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A DIY ‘bionic pancreas’ is changing diabetes care

457 points by sohkamyung 3y ago

deleted 3y ago
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epilys 3y ago
Note that as with every insulin-pump system, it still has two major pain points: - subcutaneous insulin doesn't act immediately, as it would if it was injected in the blood directly. it peaks in an hour and then wanes off at 3-4 hours. - it cannot know external factors like how much carbohydrates you are eating, or if you are planning to work out, etc. Like conventional pumps you have to enter it manually. Buying a sandwich and not having to think about carb grams and predosing at all sounds like a dream to me.
- jcims 3y ago
  My youngest daughter has been on a pump for six years now and she's completely burned out and apathetic about it all. It just all blurs together and her diabetes is not well managed at the moment. My oldest and I had a sort of impromptu intervention with her and she just broke down crying. It's a lot. The pump she has, a t:slim X2 is better than her Medtronic, but the closed loop aspect (control iq) is impotent and rarely has a noticeable impact. Hopefully this tech will advance on a good pace and products will hit the market with more assertive control algorithms. Obviously there are dangers but we've already accepted that by hooking her up to a pump with enough insulin in it to kill her.
  - mecsred 3y ago
    I have family with diabetes and I feel some empathy with your situation. I've felt that second hand anxiety when my cousin started partying recklessly in uni and not managing it super well. You're helping her manage it and that makes a massive difference. Those of us without diabetes usually aren't taking care of ourselves at 100% either. We're lucky to have access to amazing medical technology, so some scary seeming situations are pretty recoverable. Hopefully a platitude or two helps a small amount :(
  - photon_lines 3y ago
    Have you tried putting your daughter on a different diet (low glycemic-index diet with more natural and keto-friendly foods)? This will make managing her diabetes a lot simpler and it'll make her feel better too. I'm a type one diabetic and have been one for over 15 years now. Getting diagnosed is one of the best things that's ever happened to me. It got me to notice the huge impact diet and exercise have on the mind and body. I initially had issues like your daughter too but changing my eating habits and altering my life-style definitely had a profound effect and made it much easier to manage. If you need tips / help let me know and I'll do what I can. My number one tip is to stick to a more keto-based diet. It will make her blood sugar much easier to manage and has a lot of health benefits.
    - milesvp 3y ago
      Second this. Just adding fats and protien to a meal effect the meal’s glycemic index (even though it does nothing to glycemic load). I did a lot of research both times my wife was gestational diebetic, and while I already knew that fats helped to smooth bloodsugar levels, it was still wierd to see a dataset with toast having one of the highest glycemic while buttered toast was significantly lower on the scale.
      - phil21 3y ago
        This is trying to solve the wrong problem. Juvenile diabetes is almost always a human problem - not one of optimizing for treatment. If you have a kid in their teens or 20's who is not entirely ignoring it out of spite, you're way ahead of the game. This problem is much harder to solve than tracking carbs and insulin doses, or changing diet/etc. The person has to be ready to attack it. And for many young folks (and I assume older as well) this is where the problem lies. It takes a lot to really accept this is going to be your entire life, especially at an age where everyone (seemingly) around you are living these amazing care-free young adult lives, while you have this constant monkey on your back being a buzzkill. Very few individuals have the desire to "do their research" and start hacking on their health the way the HN community would tend to approach things. Short of commenting on how heartbreaking it is as a parent to watch your kid go through this, I really have no good answers. I guess the topic of this discussion is it - a magic device you can slap on once a week and never think about again. Short of a device like that, I can't see this problem turning to technical vs. human any time soon.
  - heuermh 3y ago
    Hang in there, lots of folks having similar experience! We have been pretty impressed with the closed-ish loop of the Dexcom and Omnipod, it handles daily fluctuations due to more/less exercise etc. fairly well. Still two separate handheld devices though, and quality always falls off when the sensor (every 10ish days) and pump (every 3 days) approach expiration.
    - cadr 3y ago
      I love my omnipod/dexcom combo so much.
  - GiorgioG 3y ago
    My 11/yo has the same pump. Control IQ is great...but it takes a cautious approach to adjustments of insulin delivery given that it can only lower blood glucose levels and not raise them. Hopefully dual-hormone pumps will come out in the next few years and the algorithms can be more aggressive. In the end, our 11 year old ignores his pump much of the time. We have a bunch of SugarPixels around the house, so if his sugar is way off we know and can address it ASAP.
  - jacquesm 3y ago
    Due to NDAs I can't write too much about this but there is a lot of work being done on this front right now and I expect a new generation of these devices to be out for trial in the relatively near future. Pumps are getting smaller, which is one factor that helps and analysis is getting more accurate. Reliability and sensors are improving. But the timing aspect is critical especially without knowledge about environmental factors and the relatively long hysteresis of the feedback is a major obstacle to the big leap forward. Key here is that the body has more data about the situation than an outside device will ever have and that regulation in the body is a fairly global affair [1] so it can act faster and with more precision than you can ever do from a single site. These are all super tricky problems. But compared to the situation only a decade ago it is already much better and I fully expect at least one more round of breakthrough devices. Best of luck there, it's harsh to be a kid with such a demon on your shoulders. [1] for instance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/
    - jcims 3y ago
      That's amazing to hear. Thank you!
  - epilys 3y ago
    I'm on the Medtronic 780g hybrid loop and it's actually working. If I eat nothing and have no intense physical activity the CGM curve is a stable straight line.
    - jcims 3y ago
      That's the one she had. It's been a few years, maybe they have fixed it.
      - jacquesm 3y ago
        It has indeed been improved substantially in the last couple of years. If you haven't upgraded the pump in that time I would definitely recommend you do so. One thing about these pumps that doesn't seem to be advertised widely enough: they don't handle full sun well, so always keep at least one layer of clothing over the pump.
  - sgt101 3y ago
    My daughter is on https://camdiab.com/ https://camdiab.com/ it really works a charm, we do have alarms for low glucose (like it can dip down to 3.1 if she does exercise) and rarely for high glucose, but these are things you would probably not even see without the constant monitoring. The data shows that she is extremely well managed since she started with the closed loop system. Camaps demands that you have a particular model of phone (about a dozen androids and iphones) which makes it a bit more expensive I guess. Luckily we are on the NHS in the uk so my only expense as a parent is that I have to buy the posh phone, but then I guess that goes with having a teenager around anyway...
    - jcims 3y ago
      Nice!!! Do you mind if I ask which pump you’re using? We’re already using the G6 cgm which she seems to like.
      - sgt101 3y ago
        G6-cgm and Dana Diabecare-rs. We started with the Dana-i but it was glitchy and so we got the rs instead, which works a charm so far. We also use a setter device that talks to the Dana pump when you are filling it up and tells it how much insulin you are loading (this can be done manually also I think). She has a samsung s-20 phone, previously we had a pixel 3 which bricked itself on Christmas Eve. I had a LG G7 which we tried to use, but although this is claimed to be compatible it turned out not to work. So we had injections over Christmas which was not great, but when the new phone turned up on 27th all was well again. Google replaced the Pixel, so I now have the replacement handset and it is ready to go as a fail over.
  - mlsu 3y ago
    Gosh your post really hit a nerve. I went through the same struggle with my own Type 1. Feeling overwhelmed with responsibility, denying I am any different than anyone else, denying that I have to permanently manage a condition to be normal, denying that my own body would fail me, feeling helpless that even the "best" I could do would still involve invasive and frustrating treatments. For me, it was a phase. Happened at about the same age (through my teens, basically) and took about that amount of time to just get through it. At some point I learned that with a bit of management, I can thrive and do just as well as anyone, especially with the new tools that we have now. It just took that psychological struggle to get there. I am really sorry that you have to see your daughter struggling like that. I know exactly how helpless it feels.
