorbing the energy you eat like they are supposed to, which means gaining weight again if input > output energy. On the other hand metformin and tirzepatide are also effective as weight loss drugs + lowering carb intake prevented the root problem that was "causes" weight gain with insulin in the first place.

I'm hoping I can lower my metformin dosage this next checkup as well, fingers crossed.


Super glad you found this solution and Mounjaro was helpful. These drugs are all explicitly for T2D so it's surprising it wasn't suggested to you.


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.


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.


I didn't mean 'requires no insulin at all,' I know T1D requires some insulin to regulate blood sugar and to perform other functions in the body.

What I meant was that, for example in the OP article, a 60g bolus of carbs brings blood sugar from the bottom of healthy range all the way to the top of the healthy range in one go.

It just seems like an unnecessarily large and (for most) difficult to control jump in blood sugar. A lower-carb diet, say under 50g total carbs per day, should reduce blood sugar swings and increase their controllability, letting patients be in the healthy range of blood sugar for a higher percentage of the day.


In general yes, but again, unfortunately there are a lot of complicating factors. I can eat meals with 60g carb content and have my blood sugar levels barely move at all and I can also have, for instance, a beer with 15-20g of carbs that causes a 6 to 8 point rise. The trickiest part for me is finding the right balance between not having a massive meal peak, but also having stable levels in between meals. What works best for me personally is eating 'slow' meals i.e. meals that have a low glycemic index. These don't necessarily have to be low on carbs, but should be high in fiber, protein and unsaturated fats, which again is also very personal since each of our guts responds differently resulting in different rates of blood sugar production for different meals.

The problem with just eating low carb meals in my case is generally that it offsets the balance in between meals, i.e. I'll start seeing a consistent rise that might be something like 0.5-1 point per hour which eventually adds up. Of course you could increase your baseline insulin to offset that again, but it requires a lot of experimentation to get that balance right.

I do occasionally switch out my somewhat carb heavy lunch for a lighter low carb meal if I'm really busy and don't have time to go for a walk for instance. Generally that does work just fine to keep the initial rise low, but requires another 2 units of insulin about 2.5 hours after the meal because my blood sugar level keeps rising.

So in short, yes moderating your carb intake and especially ensuring your meals are slow are ways to make managing your blood sugar levels easier, but in my opinion it still requires experimentation to find out what works or does not work for you personally.


Type 1 diabetic as well here - I do this and I can confirm that I have much better control over my HB1C (average blood sugar reading) since I eat mostly a keto and plant based healthy diet (composed of minimally processed foods). One issue that I have though deals with hypoglycemia (low-blood sugar levels) since type 1 diabetics don't just require immediate insulin after meals - they require long-term acting insulin which works throughout the day. I've had multiple cases where I lost consciousness and woke up either in an ambulance or in a hospital feeling like someone hit me with a truck and having no recollection of how I got there. There is no 'magic' in managing type 1 diabetes unfortunately. The issue with us is that our blood sugar can swing in both directions - with the lower swing possibly resulting in death.


> 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...


99% TIR... that's crazy. Well done. You're an inspiration!


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.


A little tangential to the discussion and anecdotal, but I hope this can generate some discussion.

I've found different types of exercise affects my insulin response differently. I have T1D, had it for a little over 20 years. I've noticed that high-intensity short-duration exercises (hill climbs on/off bikes, burpees) have me requiring noticeably lesser insulin (both basal and bolus) for the same carb/calorie intake. This effect lasts for a couple of days, before gradually reverting back. I'm fairly active and play a few sports every other day for about an hour or two at the most, but none of them (in isolation), except for soccer, have shown similar effects.

Another curious effect I've noticed is great sleep (>= 8 hours) and managing my stress levels (which goes hand in hand with sleep quality) helps increase insulin sensitivity even further, but not overly so if I haven't been active over the previous few days.

Have any other T1Ds noticed something similar?


I'm a Type 1 diabetic living the United States and my experiences have been a bit different.

> This is called “closed loop” or “artificial pancreas”, and getting one officially is very hard or impossible: not FDA approved yet / you need to be part of an university study to get one / … It’s one of those things that “will be here in 5 years”, they say every year for the past 30 years.

These exist now. I've had one for a few years now. Medtronic 670G.

> My treatment is usually: keep the Freestyle Libre app on my phone open as much as possible and when I see my BG’s getting high, I inject a small amount of insulin. How much? No idea. IT’S ALL VIBES.

