[HN Gopher] The Unreasonable Math of Type 1 Diabetes
___________________________________________________________________
The Unreasonable Math of Type 1 Diabetes
Author : grahar64
Score : 631 points
Date : 2022-02-17 18:33 UTC (1 days ago)
(HTM) web link (maori.geek.nz)
(TXT) w3m dump (maori.geek.nz)
| ineedasername wrote:
| Insulin pumps can significantly improve ease of managing this,
| and are even used with toddlers. They also offer much fiber
| control than the 0.5u delivery mechanism the author is using for
| manual injections.
|
| My wife switched to a pump many years ago and it was, instantly,
| a life-changing experience, granting a level of freedom she had
| never had before. (Instant being roughly 2 weeks of adjusting to
| a different insulin delivery schedule)
| mleonhard wrote:
| City of Hope Medical Center is developing the PIpepTolDC "inverse
| vaccine" to treat Type 1 Diabetes and other auto-immune diseases
| [0]. They have had two successful trials in humans [1, 2]. The
| third trial is recruiting adults with T1D onset 1-4 years ago
| [3].
|
| The PIpepTolDC treatment is expensive because it is labor
| intensive. A technician must take some of the patient's blood,
| isolate their immune cells, replicate the cells, desensitize
| them, and then inject them back into the patient. BioNTech is
| developing a new category of treatments for auto-immune diseases
| [4] which should be inexpensive injections. These should include
| a treatment for Type 1 Diabetes.
|
| Frankly, this tech seems amazing and ready to cure many diseases.
| The pace of development seems slow. I wish there were some way to
| speed it up. About 80,000 children develop T1D every year.
|
| [0] https://www.precisionvaccinations.com/type-1-diabetes-
| vaccin...
|
| [1] https://doi.org/10.1126/scitranslmed.aaf7779
|
| [2] https://doi.org/10.1016/S2213-8587(20)30104-2
|
| [3] https://clinicaltrials.gov/ct2/show/NCT04590872
|
| [4] https://investors.biontech.de/news-releases/news-release-
| det...
| not2b wrote:
| My wife developed type 1 diabetes as an adult (40s) from an
| autoimmune disease (it attacked her thyroid as well). At first
| her pancreas still had a bit of function left, which made things
| even harder because there would be unknown random extra insulin,
| so the only way for her to manage was to eat ultra-low carb and
| not very much, so she lost a ton of weight. She actually did
| better once her pancreas no longer produced insulin, because then
| the calculations all type 1 diabetics must do would actually sort
| of work (and I emphasize "sort of", for all the reasons explained
| in the articles and comments) and she could eat a bit more
| normally.
|
| A problem not mentioned in the article is that the different
| insulin formulations that are supposedly in the same category
| (fast acting vs basal) have somewhat different curves, and our
| insurance company keeps making her switch formulations depending
| on whatever is cheapest this month, and whenever she switches the
| calculations are off so she suddenly has to deal with more highs
| and lows.
| consp wrote:
| > insurance company keeps making her switch formulations
| depending on whatever is cheapest this month
|
| That's batshit insane... Around here generics are now available
| for short acting insulins but while they should be the same
| they are not (ballpark maybe) but insurance is allowed to force
| cheaper if equivalent (according to them). My physision is
| writing force prescriptions the insurance has to obey since
| switching will be bad for the patient with the only benefit
| going to the insurer.
| styeco wrote:
| What a great article. Like many commenters here, I was completely
| oblivious to the struggle and I appreciate it a lot more now.
| shanselman wrote:
| I've been a type one diabetic for over 25 years, I've been
| looping with an artificial pancreas for over eight years, and
| never has an article so perfectly described the immense cognitive
| load that we have to deal with every waking hour (and a lot of
| non-waking hours) as this article. This is the canonical
| explanation now that I will send non-diabetics
| davidthewatson wrote:
| Your write-up was well-constructed. Thanks!
|
| I will add a few things just to raise awareness, if it hasn't
| been raised already. I apologize if I missed something in my
| reading.
|
| I'm the kid whose diagnosis was at a time when we didn't have
| fingerstick glucometers, human synthetic insulin, or any of the
| myriad of modern medical approaches to ameliorating the effects
| of living with T1D. Five decades later I can offer some insight
| having survived that long with reasonably well-managed T1D while
| making mistakes with diet, exercise, and insulin and learning
| from those mistakes. I've also worked in medical devices and
| healthcare so it's not all n=1. I am the lucky diabetic, FWIW.
|
| It's all about executive function in the end. And you can read
| below how the disease may impact executive function.
|
| A diabetic beneath a certain threshold of blood glucose may seem
| to be operating in the lizard brain, particularly with respect to
| what may seem like an addiction when he eats an entire quart of
| ice cream in a single sitting, alone. To make matters worse,
| these thresholds, just like ISF and CR are dynamic, day-to-day.
| One day, the kid's functional with a BG of 60 and may feel and
| behave terribly with a BG of 80. This is hard to describe to
| someone who thinks that the whole thing is linear. Quite the
| converse. There are points where these changes can feel like
| falling off a cliff. Having had an IV of insulin once, I can tell
| you that the adrenalin rush is like falling off a cliff - nor far
| from the insulin shock therapy scene in "A Beautiful Mind".
|
| I owe a debt of gratitude to the researchers who ran the DCCT[5]
| when I participated in the mid 80s. Most of what I know I learned
| from the world-class researchers from that team and being treated
| at some of the best pediatric diabetes clinics in the US.
|
| I lost a brother-in-law to T1D at an age younger than I am now,
| so I understand the emotional impact of the disease and what it
| can do to damage us in ways beyond our comprehension. It's a
| family sensemaking operation, for sure, because much of what
| you'll hear seems apocryphal but there is a wisdom that accrues
| from managing a disease like this without losing your mind.
|
| 1. Nicolas Bolo's research at Harvard demonstrates that there is
| a correlated relationship between changes in blood glucose and
| the brain's default mode network. [1,2] 2. Insulin is synthesized
| locally in the cerebral cortex. [3] 3. Exercise can raise blood
| glucose (in addition to lowering it) depending on the pre-
| exercise feeding and insulin load, the implication being glycogen
| release, fat burning, and anaerobic activity. [6]
|
| It's early for a child but from my experience, prefer fat burning
| to carb-loading as most of the research supports. [4]
|
| Also, while I appreciate the hope and forward-looking perspective
| of many of the companies involved in making solutions to these
| problems, we should be careful not to give false hope. There is
| no question that a child diagnosed now will fare better than one
| diagnosed without the same technology and access to care - that's
| provable from HbA1c data.
|
| However, there are serious issues, for instance, in what happens
| when a closed loop system runs into the fact that interstitial
| subcutaneous fat measure as a proxy to actual blood glucose is
| imperfect - particularly at the edges of sleep and exercise,
| where the draw on fat stores (due to Somogyi effect during sleep
| and or fat-burning during exercise, respectively) can result in
| poor data veracity from CGMs that is not at a clinical standard,
| resistant to calibration, and treated by the industry as if its a
| PR problem that is dealt with best by crisis management, when
| it's got to be taken as seriously as calibration in a self-
| driving car, because that's what it is - self-driving diabetes.
| An insulin pump and a CGM want to be called "autonomy" when they
| get beyond the endless MVP, but we're not there yet.
|
| How do I know this? Nearly every sensor I've used since September
| 2021 has failed catastrophically and been replaced under
| warranty. I'm wearing two competing brands this very moment just
| to cross-calibrate beyond my fingersticks.
|
| So when I say failed catastrophically, there are myriad problems
| there, but the big ones are reporting a high BG when BG is
| actually low, or vice versa. The false high when low can result
| in an insulin overdose, and the false low when high can result in
| DKA. Imagine either of those situations happening while the
| patient is running a marathon, and you have a rough idea how
| these device can produce experiences that start to resemble the
| reasons we study Therac 25. [9]
|
| So, I'm hopeful for young diabetics that they can enjoy the
| nearly disease-free days that I have more life-long, perhaps with
| less round-the-clock hypervigilance and what seems like an
| unintentional PhD in metabolism, tech, and pharmacology.
|
| Just remember, most of what we are treating here is a side effect
| of exogenous insulin. Minimize exogenous insulin and you minimize
| the side effects. Minimize side effects and the patient reports
| less inflammation, better energy, better performance of both
| brain and body, etc. Literally everything improves with less
| insulin, much like we see in the general, non-diabetic population
| around the development of type II diabetes with insulin
| resistance. In that regard, the two researchers to keep an eye on
| going forward are the Denise Faustman's Lab at MGH [7], and
| Valter Longo's Lab at UCLA [8].
|
| Hope my ranting, raving, and rambling help someone somewhere.
| Please forgive me, the sensors are having a rhetorical dialog
| about blood glucose data veracity and its impact on healthcare.
| There's still lots of work to be done.
|
| [1]
| https://diabetesjournals.org/diabetes/article/60/12/3256/144...
| [2] https://www.youtube.com/watch?v=UwL_iMLbm1k [3]https://link.s
| pringer.com/article/10.1007/s00125-016-3996-2#.... [4]
| https://www.levelshealth.com/ [5]
| https://www.niddk.nih.gov/about-niddk/research-areas/diabete...
| [6] https://www.virtahealth.com/ [7]
| https://www.faustmanlab.org/clinical-trials/ [8]
| https://www.longolab.org/ [9]
| https://en.wikipedia.org/wiki/Therac-25
| aktau wrote:
| Thanks for the post! I read
| http://cureresearch4type1diabetes.blogspot.com from time to
| time and that author does not give such glimmering summaries of
| the work that Dr. Faustman is doing (and has been doing for a
| long while). I don't really know of another voice on this
| subject. So I'll ask if you've got the time: what do you think
| about the blog authors evaluation and prospects of this
| research path?
| GiorgioG wrote:
| Sugarmate is a fantastic app/service that will call a phone
| number with an automated message if your Dexcom CGM falls below a
| certain threshold. It's allowed my wife and I to sleep a tiny bit
| better knowing if our son's blood sugar goes low that we'll be
| woken up. Not affiliated, just a happy user.
| mrcwinn wrote:
| I love this post so much. I'm very grateful for the time the
| author spent writing it. Thank you!
|
| My dad was Type 2 before he passed. My wife and father-in-law are
| both Type 1. They both use a Dexcom and an InPen to help regulate
| insulin.
|
| What's striking about the chart "42 Factors that affect Blood
| Glucose": There are so many items influencing on this chart that
| my wife's Dexcom has no information on. Sunburn? Altitude?
| Hydration levels? The Dexcom is completely oblivious to these
| factors.
|
| It seems like there is a better model that would do a better job
| of suggesting insulin levels, but if anything it's input-
| constrained right now.
| rob_c wrote:
| Now if only these companies could be encouraged to avoid creating
| products destined for the landfill needing people to reverse
| engineer them just to recharge them.
|
| https://github.com/jakebenz/cgm is also related
| 1auralynn wrote:
| My younger brother was diagnosed with Type I when he was 4 and
| I've always thought I had a pretty good handle on how tough
| having diabetes must be. I recently had gestational diabetes when
| I was pregnant and boy was I wrong. It's TOUGH. Particularly
| getting a handle on glycemic indices. I will say it turned me
| into a huge proponent of massive amounts of protein and fiber in
| my diet (but kinda turned me off Thai food :/ )
| kettleballroll wrote:
| > I will say it turned me into a huge proponent of massive
| amounts of protein and fiber in my diet (but kinda turned me
| off Thai food :/ )
|
| Why?
| Trasmatta wrote:
| Protein is low carb. Fiber is a carb that doesn't impact your
| blood glucose, because your body doesn't break it down. Thai
| food is heavy on noodles and rice, which are both very high
| carb.
| valarauko wrote:
| Isn't this true of essentially most cuisines though, to be
| carb rich? Indian, Chinese, Mexican, Italian, French, etc -
| the typical diet in most places is heavily skewed towards
| carb in general. It's a matter of adjusting the ratio of
| protein-rich foods vs carbs within that cuisine to your
| needs.
| 1auralynn wrote:
| Different carbs affect people differently, but for me
| rice was a big no no, whole wheat was OK, and corn was
| great (whew!).
|
| So, Thai was pretty bad, Chinese not much better but you
| can find less sugary dishes. Indian was actually pretty
| good as long as I didn't gorge myself: The fat in the
| dishes helps slow down the sugar absorption so you don't
| get the extreme spikes, and you can pair it with a whole
| wheat roti instead of rice. Mexican was GREAT cause, corn
| + beans (beans were the best!! so much fiber and protein,
| barely any spike when eating them). Italian is ok as long
| as you make it yourself with whole wheat pasta and eat
| lots of meat and cheese. French is good cause they have
| lots of meat-focused dishes. The best meals for me were
| like a pork chop or steak, greens of some kind, and
| quinoa or whole wheat mac n cheese or polenta.
| pimeys wrote:
| Protein does have an effect for your glucose level. Just
| comes after a few hours as a nice surprise. And fat makes
| the insulin work worse, combine the fat with protein and it
| is quite complex to understand why your glucose is going up
| 3 hours after eating.
|
| Oh, add some carbs to your protein and fat. Like a steak
| with creamy sauce and french fries. All the insulin you
| think is good is not enough.
| 1auralynn wrote:
| Lots of rice-centered dishes (rice has an especially high
| glycemic index), usually a ton of added sugar (pad thai,
| curries), sugar-based dipping sauces.
| [deleted]
| mikenew wrote:
| Awesome write up, but one thing I still don't understand; why is
| hypoglycemia such a big part of the problem? If insulin is your
| body's way of moving glucose out of your bloodstream and T1D
| means that lever is broken, why do you so often end up with too
| little blood glucose? Is it just because of overestimating the
| insulin dose? Or is there some other factor; i.e. does
| glyconeogenesis not work properly or something along those lines?
|
| If the problem is that the pancreas can't produce insulin, I
| would have thought something like a ketogenic diet would make it
| easier since you would have less of a need for insulin, and
| therefore less guesswork trying to counteract the blood sugar
| spikes from a high carb meal. But it sounds like bringing blood
| sugar up is a big part of managing T1D, so I'm just wondering why
| that would be the case for a diabetic but not for a non-diabetic.
| sgmoore wrote:
| > But it sounds like bringing blood sugar up is a big part of
| managing T1D, so I'm just wondering why that would be the case
| for a diabetic but not for a non-diabetic.