    - jcims 3y ago
      Thank you, I really needed to hear this.
- mlyle 3y ago
  You can build automation with *aps to do a bit better on these metrics than commercial systems—- e.g. responding to heart rate, or as someone else pointed out, noticing an SSID from a gym.
- danbruc 3y ago
  I am aware that I know next to nothing about the topic and that I am ignorant of countless complications. With that said, your pancreas also does not know that you plan to work out, at least I would assume so. So what is the crucial difference between a pancreas and insulin injections? That the response is delayed because the injection is not into the blood stream or does the pancreas also have better sensors to figure out how much insulin to release, or maybe even release things other than insulin? If it is the former, what obstacle is there for injecting into the blood stream? The infection risk of having a permanently open port into the circulatory system? If so, is there a similarly effective way to deliver insulin that is not into the blood stream and with less risks? Or could you have some kind of membrane in the port that only allows insulin to pass through but that is impermeable for pathogens? Or would that get clogged immediately?
  - epilys 3y ago
    The difference is the pancreas reacts immediately to changes and has no practical delay for its effects, same concept as PID controllers in engineering.
    - danbruc 3y ago
      So the limiting factor is the subcutane delivery, i.e. if the insulin could be delivered into the blood stream, then continuous glucose monitoring and controlled precise insulin doses could work as well as the pancreas?
      - mlsu 3y ago
        The subcutaneous part is not really solvable, but even if it were, "real" insulin is much faster than even the fastest insulins (lispros) that we currently have. So there is a delay between delivery and action. There is also a delay on the sensing side; the pancreas always knows what's up, but even cutting edge CGM technology has significant delays, mostly related to that subcutaneous issue from my understanding.
        3y ago
- kaliqt 3y ago
  CGM circuit systems do auto-handle spikes. The systems are getting better.
- gustavus 3y ago
  So my wife is a type 1ner. She recently got a pump that also reads her transmitter and it will change the amount of insulin being delivered based on what the transmitter is saying. It isn't perfect she can overwhelm it if she eats a ton of carbs, but honestly it's gone from her pump/phone yelling at her 7-8 times a day about being high or low to maybe once a day or once every other day. The biggest thing it has also done is regulate her blood sugar at night so we don't wake up anymore with the pump screaming at her that she needs to start shoving fruit snacks down her maw.
  - GrinningFool 3y ago
    I have a family member on a similar system. You might/probably already know this, but I'll put it out there anyway in case I'm wrong. The thing to watch out for is that if the CGM was previously alerting about frequent nighttime lows, there should probably be some basal dose adjustment made in the pump. The pump can cover incorrect basal dosages for a good range with its automatic adjustments, but it's better to periodically look at the numbers and see if it's regularly backing off the basal dose because it's too high.
- jablongo 3y ago
  > - it cannot know external factors like how much carbohydrates you are eating, or if you are planning to work out, etc. Like conventional pumps you have to enter it manually. Sign up for the waitlist of https://replica.health https://replica.health! It is designed to make capturing those external factors as painless as possible. Depending on what setup you have, it will be available in the next month.
dghughes 3y ago
Off-topic but that is a very old Samsung phone shown at least seven years old in the image at the linked article.
- Someone 3y ago
  The second photo has a subtitle “An example of an early OpenAPS set-up from 2016”. Chances are the first photo is equally old.
xyzal 3y ago
A friend showed me AndroidAPS's automation capabilities and my jaw dropped. "If this SSID is visible, I am in a gym, so lower basal rate by 20%". edit: docs for the interested> https://androidaps.readthedocs.io/en/latest/Usage/Automation.html https://androidaps.readthedocs.io/en/latest/Usage/Automation...
- Forge36 3y ago
  My first thought was this sounded like Tasker. From that link it looks like a similar concept with workflows focused around insulin pumps.
- DoingIsLearning 3y ago
  If you have a safety-critical decision maker running on Android doesn't that raise the criticality of the OS (provided there is no other fall-back)? For the regulatory people out there, how does this align in terms of risk management in the world of IEC 62304?
  - iancmceachern 3y ago
    Many other similar devices use all types of OSS. You just need to make sure it fails safe. If the OS or any software hangs or crashes just make sure the thing turns off and doesn't dump all the insulin or anything.
    - birdman3131 3y ago
      I would want a beep or something to let me know it had disconnected. (Also a low battery alarm as well.) On the device not on the phone. And the phone should have the same thing if the device does not respond to a heartbeat signal.
      - deleted 3y ago
        [deleted]
    - DoingIsLearning 3y ago
NoMoreNicksLeft 3y ago
I kept looking for the identity of the minicomputer used, it has to be either a PDP-11 or a Data General system, I should think, but they provided no model numbers.
- jpitz 3y ago
  The misuse of that particular term of art should probably be pointed out to the author.
liamzebedee 3y ago
I posted a thread here in 2019 for anyone curious on the technical walkthrough for setting one of these up (+ HN discussions) [1]. [1]: https://news.ycombinator.com/item?id=20606230 https://news.ycombinator.com/item?id=20606230
thereikiway 3y ago
Fantastic. Anything to successfully move forward progress, even with bumps along the way, and not rely on the creaking behemoth of the useless fda
rexreed 3y ago
Pancreatic cancer scares the bejeebus out of me. One day I hope there's some solution because it's almost a death warrant if you get that diagnosis.
- abraxas 3y ago
  Not to scare you more but that covers just about any metastatic cancer.
  - lemper 3y ago
    thanks, that's really reassuring.
    - sgt101 3y ago
      well - to be reassuring... we all have a death sentence imposed by birth. As we get older the cumulative chances of it having happened increase, eventually hitting 100%. Cancer doesn't change that - lots of people with cancer get killed by car accidents or heart attacks. In fact a friend of mine recovered 100% from their cancer and then killed themselves on a motorbike.
- appleflaxen 3y ago
  This article has nothing to do with cancer, though. A bionic pancreas won't help you at all if your native pancreas developed a malignancy.
  - rexreed 3y ago
    Right, my response was more of a hope that continued research in this area would lead to possibly some solutions for earlier diagnosis and treatment. Cancer is such a cancer.
- paulcole 3y ago
  The "bionic pancreas" wouldn't help with pancreatic cancer right? The problem is that nobody notices pancreatic cancer until the death warrant is signed (to use your metaphor). Using a bionic pancreas would be like putting out the fire in the kitchen only when the rest of the house is also in flames.
lolc 3y ago
Depending on AndroidAPS for my insulin management, I'm very happy that people are working on getting this into app stores! I'm not using most of the advanced features but just having the device regulate basal rate is life-changing. And I really don't want to be tied to one supplier here!
cjbgkagh 3y ago
I do wonder about the PED aspect of DIY smart insulin, some bodybuilders already use insulin in this way and I wonder if elite athletes could use this to boost their performance.
- SoftTalker 3y ago
  Bodybuilders in particular but other elite-level athletes have always had a propensity to use PED. A thing now is to get on TRT even if they don't strictly "need" it. Medical advances for those who do need them should not be blocked by fears (real or imagined) of abuse or misuse.
  - cjbgkagh 3y ago
    Oh, I'm not suggesting we prevent people from having this just pointing out that superphysiological results may be possible. I have ME/CFS and I'm interested in tools like this that may help me push things a bit harder, I'd prefer if a bunch of bodybuilders/athletes found the limits before I gave it a try.
- offices 3y ago
  Insulin, like clen, is a PED that most users are using for reasons that don't make sense. Regardless, it's already widely available, cheap in most of the world, and almost impossible to detect.
jimkleiber 3y ago
My buddy built Loop, the iOS app for managing this (which, thru another org just got FDA approved). I was living near him in Oakland when he was first building it and I just feel really proud of what he was able to do not only for himself but for others. For all of you out there who are trying to use tech to solve your own problems, please keep at it, one day your work may help thousands or millions and be featured in Nature.
