[HN Gopher] A DIY 'bionic pancreas' is changing diabetes care
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A DIY 'bionic pancreas' is changing diabetes care
Author : sohkamyung
Score : 336 points
Date : 2023-08-30 12:32 UTC (10 hours ago)
(HTM) web link (www.nature.com)
(TXT) w3m dump (www.nature.com)
| jimkleiber wrote:
| 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 wrote:
| 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/ 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 wrote:
| 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.
| nimish wrote:
| That's incredibly impressive. Medical device approval for
| anything novel is very hard.
| ikekkdcjkfke wrote:
| A lot of talk about pumps. Is it possible to have caffiene on one
| of those pumps?
| GiorgioG wrote:
| 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/ and has been recently given the
| green light by the FDA.
| dghughes wrote:
| Off-topic but that is a very old Samsung phone shown at least
| seven years old in the image at the linked article.
| Someone wrote:
| The second photo has a subtitle "An example of an early OpenAPS
| set-up from 2016".
|
| Chances are the first photo is equally old.
| nahsra wrote:
| 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 [2]
| https://www.thejdca.org/article/2023/06/05/fda-approves-beta...
| TaupeRanger wrote:
| The only way to "cure" diabetes is to replace the pancreas or
| get the cells to go back to behaving the way they were before
| insulin resistance. The 1st is incredibly risky and wouldn't be
| pursued for that reason. The 2nd is most likely to lead to a
| cure, using a morphoceutical approach that reprograms or
| replaces the misbehaving cells.
| jeroenvlek wrote:
| 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 wrote:
| 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.
| uberduper wrote:
| I may be misunderstanding something here. I'm assuming the
| emergency you're referring to is low glucose. Why would you
| use a shot of glucagon rather than a dextrose tablet for that
| sort of emergency?
| db3pt0 wrote:
| A glucose tablet and a glucagon shot can both be used in
| emergencies, but they are best used to treat different
| levels of emergencies. You can take a glucose tablet if
| you're coherent and conscious, but when you're incoherent
| or passed out from a severe hypoglycemia, someone else
| administering a glucagon shot is a lot easier and safer.
| cperciva wrote:
| Glucagon should probably be a safety net, not something you use
| regularly. Taking too much insulin and compensating with
| glucagon leads to long term weight gain among other things.
|
| Dual pumps are being worked on, but it's not yet clear that the
| improved glucose control justifies potential long term
| consequences.
| jablongo wrote:
| For some background - I'm a T1D working on a search engine and
| conversational interface for integrating a bunch of new data
| sources and models into metabolic decision making:
| https://replica.health. I've also been a user of and worked on
| various open source artificial pancreas systems through the
| years, and am currently on Loop.
|
| >I would have thought by now they'd have hacked 2 patch-pump
| AIDs to work simultaneously.
|
| As you pointed out, the problem is not really hardware. It
| could technically be done in a straightforward way using two
| independently controlled insulin pumps, but the complexity and
| risk of the whole operation goes way up if you are taking way
| more insulin. Taking a bunch of insulin and glucagon at the
| same time is not necessarily a great idea either - they don't
| just annihilate each other without consequence and you could
| end up with secondary effects like gaining a bunch of weight.
|
| >Because this feels like a holy grail / functional cure
|
| Unfortunately it is not; even dual hormone systems have
| problems keeping up w/ the kinetics of glucose absorption and
| to address this there is also research into tri-hormonal
| systems, w/ amylin as the third hormone. In any case you will
| still need some a-priori info about meals and planned
| activities, though less so than with a single hormone system.
| Integration of exogenous data sources to provide this info to
| the APS is what we are working on at Replica.
|
| Also, hate to be the bearer of bad news but beta bionics has
| shelved their dual hormone ambitions for now; their prototype
| device soon to be released is insulin-only. On the bright side
| there is a small Dutch company whose tech predates beta-
| bionics. They sell a dual hormone device and will give it to
| you for a ton of $ (and probably have you sign a bunch of
| waivers): https://www.inredadiabetic.nl/en/discover-the-ap/
| Communitivity wrote:
| So I do not have a medical background. I have however worked
| a number of Industrial Control Systems (ICS) projects, and
| what you describe kind of sounds like a PID control loop,
| which also is not a simple push up/down approach.
|
| From Wikipedia:"A proportional-integral-derivative controller
| (PID controller or three-term controller) is a control loop
| mechanism employing feedback that is widely used in
| industrial control systems and a variety of other
| applications requiring continuously modulated control. A PID
| controller continuously calculates an error value e(t) as the
| difference between a desired setpoint (SP) and a measured
| process variable (PV) and applies a correction based on
| proportional, integral, and derivative terms (denoted P, I,
| and D respectively), hence the name."
|
| Getting PID control loops to work has a lot of research
| behind it, but it's still hard to get right with new
| hardware. I would imagine a PID control loop involving
| organics (wetware) would be much order, and harder still a
| PID control loop in organics with life-threatening failures
| possible.
