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.
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.)
> 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.
> 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.
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.
> 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.
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.
The fat thing mentioned in the post: fat seems to slow down absorption in my experience, though not to the extreme that some self-described “body hackers” (who don’t have DM) seem to think.
I basically consider my malfunctioning pancreas to have been replaced/augmented by my brain, assisted by a cgm. My diet is rather boring but keeps me alive and keeps the BG in a pretty tight range.
My biggest problems are hypo (usually due to being in “flow” for long periods…bliss) and DKA (when I’m backpacking or on long bike rides, which my doctor recommends I not do, but I do anyway).
See, that's the thing. I've had T1D for 26 years now and I have stubbornly refused to accept that it's not a smart idea to eat anything I want. I am not going to give up hash browns until I lose a leg.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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).
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?
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.
Winforms lol, it just works and I don't have to spend most of my time trying to work out xaml stuff. Just add the components to the window, set up some event handlers, done
AvaloniaUI is nice and a commonly recommended choice nowadays if you are targeting desktop.
It is interesting that the author chose to use Elm to describe C# code. If it is their preference, they could have gotten all that with writing the "core" of the project with F#, without having to change examples neither in the actual implementation nor in the blog post (the author does mention F# but not whether they looked into using it).
Yeah, I do have some passing experience with both F# and C#, and since the example code provided by the university was in C#, I kept that code and built on it. But I would have felt better in F#.
(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)
... 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.
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.
Not a diabetic and I live in one of the richest countries with a social medical system, but the medical industry is an abject failure. My experience with most Doctors who are not surgeons has mostly been that are overpaid for doing essentially nothing and think all their patients are hypochondriacs.
I 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 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.
> 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.
> 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.
> > 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)
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.
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.
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".
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.
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.
> 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)
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)
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.
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.
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)
> 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.
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.
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) .
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.
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.
>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.
In my checks the calendar 15 years with the disease, I've thankfully only had a hypoglycemic coma once, at a summer camp. I was leading a bass guitar workshop and just suddenly started making less and less sense. It was the only time my blood sugar dropped so fast my brain didn't notice, didn't alert me to eat something, just went straight into being unusable.
Supposedly I laid down on a couch and passed out, which is when one of the kids at the workshop realized it's a similar symptom to what their grandpa had, and alerted a grown-up. I'm very glad there were people around me at that moment.
I woke up to a full bottle of cola and some bread rolls with Nutella being forced into me.
I wonder if the emergence of type 2 diabetes has had a negative effect. Many practitioners call it something like "fake diabetes" as it has very little in common with type 1. It's not uncommon to meet people who are "diabetic" today, but most of them are type 2, they don't need insulin and you probably won't have to save their life.
I‘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
I completely agree with the author. T1Ds must take care of themselves.
Doctors and nurses suffer from Dunning-Kruger massively. They will quite often be confidently incorrect. I’ve seen this living in large cities in the US and Europe. Or you can read about how medics often make potentially murderous decisions on diabetes treatment — there are plenty of stories. Humility is the cure. I say this as someone who went to medschool myself and I have a lot of respect for medics.
The most infuriating thing is when they say that diabetics just die in surgeries, but forget to mention that often the reason is medical negligence. Anyone who has had their T1D loved ones go through general anesthesia surgery knows some of the things doctors tend to suggest, like going off the pump for a number of hours with no insulin replacement. Or demanding significant diet changes just before the anesthesia with no insulin adjustment.
One doctor once told a patient I know their blood glucose is okay in the morning, so they don’t need to check before the general anesthesia surgery in the evening — the blood glucose only needs to be checked twice a day. I’m sure the care diagram in that hospital says that, but it’s with the assumption that the patient is conscious and actively managing blood glucose on their own.