- safepants 3y ago
  My spouse is also using Loop. It's a huge improvement over just the pump alone. Even just changing basal settings is easier in the app versus the pump device interface, which is no longer required using Loop on iOS with the OrangeLink device. https://loopkit.github.io/loopdocs/ https://loopkit.github.io/loopdocs/ They have a new web browser build method using TestFlight, which no longer requires an up to date Mac running the latest version of Xcode. The web build mode also enables someone to update the Loop app using only their smartphone. Something which is handy for travel or long periods of time without access to a Mac. It only lasts 90 days instead of the 1 year of the Xcode build, but is easy to rebuild on TestFlight.
- jfengel 3y ago
  That's impressive as hell. The FDA is, by nature, a very conservative and slow-moving organization. They set a very high standard of evidence for anything that's actually called "medicine". (As opposed to supplements and devices that pretend not to make medical claims, in which they are largely hamstrung.) It takes a ton of effort to get FDA approval. Navigating the process is expensive and aggravating.
  - rrrrrrrrrrrryan 3y ago
    I work in the space, and back in 2018 the FDA was communicating very clearly that they wanted to see someone make a closed loop artificial pancreas. They do go a little easier on companies that are developing the new stuff they want. But I suspect the bigger companies didn't want to touch it because it's inherently risky: any minor bug or glitch can literally kill children any you could lose the whole company. It's awesome that the DIY / hacker / open source folks were able to step up to the opportunity and build this great think, but it is all very much proceed-at-your-own-risk: there's nobody with a big pile of cash to sue if you or your loved ones get hurt. I'd love to see more of these sorts of trailblazing initiatives in the future, and it's tremendously encouraging that the FDA is apparently open to this as well.
GiorgioG 3y ago
My 11/yo son is a type 1 diabetic. While this seems great...I can't trust a DIY solution. Beta Bionics has the real deal: https://www.betabionics.com/ https://www.betabionics.com/ and has been recently given the green light by the FDA.
nahsra 3y ago
Insulin lowers blood glucose, which of course is a vital tool. However, there appears to now be shelf-stable glucagon [1], a hormone which can be injected similarly to insulin and raises blood glucose levels. AFAIK there is only one company, Beta Bionics [2], that is working on commercialization of such technology with dual pumps. In this case, you could be more aggressive in either direction of pushing BG, because you have a safety net. Because this feels like a holy grail / functional cure, I'm surprised the incredible DIY teams out there haven't trained their guns on doing this. Having both "turn it up" and "turn it down" knobs seems so much more valuable than squeezing the last 5% of efficacy of AID systems. I feel like glucagon is obviously "the answer", but I don't see much talk about it. Is the problem that there is no hardware for dual hormone pumps? I would have thought by now they'd have hacked 2 patch-pump AIDs to work simultaneously. [1] https://www.medscape.com/viewarticle/947962 https://www.medscape.com/viewarticle/947962 [2] https://www.thejdca.org/article/2023/06/05/fda-approves-beta-bionics-insulin-only-device-what-about-dual-hormone- https://www.thejdca.org/article/2023/06/05/fda-approves-beta...
- conceptme 3y ago
  There is https://www.inredadiabetic.nl/ontdek-de-AP/ https://www.inredadiabetic.nl/ontdek-de-AP/ which has both glucacon and insuline maybe there are others still in testing phase though.
- jeroenvlek 3y ago
  My wife has diabetes and her endocrinologist told me 5 years ago that the absence of shel-stable glucagon was the reason her insulin pump and glucose sensor weren't connected yet. Now she is actually using AndroidAPS, after I compiled it for her. Really happy to see that there are people now working on both gradients!
- gustavus 3y ago
  So my wife is a type 1er. The way glucagon fits into her life is that we have an emergency glucagon shot that she carries in her purse to use in the case of an emergency. The glucagon is more of an immediate emergency recovery. On the flip side glucagon doesn't lower the blood sugar which is dangerous when she is going high.
nshepperd 3y ago
> The DIY community and industry are not in opposition, says Lewis. I would really like to believe that, but given how Medtronic and every CGM I have used have seemingly intentionally sabotaged open source loop compatibility with every new product, it doesn't seem like everyone's on board...
- jablongo 3y ago
  Yeah she's being diplomatic for sure. Dexcom plays ball and is also the most successful of the CGMs, so you would think that others would follow their lead and write their data to apple health. Most companies keep their data thinking its going lead to some unspecified profits down the line but then never really do anything with it.
  - thecosas 3y ago
    I still don't understand why they put a 3-hour delay on writing to Apple Health though. Any chance you have context on the why behind it?
    - nshepperd 3y ago
      I can't think of any reason why they would do that other than specifically to prevent looping.
jacquesm 3y ago
I absolutely love this development. Who better to take charge here than the people directly affected? They are as motivated as any to get it right, not because of a financial incentive but because their life is in the most literal sense at risk of getting it wrong. Of course the big players will all push the fear button, but that should be contrasted with the simple fact that they all have had (sometimes multiple) recalls. Do not underestimate how hard it is to do this right, the people that built these DIY solutions have spent a ton of effort on them, probably more than the equivalent commercial players. But long term my prediction would be that the DIY movement will lose out. The competition has massive lobbying power, a lot of funding and looks like the safe option to outsiders, especially when there is feature parity. The main driver for this development was a simple one: all the parts were out there, but nobody was willing to take the plunge and build a closed loop system and have it certified. But that impetus is now gone and future improvements will be much higher hanging fruit. But I'd love for them to stay around to keep the industry on its toes. Especially because commercial interests are always going to maximize profits, which for a disease that is so widespread and that affects so many lives should not be a factor. Incidentally: a modern insulin pump is a work of art, if you don't know how they work and you fancy technology I would encourage you to have a look at this.
- tracker1 3y ago
  I think it's awesome that DIY options are becoming more readily available. I'm t2d, but have a relatively hard time with glucose control overall. If I stick to eggs, meat and green veg, then I don't need much beyond the weekly Trulicity and daily Basaglar. If I have anything else, beyond the various food intolerance issues I have, I'm also experiencing Gastroparesis, which means what I eat may hit sooner, later or much later... as much as 20+ hours later, so I usually have to take a lighter tough to insulin and be more diligent about followup checks. It's a literal roller coaster. At least having a Continuous Glucose Monitor (cgm) makes it easier to track.
  - jacquesm 3y ago
    Yes, the roller coaster is a great way to put it. One of my business partners had it so bad that whenever he was out of sight for longer than an hour or so people would start to worry if he was ok. We had a major crisis when he dropped off the radar for a full day, everybody pitched in until we found him (and not in a coma). Scary stuff, and with large variations between individuals in terms of severity and speed of onset of symptoms.
logicallee 3y ago
I am not quite ready for a pump, but am in the market for half of the solution, a continuous blood glucose monitor. Any diabetics here have a recommendation for an affordable out of pocket continuous blood glucose monitor? (Without insurance). I have an iPhone 13. Which is the best value for money? I am looking for something affordable. I can pay a reasonable amount monthly for consumables for it.
- jablongo 3y ago
  The best brand is Dexcom (G6 or G7). The Abbott one is cheaper but has disadvantages. Either one will be way better than nothing if you have diabetes. Without insurance dexcom will cost you like $260 a month via one of these mail order distributors: https://rapidrxusa.com/products/dexcom-g6-sensors-3-pack https://rapidrxusa.com/products/dexcom-g6-sensors-3-pack Do your part as a consumer and shop around a bit to drive prices down... good luck!
  - protomolecule 3y ago
    Could you elaborate why Abbot's Freestyle Libre is worse?
    - user_7832 3y ago
      As someone using a freestyle Libre 2, I’m also curious. From what I know, I think the main reason is that the Libre needs NFC vs the Dexcom’s Bluetooth… except that Abbott recently updated (!!) the software and now Bluetooth works at par as the dexcom. Some people have better sensitivity with one or the other I agree, but both are fairly solid. The Libre is smaller though, so I prefer that.