| jablongo wrote:
| At this point all the major solutions are using an
| algorithm that would probably fall under the umbrella of
| "Model Predictive Control" rather than a vanilla PID
| controller. An absurd spate of patent trolling occurred
| back in the early 2000s related to Controller definitions
| like these though. Researchers patented the use of a "PID
| controller in artificial pancreas systems" [1][2] which
| slowed down the development of APSs by many years.
|
| The way the Supreme Court recently changed patent law [3]
| for software has definitely had a positive effect for APS
| development. [1]
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769814/ [2]
| https://patents.google.com/patent/US20150306314 [3] https:/
| /en.wikipedia.org/wiki/Alice_Corp._v._CLS_Bank_Intern...
| tremon wrote:
| _An absurd spate of patent trolling occurred back in the
| early 2000s related to Controller definitions like these_
|
| That's good news, right? That means that everything that
| people now come up with has well-documented prior art?
| idiotsecant wrote:
| PID works well for most industrial controls, but it's a
| blunt instrument. Its mainly valuable because it's simple
| and doesn't really require much knowledge of the plant to
| implement. No 'model' is really required, other than the
| vaguest knowledge of first order dynamics. Instead of model
| knowledge you just iteratively tune it until it works.
|
| If you need a really optimal control trajectory minimizing
| or maximizing for some parameter, you are willing to do the
| system identification necessary for it to work, and you
| don't much care whether an electrician can understand how
| it works model-based controls are much better. as
| /u/Communitivity mentioned so called 'model based control'
| (which is an umbrella of techniques) is a much more
| powerful tool.
| agawish wrote:
| Sorry I know this is off topic, but I'm a recently diagnosed
| T1D and I would like to get more information about Loop and
| other loop-like open-source systems.
| wombatpm wrote:
| My son is T1D since age 7. He is now on the OmniPod pump
| and the Dexcom G6 sensor. It's been a very effective
| combination that's covered by insurance. The challenge with
| the open source projects is limited equipment that can be
| hacked.
| haldujai wrote:
| > In any case you will still need some a-priori info about
| meals and planned activities
|
| Not necessarily, at least not via patient input. In the
| albeit small Inreda studies manual announcement of exercise
| and meals wasn't required (or an option). Medtronic also has
| a meal prediction algorithm on their newest offering that's a
| step towards a fully automated process and currently more or
| less obviates carb counting but isn't at the point where you
| don't have to announce a meal (yet).
|
| Rather than integrating external data sources the algorithms
| are predicting based on historical glucose levels and/or
| insulin administration and it seems to be working.
|
| https://jamanetwork.com/journals/jamasurgery/article-
| abstrac...
| nahsra wrote:
| I think the "no meal announcement" features are really
| valuable for traditionally underserved demographics who,
| for whatever reason, can't "get good" at managing their
| disease.
|
| The difference between how quickly food and insulin hit
| your bloodstream make it seem like there is no way to
| "algorithm your way out of" meal announcements. Food hits
| almost immediately, and with variable strength depending on
| macronutrients in it, and insulin takes ~15 minutes to
| start working, and peaks at 1 hour, with no concern about
| BG levels. Can you square these 2 for me and make it make
| sense?
| haldujai wrote:
| I think what you're missing for this to make sense is
| what is the desired outcome. For type 1 diabetics there
| are three important ones:
|
| 1. Time in severe hypoglycemia - ideally 0%
|
| 2. Time in severe hyperglycemia/diabetic ketoacidosis -
| ideally 0%
|
| 3. Time in euglycemia (also called time in target) -
| clinical target is >70% and for reference the median
| healthy non-diabetic is in target ~90-95% of the time.
|
| Closed loop systems are very good at #1 and #2 as it
| takes a while for levels to get to the severe state and
| insulin can be administered (or withheld) based on CGM.
|
| When we talk about algorithming out of meal announcements
| it's whether historical patient-specific blood glucose
| levels and insulin administrations (i.e. a prediction of
| what you eat and when) combined with CGM can keep #3
| acceptable, not necessarily optimal. Medtronic is using
| this approach and their newest model more or less
| eliminates the need for accurate carb-counting but they
| still require meal announcements. The hope/idea is that
| this can potentially be eliminated in further iterations.
|
| Another important thing to keep in mind which is
| sometimes lost in these discussions is that we don't
| treat numbers we treat patients (i.e. what are the
| clinical outcomes). Generally speaking, we assume the
| closer to normal the better but we don't have actual data
| about how much an extra X% outside of target ranges
| matters in terms of clinical outcomes and complication
| rates. We only really started getting this data with CGM
| and complications in these mild states would require very
| large cohorts and long (10-20 year) follow-ups to detect
| differences as they're likely to also be mild.
|
| So while you're absolutely correct regarding the
| limitations and that an algorithm cannot outperform
| accurate carb-counting and meal announcements the missing
| piece is that it may be sufficient. Particularly if said
| algorithms result in improved time-in-target for patients
| who aren't good at managing their diabetes and find meal
| announcements cumbersome.