Your correction factor is

CF = 100 / (Total Daily Dose).

To make a correction you do

Additional insulin to administer = (current blood glucose - target blood glucose) / CF

Now, even after doing this you'll still have blood sugar spikes and dips but this should get you most of the way there when combined with diet and exercise with very little "vibes" involved.


> CF = 100 / (Total Daily Dose).

do you have a citation? that lines up close enough with my factors but I’ve never seen the formula stated that way and would like to learn more.


I think I first learned this from my endocrinologist. Anyway, this is a good guide:

https://www.mountsinai.on.ca/care/lscd/sweet-talk-1/what2019...


It's kind of sad how slow some technology progresses. 10 years ago, I thought that by now we'd have self-powered machines which can manufacture insulin inside the body or replace essentially any organ.

It's crazy that we still can't replicate biological processes. Literally a peace of meat can do this stuff but we can't replicate it.

As a software dev, I feel like the industry has slowed to a crawl. Most of the jobs are about building gimmicky software as part of some weird corporate acquisition scheme. There are very few jobs available to build real useful stuff. Those jobs involve taking risks... But private equity firms don't see the point of taking on risks when they can just as easily get risk-free profits.

I find the risk-aversion of private equity firms very weird because at their scale, with their finances, you'd think they could make a large number of risky bets and get relatively predictable results but that's not what they're doing. The alternative approach I'm suggesting clearly works; just look at what happened when companies started investing in AI. The level of risk in that case was off the charts, yet clearly, even that bet paid off. The productivity gains of recent AI innovation are broad and obvious. Why isn't this approach the standard?

If incentives are the issue, we need to reform the socio-economic system to align incentives to prioritize useful innovation. Remove perverse incentives which reward useless schemes. Encourage broad bets, prioritize technical skill. Funding should be easily accessible to skilled tech people and shouldn't be based on social connections or arbitrary metrics of past financial success.

Technical success and financial success rarely align these days because technological alignment with financial schemes is the main determinant of financial success in the tech industry.

A lot of innovation is brushed under the rug. Useful innovations which could have provided a solid foundation to build upon are completely deprived of funding. Almost every useful innovation becomes a dead end.


The cell organelles are a bit smaller than microelectronics that we can make with photolithography, aren't they?

https://en.wikipedia.org/wiki/Orders_of_magnitude_(length)#1...

Even though that chart lists semiconductor process nodes as down in the single-digit nanometers, the articles about the semiconductor fabrication say that these are marketing terms and don't refer to the size of actual features produced by the fabrication process, which are apparently an order of magnitude larger or so.

So you could say cells are still doing some incredibly small-scale (yet voluminous) manufacturing, in a wet environment, such that we couldn't directly manufacture devices like that even if we understood all the details of how they work!


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.


I disabled all the alarms on my libre 2 (which incidentally is why I won’t be going to the 3). Doing so explicitly puts the responsibility back on me where it was all along.


Your experience underscores the importance of user-centered design in medical devices


> 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...


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.


Type 1 here. I also agree. With comment above. I have two thoughts that may be valuable for you.

1) You can do an extended pre-bolus before you eat. This gives you a chance the cancel the remaining insulin dose if you learn your meal will change for any reason n-minutes before or during your meal. Maybe the meal unexpectedly tastes bad, you can cancel the remaining insulin. Maybe the restaurant tells you they are out of the dish you order n-minutes ago. This is called different names in various insulin pumps; Extended bolus, temp basal, etc.

2) Pre-bolus and eat AFTER you see your blood glucose decrease for 3-4 readings. Pre-bolusing for static time like 15 minutes before eating does not work consistently because there are lots of variables at play before you eat that directly affect (a) insulin sensitivity and (b) blood glucose. (Environmental temperature, insulin temperature, injection site, adrenaline, stress, pain, previous meals, lipid levels, exercise, medications, illness, to name a few).

Eating after I see my BG decrease for at least three consecutive readings has helped me stay in range (70-140) for 95-100% of the time and maintain a healthy A1C (less than 5).

Cheers!


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?


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/


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.


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!!


Same here, or more often I'll just wait to start eating if it comes early. I was selfconsious about it at first but staying in range is more important to me than any awquard feeling saying "please start, I just need to wait a few minutes", no one ever makes a fuss.