    - sebdei 3y ago
      I would definitetly recommend the Dexcom G7. As I come from the libre3 I have to say that the G7 overall feels more sophisticated, yet alone the overpatch they send with each sensor will help keeping the sensor on my arm. In the past the libre3 often just fell of during my swim training. Further, libre3 is often just not supported by third party apps or pumps or other. They do not provide an official API, that might be helpful for tracking your clucose. Back in the days I used and contributed to https://github.com/timoschlueter/nightscout-librelink-up https://github.com/timoschlueter/nightscout-librelink-up to periodically fetched my sensor data from librelink and stored it my nightscout, that runs on my server at my home. That helped a lot, but it was more than a hack.
mlsu 3y ago
I assure you: commercial players are working very hard on this. The difficult part is actually power management. There are clearly very sophisticated algorithms that can do no meal announce closed loop management of t1d (just google scholar "closed loop type 1" -- it's a very popular problem for control systems researchers). But they take a lot of power. Embedded convex solvers for large MPC schemes do not come cheap, especially when you want them running every 5 minutes! I have used this DIY loop system in the past. It is extremely power hungry and requires recharging daily, even when plugged in half the day. And I don't even think they are doing anything exotic like MPC. I stopped using it because of those battery issues and the implementation is gnarly -- it's basically a collection of bash scripts and relies on the operating system (armbian linux) to schedule doses. No RTOS, no watchdogs... Power management is extremely important in a pump. If a pump dies every <24 hours without being recharged, that impacts both the patient experience and can be very dangerous. If it dies overnight you get no insulin and you will be very sick the next morning. That said, I love that this is a thing. It pushes the tech forward and gets people excited about a machine cure, which is the only viable solution to "curing" type 1 at the moment.
ikekkdcjkfke 3y ago
A lot of talk about pumps. Is it possible to have caffiene on one of those pumps?
darkclouds 3y ago
Much rather increase my manganese intake, which maintains blood sugar levels, and slows the pancreas from releasing too much amylase which further increases the blood sugar levels causing the spike. Chromium to make my muscles sensitive to insulin also helps.
bimabet 3y ago
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black_13 3y ago
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dankle 3y ago
This is fucking amazing!! Love to see it, very interesting future for folks with t1d now, both re tools like this and new potential cures in the pipe.
drgo 3y ago
I am a physician, researcher and a programmer. Any one interested in collaborating to solve similar problems feel free to contact me: https://drgo.github.io/about/ https://drgo.github.io/about/
myshpa 3y ago
I know this article is about Type 1, but I'll post some links here in the hope that it might help someone. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399621/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399621/ Calorie restriction for long-term remission of type 2 diabetes https://www.nature.com/articles/s41574-019-0186-6/ https://www.nature.com/articles/s41574-019-0186-6/ Low-calorie diets in the management of type 2 diabetes mellitus https://www.diabetes.org.uk/guide-to-diabetes/enjoy-food/eating-with-diabetes/whats-your-healthy-weight/low-calorie-diets https://www.diabetes.org.uk/guide-to-diabetes/enjoy-food/eat... A low-calorie diet can be used to treat or manage type 2 diabetes according to research https://www.pcrm.org/news/news-releases/plant-based-diets-best-diabetes-prevention-and-treatment-new-review-scientific https://www.pcrm.org/news/news-releases/plant-based-diets-be... Plant-Based Diets Best for Diabetes Prevention and Treatment, New Review of Scientific Literature Confirms https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466941/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466941/ A plant-based diet for the prevention and treatment of type 2 diabetes https://www.telegraph.co.uk/science/2016/03/14/type-2-diabetes-can-be-cured-through-weight-loss-newcastle-unive/ https://www.telegraph.co.uk/science/2016/03/14/type-2-diabet... Type 2 diabetes can be cured through weight loss, Newcastle University finds https://trevorklee.substack.com/p/obesitys-relationship-with-type-2?s=r https://trevorklee.substack.com/p/obesitys-relationship-with... Obesity's relationship with type 2 diabetes is really weird https://www.youtube.com/watch?v=lSwL73evUdA https://www.youtube.com/watch?v=lSwL73evUdA Diabetes Reversal and Weight-loss with Neal Barnard, M.D. https://www.youtube.com/results?search_query=bernard+diabetes https://www.youtube.com/results?search_query=bernard+diabete...
recursinging 3y ago
I had a close friend with T1D who asked me to help him set up, and dial in a closed loop APS about two years ago. I took a deep dive into it and found it to be much, much more complicated than the PID type regulation I was expecting it to be. Plus, if I made a mistake, he might die. So I declined out of fear. Unfortunately he did die just last March, alone in his apartment after slipping into a coma. His pump kept right on pumping him straight to his grave because the feedback loop of the system required human intervention, even if the human is incapacitated. I wish I would have taken the risk, and I do hope this complicated, but solvable problem will be, and the solution made available to those who need it.
- tectonic 3y ago
  That’s horrible, I’m sorry for your loss.
- deleted 3y ago
  [deleted]
- quiet_wolf 3y ago
  I am really sorry for your loss. I know you want to blame yourself but you could have just as easily killed them setting up the loop as well. Plus with no one to maintain the system they would have likely run into many issues. It isn't a system to be set up or maintained by those who aren't willing to dedicate a lot of time and understanding at this point and who are not technically inclined. For most T1D the best prevention if you can afford it is still a CGM(which you need for the loop too) and making sure your low alert system works and you have another person connected to your data in case you are incapacitated with their low alert system set up. I'd also love to see this hooked up to EMS eventually too. Unfortunately for many people the cost of a CGM or getting insurance to cover it is the prohibitive factor though. I really hope this part of the equation changes someday soon. Source: Partner of T1D
stevezsa8 3y ago
My wife is a Type 1 diabetic. Here is some interesting complexity: She has a continuous glucose monitor on her body that tells the insulin pump how to dose her basal insulin. Basal insulin is the background dose that you have continuously delivered. At night, if she sleeps on the part of the body with the sensor, the blood sugar reading will be lower than actual. So the pump stops insulin and starts beeping an alarm. No big deal, she just gets up and does a finger stick blood test to check for a false positive. About half the time it will be a false low-blood sugar measure. A related issue is that when you first insert the sensor, the blood sugar reading is way off until the body calms down at the insertion site. So long story short, I think we need better continuous glucose monitors to prevent potential wild see-sawing when there are two opposing meds, as with the insulin-glucagon combo.
maximegarcia 3y ago
I’m T1D. For me, the main thing keeping at being good at the closed loop system is delay. In the pancreas, « measure » and delivery happen at the blood level. It is instant. With CGM and pen or pomp insulin delivery, it is in the superficial higher layers of the skin for which you have 15min delay to and from blood.
icedchocolate 3y ago
My biggest fear around this is that these solutions incentivise the biggest pharma companies to stop researching actual cures. I don’t want to have to deal with these devices, I just want it dealt with.
DavideNL 3y ago
Two perhaps interesting links on this topic: 1. A recent blog post about the DIY topic: "How to help people on open-source automated insulin delivery systems?" https://www.diabetotech.com/blog/how-to-help-people-on-open-source-automated-insulin-delivery-systems https://www.diabetotech.com/blog/how-to-help-people-on-open-... 2. Inreda: “A bi-hormonal fully closed loop system”: https://www.inredadiabetic.nl/en/home-english/ https://www.inredadiabetic.nl/en/home-english/
nayzer 3y ago
I've always wondered if it's possible to develop similar tech for Parkinson's patients. I don't think we're able to determine the dopamine level of an individual today. But say we can, wouldn't we be able to infuse the right amount of levodopa into a patient's body, and thus reducing their off time?
Aerbil313 3y ago
Haha. You found the 'solution' for diabetes? The solution for diabetes, heart diseases, tension problems, and all thousand other components of metabolic syndrome is a complete ban on added sugar and HFCS in all goods. Not talking about type 1 diabetes obviously.
- Jarmsy 3y ago
  This is a thread about T1D. Your comment is not relevant.