Another way I agree with the author is about closed loops. Many T1Ds, I believe, cannot have adequate control with the “one basal pattern and set carb ratio boluses” approach. Much less with multiple daily injections. Their daily insulin needs just fluctuate too much for an appointment with the doctor or nurse once or twice a year for dose adjustment. If the patient has any sort of hormonal deregulation day-to-day (which many of us do), it will just not work. My closed-loop total daily dose of insulin fluctuates between 90 and 220 units with very good control. Any sort of “roughly one total daily dose every day” approach will fail spectacularly in this case. Such a patient cannot achieve good control with traditional treatment, in my opinion. Though they sure are shamed a lot by doctors who, once again, Dunning-Kruger their way into thinking that treatment absolutely should work.
All in all, closed-loop is leaving many medical teams dumbfounded, some are even afraid of it (and refuse funding or tell parents their treatment is good without closed loops), but it’s a life changer. And a patient with this disease always needs to take it into their own hands because the 30 minutes T1D of training in medschool that I got is absolutely nothing compared to years of first-hand experience patients like myself have. That’s why I don’t blame doctors for being misinformed, but I do blame them quite a bit for not realizing the shortcomings of an education that, once again, generally touches on the subject very little.
> The most infuriating thing is when they say that diabetics just die in surgeries, but forget to mention that often the reason is medical negligence.
I find that a lot of medical research literature is like this. A couple of "X is associated with increased mortality" papers that make no attempt at a causal analysis is enough to get doctors to recommend against X.
As far as I can tell, the organizations that make these recommendations don't want to run the risk that maybe the relationship is causal, and moreover don't know all the mediating/moderating factors and so can't safely recommend something that is associated with harming people even if they realize it's not necessarily causal.
The inverse is true for positive outcomes. Y is associated with lower mortality, so we recommend Y, even though we don't understand if it's causal or not. But we do not recommend Z which is closely similar to Y and, if there is a causal connection would share a common causal pathway with the Y benefit, because we have only studied Y and not Z.
It's a weird kind of extreme causal reasoning that ironically leads to a kind of abandonment of causal reasoning.
This is definitely at least one contributing factor to the situation. But another one is that many medics sadly refuse to learn from a patient. Even when the patient is an expert in practice.
A cure for these kinds of issues in medicine and in software engineering is humility. We must understand our knowledge is incomplete. Our learnings are often the best that circumstances allowed us to learn, but not the best one could learn.
I'm 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.
You're definitely making me reconsider it, thanks! Along with the person in another thread saying walks after meals help as well. With a fully remote work these risky "oops I injected but there's no food yet" situations should not happen as often, considering the time-to-fridge is like 10 seconds.
Knowing little about the subject. If Insulin is a 20 minute lag, and eating is a 20 minute lag. Shouldn't you just dose immediately before eating so they hit at the same time?
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.
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!!
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.
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).
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.
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.
>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?
Very dumb question here, but I don’t dare ask it to ChatGPT.
What would happen to T1 or T2 diabetics if we would stop eating all sources of sugars and carbs? So no fruit, no rice, no potatoes and so on?
Would it be possible to survive and live comfortably in a state of Ketosis? Or is a 100% ketogenic diet simply not possible on diabetes?
I’m asking because my true question is: what if insulin becomes too expensive? Then what? Do we die? Or is there some form of diet that we could live on??
I'm not a medical expert, but as far as I'm aware even a 100% ketogenic diet would still have fluctuations in glucose levels which would require insulin to manage. But, it's entirely dependent on how much insulin a T1 or T2 diabetic's body is still capable of producing which would determine if they would still need exogenous insulin. (Because the quantity required _would_ be much lower than on a higher carb diet)
T1 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.
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'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.
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.
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).
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.
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/
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.
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.
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.
> 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.”
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[ 3.1 ms ] story [ 336 ms ] thread> 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.
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...
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.)
> 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.
<looks at all the AI hype>
Seems it's just you and me that think that way...
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.
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.
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.
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).
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.)
> 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.
Would be really curious to know more how DKA happens to you!
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.
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.
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
- 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.
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.
What's the model she uses? My guess would be tslim+Dexcom? It does reduce stress a lot.
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'.
Her description: what else can you do for 30 years and still feel like a failure as it isn't working like it should?
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.
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.
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.
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.
I'm confused. Is your a friend a diabetic whose doctor never told them that carbs increase their blood sugar level? Because this isn't exactly hidden knowledge for diabetics.