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?


Fantastic post. Great job Martin Janiczek! Fellow T1D here. Please keep posting because it is useful and interesting! I am a programmer and more glad to help you in any way with databases, SQL, Python, R, C#.

Resources that helped me achieve excellent control of my type 1 diabetes. My TIR is 95-100% and lowered my A1C from 11.9 to 4.1 (not low carb, I’m high carb in fact):

Fat and protein in meals require insulin 1-2 hours after eating via extend bolus (aka temp basal). Learn how to post-bolus (give yourself insulin AFTER meals) “Fat-Protein Units” (FPU).

Fat x .09 x 8 ÷ I:C = units of insulin Protein x .04 x 8 ÷ I:C = units of insulin

Sum both. Then dose insulin as a temp basal (extended bolus) over n-hours per the Warsaw Method time schedule linked below.

And continue to pre-bolus for carbs like usual 15-30 minutes before you eat (data driven approach is pre-bolus and eat meal AFTER blood glucose values on CGM trend down for 3-4 consecutive readings)

https://waltzingthedragon.ca/diabetes/nutrition-excercise/re...

https://drlogy.com/calculator/warsaw-method

Starting point to determine your insulin-to-carbohydrate ratio: 300 ÷ Total Daily Insulin Dose = 1 unit insulin covers n-grams of carbohydrate

https://diabetesjournals.org/diabetes/article/68/Supplement_...

Two books: https://www.amazon.com/Think-Like-Pancreas-Practical-Insulin...

https://www.amazon.com/gp/aw/d/0593542045/ref=tmm_pap_swatch...

One podcast: https://www.juiceboxpodcast.com/diabetesprotip


Howdy! My startup involves tons of glucose simulation, and I'd be happy to show you what you need to do to get more realistic parameter modelling based on your actual real world data, if you like! Just drop me an email :)


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%)


> very high genetic factor with 90% of identical twins both having T2DM

Or both not having it, I hope?


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.


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.


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.


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...


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.


Not a dumb question. You are damn near guaranteed to get type 1 diabetes if you test positive for two or more T1D autoantibodies and/or your A1C is 5.7 or higher. Both can happen before you show any symptoms of T1D.

Get blood test for all five Type 1 Diabetes Autoantibodies: (this can be done for free) GADA IA-2A IAA ZnT8A ICA

Get blood test for pancreatic C-peptide.

Get blood test for A1C.

Check out tzield if you test positive.

I can share sources if you’re interested. I’m. T1D.


I can't answer this question for you, but some life-style factors which I think will help you avoid getting it are provided below:

- 5-10g of vitamin D daily (assuming you're talking about type 1 diabetes) - type 1 diabetes is an auto-immune disease, and vitamin D plays a huge role in regulating our immune systems. In fact, type 1 diabetes is more prevalent for those who move from warmer countries to colder ones where there's less sunlight that those who do the opposite.

- Exercise: probably the single best thing you can do for your brain and body, and does a wonder in regulating the immune system and helps out many with not just diabetes, but with a ton of other disorders and the higher intensity the exercise, the better. Exercise which increases your VO(2) max here is the best - both strength training and interval training are highly effective.

- Intermittent fasting (and staying lean): assuming that you're attempting to avoid type 2 diabetes, there's great evidence that IF (intermittent fasting) can put it in remission: https://www.endocrine.org/news-and-advocacy/news-room/2022/i...

- Minimally processed and ketogenic diet: avoid foods which have sugar or high-fructose corn-syrup on the ingredients list. In fact, in my case, I try to avoid any foods with more than 5 ingredients and try to stick to mostly a plant based and keto diet (this definitely helps with type 2 diabetes). Also avoid high-glycemic index foods (high-glycemic here means ability to 'spike' sugar and you can find the glycemic index of most foods through a simple good search. More info on this index: https://en.wikipedia.org/wiki/Glycemic_index ).

- Take a teaspoon with turmeric + black-pepper daily: 'Clinical trials and preclinical research have recently produced compelling data to demonstrate the crucial functions of curcumin against T2DM via several routes. Accordingly, this review systematically summarizes the antidiabetic activity of curcumin, along with various mechanisms. Results showed that effectiveness of curcumin on T2DM is due to it being anti-inflammatory, anti-oxidant, anti-hyperglycemic, anti-apoptotic, anti-hyperlipidemia and other activities. In light of these results, curcumin may be a promising prevention/treatment choice for T2DM.' - Source: https://www.preprints.org/manuscript/202404.1926/v1


> 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.