457 points by sohkamyung 3y ago

deleted 3y ago

[deleted]

Note that as with every insulin-pump system, it still has two major pain points: - subcutaneous insulin doesn't act immediately, as it would if it was injected in the blood directly. it peaks in an hour and then wanes off at 3-4 hours. - it cannot know external factors like how much carbohydrates you are eating, or if you are planning to work out, etc. Like conventional pumps you have to enter it manually. Buying a sandwich and not having to think about carb grams and predosing at all sounds like a dream to me.

jcims 3y ago
My youngest daughter has been on a pump for six years now and she's completely burned out and apathetic about it all. It just all blurs together and her diabetes is not well managed at the moment. My oldest and I had a sort of impromptu intervention with her and she just broke down crying. It's a lot. The pump she has, a t:slim X2 is better than her Medtronic, but the closed loop aspect (control iq) is impotent and rarely has a noticeable impact. Hopefully this tech will advance on a good pace and products will hit the market with more assertive control algorithms. Obviously there are dangers but we've already accepted that by hooking her up to a pump with enough insulin in it to kill her.
- mecsred 3y ago
  I have family with diabetes and I feel some empathy with your situation. I've felt that second hand anxiety when my cousin started partying recklessly in uni and not managing it super well. You're helping her manage it and that makes a massive difference. Those of us without diabetes usually aren't taking care of ourselves at 100% either. We're lucky to have access to amazing medical technology, so some scary seeming situations are pretty recoverable. Hopefully a platitude or two helps a small amount :(
- photon_lines 3y ago
  Have you tried putting your daughter on a different diet (low glycemic-index diet with more natural and keto-friendly foods)? This will make managing her diabetes a lot simpler and it'll make her feel better too. I'm a type one diabetic and have been one for over 15 years now. Getting diagnosed is one of the best things that's ever happened to me. It got me to notice the huge impact diet and exercise have on the mind and body. I initially had issues like your daughter too but changing my eating habits and altering my life-style definitely had a profound effect and made it much easier to manage. If you need tips / help let me know and I'll do what I can. My number one tip is to stick to a more keto-based diet. It will make her blood sugar much easier to manage and has a lot of health benefits.
  - milesvp 3y ago
    Second this. Just adding fats and protien to a meal effect the meal’s glycemic index (even though it does nothing to glycemic load). I did a lot of research both times my wife was gestational diebetic, and while I already knew that fats helped to smooth bloodsugar levels, it was still wierd to see a dataset with toast having one of the highest glycemic while buttered toast was significantly lower on the scale.
    - phil21 3y ago
      This is trying to solve the wrong problem. Juvenile diabetes is almost always a human problem - not one of optimizing for treatment. If you have a kid in their teens or 20's who is not entirely ignoring it out of spite, you're way ahead of the game. This problem is much harder to solve than tracking carbs and insulin doses, or changing diet/etc. The person has to be ready to attack it. And for many young folks (and I assume older as well) this is where the problem lies. It takes a lot to really accept this is going to be your entire life, especially at an age where everyone (seemingly) around you are living these amazing care-free young adult lives, while you have this constant monkey on your back being a buzzkill. Very few individuals have the desire to "do their research" and start hacking on their health the way the HN community would tend to approach things. Short of commenting on how heartbreaking it is as a parent to watch your kid go through this, I really have no good answers. I guess the topic of this discussion is it - a magic device you can slap on once a week and never think about again. Short of a device like that, I can't see this problem turning to technical vs. human any time soon.
- heuermh 3y ago
  Hang in there, lots of folks having similar experience! We have been pretty impressed with the closed-ish loop of the Dexcom and Omnipod, it handles daily fluctuations due to more/less exercise etc. fairly well. Still two separate handheld devices though, and quality always falls off when the sensor (every 10ish days) and pump (every 3 days) approach expiration.
  - cadr 3y ago
    I love my omnipod/dexcom combo so much.
- GiorgioG 3y ago
  My 11/yo has the same pump. Control IQ is great...but it takes a cautious approach to adjustments of insulin delivery given that it can only lower blood glucose levels and not raise them. Hopefully dual-hormone pumps will come out in the next few years and the algorithms can be more aggressive. In the end, our 11 year old ignores his pump much of the time. We have a bunch of SugarPixels around the house, so if his sugar is way off we know and can address it ASAP.
- jacquesm 3y ago
  Due to NDAs I can't write too much about this but there is a lot of work being done on this front right now and I expect a new generation of these devices to be out for trial in the relatively near future. Pumps are getting smaller, which is one factor that helps and analysis is getting more accurate. Reliability and sensors are improving. But the timing aspect is critical especially without knowledge about environmental factors and the relatively long hysteresis of the feedback is a major obstacle to the big leap forward. Key here is that the body has more data about the situation than an outside device will ever have and that regulation in the body is a fairly global affair [1] so it can act faster and with more precision than you can ever do from a single site. These are all super tricky problems. But compared to the situation only a decade ago it is already much better and I fully expect at least one more round of breakthrough devices. Best of luck there, it's harsh to be a kid with such a demon on your shoulders. [1] for instance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/
  - jcims 3y ago
    That's amazing to hear. Thank you!
- epilys 3y ago
  I'm on the Medtronic 780g hybrid loop and it's actually working. If I eat nothing and have no intense physical activity the CGM curve is a stable straight line.
  - jcims 3y ago
    That's the one she had. It's been a few years, maybe they have fixed it.
    - jacquesm 3y ago
      It has indeed been improved substantially in the last couple of years. If you haven't upgraded the pump in that time I would definitely recommend you do so. One thing about these pumps that doesn't seem to be advertised widely enough: they don't handle full sun well, so always keep at least one layer of clothing over the pump.
- sgt101 3y ago
  My daughter is on https://camdiab.com/ https://camdiab.com/ it really works a charm, we do have alarms for low glucose (like it can dip down to 3.1 if she does exercise) and rarely for high glucose, but these are things you would probably not even see without the constant monitoring. The data shows that she is extremely well managed since she started with the closed loop system. Camaps demands that you have a particular model of phone (about a dozen androids and iphones) which makes it a bit more expensive I guess. Luckily we are on the NHS in the uk so my only expense as a parent is that I have to buy the posh phone, but then I guess that goes with having a teenager around anyway...
  - jcims 3y ago
    Nice!!! Do you mind if I ask which pump you’re using? We’re already using the G6 cgm which she seems to like.
    - sgt101 3y ago
      G6-cgm and Dana Diabecare-rs. We started with the Dana-i but it was glitchy and so we got the rs instead, which works a charm so far. We also use a setter device that talks to the Dana pump when you are filling it up and tells it how much insulin you are loading (this can be done manually also I think). She has a samsung s-20 phone, previously we had a pixel 3 which bricked itself on Christmas Eve. I had a LG G7 which we tried to use, but although this is claimed to be compatible it turned out not to work. So we had injections over Christmas which was not great, but when the new phone turned up on 27th all was well again. Google replaced the Pixel, so I now have the replacement handset and it is ready to go as a fail over.
- mlsu 3y ago
  Gosh your post really hit a nerve. I went through the same struggle with my own Type 1. Feeling overwhelmed with responsibility, denying I am any different than anyone else, denying that I have to permanently manage a condition to be normal, denying that my own body would fail me, feeling helpless that even the "best" I could do would still involve invasive and frustrating treatments. For me, it was a phase. Happened at about the same age (through my teens, basically) and took about that amount of time to just get through it. At some point I learned that with a bit of management, I can thrive and do just as well as anyone, especially with the new tools that we have now. It just took that psychological struggle to get there. I am really sorry that you have to see your daughter struggling like that. I know exactly how helpless it feels.
  - jcims 3y ago
    Thank you, I really needed to hear this.
mlyle 3y ago
You can build automation with *aps to do a bit better on these metrics than commercial systems—- e.g. responding to heart rate, or as someone else pointed out, noticing an SSID from a gym.
danbruc 3y ago
I am aware that I know next to nothing about the topic and that I am ignorant of countless complications. With that said, your pancreas also does not know that you plan to work out, at least I would assume so. So what is the crucial difference between a pancreas and insulin injections? That the response is delayed because the injection is not into the blood stream or does the pancreas also have better sensors to figure out how much insulin to release, or maybe even release things other than insulin? If it is the former, what obstacle is there for injecting into the blood stream? The infection risk of having a permanently open port into the circulatory system? If so, is there a similarly effective way to deliver insulin that is not into the blood stream and with less risks? Or could you have some kind of membrane in the port that only allows insulin to pass through but that is impermeable for pathogens? Or would that get clogged immediately?
- epilys 3y ago
  The difference is the pancreas reacts immediately to changes and has no practical delay for its effects, same concept as PID controllers in engineering.
  - danbruc 3y ago
    So the limiting factor is the subcutane delivery, i.e. if the insulin could be delivered into the blood stream, then continuous glucose monitoring and controlled precise insulin doses could work as well as the pancreas?
    - mlsu 3y ago
      The subcutaneous part is not really solvable, but even if it were, "real" insulin is much faster than even the fastest insulins (lispros) that we currently have. So there is a delay between delivery and action. There is also a delay on the sensing side; the pancreas always knows what's up, but even cutting edge CGM technology has significant delays, mostly related to that subcutaneous issue from my understanding.
      - 3y ago
kaliqt 3y ago
CGM circuit systems do auto-handle spikes. The systems are getting better.
gustavus 3y ago
So my wife is a type 1ner. She recently got a pump that also reads her transmitter and it will change the amount of insulin being delivered based on what the transmitter is saying. It isn't perfect she can overwhelm it if she eats a ton of carbs, but honestly it's gone from her pump/phone yelling at her 7-8 times a day about being high or low to maybe once a day or once every other day. The biggest thing it has also done is regulate her blood sugar at night so we don't wake up anymore with the pump screaming at her that she needs to start shoving fruit snacks down her maw.
- GrinningFool 3y ago
  I have a family member on a similar system. You might/probably already know this, but I'll put it out there anyway in case I'm wrong. The thing to watch out for is that if the CGM was previously alerting about frequent nighttime lows, there should probably be some basal dose adjustment made in the pump. The pump can cover incorrect basal dosages for a good range with its automatic adjustments, but it's better to periodically look at the numbers and see if it's regularly backing off the basal dose because it's too high.
jablongo 3y ago
> - it cannot know external factors like how much carbohydrates you are eating, or if you are planning to work out, etc. Like conventional pumps you have to enter it manually. Sign up for the waitlist of https://replica.health https://replica.health! It is designed to make capturing those external factors as painless as possible. Depending on what setup you have, it will be available in the next month.