| jablongo wrote:
| Agree that patient input shouldn't be necessary, but to
| replace it we will need to include other inputs besides CGM
| in a systematic way to get the optimal results. My company
| is working on how to use contextual info automatically
| collected by your devices to help (detected activity,
| measured calorie burn, geofencing, data from meal-ordering
| apis, etc.). This is especially true given that the CGM
| data themselves are lagged due to averaging and/or kalman
| filtering going on under the hood. This is a fundamental
| problem; Inreda uses two identical CGMs for noise reduction
| purposes just so they can get clean data with less of a
| lag.
|
| None of the systems claiming you don't have to do anything
| in terms of meal announcement are _working_ in the sense of
| achieving euglycemic parity, which should be the goal. I
| can say with certainty that the cgm logs from people who
| don't announce meals on the Inreda device do not look like
| they are from non-diabetics: there are still often large
| post-prandial spikes. Inreda likely does better than any
| single hormone system, but the problem is not solved in any
| sense.
| haldujai wrote:
| > Agree that patient input shouldn't be necessary, but to
| replace it we will need to include other inputs besides
| CGM in a systematic way to get the optimal results.
|
| I'm not going as far as to claim Medtronic's approach (I
| believe the only one commercially available with so-
| called meal prediction based on historical CGM and offers
| full correction boluses) is the optimal one, just that it
| is an approach that is at least very good (~80% time in
| target) and while it still requires meal announcements
| it's just the first step of what they're trying to do.
| Clearly we can expect further iterations of these
| algorithms as the technology matures.
|
| > Inreda uses two identical CGMs for noise reduction
| purposes just so they can get clean data with less of a
| lag.
|
| Just giving an example that this is possible without
| external input or data, your statement was that you will
| need a-priori information which is not necessarily the
| case. Whether such a system is optimal is a different
| question.
|
| I haven't seen the raw data and highly doubt enough of it
| even exists for anyone to make a claim whether or not
| such a system can be optimized to the point necessary.
|
| > None of the systems claiming you don't have to do
| anything in terms of meal announcement are _working_ in
| the sense of achieving euglycemic parity, which should be
| the goal.
|
| For clarity to any less knowledgeable readers while time
| spent in euglycemia is a very important outcome measure
| it cannot come at the expense of severe hypoglycemia or
| severe hyperglycemia/diabetic ketoacidosis (i.e. an
| algorithm that improves euglycemia to 95% but has a 2%
| severe hypo time is less acceptable than 80% euglycemia
| and 0.5% severe hypo.)
|
| To my knowledge no system on the market/generally
| available right now is claiming to be completely input
| free. The closest to my knowledge is again the MiniMed
| 780G discussed in my first point which will assuredly be
| iterated on.
|
| Also to be clear I'm not being dismissive of what your
| company is working on, it's a very interesting and novel
| approach. It may even be necessary to achieve the optimal
| product. I look forward to reading about your results
| when you publish them. I'm just presenting alternatives
| and a brief overview of what other approaches are for HN
| readers who are likely unfamiliar with the topic being
| discussed.
| jablongo wrote:
| Really appreciate the pointed commentary on this! Happy
| to make further prognostications about the success of
| CGM-input-only APSs via email.
|
| For the record, when I say "Euglycemic Parity" what I
| really mean is a sort of Turing test (not time in range),
| where a data-driven Endocrinologist is asked to tell the
| difference between CGM records from a non-diabetic, and
| CGM records from a diabetic equipped with some control
| system. Passing this test should be our long term goal
| IMO and we will probably have to bring many techniques to
| bear to eventually achieve it.
| nahsra wrote:
| > https://replica.health
|
| Oh my gosh, this is the startup I considered starting last
| year when this issue became personal to me and I wrapped my
| brain around the complexity of insulin dosing.
|
| There are a lot of challenges here but we absolutely need an
| external "brain" to correlate many data points, some trends,
| and reasonably estimate current insulin sensitivity.
| jablongo wrote:
| I'd love to chat - send me an email at sam@replica.health .
| An accurate time-varying insulin sensitivity model is one
| of our big projects.
| selimthegrim wrote:
| I formerly used to work in the diabetes management space,
| and I too would be interested in chatting seeing as I
| have acquired some modeling expertise in the meantime.
| gitfan86 wrote:
| This is awesome. The obvious next step here would be
| integration with the pump to send the correct dose after the
| user confirms the app is correct in the food they are eating
| samstave wrote:
| You know what cyberpunk future I am looking forward to ; Bionic
| Arms/Limbs whi are chosen to be replaced, but in the place of
| the bicep is a blood filtering, monitoring mechanism that keeps
| your blood hyper oxygenated and tracked...
|
| Although, to go along with the cyberpunk theme ; If you want to
| kill a Cyborg, you just rip off his arm...
| smoldesu wrote:
| It's fun to imagine a future where we _can_ design human body
| parts better than our body but _can 't_ figure out how to
| unplug them without a mess. Damn Magsafe patent still holding
| up in 2077...
| iaresee wrote:
| > Is the problem that there is no hardware for dual hormone
| pumps?
|
| All the well-tested pumps (Tandem, Omnipod, Medtronic) are
| insulin-delivery only.
| haldujai wrote:
| It's not because of pump issues but more glucagon stability
| and secondarily whether bihormonal is clinically
| advantageous.