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.


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.


They probably knew about it, but not about strict keto diet.


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.


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.


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.


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


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


Adult-onset being common is actually why they stopped calling it “juvenile diabetes” and now call it “Type 1 diabetes”.


Apparently the flu can trigger it too.


Why does hypoglycemia happen in people with diabetes? Healthy people can stay active for weeks without food and for many years almost without dietary carbs (on just fats and proteins - see carnivore and keto diets). How comes gluconeogenesis from triglyceride glycerol and from amino acid fails to cover the essential glucose needs?


I think it’s simple: because they injected too much insuline at some point before the hypoglycemia;

Which obviously “never” happens to non-diabetics, because the pancreas regulates this automatically, adjusting to circumstances as required.


I suspect it happens because of your externally provided insulin (as in, you caused your hypoglycemia by injecting too much).

IDK if hypoglycemias happen naturally in T1Ds in situations where they don't in healthy people. I assume that eg. when exercising too much etc., even a healthy person would get a hypoglycemia?


> I assume that eg. when exercising too much etc., even a healthy person would get a hypoglycemia?

I doubt so. I tried water-fasting for a week while exercising a lot and felt great. Fatigue from jogging felt nonexistent as compared to normal (my normal endurance is pretty low). Resistance exercise muscle fatigue felt way stronger (low recovery rate) than normal yet apparently didn't affect the brain as I neither felt sleepy, nor moody nor intellectually impaired.


The previous commenters are correct. T1D here. Sorry for the book.

I think you are correct but you may be overstating the case when you say, "healthy people can stay active for weeks without food". Carbs, yes. But its worth noting that Zach Bitter, who holds records in ultra marathon emphasizes multi-modal fueling for lack of a better frame, i.e ketogenic leaning for fat burning and carbs when needed; not perfect ketogenic diet. As we like to say on HN, "dynamic at run-time".

Exogenous insulin is the root cause of most hypoglycemia in insulin-dependent diabetes. There are other causes but they are relatively minor. Exercise, alcohol. Most people do not exercise or drink in a focused enough way for those to be major causes of hypoglycemia in insulin populations.

Insulin is just another pill with dramatically worse side effects than an actual pill, except maybe macrodosing psychedelics instead of microdosing glucagon.

You are correct in your macro diet analysis, except that fasting and ketogenic approaches are far more complex in concert with exogenous insulin than most people realize. If you have an endocrinology or organic chemistry background, this may be worth a shot; but the biochem is complex.

The LSS of your last question is that you don't have discrete conscious control of gluconeogenesis or much else in metabolism because it is all driven by well-functioning hormonal changes in the autonomic nervous system.

Again, "dynamic at run-time". The dynamics of insulin, glucagon, exercise, and fasting are far too complex to make this a one and done, simple prescriptive approach.

It's unusual, but I've practiced these approaches for decades, much to the chagrin of my health care team. That team being highly educated and experienced know the statistical outcomes and they're not good.

There are numerous problems with these approaches in diabetic populations who may not have the genetic sensors which make these states survivable, i.e. not all humans can feel changes in glycemia so overdosing insulin is a daily challenge to survival.

CGMs are not a cure-all either since the veracity and failure rates are poor by medical device standards.

I should know. I've worn a continuous glucose monitor for more than five years including two CGMs concurrently the last few years. They work great for some people.

In my case, they're horribly inaccurate (off by hundreds of md/dl) and when I was wearing a closed loop insulin pump, they are root cause of both overdose and underdose states leading to damning hypo and hyper glycemia since the pump has no way of knowing it's being led astray. I'm sure this is covered in cybernetics, control theory 101, or the like. At least I hope so.

Some, like me, can feel the glycemic changes and this promotes survival. T1D without glycemic sense may be a death sentence because the path from consciousness to unconsciousness is quick and these states are frequently not survivable without immediate action or a world class ER trauma team.

There's a reason T1D is classified as a wicked problem, like COVID.

This is why nocturnal hypoglycemia is dangerous even for those who can feel glycemic changes. Trust me, after 50 years of playing this game nightly, I'm not kidding when I say it takes Goggins-levels of asceticism, compulsiveness, and self-care.