|
| If you think of insulin as moving the glucose out of your blood
| stream into a storage area, eg your liver, then, when a normal
| person's blood sugar goes low, their body stops producing
| insulin and at the same time dumps some glucose from storage
| (eg the liver) back into the blood stream.
|
| But if I have injected some insulin, the insulin will still be
| working and I can't just tell it to stop. So even if my liver
| tries to help me by dumping glucose into my blood stream, the
| injected insulin will try to move it back! So it is harder and
| takes longer for my blood sugar to rise on its own.
|
| Hence non-diabetics can increase their blood sugar levels when
| needed, but that is a lot harder for diabetics who are on
| medication.
|
| The biggest problem that I find controlling my BS levels, is
| not overdosing, but dealing with the unexpected. For example,
| taking insulin before a meal and then dropping my dinner plate
| and then trying to find something similar that I can eat
| quickly or getting an important phone call and being
| interrupted before I get a chance to eat. Or maybe just getting
| stuck in traffic and missing a meal.
|
| Keto/low carb diets seem to work better for non-insulin
| dependent diabetics who are producing some insulin, just not
| enough. I think most Type 1's would still need some
| (significant) amount of insulin even on a keto diet, so the
| hypo problem still exists.
| Trasmatta wrote:
| > why do you so often end up with too little blood glucose?
|
| Managing the balance between insulin and BG is normally an
| automatic process performed by the endocrine system. A person
| whose pancreas stops producing insulin now has to manage that
| careful balance consciously, which introduces the possibility
| for errors. And it's complicated even more by all the factors
| that can influence BG in either direction (see the chart in the
| OP).
|
| A healthy body is very good at managing that balance
| automatically through complex feedback loops. Those feedback
| loops break down if the body can no longer produce insulin on
| its own.
|
| > If the problem is that the pancreas can't produce insulin, I
| would have thought something like a ketogenic diet would make
| it easier since you would have less of a need for insulin
|
| Some T1Ds absolutely do go on a ketogenic diet, or at least a
| low carb one. You still need insulin, just less of it. Because
| you still have to dose yourself with insulin, you still have
| the risk of hypoglycemia on a low carb diet. (Sometimes even
| more of a risk, because your insulin resistance typically goes
| down on those diets.)
|
| That being said, there are T1Ds that have a lot of success with
| keto / low-carb. Just don't believe anyone who says you can
| cure T1D with that diet. T2D can sometimes be reversed that
| way, but _never_ T1D.
|
| > But it sounds like bringing blood sugar up is a big part of
| managing T1D
|
| It's less about "bringing blood sugar up" and more about
| balancing the blood sugar on the edge of a thin blade. Tipping
| in either direction is bad.
| fortran77 wrote:
| The majority of people with "Type 2" _who are also obese_
| would be asymptomatic (i.e., "remission") if they went down
| to a healthy weight. (Type 2 patients who are not overweight
| or obese aren't so responsive to diet.)
|
| https://www.diabetes.org.uk/guide-to-diabetes/managing-
| your-...
|
| It's almost like there should be a different name for the
| disorder people get who are obese who develop Type 2
| diabetes. Maybe "Type O" diabetes?
| idealmedtech wrote:
| In short, severe hypoglycemia is an immediate risk to your
| life, and prolonged hypos <50mg/dL can lead to brain damage,
| especially in infants or people who don't have a lot of
| reserves.
|
| Gluconeogenesis still happens, but an insulin overdose can tank
| your blood sugar much faster than your liver can keep up.
| intrasight wrote:
| I am rooting for new non-invasive monitoring to succeed.
| dddiaz1 wrote:
| I am also a T1D.
|
| This post was a great summary of the constant mental juggling
| that happens when you have T1D. After almost 25 years with it,
| the cgm has been the biggest technological leap for management,
| but the mental aspect is critical too. I highly recommend seeking
| out groups where you can meet other T1D parents, because that
| will be a huge help! Seeing people who understand what you are
| going through, and can help talk you through situations, or heck,
| just be an informed listener can be huge! :)
|
| I participated in JDRF as a kid, went to Diabetes camp (which I
| highly recommend!), and now participate in a young adults t1d
| group where we meet once a month for appetizers and drinks (pre
| covid, now we meet virtually).
|
| When I am not doing those things, I also like to write and do
| projects around t1d. Here I write about converting a day's worth
| of cgm data into sound: https://dddiaz.com/post/glucose-sound/ or
| here I write about using my health-kit data from my apple watch
| and combining it with my Dexcom data to try and create a ML
| algorithm that can predict which days I exercised.
| https://dddiaz.com/post/glucose-datascience/
| ciceryadam wrote:
| Late blooming (LADA) T1D here.
|
| I think that CGMs are a great quality of life improvement. I have
| Abbott Freestyle Libre's prescribed by my diabetologist every 3
| months, and they work well with Glimp[1] and any android phone
| with NFC - the app has nice statistics that really correlate with
| glycated haemoglobin (HbA1c - long term sugar level indicator)
| results from my checkups. You can (and should) calibrate the CGM
| results with prick tests in the Glimp app as well.
|
| It takes a long time testing what kind of carbohydrates work the
| best for you - how high / how fast your blood sugar levels rise,
| and how long they stay high. You have to keep yourself as close
| to the ideal range as possible, while are literally trying out
| every available carb in the pantry. I've tested all kinds of
| carbs to find out that potatoes and chickpeas are fine, and that
| rice is forbidden in my diet. So long kimchi fried rice, I will
| miss you.
|
| [1] -
| https://play.google.com/store/apps/details?id=it.ct.glicemia
| sarusso wrote:
| Beware of apps like Glimp as the Freestyle Libre gone trials
| with its own, proprietary algorithm. I saw studies reporting a
| difference between Glimp and the official Libre HW reader (or
| App) where it turned out to be off by quite a lot..
|
| Moreover, as far as I know Glimp is a closed source App (even
| if free) and no one except the developers has a clue about how
| they treat data inside it.
| giantg2 wrote:
| Sorry to hear that. Onset at that age must be really tough.
| go_blue_13 wrote:
| >A CGM can cost $400 a month
|
| What in the world? $5k a year? How on earth are those things so
| expensive? 2 fully spec'd macbook pros per year? Surely they
| aren't that complex. Am I missing something?
| Nition wrote:
| I know this doesn't change your point, but note that it's
| $400NZD -> ~$270USD.
| parrellel wrote:
| Medical equipment rules and price gouging. More medical
| equipment standards for the CGMs. More price gouging for the
| now $300+ vials of humalog.
| grahar64 wrote:
| They are entirely disposable. The transmitter lasts 3 months
| and the sensors last 10 days. I read something about the FDA
| requiring the sensors be forced to not work after 10 days,
| because they were worried about infections.
| go_blue_13 wrote:
| Interesting, so it really is a subscription cost as well
| x0x0 wrote:
| Consumables -- that go into your body, and hence are expensive
| to manufacture -- are a big chunk of that cost.
| idealmedtech wrote:
| They're not enormously complex from a hardware perspective, but
| the sensing element is really hard to get right. Interference
| from a whole host of common drugs (including ibuprofen) can
| really mess up one's signal. Not to mention the regulatory
| moat; many medical device startups die on the vine working for
| regulatory approval, or looking for funding for expensive human
| trials (which quickly get into the millions or tens of millions
| for a Phase II/III trial)
| i_cannot_hack wrote:
| > A hot bath or shower can raise (then lower) BGL.
|
| I suspect the author has come to this conclusion from CGM data,
| and therefore also that it is wrong (or at least not a very
| significant effect).
|
| I also have T1D, and CGMs like Freestyle Libre (and probably also
| Dexcom) includes a temperature sensor and adjusts its readings
| based on the external temperature to increase accuracy. I think
| the changes in blood sugar levels during hot showers (etc) is
| probably due to the sensor not adjusting quickly enough to the
| rapid change in temperature, and not a physiological response.
|
| For example, if I go directly from room temperature to my cold
| balcony, the CGM value will immediately make a huge jump upwards
| with the next reading, but then quickly revert back down again
| within the following readings. Considering the 15 minute lag time
| between plasma glucose and the interstitial readings of the
| sensor, its unlikely the sensor is immediately measuring a change
| in plasma glucose - it's simply (over)reacting and adjusting to
| the new temperature (since the thermometer won't have such a long
| lag time).
|
| Very hot environments, such as a hot sauna, also makes my CGM
| readings completely inaccurate.
| grahar64 wrote:
| Cheers for pointing this out, a few others have as well. I have
| updated the post to reflect the "measured BGL" increases:
|
| > A hot bath or shower can raise (then lower) the measured BGL.
| This might be an incorrect reading, so may be dangerous to
| treat.
|
| I think the reason why this is a problem is less concerning
| than someone correcting after a hot shower based on faulty
| data.
| heisenzombie wrote:
| Hm, I finger-prick test and have definitely noticed that
| getting in a spa or hot tub can do pretty serious things to my
| BGL. My hypothesis is that if I have any insulin-on-board, that
| the increased bloodflow causes it to be taken up more rapidly.
| I think this might include lantus.
| cadr wrote:
| I'm going to guess the G6 does _not_ have that correction,
| based on every shower every day :)
| i_cannot_hack wrote:
| According to [1] the G6 at least measures skin temperature,
| but it is unclear if it measures air temperature as well
| (which the Libre does). I also found a reddit thread [2] that
| indicates it's quite common to get drastic changes in
| readings during hot showers with Dexcom (probably G6 version
| based on the date), so you might be an outlier in that
| regard.
|
| [1] https://www.diabettech.com/cgm/high-temperatures-extreme-
| con...
|
| [2] https://www.reddit.com/r/dexcom/comments/eyq5h0/hot_and_c
| old...
| Trasmatta wrote:
| Another thing you have to be careful of: pressure on the sensor
| can drastically effect readings. This is particularly a problem
| if you sleep on your sensor.
| GrinningFool wrote:
| Ah that terrifying middle of the night sudden dive from 100+-
| to "LOW" that turns out to be compression...
| surfsvammel wrote:
| My thoughts on reading this article: 1. Damn. I'm so happy that
| my kids don't have to go through this. 2. This person is the
| perfect dad for this situation. If I was his kid, he is exactly
| what I'd want as my dad.
| nonplus wrote:
| @grahar64 You're doing a great job taking care of your son and
| navigating a scary reality. Thanks for taking the time to write
| this, it is now my #1 resource if anyone has questions.
| Hallucinaut wrote:
| Great write up. Definitely dispelled a few misconceptions I had.
|
| Kia kaha, mate
| spaethnl wrote:
| I think this article does a great job covering many of the
| difficulties of T1D.
|
| One component I think was under-emphasized is the fact that
| correction insulin doses are not based on what your current blood
| glucose(BG) levels are, but on where you predict they will be
| when the dose really starts taking effect.
|
| Take for example a current best case scenario of having a Loop
| system via a continuous glucose monitor (CGM) and pump:
|
| If you took a reasonable guess dose for a meal then check your BG
| levels after the meal, you may find that you have a steeply
| inclining graph. Here are two possible cases: A.
| You took a correct dose and the timings are slightly out of sync,
| but BG will eventually turn around. B. You under-dosed
| and will need to either take a correction dose, or wait a long
| time for the basal dose to fix it.
|
| It can at times be very difficult to distinguish between A and B,
| and guessing wrong has consequences. Futhermore, you won't really
| know which is the case until sometime later.
|
| If you are wrong about A then you did nothing, but really you
| needed to take an correction dose. You won't find out you were
| wrong for a while, in the meantime your BG is sky-rocketing.
|
| If you are wrong about B: then you over-dosed and are running
| low. How much did you over-dose? How many carbs should you
| consume to correct?
|
| Because your CGM only updates every 5 minutes, and typical rapid
| acting insulin takes about 20 minutes to really get going, this
| cycle can play out every 25 minutes or so until you have
| stabilized your BG. all while you may have unhealthy BG levels,
| and you may be Yo-yo-ing.
|
| This is very slightly mitigated by using an ultra-rapid insulin
| like Lyumjev, or Fiasp, which can get going in 15 minutes, giving
| you a tighter loop.
|
| It would be very helpful if: 1. ... CGM devices
| had options for more frequent updates during highs and lows.
| Tighter feedback loops could go a long way. 2. ...
| pumps could dose insulin and glucagon automatically.
| 3. ... there were even faster acting insulins. This is tough
| because most insulins are injected interstitially, which takes
| time for your body to absorb. Maybe an out-patient implantable
| pump that could inject intravenously would help? 4.
| ... there were BETTER INSULIN PUMP SOFTWARE for calculating
| doses. I have a Tandem T:Slim x2. I can tell it how many carbs I
| am eating. Only that. It doesn't count or learn from: proteins,
| fats, what kinds of carbs, or what specific ingredients are
| there, or their ratios. All of this can dramatically effect how
| quickly your BG rises, bringing you back to the original problem
| of guessing. It should be possible to select from a database of
| commercially available food and manually provided recipes.
| GiorgioG wrote:
| Yep - my 10 year old son has a x2 pump and a Dexcom G6.
| Hopefully the software starts to improve at a faster pace with
| smartphones becoming more tightly integrated:
|
| https://www.tandemdiabetes.com/landing-pages/remote-bolus
| spaethnl wrote:
| Yeah, I have been looking forward to that for a while. I'm
| hoping that if their app isn't flexible enough to do menu-
| based dosing that it will be possible to side-load my own app
| to do that dosing.
|
| As an aside, the OmniPod 5 was just released and already has
| App control[1]. The tubeless aspect of that is very
| attractive.
|
| [1] https://www.healthline.com/diabetesmine/omnipod-5-tubeles
| s-s...
| zippergz wrote:
| I mentioned it in another comment, but inhaled insulin does act
| much faster than injected insulin. Of course, one downside is
| that it requires manual dosing; it can't be managed by a pump.
| But it's extremely fast (and finishes quickly too), so you can
| get much closed to dosing based on current numbers (obviously
| you do need to anticipate a tiny bit, but it's drastically
| less).
| idealmedtech wrote:
| Re: 3, such technology did exist and was commercialized in the
| early 2000s, and was well liked by those who got to use it (htt
| ps://www.researchgate.net/publication/38063312_The_Implan...,
| but it had a host of issues that made it difficult to be widely
| viable, and ultimately it was discontinued.
| grahar64 wrote:
| Dexcom being able to send more frequent updates during a hypo
| would be nice, but not sure if it would offer anything other
| than noise. We just finger prick during hypos, because I want
| more immediate information.