dghughes 3y ago

Off-topic but that is a very old Samsung phone shown at least seven years old in the image at the linked article.

Someone 3y ago
The second photo has a subtitle “An example of an early OpenAPS set-up from 2016”. Chances are the first photo is equally old.

xyzal 3y ago

A friend showed me AndroidAPS's automation capabilities and my jaw dropped. "If this SSID is visible, I am in a gym, so lower basal rate by 20%". edit: docs for the interested> https://androidaps.readthedocs.io/en/latest/Usage/Automation.html https://androidaps.readthedocs.io/en/latest/Usage/Automation...

Forge36 3y ago
My first thought was this sounded like Tasker. From that link it looks like a similar concept with workflows focused around insulin pumps.
DoingIsLearning 3y ago
If you have a safety-critical decision maker running on Android doesn't that raise the criticality of the OS (provided there is no other fall-back)? For the regulatory people out there, how does this align in terms of risk management in the world of IEC 62304?
- iancmceachern 3y ago
  Many other similar devices use all types of OSS. You just need to make sure it fails safe. If the OS or any software hangs or crashes just make sure the thing turns off and doesn't dump all the insulin or anything.
  - birdman3131 3y ago
    I would want a beep or something to let me know it had disconnected. (Also a low battery alarm as well.) On the device not on the phone. And the phone should have the same thing if the device does not respond to a heartbeat signal.
    - deleted 3y ago
      [deleted]
  - DoingIsLearning 3y ago

NoMoreNicksLeft 3y ago

I kept looking for the identity of the minicomputer used, it has to be either a PDP-11 or a Data General system, I should think, but they provided no model numbers.

jpitz 3y ago
The misuse of that particular term of art should probably be pointed out to the author.

liamzebedee 3y ago

I posted a thread here in 2019 for anyone curious on the technical walkthrough for setting one of these up (+ HN discussions) [1]. [1]: https://news.ycombinator.com/item?id=20606230 https://news.ycombinator.com/item?id=20606230

thereikiway 3y ago

Fantastic. Anything to successfully move forward progress, even with bumps along the way, and not rely on the creaking behemoth of the useless fda

rexreed 3y ago

Pancreatic cancer scares the bejeebus out of me. One day I hope there's some solution because it's almost a death warrant if you get that diagnosis.

abraxas 3y ago
Not to scare you more but that covers just about any metastatic cancer.
- lemper 3y ago
  thanks, that's really reassuring.
  - sgt101 3y ago
    well - to be reassuring... we all have a death sentence imposed by birth. As we get older the cumulative chances of it having happened increase, eventually hitting 100%. Cancer doesn't change that - lots of people with cancer get killed by car accidents or heart attacks. In fact a friend of mine recovered 100% from their cancer and then killed themselves on a motorbike.
appleflaxen 3y ago
This article has nothing to do with cancer, though. A bionic pancreas won't help you at all if your native pancreas developed a malignancy.
- rexreed 3y ago
  Right, my response was more of a hope that continued research in this area would lead to possibly some solutions for earlier diagnosis and treatment. Cancer is such a cancer.
paulcole 3y ago
The "bionic pancreas" wouldn't help with pancreatic cancer right? The problem is that nobody notices pancreatic cancer until the death warrant is signed (to use your metaphor). Using a bionic pancreas would be like putting out the fire in the kitchen only when the rest of the house is also in flames.

lolc 3y ago

Depending on AndroidAPS for my insulin management, I'm very happy that people are working on getting this into app stores! I'm not using most of the advanced features but just having the device regulate basal rate is life-changing. And I really don't want to be tied to one supplier here!

cjbgkagh 3y ago

I do wonder about the PED aspect of DIY smart insulin, some bodybuilders already use insulin in this way and I wonder if elite athletes could use this to boost their performance.

SoftTalker 3y ago
Bodybuilders in particular but other elite-level athletes have always had a propensity to use PED. A thing now is to get on TRT even if they don't strictly "need" it. Medical advances for those who do need them should not be blocked by fears (real or imagined) of abuse or misuse.
- cjbgkagh 3y ago
  Oh, I'm not suggesting we prevent people from having this just pointing out that superphysiological results may be possible. I have ME/CFS and I'm interested in tools like this that may help me push things a bit harder, I'd prefer if a bunch of bodybuilders/athletes found the limits before I gave it a try.
offices 3y ago
Insulin, like clen, is a PED that most users are using for reasons that don't make sense. Regardless, it's already widely available, cheap in most of the world, and almost impossible to detect.

jimkleiber 3y ago

My buddy built Loop, the iOS app for managing this (which, thru another org just got FDA approved). I was living near him in Oakland when he was first building it and I just feel really proud of what he was able to do not only for himself but for others. For all of you out there who are trying to use tech to solve your own problems, please keep at it, one day your work may help thousands or millions and be featured in Nature.