I believe it's worth R&D spending and a cohort like me who have the biomarkers for surviving these approaches, but n=1. There may be others but I've not interacted with them directly.

Here's a well-cited oldie but a goodie on the complexity of diabetes for the obsessively curious:

https://www.researchgate.net/profile/Philip-Cryer/publicatio...


Interesting read. It's crazy how artificial pancreas aren't yet broadly available. It seems like a big market and represents a big problem that people would be willing to pay substantial money to solve. Surely it's not that technically difficult.


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).


Treating your diabetes is surprisingly simple, actually; stop eating carbs and plants.


The problem is that he wants a plan that is not just simple, but also able to keep him alive.


It's both sad and funny that it comes as a surprise to you that the diet that humans have been thriving on for hundreds of thousands of years is able to keep someone alive, as opposed to the one that was brought about a hundred years ago and has only caused misery and ill health since.


I can’t tell if you actually know what type 1 diabetes is or not, but FYI it is not a condition caused or cured by diet and your recommendation would rapidly lead to a miserable death.


I had a very similar experience with eosenophilic esophogitis (EoE). It's an allergic reaction that causes your esophagus to constrict resulting in acute dysphagia (difficulty swallowing). It can get extremely unpleasant for me as well as anyone around me when an attack happens. The problem is that the latency between eating the food that triggers it and actual symptoms is many many hours, and the symptoms only appear if you happen to swallow something that's just a little too big, and by then it's too late. It was only by sheer luck that I managed to figure out what my trigger is (scallops). In order to be diagnosed you have to get an endoscopy, which is also the only indicated treatment (other than avoiding the trigger food if you can figure out what it is).

I had this idea of using gel caps to get a better read on my internal state because you can feel them going down but they don't actually get stuck (and even if they do they dissolve pretty quickly and don't cause too much discomfort). The idea is to have them in a variety of sizes, and to start with small ones and get bigger until you can feel one. That gives you much more fine-grained data which you can then correlate with what you've eaten the day before. Trick is, I can't find a source of placebo gel caps in assorted sizes anywhere. I can't even find a manufacturer to make them for me. Every manufacturer I've approach about this insists on having some active ingredient, and they also want minimum orders in the thousands of units.

The irony is that I would have no problem getting these on the market as homeopathic remedies of some sort.


I get empty gelcaps from amazon and local nutrition food stores. They cost like $5 for between 100-1000. You can get them in a wide variety of sizes, though you might have trouble if you're looking for something larger than size "000" (1cm diameter, 2.6cm length). Here is a size chart[0] (but there are cheaper sources for the gelcaps).

0: https://ibspot.com/products/capsuline-size-1-empty-capsules-...


Yeah I actually tried that but could not figure out an efficient way to fill them.


Would want a capsule filling tray. The opening of the large portions of the capsules are positioned at the same level as the flat surface so you can just pile up a bunch of sugar or starch or whatever and use a scraper to level it all off, then assemble the tops of each capsule.

https://www.pennherb.com/cap-m-quik-capsule-filler-F7B


You might get help from a compounding pharmacy if you can find one in your area.


FYI for any other EoE folks: Dupixent is now indicated for EoE. It’s resolved my symptoms completely (both the ones I notice and the ones my gastroenterologist checks via scope). I don’t experience any side effects.

It’s an off-label use, but swallowed fluticasone is also effective for many people. Also has no to minimal side effects. I did that for many years before dupixent was available.

Exciting that you figured out your trigger. I collected a lot of data and made a lot of graphs, but never found anything conclusive.

Great article. Taking control of your health via the tools we have as technical professionals is awesome.


> Dupixent is now indicated for EoE. It’s resolved my symptoms completely

How often does it need to be administered? Regular injections sounds like it might be more trouble than it's worth.


The indication for EoE is weekly, though I seem to be able to get away with every other week.

Dupixent is a subcutaneous auto-injector pen, so it’s the least-bad injection.

Injections definitely suck and everybody has to make their own trade-off assessment.

If you can’t figure out your triggers, and a lot of people can’t, it’s great that we have an effective therapy available now. It dramatically improved my life … once I got over injection anxiety


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.


The author can simply use the adjoint method to estimate their personal parameters, no?


Incredibly motivating to read.


Just get a Tandem T-Slim and Dexcom G7. My A1c went from 7.8 to 6.2.


>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.


(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).


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.


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.




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