|
| Tandem is working on a dual chambered pump.
|
| https://diatribe.org/jdrf-and-tandem-diabetes-care-
| announce-...
| iaresee wrote:
| Yea, but "working on" is a bit different than "readily
| available and trusted to function well". Everything is
| harder with two delivery pumps.
| nahsra wrote:
| Yes, but the "patch pumps" like the Omnipod are small enough
| you think patients might tolerate 2 of them? Maybe they've
| already asked, and people wouldn't tolerate it.
| iaresee wrote:
| Possibly. But it's more than that. You have site issues,
| even with one pump, that you need to navigate. There are
| only so many viable places on a body to attach a cannula
| for good absorptoin and, while small, these things aren't
| _tiny_ (especially the Omnipods where the site holds the
| cannula, pump and reservoir).
|
| It'll be a while before we see highly reliable and well-
| tested dual-reservoir systems is my bet.
|
| The complexities of balancing insulin and glucagon in a
| two-pump system are also high. And the feedback loop from
| sensors that detect BGL aren't super fast. My kid's Dexcom
| works on a 5 minute sample loop now. So you can't make
| decisions fast and when you do, you can't course correct a
| bad decision quickly.
|
| I love that people are working on this stuff. The folks at
| https://wearenotwaiting.net/ are amazing and we even use
| NightScout here, but the fragility of the systems are stark
| and it'll be a ways to go before it's not just the brave
| pioneers pushing these frontiers for T1Ds.
| haldujai wrote:
| No, there isn't a hardware problem and such systems exist.
| Several trials[1-3] dating back several years have looked at
| "bionic pancreas" or a closed loop bihormonal system.
|
| Inreda (a Dutch company) has a CE-marked device[4] that can be
| clinically used but one limitation has been glucagon stability
| (has to be replenished daily). Tandem in the US was working on
| this as well but I haven't heard anything about them in a
| while, not sure how far along they are.
|
| The Inreda product is still in the early stages of testing but
| fully functional. Small crossover trials seem promising
| (defined by more time in euglycemic state).
|
| There is a competing approach with "intelligent insulin" or a
| self-regulating glucose sensitive insulin formulation that has
| different bioavailability depending on circulating glucose
| levels rather than relying on a monitor, this is farther out
| from clinical use.
|
| One of the reasons bihormonal pumps haven't entered mainstream
| use yet is that it's more expensive/complicated and the current
| techniques of algorithmic predictions of hypoglycemic episodes
| and insulin delivery suspension are already very good that hypo
| isn't much of a problem with modern devices like Tandem's
| offering.
|
| Medtronic has added a meal detection algorithm[5] that's really
| good too (the best on the market I'm told by my endo
| colleagues) and they say we're getting close to not needing
| meal announcement anymore, this practically eliminates carb
| counting. It's the first such algorithm to be in clinical use
| so we're not there yet but the expectation is that this
| approach will get us there.
|
| The question (for glucagon) then becomes how clinically useful
| more time in euglycemia is as the hypo episode problem is
| essentially solved, we'll need more data to draw any
| conclusions and it will take a while for this particular
| question as many of the outcome measures are long-term (i.e.
| what are the long-term sequela of mild intermittent
| hyperglycemia, it's somewhere between nothing and uncontrolled
| diabetes but how far along on that line is the billion dollar
| question).
|
| [1] https://pubmed.ncbi.nlm.nih.gov/28007348/
|
| [2] https://jamanetwork.com/journals/jamasurgery/article-
| abstrac...
|
| [3] https://pubmed.ncbi.nlm.nih.gov/24931572/
|
| [4] https://www.inredadiabetic.nl/en/discover-the-ap/
|
| [5]
| https://www.medtronicdiabetes.com/products/minimed-780g-insu...
| nahsra wrote:
| It's not clear from their site whether the Inreda product
| also has CGM built into it, or if it must be paired with one?
|
| Glucose-responsive insulin also seems like science fiction as
| this point, but would be extremely powerful tool.
|
| I'm very familiar with one of the most popular, closed-loop
| system combinations in the USA and I definitely don't feel
| the hypoglycemia problem is anywhere near "solved". There is
| too much volatility dictating a person's insulin sensitivity
| that even today's smartest systems will regularly give too
| much insulin, requiring treatment, or too little, resulting
| in prolonged hyperglycemia.
|
| I agree that time-in-range is incredible today with the
| technology, comparatively, but there's still lots and lots of
| room for improvement.
| haldujai wrote:
| Inreda integrates the CGM, [1] has more details on the
| setup.
|
| > I'm very familiar with one of the most popular, closed-
| loop system combinations in the USA and I definitely don't
| feel the hypoglycemia problem is anywhere near "solved".
|
| I should have been clearer, the moderate to severe
| hypoglycemia (level 2 and 3) problem is essentially solved
| with the newest generation of closed loop systems.
| Hypoglycemia in general is trending towards being solved
| particularly with the newest Medtronic devices, both from
| studies and what endocrinologists are seeing.
|
| In some of the recent studies (which again are still small
| as these devices are new) I've come across there are no
| severe hypo episodes reported and % time in moderate
| hypoglycemia was (picking one study) ~0.3%[2].