| Trasmatta wrote:
| I'm a type 1 diabetic, and this was a helpful post at showing non
| diabetics why it is so. hard. Non diabetics typically think the
| difficult thing must be the shots and the finger pricks, right?
|
| Not really. The majority of diabetics get used to those things
| quickly (of course there are some of course that deal with a
| major major needle phobia that can make it even harder). The hard
| part is that it never ends. Almost every moment of every day,
| your brain has a background process running that's evaluating
| every decision in context of your diabetes. There are no breaks.
| Your prefrontal cortex now has to take the place of a previously
| complex and automatic bodily process. It's the last thing you
| think about when you go to bed and it's the first thing you think
| about when you wake up. It's what you think about when you want
| to go on a walk, are about to enter a meeting, go into an
| interview, get on a plane, take a shower.
|
| It's usually little things: "okay, where am I at now? which
| direction is it going? when did I last eat? do I have snacks
| ready? do I have enough insulin for the day? what if I start to
| go low during this meeting? should I pop some carbs and run high
| for this interview, so I don't risk a hypo partway through? why
| am I going low right now when I took the same dose I took
| yesterday for the same meal? why am I now skyrocketing for no
| discernible reason, I didn't even eat anything? shoot, I'm
| starting to hypo out of nowhere in the middle of this great
| conversation, which I now have to interrupt to eat a snack and
| recover for 15 minutes. I fell asleep with a perfect BG, but now
| I'm awake at 2AM half delirious because my BG fell all the way
| down to 50, and I'm in the kitchen shoving cookies down my throat
| because hypoglycemia activates a survival instinct to EAT
| EVERYTHING that's extremely hard to control, and I know that I'm
| gonna shoot all the way up to 250 shortly, which I'll have to
| treat with insulin, and I'm basically not going to get any sleep
| tonight".
|
| And then the math often doesn't make any sense. There are so many
| factors that effect it. One day the same number of carbs +
| insulin may make you go high, and the next low, because of other
| environmental factors. (See the "42 factors that effect blood
| glucose" chart in the post.) You're constantly having to adjust.
|
| I'm literally crying while writing this post, because it's so
| exhausting and it never ends.
| jacquesm wrote:
| Continuous delivery closed loop delivery systems are in the
| works, are they not?
| The_rationalist wrote:
| FalconSensei wrote:
| I wake up at the same time and eat the same thing every weekday
| morning. Still, my bg at noon will range from 3 to 12. This
| after having this thing for 17 years. Yeah, it's hard.
|
| Edit: On the 42 factors, during-sleep BG is either stable or
| up. For me it's either side or down (but occasionally up).
|
| I do have the 'pre-sleep' BG that usually goes down, right
| after brushing my teeth (is it post-brushing then?), which is a
| well-known factor on Reddit. Basically, doesn't matter if I'm
| going to sleep at 10pm or 1am. I check my BG, it's 8, arrow
| straight or even up (CGM indicates the trend). Brush my teeth
| and check again, 7 with arrow straight down to the floor :/
| dot1x wrote:
| A solution to this (from a non-diabetic) would maybe to always
| be eating a keto-like diet. It's not easy, but far easier than
| having to constantly juggle 100s of carb combinations.
|
| "Diet" might even be the wrong word, more like a lifestyle.
| berkes wrote:
| > a survival instinct to EAT EVERYTHING that's extremely hard
| to control
|
| T1 here too. The weird part about this, is that it happens
| while you are aware of it.
|
| My brain: "hey, you're doing it again. stop it. You know it'll
| end bad". my hand: "nope. here's more cookies".
| Sharlin wrote:
| And of course, those are both your brain. The self-aware
| rational parts just aren't always in charge (heck, I'm not
| sure if they're even in charge _most of the time_ , no matter
| what they would like to think).
| Trasmatta wrote:
| 100%. A minor low doesn't cause this reaction from me, but at
| a certain point the survival instinct kicks into gear so
| heavily there's almost nothing you can do until your BG
| starts to rise, even when you know you've overdone it.
|
| It's the real life experience of this Frog and Toad meme:
| https://i.imgur.com/YdSSscE.png
| lolc wrote:
| Eh, don't feel bad about the inevitable. My conscious self
| knows well to just count the carbs when I'm too low to
| behave. At least then I'll know how much insulin to dose when
| the curve ticks upwards again.
| spanktheuser wrote:
| It's just insane. I had no idea until Covid triggered the onset
| of type 1 diabetes in my niece. I was fortunate to spent time
| with her a year later. Her mother and father seemed to have
| aged a decade from the stress. I can only hope that the AI
| monitored artificial pancreas tech currently in testing is
| approved for general use soon. The cognitive load of monitoring
| and treatment is insane; the impact of any unanticipated
| variance so severe.
| csnover wrote:
| One of the scariest experiences of my life was going on a walk
| after lunch with someone who had T1D and miscalculated their
| insulin dose. They went from totally fine, to saying "I don't
| feel well, we need to head back", to sweaty and sheet white and
| barely conscious within just a few minutes. The terror I felt
| as we waited for the doors of the lift to open so he could get
| to his emergency food is burned into my brain.
|
| I'm ashamed that I spent so much of my life ignorantly thinking
| that diabetes was some nuisance like heartburn where you
| moderate what you eat and maybe take some medication, rather
| than the endless grind of counting units and risking your life
| every time you need to eat, or exercise, or sleep.
|
| I can't imagine living like that, and I'm so, so sorry to you
| and to everyone else that has no choice. A cure for cancer is
| often held up as the holy grail of medicine, but even cancer
| patients don't have to be perfect every day just to keep
| living.
| klipt wrote:
| > some nuisance like heartburn
|
| Unmanaged heartburn can lead to esophageal cancer, you
| shouldn't take it too lightly.
| alar44 wrote:
| ineedasername wrote:
| It seems like a valid side note that, similar to
| diabetes, other ailments also have hidden complexities.
| [deleted]
| Trasmatta wrote:
| Yeah, getting caught out somewhere without snacks and a
| looming hypo is one of my nightmares. I try to always,
| always, always have snacks on me (for a diabetic, this is
| even more important to have when you leave the house than
| your keys or wallet), but sometimes things happen, and you
| end up somewhere without anything. It's really scary, but the
| good news is that if there is anybody around, enough people
| understand at least enough about diabetes to give you
| something to eat if you start saying "I'm having a diabetic
| emergency, does anyone have anything with sugar?"
|
| The scary part is potentially getting caught out somewhere
| entirely alone and without an emergency snack.
| irrational wrote:
| I never thought about how being diabetic takes emergency
| preparedness to a new level. We saw people unexpectedly
| stuck for a couple of days in traffic because of snow
| recently. What if there is an earthquake and you can't get
| to somewhere with snacks? There are so many situations that
| could unexpectedly arise that could cut you off from food.
| If I'm cut off from food, I'll be fine for a few days. Not
| so much a diabetic. That's scary.
| ng12 wrote:
| Yep, very much. Most insulin pumps only cary a few days
| worth of insulin at a time so it's not uncommon to be
| heading home after work with only half a day of insulin
| left. That can quickly become a life-or-death situation.
| carlmr wrote:
| Kind of reminds me of the movie with Justin Timberlake
| where people trade lifetime, not money, because people
| live forever.
|
| I guess this is somewhat similar. Especially in places
| where your health insurance isn't a given.
| reddiky wrote:
| I always have 4 or 5 glucose gels in my car. My diabetes
| kit has a couple more. You learn pretty quick you need to
| be able to treat at least a couple of hypos by yourself
| paulcole wrote:
| > What if there is an earthquake and you can't get to
| somewhere with snacks?
|
| I'm a Type 1 diabetic (diagnosed in my 30s) and have been
| living with it for about a decade now. This really isn't
| a "what if" situation. I know what will happen. I will
| die or hopefully just become incredibly ill.
|
| It's not really scary at all.
|
| It's just something I live with and prepare for as best I
| can. The one thing that I've learned from living with
| Type 1 is that all you can do is make the best decision
| you can in any given moment. My favorite doctor told me
| that diabetes is a disease that is all about making
| decisions. So is life, I guess.
| liamwire wrote:
| Please forgive my ignorance, how is it possible that you
| lived until your thirties without knowing you have T1D?
| paulcole wrote:
| T1D can be triggered at any time in a person's life. It's
| autoimmune. Thinking of it as a childhood disease is
| outdated and (fortunately) most doctors are becoming
| aware of that.
| davidthewatson wrote:
| The really interesting thing is not that T1D diagnosis
| has erased the label for "Juvenile onset diabetes"
| because it can happen at any age, it's that those
| previously-thought-destroyed pancreatic cells that
| produce insulin, are actually continuing decades after
| disease diagnosis and can be "reactivated" via BCG or
| Valter Longo's FMD:
|
| "Identifying most people with T1D continue to secrete
| varying amounts of insulin and C-peptides for decades
| after initial diagnosis:
|
| https://www.healthline.com/diabetesmine/dr-faustmans-
| controv...
|
| See below for my deeper response on these and other
| issues:
|
| https://news.ycombinator.com/item?id=30382364
| reddiky wrote:
| diagnosed at 25, it happens :-/
| rthille wrote:
| My nephew was 22 when diagnosed:
| https://www.healthline.com/diabetesmine/charlie-kimball-
| diab...
| wellyousee wrote:
| Peak age of diagnosis is mid-teens with quite a sharp
| bell curve. But, it can develop at any age.
|
| It takes a genetic predisposition and a trigger - perhaps
| a virus? - for your immune system to start eating your
| pancreas' insulin-producing cells.
|
| The old labels of "juvenile diabetes" etc. are as
| unhelpful as the notion it's caused by obesity.
| MrFoof wrote:
| _> The scary part is potentially getting caught out
| somewhere entirely alone and without an emergency snack. _
|
| First thing I do every morning is A) put on pants B) put my
| keys and a tube of glucose tablets in my front pants
| pocket.
|
| You can probably guess the expensive way that became
| ritual.
| kelp wrote:
| My wife has t1d and when we were dating we backpacked the
| Lost Coast trail. She was pretty paranoid of bears, so made
| sure we didn't have any food in our tent and did a good job
| of hiding our bear canisters some place where any bears
| couldn't move them around if they got to them. She'd had a
| bad experience with bears pushing bear canisters off a
| waterfall.
|
| So she had a low in the middle of the night, in the middle
| of nowhere. She was still verbal, but barely, and sent me
| to get her some snacks out of the bear canisters. However I
| didn't know where she'd hid them. After looking in the dark
| for a while I had to go back to the tent and try to get
| enough of an explanation out of her to find the hidden
| canisters. Fortunately she was abele to give me enough
| context that I was able to find the canisters and get her
| something to eat.
|
| After that, I kept my own hidden stash of snacks in the
| tent and make sure she told me where the canisters were.
| mathstuf wrote:
| Oof. For finding my bearcan, adding conspicuity tape (the
| red/white reflector tape used on tractor trailers) makes
| them stand out like a beacon with a headlamp (which, so
| far as I know, bears have not learned to make use of). It
| also has adhesive good enough to stick to their slick
| plastic.
| kelp wrote:
| This is a great idea, thank you! If I can get myself into
| shape for it by late June, I'm going to try doing the JMT
| this year. This tip may come in handy. Thanks.
| imtringued wrote:
| Type one diabetes is an auto immune disease whereas type two
| diabetes is a symptom of the food industry, those are hardly
| comparable.
| jorvi wrote:
| > A cure for cancer is often held up as the holy grail of
| medicine, but even cancer patients don't have to be perfect
| every day just to keep living.
|
| Wow. There is no need to dismiss the plight of cancer
| patients in relation to that of diabetes patients.
|
| As a diabetic, if you go through the (granted, horrible)
| grind, you can be fairly certain you'll live for quite some
| time.
|
| If you are a cancer patient, even if you are currently in
| remission or even 'cured', you don't know if the cancer will
| come back. And if it will respond to the same treatment and
| if not if there is an alternative. Your survival timeline
| basically becomes one giant question mark.
|
| https://xkcd.com/931/
| kamens wrote:
| I don't think there was any dismissal of the awful
| seriousness of cancer. In my experience, those who 'know'
| T1D (via themselves or close family) tend to be _extremely_
| empathetic to the impact of most other health conditions,
| too.
|
| What I read in that comment about "being perfect every day"
| -- and what I notice about having T1D compared to the awful
| experiences of family w/ cancer -- is the distinction b/w
| experiencing suffering caused by some terrible external
| force (cancer) vs experiencing suffering that can be
| interpreted as caused by yourself. Or suffering for which
| it's always easy to partially judge yourself.
|
| The reason this post (notice even the 'defensiveness' in
| its title) resonates so much w/ those w/ T1D is because
| this condition presents one with non-stop, 24/7 complicated
| problems to solve w/ serious consequences...and yet, any
| time something goes wrong, it _still feels like it 's kinda
| your fault._ Like you made a mistake.
|
| That is a non-stop mental grind that is unique to T1D and a
| small set of diseases. The uniqueness certainly does not
| make cancer less awful.
| adhesive_wombat wrote:
| Not that it's a competition, but T1D can and does just come
| out of left field and fuck you over. Not only for
| annoyingly prosaic things like forgetting a Snickers in the
| car and passing out alone and never waking up, but also
| sudden cardiac death is an order of magnitude higher.
|
| I had cancer, it was shit, and yes, there's always a chance
| its not done with me, but at least the cause of death won't
| be "finally forgot a snack".
| sokoloff wrote:
| I had a "drunk" parked in the inside lane of the four lane
| road in front of my house one evening. He was just stopped in
| traffic and got out stumbling around. I was annoyed
| (naturally) and he handed me his phone. Whatever, dude; I
| don't want to talk to your friend right now. Somehow he
| insisted and his friend told me he was diabetic and to call
| an ambulance.
|
| I did, got him some OJ, and moved his car out of traffic. He
| went from incoherent and "drunk" to "seemed pretty OK" in
| just a couple of minutes before the medics even arrived. (He
| still took the ride, but it was none of my business at that
| point.)
| consp wrote:
| I've had the "are you drunk" comments a few times while
| hypoglycemic.
|
| I once walked home from work and apperantly didn't notice
| it, walked a few busy intersections and finally sat down
| somewhere where someone noticed me and called an ambulance
| who game me a glucose iv and everything was back to normal
| in a few minutes. So everything was still somewhat working
| and the "go home" signal was set but everything else was
| broken. Not everyone responds the same though and
| concerning cars I have at least some dextrose with me at
| all times and some in the car as well, as well as hidden at
| work and at home and in all my coats and backpacks and
| everywhere... OJ works quite well since it is readily
| available.