safepants 3y ago
My spouse is also using Loop. It's a huge improvement over just the pump alone. Even just changing basal settings is easier in the app versus the pump device interface, which is no longer required using Loop on iOS with the OrangeLink device. https://loopkit.github.io/loopdocs/ https://loopkit.github.io/loopdocs/ They have a new web browser build method using TestFlight, which no longer requires an up to date Mac running the latest version of Xcode. The web build mode also enables someone to update the Loop app using only their smartphone. Something which is handy for travel or long periods of time without access to a Mac. It only lasts 90 days instead of the 1 year of the Xcode build, but is easy to rebuild on TestFlight.
jfengel 3y ago
That's impressive as hell. The FDA is, by nature, a very conservative and slow-moving organization. They set a very high standard of evidence for anything that's actually called "medicine". (As opposed to supplements and devices that pretend not to make medical claims, in which they are largely hamstrung.) It takes a ton of effort to get FDA approval. Navigating the process is expensive and aggravating.
- rrrrrrrrrrrryan 3y ago
  I work in the space, and back in 2018 the FDA was communicating very clearly that they wanted to see someone make a closed loop artificial pancreas. They do go a little easier on companies that are developing the new stuff they want. But I suspect the bigger companies didn't want to touch it because it's inherently risky: any minor bug or glitch can literally kill children any you could lose the whole company. It's awesome that the DIY / hacker / open source folks were able to step up to the opportunity and build this great think, but it is all very much proceed-at-your-own-risk: there's nobody with a big pile of cash to sue if you or your loved ones get hurt. I'd love to see more of these sorts of trailblazing initiatives in the future, and it's tremendously encouraging that the FDA is apparently open to this as well.

GiorgioG 3y ago

My 11/yo son is a type 1 diabetic. While this seems great...I can't trust a DIY solution. Beta Bionics has the real deal: https://www.betabionics.com/ https://www.betabionics.com/ and has been recently given the green light by the FDA.

nahsra 3y ago

Insulin lowers blood glucose, which of course is a vital tool. However, there appears to now be shelf-stable glucagon [1], a hormone which can be injected similarly to insulin and raises blood glucose levels. AFAIK there is only one company, Beta Bionics [2], that is working on commercialization of such technology with dual pumps. In this case, you could be more aggressive in either direction of pushing BG, because you have a safety net. Because this feels like a holy grail / functional cure, I'm surprised the incredible DIY teams out there haven't trained their guns on doing this. Having both "turn it up" and "turn it down" knobs seems so much more valuable than squeezing the last 5% of efficacy of AID systems. I feel like glucagon is obviously "the answer", but I don't see much talk about it. Is the problem that there is no hardware for dual hormone pumps? I would have thought by now they'd have hacked 2 patch-pump AIDs to work simultaneously. [1] https://www.medscape.com/viewarticle/947962 https://www.medscape.com/viewarticle/947962 [2] https://www.thejdca.org/article/2023/06/05/fda-approves-beta-bionics-insulin-only-device-what-about-dual-hormone- https://www.thejdca.org/article/2023/06/05/fda-approves-beta...

conceptme 3y ago
There is https://www.inredadiabetic.nl/ontdek-de-AP/ https://www.inredadiabetic.nl/ontdek-de-AP/ which has both glucacon and insuline maybe there are others still in testing phase though.
jeroenvlek 3y ago
My wife has diabetes and her endocrinologist told me 5 years ago that the absence of shel-stable glucagon was the reason her insulin pump and glucose sensor weren't connected yet. Now she is actually using AndroidAPS, after I compiled it for her. Really happy to see that there are people now working on both gradients!
gustavus 3y ago
So my wife is a type 1er. The way glucagon fits into her life is that we have an emergency glucagon shot that she carries in her purse to use in the case of an emergency. The glucagon is more of an immediate emergency recovery. On the flip side glucagon doesn't lower the blood sugar which is dangerous when she is going high.

nshepperd 3y ago

> The DIY community and industry are not in opposition, says Lewis. I would really like to believe that, but given how Medtronic and every CGM I have used have seemingly intentionally sabotaged open source loop compatibility with every new product, it doesn't seem like everyone's on board...

jablongo 3y ago
Yeah she's being diplomatic for sure. Dexcom plays ball and is also the most successful of the CGMs, so you would think that others would follow their lead and write their data to apple health. Most companies keep their data thinking its going lead to some unspecified profits down the line but then never really do anything with it.
- thecosas 3y ago
  I still don't understand why they put a 3-hour delay on writing to Apple Health though. Any chance you have context on the why behind it?
  - nshepperd 3y ago
    I can't think of any reason why they would do that other than specifically to prevent looping.

jacquesm 3y ago

I absolutely love this development. Who better to take charge here than the people directly affected? They are as motivated as any to get it right, not because of a financial incentive but because their life is in the most literal sense at risk of getting it wrong. Of course the big players will all push the fear button, but that should be contrasted with the simple fact that they all have had (sometimes multiple) recalls. Do not underestimate how hard it is to do this right, the people that built these DIY solutions have spent a ton of effort on them, probably more than the equivalent commercial players. But long term my prediction would be that the DIY movement will lose out. The competition has massive lobbying power, a lot of funding and looks like the safe option to outsiders, especially when there is feature parity. The main driver for this development was a simple one: all the parts were out there, but nobody was willing to take the plunge and build a closed loop system and have it certified. But that impetus is now gone and future improvements will be much higher hanging fruit. But I'd love for them to stay around to keep the industry on its toes. Especially because commercial interests are always going to maximize profits, which for a disease that is so widespread and that affects so many lives should not be a factor. Incidentally: a modern insulin pump is a work of art, if you don't know how they work and you fancy technology I would encourage you to have a look at this.

tracker1 3y ago
I think it's awesome that DIY options are becoming more readily available. I'm t2d, but have a relatively hard time with glucose control overall. If I stick to eggs, meat and green veg, then I don't need much beyond the weekly Trulicity and daily Basaglar. If I have anything else, beyond the various food intolerance issues I have, I'm also experiencing Gastroparesis, which means what I eat may hit sooner, later or much later... as much as 20+ hours later, so I usually have to take a lighter tough to insulin and be more diligent about followup checks. It's a literal roller coaster. At least having a Continuous Glucose Monitor (cgm) makes it easier to track.
- jacquesm 3y ago
  Yes, the roller coaster is a great way to put it. One of my business partners had it so bad that whenever he was out of sight for longer than an hour or so people would start to worry if he was ok. We had a major crisis when he dropped off the radar for a full day, everybody pitched in until we found him (and not in a coma). Scary stuff, and with large variations between individuals in terms of severity and speed of onset of symptoms.

logicallee 3y ago

I am not quite ready for a pump, but am in the market for half of the solution, a continuous blood glucose monitor. Any diabetics here have a recommendation for an affordable out of pocket continuous blood glucose monitor? (Without insurance). I have an iPhone 13. Which is the best value for money? I am looking for something affordable. I can pay a reasonable amount monthly for consumables for it.

jablongo 3y ago
The best brand is Dexcom (G6 or G7). The Abbott one is cheaper but has disadvantages. Either one will be way better than nothing if you have diabetes. Without insurance dexcom will cost you like $260 a month via one of these mail order distributors: https://rapidrxusa.com/products/dexcom-g6-sensors-3-pack https://rapidrxusa.com/products/dexcom-g6-sensors-3-pack Do your part as a consumer and shop around a bit to drive prices down... good luck!
- protomolecule 3y ago
  Could you elaborate why Abbot's Freestyle Libre is worse?
  - user_7832 3y ago
    As someone using a freestyle Libre 2, I’m also curious. From what I know, I think the main reason is that the Libre needs NFC vs the Dexcom’s Bluetooth… except that Abbott recently updated (!!) the software and now Bluetooth works at par as the dexcom. Some people have better sensitivity with one or the other I agree, but both are fairly solid. The Libre is smaller though, so I prefer that.
  - sebdei 3y ago
    I would definitetly recommend the Dexcom G7. As I come from the libre3 I have to say that the G7 overall feels more sophisticated, yet alone the overpatch they send with each sensor will help keeping the sensor on my arm. In the past the libre3 often just fell of during my swim training. Further, libre3 is often just not supported by third party apps or pumps or other. They do not provide an official API, that might be helpful for tracking your clucose. Back in the days I used and contributed to https://github.com/timoschlueter/nightscout-librelink-up https://github.com/timoschlueter/nightscout-librelink-up to periodically fetched my sensor data from librelink and stored it my nightscout, that runs on my server at my home. That helped a lot, but it was more than a hack.