|
| The belief is that further iterations of these algorithms
| will continue to improve this hence why I said "solved" as
| in there is no strong need for a large treatment paradigm
| shift on the basis of moderate-severe hypoglycemia.
|
| > There is too much volatility dictating a person's insulin
| sensitivity that even today's smartest systems will
| regularly give too much insulin, requiring treatment, or
| too little, resulting in prolonged hyperglycemia.
|
| Hyperglycemia is a different discussion altogether that is
| not addressed by insulin delivery suspension or glucagon.
| The MiniMed 780G is probably the most advanced system out
| there with minimal patient input and time in target range
| is being reported as ~80% which is certainly getting there.
|
| [1] https://diabetesjournals.figshare.com/articles/figure/F
| ully_...
|
| [2] https://www.nejm.org/doi/10.1056/NEJMoa2004736?url_ver=
| Z39.8...
| DoreenMichele wrote:
| There's a lot more going on in the body than this. Muscle
| protein influences insulin resistance. Diabetes is strongly
| associated with inflammation which may imply that infection or
| pH balance (or both) plays a role. For functional hypoglycemia,
| metabolic syndrome and T2D, dietary changes can have
| substantial positive impact.
|
| I'm thrilled to see this is happening, but the chemical inputs
| and various metabolic factors are far more complex than "sugar
| in, one hormone to lower blood glucose levels and another to
| correctively raise it."
| brudgers wrote:
| My assumption is that the DIY Pancreas community is well-
| informed, technically capable, and highly motivated.
|
| My guess is it hasn't done what you suggest for practical
| reasons related to supply chain, intended user base, and
| practical engineering considerations appropriate for high
| reliability mechanical design for medical use.
|
| For example, the insulin delivery system has many points of
| failure. Any fault or failure is likely to have severe health
| impacts on the user. To a first approximation, doubling the
| number of pumps doubles the points of failure.
|
| But I could be wrong.
| awaywethrow wrote:
| My worry with this approach has been that infusion sites (both
| for insulin and glucagon) can become occluded, pulled out, etc.
| to suddenly render them completely ineffective, and that
| automated detection of these scenarios is not great.
|
| You need to move forward, and therefore must occasionally have
| a foot on the gas (insulin). The gas pedal failing, causing you
| to stop moving forward, is not urgently dangerous
| (hyperglycemia). However, if your brakes (glucagon) can
| sometimes fail completely, that could cause you to die almost
| immediately if you're moving too fast toward danger (extreme
| hypoglycemia). Given this situation where brakes are
| unreliable, do you want your automated control system to rely
| on them and push you to dangerous speeds?
| haldujai wrote:
| > However, if your brakes (glucagon) can sometimes fail
| completely, that could cause you to die almost immediately
|
| Failure detection is via alarms to trigger patient action
| based on the continuous glucose monitor (which has a
| different set of reliability issues) as well as patient
| symptoms.
|
| Hypoglycemia becomes symptomatic long before blood sugar is
| low enough to result in death or serious debilitation and T1D
| patients know their symptoms well. The risks are not nearly
| as dramatic as you're suggesting as one isn't/shouldn't be
| relying on glucagon to prevent severe hypoglycemia, I don't
| think any system is designed or being conceived to operate in
| such conditions.
|
| Hypoglycemia isn't really much of a problem anymore with
| current CGMs and pumps.
| pigeons wrote:
| > Hypoglycemia becomes symptomatic long before blood sugar
| is low enough to result in death or serious debilitation
| and T1D patients know their symptoms well.
|
| There is a what seems to be a significant number of people
| who don't "feel their lows."
|
| > Hypoglycemia isn't really much of a problem anymore with
| current CGMs and pumps.
|
| Current CGM's can still require hours of "warm up", and
| many current pumps still must be removed for things like
| swimming so they don't get penetrated with water.
| haldujai wrote:
| > There is a what seems to be a significant number of
| people who don't "feel their lows."
|
| Severe hypoglycemia to the point of what was described
| (death) is not reported in any of the recent device
| studies.
|
| Level 2 or moderate hypoglycemia, very different from
| death, is reported at < 0.5% in recent closed loop system
| studies.
|
| > Current CGM's can still require hours of "warm up", and
| many current pumps still must be removed for things like
| swimming so they don't get penetrated with water.
|
| Current CGMs are water resistant but conveniently one is
| also not administering insulin while swimming either. The
| bionic pancreas is also dependent on CGMs and has the
| same limitations.
|
| I'm really not sure what point you're getting at.
| Hypoglycemia is not what's being improved upon with
| current advancements, it's time in target.
| awaywethrow wrote:
| > Severe hypoglycemia to the point of what was described
| (death) is not reported in any of the recent device
| studies.
|
| Are there large-scale studies that show this for a dual
| hormone control algorithm (the context of this thread)?
| haldujai wrote:
| You seem to be misunderstanding how these devices work.
|
| Bihormonal pumps do not mean continuous infusions of both
| insulin and glucagon. The pumps pulse insulin when you're
| high and glucagon when you're low. They're not both
| administered at the same time or continuously infused in
| a "balanced state".