|
| They did teach my parents one thing when handeling people
| with hypoglycemia: never try to stop them from consuming
| your entire fridge. Motor control is lacking and a young
| adult can easilly hurt you badly if you try to intervene.
| mnw21cam wrote:
| One of the slightly scary things about T1D is that at
| first you get a weird feeling when your blood sugar is
| too low, and you can notice when that happens. But if it
| happens too often, those warning signs stop, and you can
| get into a really serious condition without noticing for
| yourself.
| pimeys wrote:
| A CGM, app like xdrip and a smartwatch to display the
| current glucose value, trend graph and insulin on body
| has completely removed these situations from my life. As
| people normally check the time, you'll be checking the
| glucose value when walking outside
| davidthewatson wrote:
| That's the glass half-full. If that works for you, then
| I'm happy that at least one of us has found a solution
| that works reliably.
|
| The glass half-empty is...
|
| I'd be much happier if I actually had an information
| device that I wore on my wrist that gave me all the data
| I need to manage T1D at a glance without igniting
| arguably the worst alert fatigue ever seen in healthcare
| when I have a smartphone, a pump, a CGM, and a watch
| which all go off in a discordant concert with one another
| with no clue that the other is alerting or any mechanism
| for stopping the noise save for turning off the device.
| In short, my wish is that the companies making these
| devices would give more care to the _design_ of the
| ecosystem around them, not just their individual device.
| I know, this is an emergent problem, but one that I've
| dealt with nightly at 3 AM when the devices go awry, not
| my diabetes, which is actually quite stable. The vast
| majority of my disease control and management issues
| arise from technology. Like insulin, it's the exogenous
| nature of the device that indicates there will be side
| effects, whether we design for them and manage them, or
| not. Unfortunately, patients pay with their user
| experience, all day, every day. There is no greater use
| case for the design of a killer app for the smart watch,
| i.e. wrist-worn information device, because I don't
| actually care what time it is. Rather, I'd be happy if
| the device actually made BG and related information the
| primary data currency of the device, not time. Time is
| actually secondary to the primacy of BG in this
| particular use case. I wear two watches to account for
| the fact that I need BG at a glance and the sensors for
| tracking exercise and metabolic impact. I've not seen a
| single device or interface that gives me what I want on
| one device at a glance without a byzantine UI.
| pimeys wrote:
| Here is what I have in my watch:
|
| https://i.imgur.com/Iv6V3ap.jpg
|
| Date, time, glucose graph, steps, pulse, time from last
| value, last glucose value, delta from previous value,
| current pump basal rate and units of insulin from the
| base.
|
| More than enough to understand your current situation.
| Battery life after few years of use about three days.
| arch-ninja wrote:
| The alert fatigue is _very real_; I have a dexcom and
| consistently see it:
|
| - mis-calibrate (first day's readings are garbage after
| new sensor insert)
|
| - UI on the app will sometimes mis-render by 10-15
| minutes. On several occasions I have been watching the
| graph while dosing, didn't see any change whatsoever
| after 30/45 minutes, and gave more insulin because of
| that information. 5 seconds later the screen changes and
| displays 15 minutes of BG going steeply down as I would
| expect, but now I have 2x the dose in me -_-
|
| While I'm swimming in sensor readings the actual impact
| on my treatment quality has been close to nil, but it
| does make the people around me feel better. I feel as if
| my ability to sense my own levels has worsened because I
| default to trusting the graph over how I feel.
| dreamcompiler wrote:
| He needed the ride. OJ solves the problem quickly but he
| could crash again unless he gets some slow carbs. He knew
| that.
| cleancoder0 wrote:
| I once took a 5 hour bike trip on an empty stomach. At some
| point I couldn't even turn the pedals. I had to lay on the
| ground, not feeling better even after half hour. I can still
| remember the feeling of eating some sweets. Felt like I was
| reborn. Can't imagine what it's like for T1
| stefan_ wrote:
| You weren't necessarily hypoglycemic, just low on glycogen.
| The former is a life threatening condition, the latter is
| more of a deep exhaustion.
| quickthrower2 wrote:
| is this like "the wall" marathon runners are said to
| experience?
| jfengel wrote:
| Yeah. Runners call it the wall; cyclists call it
| "bonking".
|
| I've been told that it can come on more suddenly and
| acutely for cyclists. As a marathoner I find that I feel
| it coming for several miles, which is tens of minutes.
| The activities are somewhat different so it's not
| impossible that they manifest differently.
|
| But the basic idea is similar. You've got so much readily
| available glycogen in the body, and when it runs out, you
| have to shift to a different metabolic pathway -- and
| your body starts sending up warnings that you are rapidly
| running out of reserves and must stop _now_.
|
| It's as much mental as physical at that point.
| dreamcompiler wrote:
| You were likely short of potassium too. This is why
| professional cyclists pack bananas for the ride.
| Trasmatta wrote:
| The interesting thing is that your BG levels may have
| actually been fine. Physical exhaustion doesn't necessarily
| lead to hypoglycemia in a healthy person. Hypoglycemia
| feels significantly different than just being hungry, for
| example.
|
| A bizarre phenomenon: feeling stuffed because you ate a
| huge meal, but having a hypo anyway. You don't want to eat
| anything because you're not hungry, but feel an
| overwhelming urge to stuff your face with sweets anyway.
| consp wrote:
| I worked in the university library and a few times a year
| we had girls studying for hours on empty stomachs (brains
| consuming glucose is a different process from normal).
| They usually felt dizzy, were bleak and confused and were
| sometimes sweating and usually came to ask for some OTC
| painkiller or something. Usually gave them some of my
| dextrose tablets and someone's lunch and almost always it
| was fine a few minutes later. I'm pretty sure they had
| hypoglycemia. Though for (us) diabetics hypoglycemia
| where we start feeling it isn a considerably lower blood
| glucose level than for most regular people so there is
| some difference in how far you are gone down the rabbit
| hole already.
| reddiky wrote:
| This necessity of eating after you overate but mis-
| treated is one of the worst feelings in T1. You know you
| screwed up and you know you're going to pay for it,
| because you'll probably spike later and you don't know if
| it is the big meal you just ate or the snack you ate to
| keep from going low first. I love pizza, my body hates
| pizza
| go_blue_13 wrote:
| well put. After swimming 10km on a empty stomach that first
| glass of chocolate milk and a banana were near psychedelic.
| Obviously not the same life threatening situation as a
| diabetic but I can imagine there'd be some similarity to
| the experiences
| gowld wrote:
| Now imagine what it's like for someone with T1D to live
| alone, if you haven't yet been to a funeral for that. Every
| single time you go to sleep is a roll of the dice.
| gruez wrote:
| >Every single time you go to sleep is a roll of the dice.
|
| Isn't that the case even if you have someone sleeping
| beside you? I suppose it mitigate some risk on the off
| chance that your partner wakes up and notices you're
| sweating or whatever, but what if they're sound asleep?
| Does someone who's high/low on blood sugar exhibit symptoms
| that are easily picked up by a sleeping person?
| Trasmatta wrote:
| The good news is that for most diabetics, your body will
| automatically wake you up for a hypo. It's a survival
| mechanism. But some people suffer from hypoglycemic
| unawareness, and their body doesn't wake them up.
|
| Most diabetics have CGMs these days, though, and somebody
| like that should be setting hypo / hyper alarms so that
| either them or their partner wakes up.
|
| (The problem there becomes false alarms and the
| subsequent alarm fatigue that results in you turning them
| all off.)
| richie5um wrote:
| "Most diabetics have CGMs these days" - not where I come
| from :-(
| UnpossibleJim wrote:
| My doctor had to fight to get me one. I workout and was
| highly insulin sensitive (she made me workout less and
| gain some weight by doing less cardio - drives me nuts, I
| liked running). The insurance companies didn't want to
| fork over for the upfront cost, even though I had been to
| the hospital several times for low blood sugars. This
| included a stroke caused by a severe low blood sugar
| (yes, I lived alone at the time, pre CGM. Coworkers
| called a friend who had a key).
|
| Granted this was 4 years ago, so I'm unsure how things
| have changed. The CGM is a game changer. I wish I had had
| it earlier. Would have kept me (hopefully) from a lot of
| issues and putting my friends and family through
| unnecessary pain.
| sah24 wrote:
| Hi, do you live in the USA? I had a similar experience to
| you. I am considering doing a research project for grad
| school about patients in the USA who experienced
| insurance denials for CGMs.
| UnpossibleJim wrote:
| I do live in the US. Yes. And actually, my endo is
| probably a better person to chat with. Let me drop her an
| email and see if she A) is allowed and B) has the time
| sah24 wrote:
| sweet, thanks!
| sah24 wrote:
| P.S. feel free to email me at
| t1dresearchproject@gmail.com -- thanks
| Trasmatta wrote:
| You're right, the truth is probably actually that only a
| minority of T1Ds have CGMs. My post was a bit
| insensitive, not everyone has easy access to them.
| techsupporter wrote:
| What's even more frustrating is the disparity in who can
| get them and how even if they are cleared for use in your
| country. The author here points out that New Zealand's
| medical system doesn't always pay for CGMs, while the
| Australian system does. In Ireland, the Dexcom G6 system
| is available but the FreeStyle Libre 2, an updated
| version of the FreeStyle Libre with more frequent reads
| and better alarms (Libre vs Libre 2), is not.
|
| CGMs are available over-the-counter, just like finger
| stick machines, in a variety of countries like Canada and
| Ireland. But in the United States a prescription is
| required for _any_ CGM even if insurance doesn 't pay for
| it and insurance generally only pays for it once you are
| actively on full-time insulin treatment, so type-2
| diabetics can't avail of insurance to reduce the cost of
| potentially not needing to go on recurring insulin by
| getting a handle on being pre-diabetic. (Plus many
| doctors won't write a CGM Rx for someone who isn't type-1
| or very symptomatic type-2. This has resulted in
| nutritionist businesses springing up whose purpose is to
| turn a credit card charge into a prescription for a CGM.)
|
| But of course different countries have different
| regulatory systems, we all know that. This is to say that
| even when you find a system and method that has worked
| for others in your online community, that method might
| not be available to you, and it causes even more stress
| to have the idea, right or wrong, that a useful tool is
| just out of your grasp. And carbohydrates help you if you
| dare move between countries.
| tagh wrote:
| >The author here points out that New Zealand's medical
| system doesn't always pay for CGMs, while the Australian
| system does.
|
| Only for under 21s, and only recently. Once you hit 21,
| the rug is pulled out from under you.
| smnrchrds wrote:
| My province (Alberta) in Canada is just starting to cover
| CGM costa and only for under 18s.
|
| https://www.cbc.ca/news/canada/edmonton/glucose-
| monitoring-d...
| lytefm wrote:
| I was really surprised how difficult it is for
| competitors like levels to provide CGMs in the US.
|
| Here in Europe we can simply get them from Abbot/Dexcom
| an ship them.
|
| I can't make any promises, but I'm positive that I'll be
| able to develop a product that takes care of finding the
| correct insulin doses when giving activity and CGM data +
| meal information withing the next year's.
| kelp wrote:
| The alarm fatigue is no joke, and CGMs get less accurate
| the lower ones blood glucose goes, so false alarms on the
| low end are common.
|
| My wife has a Tandem T:Slim and Dexcom G6 and she can't
| turn off the urgent low alarm. The alarms drive her
| totally crazy.
|
| Though I'm happy to know at least the system will disable
| her basal rate if she's heading low.
| noodleman wrote:
| This is a bit melodramatic. I've lived alone with T1D for
| the better part of a decade without any problem. I went to
| uni, alone, without any problems.
|
| Frankly, I think depending on other people is a liability.
| I can't count on my hands how many times I've had to
| explain to people that you _don 't_ give an unconsious
| diabetic insulin, you call an ambulance and follow the
| instructions you're given. I just don't trust the average
| person enough to burden them with the responsibility.
|
| The only people I would trust to look after my unconsious
| body during a severe hypo are medical professionals - and
| there are medical professionals that I still wouldn't
| trust!
|
| Yes, the maths is unavoidable. Diabetes burnout is real.
| But if you've it had for nearly 3 decades, like I have,
| then you learn coping strategies. My advice is to spend
| some time finding a specialist who listens and answers
| questions. Use the devices available to you and learn them
| well. Don't make changes to your insulin regimen when
| you're angry or hypo. Most importantly, don't strive for
| unattainable perfection.
| paulcole wrote:
| Everybody's T1D experience is different and it's not
| _that_ melodramatic. Before I had a CGM I went so low at
| night my partner had to call 911 in the morning.
|
| Sure I bounced back and got a CGM, but only because I
| could afford one. I was terrified of going to sleep at
| night without a handful of alarms set to wake me.
| lolc wrote:
| Yes living alone with diabetes is fine given modern
| treatment and some robust habits.
|
| Here's the instruction to the people I know I will be
| spending longer stretches of time with: When I look very
| tired, disoriented, or talk incoherently: fetch orange
| juice or some other sugary drink. Make sure I drink it.
| When you find me unconscious: roll me on the side, call
| an ambulance. You can put sugar under my tongue but do
| keep watching me. If you feel confident, apply the
| syringe from the orange box in the fridge.
|
| Thankfully, none of this has played out so far. Except
| that I had to rely on friends a few times when my sugar
| ran out. That's already plenty scary.
| [deleted]
| KetoType1 wrote:
| The secret to managing Type 1 Diabetes is a ketogenic diet. You
| will observe extreme stability of blood glucose (low variance)
| and because the brain uses ketones as fuel, occasional
| hypoglycemia will be an easily-managed non-event.
|
| You should get most of your calories from olive oil and nuts.
|
| Protein intake should be just as much as you need. Excess
| protein causes blood glucose instability.
|
| Carbohydrate intake should be as low as possible.
|
| Here is a sketch of a ketogenic diet that works long-term:
| - 2 eggs over medium with 4 tablespoons of olive oil -
| walnuts/almonds/pecans with a little cheese - hazelnuts,
| peanuts, macadamias for hunger - a little chia seed (2
| tablespoons) - salad with avocado (14g of fat) and 9
| tablespoons of olive oil, with vinegar
|
| The salad is by far the largest meal of the day should include
| wide variety of vegetables. Leafy greens, broccoli, brussels
| sprouts, zucchini, tomato, etc. Add walnuts.