mlsu 3y ago

I assure you: commercial players are working very hard on this. The difficult part is actually power management. There are clearly very sophisticated algorithms that can do no meal announce closed loop management of t1d (just google scholar "closed loop type 1" -- it's a very popular problem for control systems researchers). But they take a lot of power. Embedded convex solvers for large MPC schemes do not come cheap, especially when you want them running every 5 minutes! I have used this DIY loop system in the past. It is extremely power hungry and requires recharging daily, even when plugged in half the day. And I don't even think they are doing anything exotic like MPC. I stopped using it because of those battery issues and the implementation is gnarly -- it's basically a collection of bash scripts and relies on the operating system (armbian linux) to schedule doses. No RTOS, no watchdogs... Power management is extremely important in a pump. If a pump dies every <24 hours without being recharged, that impacts both the patient experience and can be very dangerous. If it dies overnight you get no insulin and you will be very sick the next morning. That said, I love that this is a thing. It pushes the tech forward and gets people excited about a machine cure, which is the only viable solution to "curing" type 1 at the moment.

ikekkdcjkfke 3y ago

A lot of talk about pumps. Is it possible to have caffiene on one of those pumps?

darkclouds 3y ago

Much rather increase my manganese intake, which maintains blood sugar levels, and slows the pancreas from releasing too much amylase which further increases the blood sugar levels causing the spike. Chromium to make my muscles sensitive to insulin also helps.

bimabet 3y ago

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black_13 3y ago

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dankle 3y ago

This is fucking amazing!! Love to see it, very interesting future for folks with t1d now, both re tools like this and new potential cures in the pipe.

drgo 3y ago

I am a physician, researcher and a programmer. Any one interested in collaborating to solve similar problems feel free to contact me: https://drgo.github.io/about/ https://drgo.github.io/about/

myshpa 3y ago

I know this article is about Type 1, but I'll post some links here in the hope that it might help someone. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399621/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399621/ Calorie restriction for long-term remission of type 2 diabetes https://www.nature.com/articles/s41574-019-0186-6/ https://www.nature.com/articles/s41574-019-0186-6/ Low-calorie diets in the management of type 2 diabetes mellitus https://www.diabetes.org.uk/guide-to-diabetes/enjoy-food/eating-with-diabetes/whats-your-healthy-weight/low-calorie-diets https://www.diabetes.org.uk/guide-to-diabetes/enjoy-food/eat... A low-calorie diet can be used to treat or manage type 2 diabetes according to research https://www.pcrm.org/news/news-releases/plant-based-diets-best-diabetes-prevention-and-treatment-new-review-scientific https://www.pcrm.org/news/news-releases/plant-based-diets-be... Plant-Based Diets Best for Diabetes Prevention and Treatment, New Review of Scientific Literature Confirms https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466941/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466941/ A plant-based diet for the prevention and treatment of type 2 diabetes https://www.telegraph.co.uk/science/2016/03/14/type-2-diabetes-can-be-cured-through-weight-loss-newcastle-unive/ https://www.telegraph.co.uk/science/2016/03/14/type-2-diabet... Type 2 diabetes can be cured through weight loss, Newcastle University finds https://trevorklee.substack.com/p/obesitys-relationship-with-type-2?s=r https://trevorklee.substack.com/p/obesitys-relationship-with... Obesity's relationship with type 2 diabetes is really weird https://www.youtube.com/watch?v=lSwL73evUdA https://www.youtube.com/watch?v=lSwL73evUdA Diabetes Reversal and Weight-loss with Neal Barnard, M.D. https://www.youtube.com/results?search_query=bernard+diabetes https://www.youtube.com/results?search_query=bernard+diabete...

recursinging 3y ago

I had a close friend with T1D who asked me to help him set up, and dial in a closed loop APS about two years ago. I took a deep dive into it and found it to be much, much more complicated than the PID type regulation I was expecting it to be. Plus, if I made a mistake, he might die. So I declined out of fear. Unfortunately he did die just last March, alone in his apartment after slipping into a coma. His pump kept right on pumping him straight to his grave because the feedback loop of the system required human intervention, even if the human is incapacitated. I wish I would have taken the risk, and I do hope this complicated, but solvable problem will be, and the solution made available to those who need it.

tectonic 3y ago
That’s horrible, I’m sorry for your loss.
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quiet_wolf 3y ago
I am really sorry for your loss. I know you want to blame yourself but you could have just as easily killed them setting up the loop as well. Plus with no one to maintain the system they would have likely run into many issues. It isn't a system to be set up or maintained by those who aren't willing to dedicate a lot of time and understanding at this point and who are not technically inclined. For most T1D the best prevention if you can afford it is still a CGM(which you need for the loop too) and making sure your low alert system works and you have another person connected to your data in case you are incapacitated with their low alert system set up. I'd also love to see this hooked up to EMS eventually too. Unfortunately for many people the cost of a CGM or getting insurance to cover it is the prohibitive factor though. I really hope this part of the equation changes someday soon. Source: Partner of T1D

stevezsa8 3y ago

My wife is a Type 1 diabetic. Here is some interesting complexity: She has a continuous glucose monitor on her body that tells the insulin pump how to dose her basal insulin. Basal insulin is the background dose that you have continuously delivered. At night, if she sleeps on the part of the body with the sensor, the blood sugar reading will be lower than actual. So the pump stops insulin and starts beeping an alarm. No big deal, she just gets up and does a finger stick blood test to check for a false positive. About half the time it will be a false low-blood sugar measure. A related issue is that when you first insert the sensor, the blood sugar reading is way off until the body calms down at the insertion site. So long story short, I think we need better continuous glucose monitors to prevent potential wild see-sawing when there are two opposing meds, as with the insulin-glucagon combo.

maximegarcia 3y ago

I’m T1D. For me, the main thing keeping at being good at the closed loop system is delay. In the pancreas, « measure » and delivery happen at the blood level. It is instant. With CGM and pen or pomp insulin delivery, it is in the superficial higher layers of the skin for which you have 15min delay to and from blood.

icedchocolate 3y ago

My biggest fear around this is that these solutions incentivise the biggest pharma companies to stop researching actual cures. I don’t want to have to deal with these devices, I just want it dealt with.

DavideNL 3y ago

Two perhaps interesting links on this topic: 1. A recent blog post about the DIY topic: "How to help people on open-source automated insulin delivery systems?" https://www.diabetotech.com/blog/how-to-help-people-on-open-source-automated-insulin-delivery-systems https://www.diabetotech.com/blog/how-to-help-people-on-open-... 2. Inreda: “A bi-hormonal fully closed loop system”: https://www.inredadiabetic.nl/en/home-english/ https://www.inredadiabetic.nl/en/home-english/

nayzer 3y ago

I've always wondered if it's possible to develop similar tech for Parkinson's patients. I don't think we're able to determine the dopamine level of an individual today. But say we can, wouldn't we be able to infuse the right amount of levodopa into a patient's body, and thus reducing their off time?

Aerbil313 3y ago

Haha. You found the 'solution' for diabetes? The solution for diabetes, heart diseases, tension problems, and all thousand other components of metabolic syndrome is a complete ban on added sugar and HFCS in all goods. Not talking about type 1 diabetes obviously.

Jarmsy 3y ago
This is a thread about T1D. Your comment is not relevant.