|
| The context in this thread:
|
| > However, if your brakes (glucagon) can sometimes fail
| completely
|
| A bihormonal system would not result in more insulin
| being administered than an insulin-only system for a
| given blood sugar, if the glucagon pump fails we would
| have an insulin-only system where we have plenty of
| safety data. There is no mechanism by which a bihormonal
| system has higher risk of hypoglycemia than existing
| closed loop insulin system.
| awaywethrow wrote:
| To clarify, the context of this thread / what I was
| originally responding to was:
|
| > In this case, you could be more aggressive in either
| direction of pushing BG, because you have a safety net.
| pigeons wrote:
| OK thanks, I get your points. What I was getting at is a
| disagreement with "Hypoglycemia isn't really much of a
| problem anymore with current CGMs and pumps." Because
| lots of people on current CGMs and pumps still deal with
| hypoglycemia, despite these pumps and CGMs making the
| situation so much better than otherwise.
| nahsra wrote:
| The detectability of failure is an excellent point. Anybody
| who uses the hardware can confirm it's not 100%. I think your
| point helps me re-frame the glucagon as more of an insurance
| backstop for when we accidentally hit the gas a little hard,
| rather than a permission slip to constantly be going too fast
| and constantly be slamming on the brakes.
|
| Even in this framing, it still feels like an extraordinarily
| valuable addition, and relatively low risk. It's also, of
| course, more to add to the patient's maintenance, but might
| help them or their caregivers sleep at night.
| awaywethrow wrote:
| > It's also, of course, more to add to the patient's
| maintenance
|
| I agree with all that you've said, and this point in
| particular is extremely important. It's also the reason I
| moved from a DIY system like the one mentioned here, to a
| commercial system, once the latter was available. There is
| simply less hardware and software to juggle with the
| commercial system. There are fewer knobs, bells, and
| whistles, meaning I might not be able to tweak things to be
| in as tight control as might be possible with a DIY system
| (though with risks!), but overall it's been "good enough"
| for me, and greatly reduces the cognitive burden of having
| T1D. My experience clearly doesn't match everyone's, but
| considering I'm typically someone who loves to tinker, and
| has plenty of T1D experience (engineer, 34 years with T1D),
| I'm sure I'm far from the only one that feels this way. My
| glycemic control isn't significantly better than it was
| when I did it via constant monitoring and mental math, but
| the cognitive and emotional burden is much lower.
| jablongo wrote:
| Yea you would need really good failure detection if you were
| going to "hit the gas" with a bunch of insulin. Part of the
| solution is going to be controlling risk via the dosing
| algorithm itself, so you never get in those situations where
| you are at risk of severe hypo in the event of a (glucagon)
| site failure.
| Projectiboga wrote:
| I'm a type 1 insulin dependent. The three low tech "hacks"
| I've been happy with are the following. First I take a
| sublingual Melatonin most nights, Melatonin upregulates the
| insulin receptors and lowers my insulin requirements about
| 40% by my guess. The second one is dietary I add olive oil to
| my lunch and dinner, I feel this provides my body a reserve
| of non glucose energy. Finally I use a very small dose of
| cannabis most days, I like to get a puff or two and night,
| THC protects nerve cells from Hypoxia so I feel this keeps my
| brain cells going when my blood sugar gets low. I feel these
| three things, give me a leg up on my long term blood sugar
| control. I am thankful there are hackers and diy opensource
| initiatives. The CGM readers here in America Dexcom, and
| Libre both have crazy bad user interfaces. Libre will only
| let you pair to a single device, I had their device fail
| leaving a functional sensor in my arm, a quick idea I
| searched for opensource libre reader app and found two. One
| worked and started reading the sensor. Dexcom has the issue
| of being a 10 day use cycle so you run out on varying days of
| the week. Both take the FDA mandate to have low blood sugar
| alarms as a blank check to overide any controls about sound
| or do not disturb to bother about countdown to a new sensor.
| I liked that external libre2 reader as it was the only device
| or official app that can be silenced, but their rigid only
| pair with one device still angers me, what if my loved one
| want's to be able to scan my sensor? Low blood sugars are
| challenging as they affect my brain and I can answer an
| amazing amount of questions about my blood sugar wrong if I
| get too low, my brain trying to preserve energy can be
| dangerous at times. This was an issue more before CGM. Dexcom
| decides that it is OK to have a completely automatic warning
| at any hour of the night "your sensor will expire in six
| hours!!!", that warning has little to do with my care as it
| is too late to influence refill compliance and seems to have
| been ordered by the executives to some how improve their
| pRofItiBiLiTY. I am so much happier on a third party app with
| the silent reader as an extra. Sorry if this was long winded,
| being insulin dependent has bee a challenge over 40 years.
| The first 10 years they hadn't figured out that insulin
| reactions are much more subtle on human insulin than the
| older pig and cow derived ones were.
| jacquesm wrote:
| 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 wrote:
| 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 wrote:
| 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.