|
| Get a lot of salt. Take a multivitamin and fish oil capsules.
|
| Once a week, eat a burger with no bun. Cheese and meat. This
| should be eaten after hard exercise (e.g., a hike). You might
| eat other cheat foods (e.g., seafood, steak) but avoid
| carbohydrates.
| com2kid wrote:
| I'm vouching for this because there is indeed a community of
| type 1 and type 2 diabetics using keto for management.
|
| Obviously it isn't a one size fits all approach, and the
| above poster could have been a bit more diplomatic, but IMHO
| it is worth discussing treatments that have been demonstrated
| to work.
| KetoType1 wrote:
| jacquesm wrote:
| > It will solve all your diabetes problems.
|
| This is an overstatement, to put it mildly, at best you
| can say that it works for you and for those for whom it
| also worked after they have put it to the test. But it
| does not work for everybody and you shouldn't make
| unqualified statements like that.
|
| Here is a much better (and much better qualified)
| picture:
|
| https://www.healthline.com/nutrition/keto-diet-diabetes-
| type...
| jacquesm wrote:
| This is a pretty dangerous comment, if you consider going the
| Keto route and are a diabetes type 1 patient _please_ consult
| your doctor, there are some risks involved and it definitely
| does not work for everybody.
| KetoType1 wrote:
| Thank you for your concern, friend!
|
| Tell us, how long have you been diabetic?
|
| Anecdotally, I have maintained a HbA1c below 5 for more
| than 20 years using small variations on the ketogenic diet
| described above. I need just 6 units of Humalog (short-
| acting) and 16 units of Lantus (long-acting) per day. It
| makes diabetes very, very easy to manage.
|
| If anyone reading this is tired of struggling with
| diabetes, please consider adopting a ketogenic diet.
|
| Consult with a physician!
| chrisdotcode wrote:
| I'm not sure why you're being downvoted. I know jacquesm
| is a very well-respected poster, but unless he's got
| diabetes himself, he's providing his opinion with
| absolutely no real-world-experience vs someone who has
| been managing diabetes with keto for two decades.
|
| Even if keto "isn't for everybody" (and KetoType1 should
| have put a disclaimer), I'd certainly much rather take
| advice from someone with skin in the game.
| jacquesm wrote:
| By this reason any doctor that doesn't have the disease
| they help curing should be disqualified as well. Maybe
| think a bit longer and realize that expertise can be
| gained in more ways than experience alone.
|
| I've posted a pretty good link below from a respected
| source if you don't believe what I wrote and whether or
| not I have diabetes type 1 is not relevant.
| chrisdotcode wrote:
| Of course you're not immediately "disqualified" from
| providing meaningful information if you don't have skin
| in the game. However, the current state of pretty much
| any science-related-to-food is woefully inadequate
| (remember the food pyramid? and how fat was evil and
| going to kill you? And don't even get me started on
| carcinogens and meat). At this present moment in time,
| people who are actually trying and living on keto (, in
| particular those with diabetes) are actually on the
| bleeding edge of food science.
|
| I personally have friends who manage Type 1 & 2 diabetes
| with little-to-no insulin on Keto, and I'd hate to see
| people being turned away from at least researching a
| lifestyle that could _significantly_ benefit them because
| a well-respected member of the community said it was
| "dangerous" (and often, deferring to doctors can be not
| helpful for reasons mentioned above - I wish people would
| at least research for themselves).
| jacquesm wrote:
| And I spent the better part of a month _deeply_ embedded
| in safety materials regarding diabetes type 1. It 's
| simple: if you start experimenting like that without
| guidance from your doctor then that's asking for trouble.
| Giving medical advice with such a high chance of risks
| materializing for the takers of such advice is
| irresponsible to put it mildly. You can't just dump
| blanket statements like that in a forum and expect a
| positive outcome.
|
| Telling people to research a lifestyle is completely
| different than providing ready made recipes paired with
| unqualified statements based on a sample of '1'.
| chrisdotcode wrote:
| That's true- I even stated that I thought KetoType1
| should have put a disclaimer.
|
| At the same time, I do encourage people to take charge of
| their own health, and to make calculated and appropriate
| risks. My primary concern was people only reading your
| name, the word "dangerous", and being put off from
| further research about keto in general because of that.
| Some physicians used to recommend rice- and grain-heavy
| diets for diabetes, so some healthy skepticism (EDIT: in
| the "trust, but verify" sense) is warranted, even towards
| one's doctor.
| jacquesm wrote:
| > some healthy skepticism (EDIT: in the "trust, but
| verify" sense) is warranted, even towards one's doctor.
|
| That's fair, but for all you know OP is making stuff up,
| has been misdiagnosed and 50 other things that could be
| true that would make their well intentioned unqualified
| advice utterly irrelevant and dangerous to boot.
|
| Just like you shouldn't take legal advice from ACs on the
| internet you shouldn't take medical advice from them
| either, especially when they're novelty accounts
| promoting diets that have been used to 'cure' everything
| from cancer to epilepsy, Alzheimers and TBC. Extreme
| skepticism is warranted there. As for your doctor:
| assuming they're a diabetes specialist: you should put
| your faith in them, and if you don't trust them then you
| should go find yourself another doctor, not start taking
| randos advice.
| Trasmatta wrote:
| I do want to try keto at some point, as I've heard a number
| of success stories for keto / low carb and T1D. It's hard to
| gather the motivation to start it.
|
| One important thing to point out is that you can't reverse
| T1D with keto, like some people are able to with T2D. It can
| greatly reduce your insulin requirements, but not to zero.
| Your pancreas will not return to normal function.
| [deleted]
| RanTig wrote:
| As far as I know you indeed can't reverse T1D with keto,
| but making it (much) easier to manage still seems like a
| very big win.
|
| It's actually pretty easy to get used to a keto diet.
| Initially you might crave a lot of food items that you were
| used to eating, but eventually you stop missing them. I
| don't feel like I'm missing out on anything when I'm having
| some aged cheese and roasted nuts as a snack (which
| replaced eating cookies or chips for me). It is a little
| bit more expensive though.
|
| As for drinks, eliminating fruit juices and opting for the
| 'light' or 'zero' variant as a drop-in replacement if you
| want something sweet is pretty easy.
| shadowtree wrote:
| Non-zero chance you might see a cure for type-1 in your
| lifetime.
|
| https://www.clinicaltrialsarena.com/analysis/vertex-stem-cel...
|
| It's a stem cell therapy, in human trials (not the usual "in
| mice" crap).
|
| A single patient already had their diabetes disappear:
| https://www.fiercebiotech.com/biotech/vertex-diabetes-cell-t...
|
| The downside of stemcell therapy is that it is essentially an
| organ transplant, aka requires immunosuppressants, for life.
| Guidii wrote:
| I'm a T1D for 45 years, and since my first diagnosis there
| has always been a cure that would be available "within the
| decade". This is the way.
|
| That being said, every decade has seen life-changing
| therapies introduced. The introduction of long-lasting
| insulins. At home testing for glucose and ketones in urine.
| Mixing insulin formulations together to reduce the number of
| injections at a time. Thinner needles greatly reduced pain
| from injections (this one happened almost every year.) Moving
| from urine tests to blood glucose tests! Introducing shorter-
| acting insulins that reduce onset time. GLUCOMETERS! Moving
| from needles to pens allowed crazy-simple and virtually
| painless injections. Moving from pork formulations to human
| formulations of insulin. Carb counting: previously we used
| fixed diet - eat the same thing at the same time every
| freaking day. INSULIN PUMPS!!! Crazy fast-acting insulin
| formulations cutting onset down to 15 minutes. CONTINUOUS
| GLUCOSE MONITORING!!! Tracking and alerting for low glucose,
| overnight and remote. CUSTOM-BUILT CLOSED LOOPING!!!
| Reliable/medical grade CGM. Approved closed looping systems.
|
| Many folks have worked very hard to make my life more
| livable, and I thank them for it. Today is, without a doubt,
| the best time to be a diabetic.
|
| That being said, I still wouldn't recommend it;)
| westoncb wrote:
| I wonder if there's any good reason to reduce my pessimism
| about it: I can't help but think there are such strong
| economic incentives against having a cure (vs ongoing
| treatment) that it's very unlikely to become available during
| my lifetime.
| R0b0t1 wrote:
| I don't want to feed your pessimism too much but I think
| the general culture of being too reserved with funding and
| testing is going to do more harm than that.
| kelp wrote:
| I don't know much about medical research, but I've looked
| into some of these trials. They are generally being done by
| startups and not the established players who sell the
| diabetes management stuff.
|
| So think disruptive tech. A new player comes into the
| market with something that obsoletes the old tech, and
| maybe destroys a whole market. But that new player makes
| their own money off it.
|
| So yeah, maybe Tandem, Dexcom and Medtronic don't have a
| big incentive. But someone else can make some real money if
| they can find a cure or novel treatment that obsoletes all
| those others things.
| mnw21cam wrote:
| The reason for the immunosuppressants is not the same as for
| a classic organ transplant. For a normal organ transplant,
| you need immunosuppressants because otherwise the body will
| recognise the new organ as being a foreign body that it
| doesn't recognise as self. For a stem cell transplant, the
| immune system has already gone around destroying every
| pancreatic beta cell it can find. The immune system is
| primed, and it absolutely recognises beta cells as something
| to destroy. The end goal is to encapsulate the inserted beta
| cells in a membrane that allows glucose in and insulin out,
| but keeps the immune system away.
| brainlessdev wrote:
| Although I haven't experienced this first-hand, my partner has
| T1D and I can see her reflected in everything you say. I'm
| hoping for a near future where technology paliates some of the
| dread of living with T1D. Some lines of research, such as
| implantable insuling-producing islets [1] seem promising, at
| least to someone without the chops to judge what's going on.
|
| [1]: https://www.clinicaltrials.gov/ct2/show/NCT03513939
| Trasmatta wrote:
| Thanks for the kinds words.
|
| The primary problem with those types of treatments is you
| have to be on immunosuppressants, or the immune system just
| kills the cells again. That type of treatment is typically
| not recommended unless the patient is already on
| immunosuppressants, or has extreme hypoglycemia unawareness,
| or extreme needle phobia. Immunosuppressants are typically
| considered a worse outcome than properly treating T1D with
| insulin + CGM.
|
| For the same reason, sometimes T1D's will get a pancreas
| transplant if they are also getting another required
| transplant that will require immunosuppressants.
|
| I think the best hope in the next 50-100 years or so is
| continued development and improvement of closed loop systems.
| Eventually we should get to a point where highly
| sophisticated closed loop artificial pancreases can automate
| much of the process away. This will improve treatment and
| long term health outcomes, but will still require a fairly
| significant level of maintenance and oversight on the part of
| the patient (or their parent). There's a lot of really
| promising work being done there.
| [deleted]
| brainlessdev wrote:
| I've been following the press about closed loop artificial
| pancreases closely, too. Currently, the open-source
| solutions there are require using insulin pumps that are
| pretty big and for some, that's not a choice they're ready
| to make. I too hope this tech continues to advance quickly.
| Trasmatta wrote:
| The Omnipod 5 just received FDA approval, and looks
| really cool. I'm going to wait a bit and see reactions
| from other diabetics, though, before I jump onboard.
| brainlessdev wrote:
| Oh, sweet! It looks like it's not out yet in Germany. You
| can get the Omnipod Dash here. It does look like it's
| going to be available soon, though. Will keep an eye out,
| thanks for the tip!
| pimeys wrote:
| The AndroidAPS works with many Omnipod models, and with
| DanaRS or Accu-Chek insight which are all quite small
| pumps.
|
| If you have the knowledge, I can highly recommend doing
| some research and try looping. I've been doing it now for
| three years. Time in range is about 92%, A1c always
| 5.8-6.0%. 80% of the stress is gone. Life is better.
|
| But, it's not accepted therapy and you have to do lots of
| research to learn how to use the systems. For me it has
| worked like nothing else. I got my life back after 21
| years of suffering with T1D.
| jimmaswell wrote:
| > a near future where technology paliates some of the dread
| of living with T1D
|
| I thought pump implants already did that, what's missing?
| Trasmatta wrote:
| Pumps aren't implants, you replace them regularly. They are
| a massive improvement in care for many people, but they do
| not remove the daily toil of managing diabetes. Personally,
| I found a CGM to be even more helpful than a pump.
|
| Closed loop artificial pancreases are the future, but they
| will still require a large amount of attention and
| management by the patient.
| mlyle wrote:
| Insulins that themselves react to blood sugar levels are
| another interesting path. Not that they could ever do the
| entire job, but they could lend some first-order
| stability.
| jfengel wrote:
| Indeed. I am not diabetic, but a close friend is, and I
| have observed all of the effort and uncertainty that goes
| into it.
|
| My friend got a new high-end closed loop system, and it's
| so much better than the previous pump. There's still a
| long way to go before it's truly an artificial pancreas,
| but my friend already has much higher quality of life,
| and the tech is still improving.
| btowngar wrote:
| One further thing - the article doesn't talk much about the
| physical response to wearing a CGM such as the extreme skin
| irritation some people get from the adhesive. Or the fact that
| the CGM reading could be way off the reading you get from a
| finger prick test - which can in turn vary significantly from a
| lab test result!
| consp wrote:
| I did the test once with most meters I still had laying
| around: ballpark correct but according to them my blood sugar
| level was between 3.8 and about 7 mmol/l. I have one which is
| very finacky in the 4.0 and lower range which is annoying if
| you want to know if it really starting hypoglycemia or you
| are just tired.
| coldpie wrote:
| Same here. 100% dead accurate description.
|
| > what if I start to go low during this meeting? should I pop
| some carbs and run high for this interview, so I don't risk a
| hypo partway through?
|
| Love this part. Had to do it literally yesterday to prep for
| interviewing a job applicant. Imagine the stress of an upcoming
| meeting, but also your brain might stop functioning half an
| hour into it! Ha ha! Good times.
| Trasmatta wrote:
| Perhaps the only good thing about T1D is the immediate
| camaraderie you feel with other T1Ds. When I spot somebody
| else in public with a CGM or a pump, it's just that instant
| feeling of "hey, we know nothing about each other, but we
| have a very intimate understanding of each other's
| suffering".
|
| > Love this part. Had to do it literally yesterday to prep
| for interviewing a job applicant. Imagine the stress of an
| upcoming meeting, but also your brain might stop functioning
| half an hour into it! Ha ha! Good times.