They tell patients to "navigate carefully on a world full of addictive carbs" which has disastrous results overall.
Source: I do keto for other reasons.
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.
Also going for a walk after meal smooths the BG curve wonderfully.
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.
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
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).
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)
I wonder how the mobile support is.
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.
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.
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.
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.
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.
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.
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.
https://www.ajpmonline.org/article/S0749-3797(23)00166-6/ful...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2915438/
YMMV but as a software developer I am certainly not going to start throwing stones in a glass house. :)
Also consider additional time and cost of a doctor completing their education while working up to a max of 80h per week, which would be illegal for any reasonable profession.
I'm not sure why the educational requirements are so extreme for all doctors. Certainly for some, like surgeons, I get it, but for my GP I think it's a total farce. I don't make the rules though, I just can see a broken system when it's right in front of me.
I'm not totally sold on what I'm selling though. My spouse has been a nurse practitioner for over 10 years; she had the option of becoming an MD but picked that route because she saw the grueling 80+ hr work weeks of older doctor friends and decided it wasn't for her. Unfortunately, she's still stuck with only 20 minutes for sometimes extremely complex patients that require a great deal of research and follow-through outside of work hours, and the extra slack in the system that is provided by her lower wages has just gone to hiring additional administrative middlemen that are seldom capable of actually filling in the gap, whether for reasons of liability, knowledge, skill, or motivation. These positions exist to try and ease the pressure on docs just like NPs exist to ease the pressure on docs, but it doesn't work because at the end of the day you need someone who can hold the liability (both legal and moral) and the knowledge (the correct diagnosis and the correct plan of action) within the same person.
Just like in software, where throwing more developers at a problem doesn't guarantee your problem gets solved more efficiently, for much the same reason. You need somebody who understands the domain, understands the tools, understands the business framework, and is ready to take responsibility for solving the problem. Each additional person introduces information overhead that makes each one of those tasks more complicated.
I 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.
> 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)
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.
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.
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.
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.
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)
(context: spent some time working in a prostate cancer research lab and have doctors in the family)
If you have a palpable or visible likely-benign condition that isn't causing symptoms, such as a mole, rash, or lump, every doctor will recommend getting that checked out. Most of the time it'll turn out to be completely innocuous, but you'll go to the doctor and they'll decide between it's fine, monitoring, invasive investigation, and urgent treatment.
Obviously if the test itself is invasive (e.g. has a dose of radiation) then that is something that needs to be compared against the potential benefit. I certainly would not have a preventative head CT scan.
However if we're talking about things like an MRI, urine/stool test, or even something like a blood panel that has extremely low risks for most apparently healthy people (I donate blood 6x a year anyway - why not take some of that and test it), then why is it so different to a skin check, besides the cost?
A test isn't always a binary 'you have X ' . Look at PSA screening for prostate cancer starting in your 40s is not recommended for that reason.
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.
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.
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.
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.
I can see that in the general case, it can lead to increased spending and worse outcomes.
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) .
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.
How come the disease gets so little publicity??
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.
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...
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.
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.
A cure for these kinds of issues in medicine and in software engineering is humility. We must understand our knowledge is incomplete. Our learnings are often the best that circumstances allowed us to learn, but not the best one could learn.
I 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.
Anyways there are studies about the "inject 15min before food" approach: eg. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945151/
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.
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!
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.
a centurion? an officer of the roman army?
I do not understand the phrase, is the author fat or not?
What would happen to T1 or T2 diabetics if we would stop eating all sources of sugars and carbs? So no fruit, no rice, no potatoes and so on?
Would it be possible to survive and live comfortably in a state of Ketosis? Or is a 100% ketogenic diet simply not possible on diabetes?
I’m asking because my true question is: what if insulin becomes too expensive? Then what? Do we die? Or is there some form of diet that we could live on??
I 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.
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.
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.
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.
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.
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.
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...
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/
I can reduce sugar but not carbohydrates as a whole.
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 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.
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.
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.
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.
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.
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...