| tracker1 wrote:
| The worst, is the couple times I've experienced
| ketoacidosis... always feels like a cold/flu at first, and
| only when I'm coughing up water do I stop to take notice. I
| keep a keto mojo in addition to my cgm and glocometer... if
| my glucose is elevated at all, and my ketones are as well,
| time to start hourly injections until in normal range... I
| have my cgm alarm at 70 & 240, only because it will fire
| off many times after eating if I don't and takes a while to
| settle (few hours).
|
| Definitely sucks having a broken metabolism. Wish I could
| go back to my 15-20yo self and totally stop consuming most
| processed food, seed oils and sugars. It's sad that a
| glucose tolerance and resting insulin tests aren't
| normalized since a1c won't start slipping until years
| later.
| jacquesm wrote:
| It's a huge problem. On the plus side though: there is an
| absolute mountain of information about this disease and
| there is substantial funding poured into getting it
| further under control. The holy grail (and artificial
| pancreas like a pace maker) is still a long way off. But
| substantial improvements have been made in the last
| decade and a half and I expect that trend to continue for
| a while.
|
| What I love about this story is that the DIY community
| managed to break the log-jam of the manufacturers and the
| regulatory authorities by simply providing them with
| proof that it _can_ work and can work reliably enough to
| be allowed on the market. That shortcut probably shaved
| at least a decade (possibly more) off the progress
| charts. Manufacturers were (to some degree rightly so)
| antsy about closed loop systems because it would require
| them to assume much more liability than they are normally
| used to, the symptom- >diagnosis->action loop that you
| can engage in by close monitoring and patching together
| available systems cuts the human out of the loop: the
| system will function autonomously and a software error or
| hardware glitch has the potential to kill someone.
|
| So the manufacturers were effectively all waiting on each
| other to show that this can be done safely and that
| holding pattern had already lasted for multiple years. In
| the meantime, the larger manufacturers had some time to
| gain the upper hand over reliability and teething
| problems of the newer generation of pumps and those came
| together just in time with continuous monitoring to
| enable a big step forward in a very hacked (but fully
| functional) way. No single manufacturer would have taken
| that risk at this point in time without that push. But
| now that it is done they can't be left behind either or
| they'll lose market share rapidly.
|
| It's a pity that there are not more diseases (at least,
| not that I'm aware of) that would benefit from this
| approach, diabetes is unique in that respect.
|
| Best of luck there. By the way: if you want to stay
| current with the developments in this field the best spot
| to look for is the announcement of trials, and sometimes
| the calls for volunteers for such trials.
| bimabet wrote:
| Hai
| xyzal wrote:
| 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...
| diydsp wrote:
| Neat, but GPS is harder to spoof.
| Forge36 wrote:
| My first thought was this sounded like Tasker. From that link
| it looks like a similar concept with workflows focused around
| insulin pumps.
| lolc wrote:
| For me, those features were always very gimmicky. When you
| arrive at the gym, you should've set the basal rate lower at
| least an hour ago. So it's not going to help unless you stay
| for multiple hours.
|
| The meal detection mentioned is similarly lagging behind. For
| people who don't manage to tell their APS when they eat carbs,
| yeah it helps, but the outcome is not comparable to dosing
| before you eat.
|
| I also found the calibration features to be too fiddly. Between
| sensor noise, sensor offset, and calibration, when they try to
| adapt the situation already changed.
|
| I guess these features work better with a very regular
| lifestyle, which I lack :-) And while I don't like having to
| micro-manage some aspects, like carbs, I appreciate that
| AndroidAPS reduces my mental load quite a bit and enables
| living days that are never the same regarding exercise or
| meals.
| tracker1 wrote:
| I'll say, one thing I really appreciate about the fad aspects
| of Keto as a diet, is that there are a lot more low carb
| options out there. Of course, ymmv with various fiber
| varieties and low/no calorie sweeteners in practice. Makes it
| a little easier to keep carb load minimal. I still do far
| better sticking to eggs, meat and greens, but it's hard to
| do.
| lolc wrote:
| Can relate as I lived borderline keto for a while. That was
| nice as my sugar was very stable. Then I decided carbs are
| nicer.
|
| And sure, sweeteners are the better option for drinks.
| Still prefer my dessert with some sugar.
| DoingIsLearning wrote:
| 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 wrote:
| 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.
| DoingIsLearning wrote:
| But this is the mitigations I am asking in terms of risk
| management. Perhaps people using the app can comment if any
| of this is already implemented?
| nshepperd wrote:
| I have an AndroidAPS. This is how it works. If the phone
| loses contact for any reason the device just falls back
| to delivering insulin at a fixed rate as normal.
| birdman3131 wrote:
| 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]
| rexreed wrote:
| 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.
| appleflaxen wrote:
| 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 wrote:
| 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 wrote:
| 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.
| rexreed wrote:
| Definitely what is needed is better early detection but I
| know that's a can of worms of its own. I commented on the
| bionic pancreas article as I know it's not a solution to
| pancreatic cancer, but I'm hoping that continued research in
| this direction evolves into better diagnosis and cures.
| abraxas wrote:
| Not to scare you more but that covers just about any metastatic
| cancer.