|
| Haha, yeah, this is one of those things that every T1D has
| had to do at some point, that non diabetics would probably be
| shocked by. There are just times when you can't risk going
| low. Going high ain't great, but it at least doesn't involve
| the immediate danger that a hypo at just the wrong moment
| does...
| coldpie wrote:
| > Perhaps the only good thing about T1D is the immediate
| camaraderie you feel with other T1Ds.
|
| On that note, feel free to send me an email if you want. Or
| not, no pressure. (I would've sent you one, but your
| profile is empty :) )
| baseballdork wrote:
| I did this applying for an internship at Microsoft. First
| big company interview for me and I didn't realize they
| would be taking me to lunch. The interviews after lunch
| were miserable as I was dangerously high.
| barbazoo wrote:
| This all sounds really really hard, I'm sorry you have to go
| through that.
| sdze wrote:
| Would it not be better to eat only once a day so the potential
| for errors is minimised?
|
| Skip carbs altogether?
| FunnyLookinHat wrote:
| I've been diagnosed with gastroparesis [1], and reading this
| gave me the exact same reaction! Almost all of my day is
| consumed with "what did I eat most recently? when should I eat
| next? How much? What am I short on for today? Protein? Carbs?"
| It's mentally exhausting. I'm thankful though that I only have
| to be concerned with "how much I can eat in a day" and there is
| no upper threshold. Lately I've been thinking about T1D and
| similar issues that have a high focus on managing food intake,
| and I completely empathize with you and everyone else who has
| to do this.
|
| If anyone reading this struggles with gastroparesis I'd love to
| chat about diet choices that have worked for me. Contact info
| in my profile.
|
| 1) https://www.mayoclinic.org/diseases-
| conditions/gastroparesis....
| peterb wrote:
| This.
| Mezzie wrote:
| > I'm literally crying while writing this post, because it's so
| exhausting and it never ends.
|
| If it helps (?), I also broke down crying reading this, because
| I have MS and it is so true to my experience. I've never been
| able to communicate well how exhausting the constant mental
| load is, and I imagine it's even worse for people with T1
| diabetes since blood glucose can get out of whack a lot more
| quickly than my immune system can make more holes in my nervous
| system.
|
| You nailed it on the head exactly with the constant balancing.
|
| "Okay, so I didn't sleep for crap last night due to symptoms.
| Do I have some caffeine and spend the rest of the day in pain
| due to the increased muscle spasticity? Maybe if I have 3 cups
| of coffee instead of 1 and also take some of my muscle
| spasticity medication, I'll be able to stay awake but not be in
| too much pain. Except if I dip into what are supposed to be
| nighttime pain meds too often, I might run out of Tizanidine.
| When will my insurance refill? How much will it cost out of
| pocket when I have a bad pain month?"
|
| And then I get stressed out about the MS, and we're supposed to
| avoid stress, so then I stress about my stress. Fantastic.
|
| And all until the day we die.
| mst wrote:
| Oof. Even without any physical issues if I get stressed about
| stuff in a way that makes it hard to concentrate I usually
| then manage to do the 'stress about my stress' thing on top
| of that and damn but that's no fun at all.
| Mezzie wrote:
| Are you tired of boring, old stress?
|
| Try new and improved META-stress: all the worrying and none
| of those pesky resolutions or good things!
| mkrecny wrote:
| I'm sorry
| grahar64 wrote:
| Having an 18 month old means we are in full control of
| everything he does and eats and doses and even with all that
| control we see wild swings and weird shit every day. Having all
| the energy needed to manage T1D and the self control to do it
| is superhuman. I wrote this post mostly because I didn't know
| that before and I want more people to know. You are doing
| great.
| Trasmatta wrote:
| Thank you! Being a parent of a T1D (especially an infant) is
| also a monumentally stressful task, and your post shows
| you're doing a great job. Keep up the good work, and please
| take care of yourself as well.
| aarondf wrote:
| I'm a dad to 9 month old twins and I'm a Type 1 Diabetic.
|
| The picture of you and your son in that hospital bed broke
| me. You're doing great.
| prmph wrote:
| Is it not possible to have a device always connected to the
| bloodstream, with a replenishable supply of glucose and insulin
| in different compartments, that periodically checks the blood
| sugar level, and injects what is appropriate to keep it normal?
| jacquesm wrote:
| This is either in trial or already in distribution, it is
| essentially a metered insulin pump coupled with a continuous
| glucose monitor.
|
| https://www.diabetes.org.uk/guide-to-diabetes/diabetes-
| techn...
| [deleted]
| kelp wrote:
| This kind of exists, and here is one such system:
|
| https://www.tandemdiabetes.com/products/t-slim-x2-insulin-
| pu...
|
| The pump delivers insulin and gets blood glucose readings
| from a CGM (continuous glucose monitor) over bluetooth. Then
| the pump can make decisions such as stopping insulin delivery
| if you're going to go low, doing small correction boluses,
| and adjusting basal rate.
|
| However it's far from perfect and still needs a lot of
| management. My wife has T1D and was recently pregnant, which
| really raises the bar on how tightly you need to control your
| diabetes. She ended up mostly micromanaging it all herself
| rather than trusting Control IQ to do the right thing.
|
| The other issue is CGMs are not that accurate, so these
| systems are making decisions based on not great data.
| osrec wrote:
| My sister is T1 diabetic (diagnosed at 11). Your description is
| extremely accurate.
|
| I used to think that if you control all the parameters, then
| you can control diabetes. Thinking in this way is incorrect,
| and my lack of understanding caused a bunch of arguments
| between me and my sister. I wanted her blood sugars to be
| better, and assumed her bad blood sugar days were caused by
| poor control. They weren't, and quite honestly, only God knows
| the real cause.
|
| I was pretty ignorant about what I didn't know. My sister is 32
| now, and I feel like she's got a very good handle on her
| condition in the last decade or so. It is a continual struggle,
| but I'm proud of the fact that she now has mostly good days,
| with the occasional bad day here and there.
| arka2147483647 wrote:
| I have had Type 1 for 30 years.
|
| To be honest, i don't do the math. I choose the amount of units
| to inject by feel. I mean, i know by eating a banana, i get
| something like 20g of carbohydrates, and i should take 3u. But
| if i feel, that the correct dose is 6 units, then i take that.
|
| I cant really explain it. But i kind of feel the state, where i
| am going, and can adjust instinctively. Works more often than
| not. I have never passed out.
|
| Edit:
|
| I measure blood sugar A LOT, though.
|
| Most important things are what i think as the Morning Gate, and
| the Night Gate.
|
| For Night, must have blood sugar under 10mmol/l. Preferably
| without pending effects such as food or recent injection. If i
| get that right, the night blood sugar is steady.
|
| In the morning, must account for the morning blood sugar raise
| phenomenon.
| emj wrote:
| > I measure blood sugar A LOT, though.
|
| That is the most important part, you can really live a good
| life if you have that. I hope we get more powerfull and cheap
| way to do that continously. At the momemnt it's at least 300
| USD a month for a CGM device that can measure every five
| minutes. It's abit like monitoring traffic load and adding
| more servers as you go, except too many servers kill you.
|
| That with knowing how you react to changes in life works
| wonders, e.g. exercise, eating fat foods, sitting all day.
| steveklabnik wrote:
| > It's abit like monitoring traffic load and adding more
| servers as you go, except too many servers kill you.
|
| Not even just that, but with fairly primitive monitoring
| tools. The built-in stuff for Dexcom can only alert on
| highs or lows, not on things like the rate of change, which
| would be much more useful IMHO.
| [deleted]
| ksaun wrote:
| The Dexcom G6 is capable of alerts for rate of change,
| but it's about what the rate was, not what it will be. It
| still can be helpful.
|
| (When looking at the app, there are "trend arrows," also,
| but they unfortunately are misleading in some situations.
| Often looking at the data points can give you a sense of
| your situation, though.)
| steveklabnik wrote:
| TIL that this must be in the main app somewhere, but not
| Follow. (and yeah, the arrows are all over the place,
| sometimes different between Follow and the main app...
| the data points is the best, for sure.)
| pimeys wrote:
| There are open source apps such as xdrip that can alert
| on a trend change, and androidaps that turns off insulin
| delivery way before you get to a hypo.
|
| The official one from Dexcom is not very good.
| steveklabnik wrote:
| Yeah, if you're technical, there's options. But if you're
| not, it can be harder.
| archi42 wrote:
| 300 USD? That is incredibly expensive! In Germany, the
| general public can order a Libre 2/3 _from their website_
| for 60 EUR. That 's 150 USD per month (assuming 26 devices
| per year). Though that's a purely theoretical price: As
| with insulin, the mandatory health insurance seems to pay
| for it anyway.
|
| Even with import taxes/tariffs applied, I could imagine a
| vacation to Europe being massively subsidized by just
| bringing back one or two years of GCM supplies (obviously
| Vimes theory of socioeconomic unfairness[1] applies).
|
| [1] https://www.goodreads.com/quotes/72745-the-reason-that-
| the-r...
| pimeys wrote:
| In Germany a Dexcom G6 sensor is 80EUR per 10 days. A
| transmitter about 400EUR per 90 days. TK pays for all of
| this if you can show nightly hypos and jumpy glucose
| values, which should be easy for any T1d...
|
| Dexcom is the only one accurate enough to use with SMB
| looping. And the only one in germany that sends the
| glucose numbers to your phone with BLE. Libre 2 can be
| hacked to do the same though.
| arka2147483647 wrote:
| Well, I have had the incredible luxury of being born in
| Finland, so state/municipality pays everything. Insulin,
| Glucose-test-supplies, Doctors. I truly fell sad when i
| hear what US based persons have to go through. Though, i
| suppose i pay it in taxes :)
|
| About devices.. The first Glucose-test-device (what are
| they even called in english) took 5min to process the
| results. Current one is 5sec. A massive improvement in both
| speed and accuracy in these things.
|
| I hope a good non-invasive device is developed, though i'm
| not sure it is essential, for me anyways.
| JimmyAustin wrote:
| I'm not diabetic, but I tried a FreeStyle Libre 2
| continuous glucose monitor to measure my blood sugar, and
| I think it's basically what you are asking for. Tap your
| phone on a patch on your arm to get a instant view of
| your blood sugar, plus see the previous 8 hours. It is
| pricey though.
| arka2147483647 wrote:
| My understanding is that all current devices like this
| use a thin sensor "fiber" that is inserted under the
| skin, which is then connected to the coms-unit, which is
| in the sticker which remains on top of the skin. So they
| are still somewhat invasive.
| consp wrote:
| And also annoying if your body really doesn't like them
| since they clog up after at most a day with me... (I've
| used them a few time since they were the size of bread
| boxes with long wires and the results after about a day
| always become erradic and unpredictable)
| consp wrote:
| > honest, i don't do the math
|
| Also 30 years here. I have exactly the same thing as you
| describe though when I switch insulin I do start calculating
| again to be sure it matches with my assumptions. Blood
| glucose measuring is required though as you mention. I'm one
| of the lucky ones with very lineair and predictable response
| to every unit more or less of insulin. Not everyone is that
| lucky though.
| grahar64 wrote:
| There are some pros and cons to managing T1D but not being
| the person actually managing it. The main con is that I have
| no idea how he is feeling, which makes us very numbers
| obsessed, hence the post :)
| [deleted]
| Trasmatta wrote:
| I'm at 10 years, and this is basically how I do it as well.
| The math just doesn't work, because there are too many
| factors at play, most of which you don't even know about, and
| can't plug into a simple equation. You might have the exact
| same meal and the exact same insulin dosage on two different
| days, and go low on one and high on the other.
|
| You eventually gain an instinct for it. Doesn't always work,
| but for me it works better than the formulas...
| richie5um wrote:
| Thank you for sharing. As a T1 diabetic too, I was reading this
| nodding my head all the way through.
| pixl97 wrote:
| Continuous blood glucose monitor and insulin pump. It's reduce
| the stress and the nearly dying incidents dramatically. The
| bigger concern for me in my life now is having a backup
| carbohydrate supply on me so if I go do something like hiking
| that I have enough glucose to make it back to the next
| carbohydrate source.
|
| Of course being able to even afford this in the US requires a
| certain level of privilege. Supplies are very expensive.
| gowld wrote:
| If you have an insulin pump, can you also have a glucose
| pump?
| pimeys wrote:
| No. But a hormone called glucagon is used in some pumps. It
| puts your liver to produce glucose.
| cadr wrote:
| Or a glucagon pump: https://beyondtype1.org/future-
| artificial-pancreas/
|
| (causes your liver to release its glucose)
| kelp wrote:
| Thanks for sharing this. I wasn't aware of this, going to
| keep on eye on it.
| eldonaldo wrote:
| Hi, Nico here from SNAQ. We are a Swiss based startup that
| created an app which helps T1Ds to count carbs and to better
| manage their glucose around meals. You can download the app here:
|
| https://www.snaq.io/
|
| I hope it helps evey T1D to make their lifes a little bit easier.
|
| DM me / reply to this thread if you want a voucher for the
| premium features.
| iaresee wrote:
| I am up reading this in bed. Also watching my 11 year old's BGL
| slide down under 80. I'm about to go wake him and make him drink
| some milk.
|
| Diabetes is a shit autoimmune disease. But the tech gives us some
| hope. And I treasure every day, no matter how hard, I get with my
| kid.
|
| Hang in there. It gets easier to manage as they get older and
| more involved in their care.
| bayesian_horse wrote:
| If you have diabetes you probably shouldn't have Milkshakes!
| tasty_freeze wrote:
| This article and the comments here have been one of the most
| educational things I've read on HN. I have a much deeper (yet
| still superficial) understanding of the difficulties.
| hypefi wrote:
| grahar64, my nephew is in the same situation as your son he
| became diabetic at 18 months too, I want to ask a question, did
| your son get T1D after 18 months vaccination ? because my nephew
| got ill three weeks after vaccination. I think these data is not
| entered into the medical system, and if it is not entered no
| correlation can be made about the possible side effects of
| vaccines on the population at large. May God help you and your
| family.
| sarusso wrote:
| For anyone following this thread, is there any online community
| of diabetic type 1 techies? i.e. like all of you guys commenting
| on this?
| idealmedtech wrote:
| I'd recommend getting onto the OpenAPS gitter community! I'm
| sure they have a Discord by now, too, but whenever I have a
| question about something obscure related to diabetes tech,
| they've been a good resource.
| csee wrote:
| In the inline chart "42 factors that affect blood glucose", how
| do I interpret the two different arrows corresponding to each
| entry?
| sgmoore wrote:
| If you mean an up arrow as well as a down arrow, this means it
| can increase *or* decrease the blood sugar levels. Usually this
| means it will affect different people in different ways, but
| sometimes it can mean that it will affect the same person in
| different ways at different times.
|
| For example, most people find that exercise will decrease their
| blood sugars, but some people have reported that intense
| exercise causes their levels to rise.
|
| When I go for a walk, usually my blood sugar immediately jumps
| up slightly and then after 10 or 15 minutes it starts to fall.
| After 30 minutes I am back to where I started and then my
| levels continue to fall after that.
|
| https://diatribe.org/42factorsexplained gives more details
| about each of the 42 factors.
| zippergz wrote:
| It's not relevant for a toddler, but for future reference,
| another thing to look into is inhaled insulin (brand name in the
| US is Afrezza, not sure if it's available elsewhere or under what
| names). The big benefit is that its onset is very fast and
| duration very short, so you don't have the inject + wait 20-40
| minutes cycle. And if you accidentally take too much, you're not
| dealing with hours of lows because the duration is short. Most
| people I know who use it wait until after they've eaten (or maybe
| in the middle of he meal if it's big/long), based on readings
| from their CGM. It's not perfect, but it's a good tool to have in
| the toolbox.
| idealmedtech wrote:
| Hi, I'm an artificial pancreas developer! Our device has been
| approved for human trials which we're going to begin shortly,
| probably near the end of this quarter.
|
| One thing that the article (which is very well researched, by the
| way, kudos!) does not quite get right is that the insulin
| sensitivity _changes_ hour to hour, day to day, month to month.
| It changes nonlinearly with exercise, stress, sleep, diet, and in
| a million other subtle ways that we're still trying to
| characterize. This dynamism is part of what makes management of
| blood sugar so hard, because the same dose that got you in range
| a couple days ago now sends you into a hypoglycemic episode,
| which can be really really dangerous!
|
| The good news is that, while cures for diabetes have been Five
| Years Out (TM) since the 1980s, artificial pancreas technology
| (like Loop, OpenAPS, and recently approved Omnipof 5) is here
| _today_ and already giving people a real solution, not to mention
| peace of mind, but we still have a long way to go! Access issues,
| trust relating to years of anxiety induced trauma, cost etc are
| all barriers to making these solutions widely available, but I
| feel hopeful that in 20 years, a T1D diagnosis will be as
| manageable as an eczema one.
|
| If anyone has any questions about APs, I'd be happy to field
| them!
| sweston4 wrote:
| Hey Jeremy, I was hoping to send you an email based on the
| email in your profile (jeremy@ideal.com) and received an
| "address not found". Would there be a better way to reach you?
| idealmedtech wrote:
| It's @idealmedtech.com! I did it that way to keep the bots
| away, but perhaps it was a little _too_ effective
| mst wrote:
| The change you've already made seems pretty likely to work
| but maybe @ <myusername> .com would be even clearer and
| still have the desired effect? (or since you have the URL
| in there some reference to that, YMMV, just the thought
| sprung to mind so figured I'd share in case it was useful)
| kelp wrote:
| I just looked at your profile and saw what your company is
| working on. Very interesting!
|
| My wife and I were recently in a situation where I'd wondered
| why the hospital didn't have such a thing!
|
| My wife has T1D and we just spent 3 days in the hospital for
| the birth of our daughter. The most scary and frustrating part
| of the whole process was my wife's diabetes management. She
| uses a Tandem T:Slim and a Dexcom G6, and generally has very
| tight control. But the hospital insisted on taking over during
| active labor, and we had a very tense conversation with a
| tactless perinatologist about it.
|
| They wanted to put her on an (IIRC) intermediate acting insulin
| drip, and rely on finger pricks. We were very worried that they
| would basically be following a canned script and would end up
| yo-yoing her blood glucose during labor.
|
| We ended up getting our OB to convince the completely tactless
| perinatologist that we'd define "active labor" as actually
| pushing. So we delayed getting her off her pump/CGM and self
| management for quite a while. And by then we'd also fortunately
| convinced our nurse who was responsible for the insulin that we
| knew what we were doing. So she consulted with my wife
| (literally between contractions and pushing) on any insulin
| delivery. They adjusted the plan in real time based on what my
| wife said they should do. Had they just followed the
| script/protocol the hospital had, we probably would have seen
| them give my wife way too much insulin.
|
| Then for the rest of our stay, the hospital insisted on
| checking her blood glucose with finger pricks, though she was
| self treating with her pump. It really felt like it was for
| their benefit and not hers.
|
| It was really clear that literally every person we interacted
| with (except maybe the tactless perinatologist) knew less about
| T1D than we did. They are much more setup for poorly managed
| gestational diabetes.
|
| Watching the hospital try to manage her T1D made us feel like
| we were jumping back in time a decade or two. And this was one
| of the big, nice, (and expensive) hospitals in San Francisco.
|
| If she would have had a c-section or some other situation where
| she wasn't able to help direct her diabetes management, I'm
| kind of afraid of what could have happened.
|
| It really made me wonder why there wasn't an artificial
| pancreas type system for hospitals.
|
| Now I see that someone is actually working on that!
| idealmedtech wrote:
| Sorry to hear about your terrible experience, which is
| unfortunately all too common when it comes to glucose
| control.
|
| We're on _exactly_ the same page. When people really get what
| we're doing, often times the reaction is "wait, that doesn't
| exist yet?" The reasons are complex, and there's lots of
| hurdles to overcome (IMT was formed in 2014, in development
| since 2007, we're only just now starting human trials), but
| we believe that there are millions of people every year who,
| like your wife if you hadn't spoken up, slip through the
| cracks and suffer from poor glucose control in the hospital.
|
| Glucose control has the potential to be the next penicillin,
| in terms of how broadly applicable it is, and how drastically
| it reduces mortality across a whole range of conditions.
| We're pretty excited about it!
| Guidii wrote:
| Sorry to hear about hat - it must have added a huge amount of
| stress.
|
| I had a similar experience thirty years ago, after being
| hospitalized for ketoacidosis. (Fun fact: As a DKA patient, I
| found myself next to an attempted suicide, and noticed that
| med staff treated us both with disdain. Seriously bad way of
| managing health outcomes. But I digress.)
|
| The experience in question was a doctor-prescribed insulin
| injection that the nurse insisted on injecting. I objected,
| but was unable to be heard. I calmly demanded that the nurse
| return at 11PM with orange juice to counteract the reaction
| that was inevitably coming. She did, and the crisis was
| averted. The next day the doctor prescribed that I could
| manage my own dosage.
|
| Diabetes management is remarkably complex, and few medical
| folks know how to do it.
| md2020 wrote:
| My girlfriend has T1D, she diagnosed when she was very young.
| She's great at managing it and has a pump and a CGM, but
| there's still so much bullshit that she goes through when parts
| break. It's really made me furious at the medical device
| industry, so I'm happy to see you're working on new solutions.
| As a software engineer, I often wonder if there's anything I
| can do to help with T1D management, so if anyone knows of
| projects/companies that need devs, I'm all ears.
| idealmedtech wrote:
| OpenAPS is the big one, though I think they need
| _documentation_ more than code. Reach out to Dana on Gitter
| or Twitter, she's always been very helpful in the past!
| mammalroyalist wrote:
| How does one go about getting on the list for trials?
| idealmedtech wrote:
| Recruiting is usually handled by study centers, and depends
| on the study. We're going to take in healthy volunteers for
| this current one, but I don't think we have any say on who,
| unfortunately! Would also present a potential conflict of
| interest to have anyone even tangentially related in the
| study.
| BasDirks wrote:
| To the author: you're doing a great job.
| Aqua_Geek wrote:
| I had a pancreatic tumor a couple of years ago that messed with
| my insulin levels (made me hypoglycemic). That gave me a much
| deeper appreciation for the struggle those with diabetes face. I
| had a CGM and had to watch to make sure my blood-sugar didn't
| plummet. The "solution" in those cases was to eat; I only really
| had to worry about it one-way, as my body was over-producing
| insulin.
| sgt101 wrote:
| Daughter got this - 100% funding for a CAMaps closed loop system
| + all the insulin etc. Ty UK NHS
| sgt101 wrote:
| Reply to dead comment: Suffolk Trust, I think because the
| system came out more or less as she got diagnosed they were
| keen to get her on it (after 6mths learning to do it by hand).
| throwawaybetes wrote:
| jamesvnz wrote:
| That was a detailed post. Fellow kiwi and parent of a T1D
| diagnosed at the same age. Our kid is now 16, so I'm pleased to
| have the toddler years behind us. That said, teenage years bring
| different challenges.
|
| I wish we'd had the option of a CGM at diagnosis - despite the
| various challenges they simplify so much. We were early into
| pumping - around age 4. Now using closed loop CGM + pump.
|
| There's a good T1D subreddit for tips and advice. My one bit of
| advice, is that if you're having issues with bolusing before a
| meal and the kid then doesn't eat, is to bolus after or split
| bolus. It's not ideal, but it's massively better than cranking
| them full of insulin for them to then refuse to eat.
|
| Good luck!
| grahar64 wrote:
| We are very lucky for the state of the technology at the
| moment, and that we can afford it. I spent a lot of the time at
| the hospital on the subreddit, seeing people living and being
| happy with it was very good for my morale. We are 100% trying
| the split bolusing after he went low tonight from not wanting
| to eat his food. He doesnt mind the injections too much,
| especially if he is eating cheese or has "wheels on the bus" on
| the TV :)
| 1123581321 wrote:
| Fun read. In addition to a CGM, there are some useful apps to
| help with some of that math--I use Inpen which also syncs my
| Novolog pen injections to the app.
|
| Consistent exercise also helps adults make the math consistent,
| as does diet. Good luck with a toddler or teenager in those
| areas. :)
|
| A sense of when to preoccupy yourself and when to focus elsewhere
| can be difficult to develop. Some do not have the personality to
| accept the lifestyle, and it makes me sad both to see people
| overthink things to the point of tears and limit their life, as
| well to see wanton carelessness. But both are understandable
| because you know a number 20 points off the ideal mark represents
| potential years of shortened life, which tempts obsessiveness as
| well as hedonism.
| sarusso wrote:
| A side comment: beware of how CGM systems are evaluated, it is
| like if basic statistics gets constantly ignored [1]
|
| [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5375072/
| nmhancoc wrote:
| I just happened to do some reading and listening recently on a
| topic in exercise science that may be helpful for diabetics.
|
| Tl;Dr: The body has two basic metabolic systems, glucose
| oxidation and fat oxidation. Fat oxidation can be trained to be
| more powerful (as in wattage of output) through high volume, low
| intensity exercise. Clinicians have observed higher insulin
| sensitivity in patients who undergo this training, as their
| bodies simply use their blood glucose system less and thus use
| insulin less day to day.
|
| Here's a link to the paper [pdf]:
| https://sci.bban.top/pdf/10.1007/s40279-017-0751-x.pdf
|
| And here's a link to a (several hour) podcast between the author
| and a clinician talking about the results. It also has time
| stamps to sections about diabetics.
| https://peterattiamd.com/inigosanmillan/
|
| I'm not affiliated with the paper, author, or podcast in any way.
| I just came across this research and my dad's diabetic so I was
| motivated to learn more.
| savant_penguin wrote:
| I find it really curious that evolution didn't get rid of such
| nasty condition.
|
| Too much sugar you die, too much insulin you die.
|
| And that affects you since birth.
|
| How is it possible that something so deadly (that I assume is
| genetic) still exists?
| alex_stoddard wrote:
| It's an auto-immune disease with complex causality. It doesn't
| necessarily manifest at birth, the time to develop the auto-
| immune response and for it to become severe varies. For some
| individuals perhaps it never develops.
|
| The same propensity to develop a harmful (until my mother's
| generation invariably fatal) immune response attacking the
| body's own insulin producing cells might be an advantage to
| fighting off certain infections (possibly in a different
| genetic context or living with a different set of environmental
| exposures).
| parrellel wrote:
| It's an autoimmune condition that needs to be triggered by
| "something" where something is thought to be some random
| unknown subset of mild childhood illnesses.
|
| Functionally, it means every generation or three you lose "a"
| kid at age 1 or 5 or 11, that isn't too much in the way of
| evolutionary pressure, especially given how many kids people
| used to have, and how many other ways there were for them to
| keel.
| ray__ wrote:
| It isn't (entirely) genetic. There are some genes that are risk
| factors, but no one knows what causes T1D. It also doesn't
| affect you at birth-it's an autoimmune disease that usually
| manifests between the ages of 3 and 20 but can appear at any
| time in life (see the other commenter in this thread whose wife
| developed T1D in her 40s). In keeping with this, the risk
| factor genes are mostly related to the immune system. Even in
| populations with the highest risk haplotype, only ~5% develop
| T1D, and many people without this haplotype also develop T1D.
|
| If it were purely genetic, evolution would have selected
| against these genes long ago since T1D was a terminal disease
| with a life expectancy of less than a year until the discovery
| and development of insulin-based therapies in the 1920s.
| jedwhite wrote:
| Another long-term T1 here. This is one of the best posts I've
| read describing how hard it is.
|
| The only thing I'd add after a couple of decades... the
| psychological side gets harder and harder as fatigue sets in, and
| you have to keep working harder and harder to beat it.
|
| I can't imagine how difficult it would be for a parent and for
| the post's author. That sounds 1000x harder than facing T1 for
| yourself. Some of the stem cell research work being done is
| really exciting. And there is hope that by the time this little
| kid is grown up, it might be a solved problem.
|
| In the meantime, shame on the pharmaceutical companies for their
| years of price gouging with insulin in the USA, a creation for
| which the original patent was gifted to the world for free.
| sweston4 wrote:
| I'm a type 1 diabetic and data scientist. Estimating the causal
| effect of a unit of insulin or food on blood sugar is an absolute
| crap shoot. Consider that there's a +/-20% margin of error on the
| reported carbohydrates on nutrition facts. We might consider this
| irreducible error that just cannot be modelled (Maybe you could
| get a calorimeter, estimate the distribution of errors, and
| reduce that error somewhat). Therefore, even if we created a
| model that explained all explainable variance, we still have a
| 20% margin of error. If a meal has enough carbohydrates, a 20%
| overestimate of insulin requirements would lead to an insulin
| overdose that would kill you if the resulting low blood sugar is
| not dealt with. In other words, the irreducible variance is so
| large that a "perfect" model would regularly suggest lethal
| insulin doses.