| lemper wrote:
| thanks, that's really reassuring.
| sgt101 wrote:
| 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.
| NoMoreNicksLeft wrote:
| 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 wrote:
| The misuse of that particular term of art should probably be
| pointed out to the author.
| drgo wrote:
| 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/
| nshepperd wrote:
| > 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 wrote:
| 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.
| lolc wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| 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.
| darkclouds wrote:
| 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.
| liamzebedee wrote:
| 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
| logicallee wrote:
| 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 wrote:
| 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
|
| Do your part as a consumer and shop around a bit to drive
| prices down... good luck!
| protomolecule wrote:
| Could you elaborate why Abbot's Freestyle Libre is worse?
| user_7832 wrote:
| 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.
| protomolecule wrote:
| I picked Freestyle Libre after asking around a few
| endocrinologists (60 euros for a sensor that lasts two weeks),
| but curious what others have to say.
| [deleted]
| epilys wrote:
| 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.
| jablongo wrote:
| > - 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! 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.
| jcims wrote:
| 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.
| heuermh wrote:
| 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 wrote:
| I love my omnipod/dexcom combo so much.
| jacquesm wrote:
| 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/
| jcims wrote:
| That's amazing to hear. Thank you!
| mlsu wrote:
| 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.
| epilys wrote:
| 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 wrote:
| That's the one she had. It's been a few years, maybe they
| have fixed it.
| jacquesm wrote:
| 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.
| mecsred wrote:
| 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 wrote:
| 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.
| jcims wrote:
| Thanks for the suggestion! She's 20 and living at school so
| I have limited influence over her diet. She's pretty much
| raising a middle finger at her diagnosis right now out of
| spite and frustration so it's a tricky situation. I've
| asked her to try to find a community that caters to
| diabetics at school (i know one exists but i tell her to
| join it it will not work) to feel less alone about the
| whole thing.
|
| It just sucks all around.
| photon_lines wrote:
| Ohhh I see and my apology for the misunderstanding!!
| Either way - she's still young and she has plenty of time
| to figure it out. If not - one other recommendation I
| have is getting lab tests done every 3 to 6 months and
| going for regular check-ups with a doctor. If you find a
| good doctor - they can make a big difference in getting
| patients to notice bad HB1C measures and can talk with
| her about keeping them in check and why it's so important
| to keep blood sugar levels within normal range. Either
| way - I wish her a lot of luck and my offer still stands
| if she (or you yourself) need any help or advice :)
| milesvp wrote:
| 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 wrote:
| 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.
| GiorgioG wrote:
| 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.
| sgt101 wrote:
| My daughter is on 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...
| mlyle wrote:
| 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 wrote:
| 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?
| photon_lines wrote:
| There isn't much of a difference between injecting insulin
| (being diabetic) or getting your body to produce it. The main
| difference lies in having no automated mechanism for
| regulating blood sugar levels. Due to this - you have to
| calculate the correct amount of insulin you need for your
| meals and measure your blood sugar regularly to make sure it
| stays within balance. If your blood sugar levels tend to be
| higher than normal (i.e. you aren't injecting enough
| insulin), that isn't good. It is OK in the near term - but
| can be devastating in the long term due to health
| complications (i.e. blindness / nerve damage / etc..). If
| your blood sugars are fall too low - you can have severe
| consequences in the near term (i.e. die or have a seizure
| within 1 hour of injecting insulin). In other words - you
| need to always keep your blood sugar in check in order to
| survive and to be in good health. Some people find this
| extremely hard to do - some people like me embrace it.
| epilys wrote:
| 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 wrote:
| 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 wrote:
| 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.
| haldujai wrote:
| There are faster acting insulins creatively named "faster
| aspart" and "ultra rapid lispro" with the latter
| beginning to appear in the bloodstream at 2 minutes and
| reaching 50% effect around 20 minutes.
|
| With that said the difference between CGM/pumps and the
| human body's mechanisms of blood glucose regulation is
| not purely due to pharmacokinetics, regulation of blood
| sugar is very complex and we still don't fully understand
| them but there are multiple hormones and factors
| affecting blood glucose regulation.
|
| As one example some incretins are released in response to
| ingested food content and stimulate insulin secretion
| before blood glucose levels rise. We can't replicate that
| just by measuring blood glucose (not that we necessarily
| have to).
|
| The homeostatic mechanisms of the human body are
| fascinatingly complex.
| kaliqt wrote:
| CGM circuit systems do auto-handle spikes. The systems are
| getting better.
| gustavus wrote:
| 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 wrote:
| 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.
| thereikiway wrote:
| Fantastic. Anything to successfully move forward progress, even
| with bumps along the way, and not rely on the creaking behemoth
| of the useless fda
| dankle wrote:
| 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.
| black_13 wrote:
| [dead]
| myshpa wrote:
| 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/
|
| Calorie restriction for long-term remission of type 2 diabetes
|
| 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/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-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/
|
| A plant-based diet for the prevention and treatment of type 2
| diabetes
|
| 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...
|
| Obesity's relationship with type 2 diabetes is really weird
|
| 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+diabete...
| mlsu wrote:
| 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.
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