|
| My "solution" is to eat low-carb/keto as a "variance reduction"
| strategy. Still, removing carbs also introduces gluconeogenesis
| (the production of glucose from protein) as a factor to consider.
| The synthesis of protein to glucose also occurs on a much time
| different time horizon than the consumption of carbs themselves
| which has implications for insulin dosing and insulin type.
|
| I could go on! But long story short, modelling blood glucose is
| bloody hard.
| m_kos wrote:
| > gluconeogenesis
|
| I am very curious about gluconeogenesis. I am well aware of
| this pathway but have read a few times that glucose generation
| from protein happens very rarely. Have you ever tried eating
| zero carb whey protein in a fasted state? If yes, have you
| noticed a spike in glucose? I am genuinely very interested in
| your experience with gluconeogenesis as a person with diabetes.
| sweston4 wrote:
| Oh, I am very happy to answer this to the extent I can. Whey
| protein impacts my blood glucose in confusing ways! Most
| days, I'll have a whey protein shake that consists of one
| scoop whey protein, a little bit of coffee for taste, and
| some almond milk. This will typically be my first meal after
| ~12-16 hours without eating. The correct dose of insulin for
| this shake can vary from 2 units of insulin to 4.
|
| First, I believe you're correct that gluconeogenesis happens
| rarely. More specifically, I believe it happens in the
| absence of carbohydrates in the food you consume. Since I eat
| a low carb diet, it would make sense that I experience
| gluconeogenesis.
|
| Second, have I noticed a spike in glucose? Yes! I have to
| take some amount of insulin if I have a protein shake. The
| coffee has no effect, so any effect comes from the almond
| milk and whey. There's maybe half a cup of almond milk in my
| shakes which is close to negligible. We can probably assume
| that whey drives most of the glucose effects from my shake.
|
| Third, why is there so much variance in my blood glucose
| response and insulin requirements? Here, I do not have a
| defined answer. One aspect may be that whey is quickly
| digested. The quick digestion may accelerate the effect of
| gluconeogenesis. Another factor may be the state of the
| glucose reserves in my liver before I consume the whey. If
| I'm in a state of ketosis, it may be that my body accelerates
| gluconeogenesis because it believes it's in a carbohydrate
| shortage. In this situation, the glucose spike may exceed
| what would otherwise be expected. There's a few other things
| such as exercise I'd include here, but I don't have a single
| definitive answer to this.
|
| A final note: In some sense, I can feel/anticipate my insulin
| sensitivity during the day. I cannot explain this in writing
| in any coherent way, but I have decent intuition on what
| insulin dose between 2 and 4 units I should pick each day.
| Or, before bed, even if my blood sugar appears constant and
| in-range, I may anticipate that it'll go up and down as I
| sleep and eat/inject insulin accordingly. One part of this
| intuition is "knowing" rather a protein heavy meal will kick
| into gluconeogenesis while I sleep. Anyways, I can answer
| more, but as you can perhaps tell, most of my explanations
| are of the _waves hands_ variety.
| consp wrote:
| > have to take some amount of insulin
|
| There are quite a few pathways for your muscles and liver
| to release "stored glocose". If you want to artificially do
| it, get a glucagon siringe and get the worst hyperglycaemia
| you ever had since your liver starts converting glycogen
| into glucose en-masse. Natural release of glucagon is also
| regulated by having a low carb diet.
| LtdJorge wrote:
| I just want to point out that gluconeogenesis can also use
| fatty acids to obtain glucose.
| btowngar wrote:
| And there can be large errors in the CGM data as well!
| mellavora wrote:
| > that would kill you if the resulting low blood sugar is not
| dealt with.
|
| My wife is type I, so I have a sense of what you live with.
|
| She bought a book, "The Insulin Murders", which looked at a
| number of cases where insulin was the weapon of choice. The
| good news is that it is actually really hard to die from low
| blood sugar, assuming good medical care is available.
|
| Coma to death is > 12 hours, more like 24 or 48. Assuming other
| people are around, there is plenty of time for medical
| response. And treatment is easy, glucogon turns it around in
| minutes.
|
| And I'm not sure a 20% insulin overdose would trigger coma.
| Definitely hypoglycemia, but blood sugar has to be pretty low
| for coma.
|
| Look, I'm not saying it is easy, and risk of harm from getting
| it wrong is high (as you wrote), but risk of death is much
| lower than you might think
| coldpie wrote:
| > The good news is that it is actually really hard to die
| from low blood sugar, assuming good medical care is
| available.
|
| Yes, but the bad news is it only takes one mistake to do you
| in, and the battle never stops for your entire life. I had a
| fellow T1D friend die last summer from hypoglycemia.
| Wikipedia says (with a citation, available at link):
|
| > In terms of mortality, hypoglycemia causes death in 6-10%
| of type 1 diabetics.
|
| It's the kind of thing that hangs over you. Every time you go
| to sleep, you wonder if maybe you took too much at dinner and
| this will be your last night. (I'm sure you know this from
| your wife--there's a reason she was interested in that book--
| but the reading audience may appreciate the context.)
|
| [1] https://en.wikipedia.org/wiki/Hypoglycemia
| sgmoore wrote:
| > The good news is that it is actually really hard to die
| from low blood sugar, assuming good medical care is
| available.
|
| And yet, have there not been a number of cases where medical
| professionals have been convicted of the murders of several
| patients by injecting them with insulin? I would expect that
| these patients should have had 'good medical care' available
| to them.
|
| I have not read the book, but perhaps it is ignoring the fact
| that extreme hypos may trigger other problems such as heart
| attacks. When a condition becomes common enough to be given a
| non-medical name, as in the 'dead in bed' syndrome, then I
| you can't *assume* you will survive for 24 hours.
|
| The risk of death might be lower than I think, but I'm not to
| be ignoring any alarms I get.
|
| (Type 2 but insulin dependent)
| pimeys wrote:
| It adds a bit to the risk that going down to hypoglycemia is
| not very good for your brain cells. And staying in hyper is
| not good for your cells in general, for your eyes or for your
| internal organs.
|
| You might not die, but might develop some nasty problems
| later on in your life...
| idealmedtech wrote:
| Insulin overdose is very hard to die from, but it can easily
| cause permanent brain damage. And that's just in healthy
| adults. In terms of immediate risk, hypoglycemia is far more
| dangerous than hyperglycemia (though this is not to discount
| the severity of DKA).
| Trasmatta wrote:
| > The good news is that it is actually really hard to die
| from low blood sugar, assuming good medical care is
| available.
|
| Except it's extremely hard to get medical care when your mind
| and body shuts down because of a severe case of hypoglycemia.
| There isn't always somebody around to call an ambulance.
|
| If you haven't experienced a severe episode of hypoglycemia
| yourself, you really don't understand fully how it can effect
| both the mind and body, even if you've seen it in your wife.
|
| And like the other poster mentioned, 6-10% of T1D's die of
| hypoglycemia. It's a lot easier to die of than you're giving
| it credit for.
|
| If COVID had a 6-10% death rate, I don't think anyone would
| be saying "it's actually really hard to die from COVID".
|
| > And I'm not sure a 20% insulin overdose would trigger coma
|
| You can experience hypoglycemia _without_ any insulin
| overdose. There are many other factors that impact your BG,
| and sometimes a combination of those will hit a T1D with a
| severe hypo, even if they took what should have been the
| correct insulin:carb ratio.
| sgmoore wrote:
| > You can experience hypoglycemia without any insulin
| overdose.
|
| One of the worst hypos that I have had (Fingerprick said
| 1.9mmol/l which is about 34 mg/dl) was a 'Lantus low' which
| is not really an overdose.
| sweston4 wrote:
| I 100% agree with what you're saying.
|
| Assume a 1:10 insulin to carb ratio (though I don't think
| insulin dosages have a strictly linear effect) and a meal of
| 100 carbs. If the meal, in reality, has 80 carbs, you've
| injected two extra units of insulin. We might expect a unit
| of insulin to reduce blood glucose by 30-50 mg/dl, so we've
| reduced our expected blood glucose by 60-80 mg/dl. If you
| target a blood glucose of 80 mg/dl, this would mean your
| expected future glucose is 0-20 mg/dl. In that case, you
| would die.
|
| Now, the problem with this example is that I would 100% take
| action to avoid dying, so my actual risk of death is still
| minute despite having a lethal dose of insulin in my body at
| the time I inject myself. However, it's still a bit strange
| to know that, conditional on me taking no independent action,
| I'm hours away from death in certain situations.
| dsaavy wrote:
| This "variance reduction" strategy is also an approach by Dr.
| Richard Bernstein. Basically smaller doses means smaller
| mistakes. It's a great approach in my opinion. Obviously the
| key is sticking to a low-carb diet for that to work, along with
| tweaking your basal insulin dosage.
|
| For me, this approach worked when I switched from Novolog to
| Novolin R, which has a slower effect rate. I use shots so it
| helps match the blood sugar profile of eating higher protein
| and fat meals. If you use a pump, you can adjust your bolus to
| give a % upfront and a % over a period of 2-3 hours so that you
| can match the slower glucose production from protein. In
| Bernstein's book, he had some typical ratios for grams of
| protein to insulin that turned out to be pretty close for me.
|
| It obviously doesn't solve everything but I certainly feel
| better when I'm at 60 and have 1.5 units on board compared to
| if I had 7. The Novolin R makes me feel even better because I
| also know my blood sugar can't drop too fast, where Novolog I
| could be dropping 6-7 mg/dl per minute. So I have time to react
| and let my body absorb some simple sugars before it's too late.
|
| Just a personal anecdote, maybe someone will find this useful!
| sweston4 wrote:
| Thanks for this! Bernstein's book is the source of my
| "variance reduction" strategy too! The one thing I haven't
| adopted is the slower acting insulin. It's one of those
| things that I know I should try but just haven't gotten
| around to yet, so thanks for the extra incentive to try it.
| whatshisface wrote:
| > _Consider that there 's a +/-20% margin of error on the
| reported carbohydrates on nutrition facts._
|
| Is this accounted for by product-to-product variation or
| package-to-package variation?
| stonemetal12 wrote:
| The 20% seems to be how much you are allowed to lie by. You
| get another bit for variability of the test, and a third
| error term for variability of "good manufacturing practice".
|
| Here is the actual rule from https://www.accessdata.fda.gov/s
| cripts/cdrh/cfdocs/cfcfr/cfr...
|
| A food with a label declaration of calories, total sugars,
| added sugars (when the only source of sugars in the food is
| added sugars), total fat, saturated fat, trans fat,
| cholesterol, or sodium shall be deemed to be misbranded under
| section 403(a) of the act if the nutrient content of the
| composite is greater than 20 percent in excess of the value
| for that nutrient declared on the label. Provided, That no
| regulatory action will be based on a determination of a
| nutrient value that falls above this level by a factor less
| than the variability generally recognized for the analytical
| method used in that food at the level involved.
|
| Reasonable excesses of vitamins, minerals, protein, total
| carbohydrate, dietary fiber, soluble fiber, insoluble fiber,
| sugar alcohols, polyunsaturated or monounsaturated fat over
| labeled amounts are acceptable within current good
| manufacturing practice.
| bosie wrote:
| I am not a lower but the 20% do not seem to be about carbs.
| Only sugar. Carbs are only covered by the second paragraph
| and must be 'within current good manufacturing practice',
| whatever that means. Am I reading this wrong?
| kahrl wrote:
| The toothless FDA allows for a 20% margin of error on
| nutrition facts labeling, so it could possibly be one or the
| other or both.
|
| Some products may just have variation. Some foods will be
| maliciously mislabeled with 19% less calories/sugar/fat but
| may have little to no variation within the same product.
| [deleted]
| MattGaiser wrote:
| I am beginning to believe those who count calories and lose
| less weight than they anticipate.
| jamiek88 wrote:
| Yeah 20% is massive if most of your calories come from
| carbs.
|
| Sensible dieting talks about 10% reductions in intake
| along with light exercise.
|
| Trying to manage that by those labels would be
| impossible.
|
| However eating packaged processed foods isn't a very good
| way to lose weight anyway.
|
| I lost 180lbs a few years ago by cutting processed food,
| soda and alcohol out of my diet. Didn't change anything
| else.
|
| I presume the carbs in veggies are pretty much accurate
| by weight a carrot is a carrot (except for water
| content).
| ineedasername wrote:
| In addition to the margin of error on food labels, there's also
| the margin of error on blood tests, which IIRC from the spec's
| on the one my wife uses it too is about +/- 20%.
|
| If you have the misfortune of having those errors match up (and
| they will at times) they you eat something that overestimates
| carbs by 20% and a blood test that overestimates your current
| glucose level by 20%. Give yourself a corresponding dose of
| insulin and drive your levels through the floor.
| jzb wrote:
| This was a great primer. I have a senior diabetic cat. It's not
| unlike trying to manage diabetes for a toddler. He might eat all
| his food, he might not. He might eat and throw up an hour
| later... it's a tricky disease to manage. He's had a few episodes
| of hypoglycemia and it's scary. Can't imagine having to face that
| with a child.
| tamaharbor wrote:
| I cried for days after my 11 year old daughter was diagnosed with
| Type 1 Diabetes. The first week we almost killed her with an
| Annie's soft pretzel. It's been better since then. It is possible
| to live a good life, and be healthier than many without the
| disease.
| coldpie wrote:
| I don't know how long ago that was for you. I was diagnosed at
| 13 (in 2001). If it's managed well and she has support, and it
| sounds like it is and she does, then it does indeed get better.
| It sucks, but it doesn't need to dominate one's life, it just
| becomes a part of you and you move on with it.
|
| Best.
| ineedasername wrote:
| Rule #1 if T1D is never be out of reach of food.
|
| The author of this article is correct that too little insulin is
| bad, but the margin of error for acute distress in that direction
| is much more forgiving for high blood sugar than low blood sugar
| (at least in the short term dying-on-the-floor time frame)
|
| Target level is around 90. A little too much insulin can easily
| push that down to 25/35, which gets you into passing out
| territory. Conversely, you can get up to 300-400 by not having
| enough insulin and simply feel very crappy. (Caveat: an 18MO's
| system may be much more sensitive to highs at that age)
|
| So yes, the acute dangers skew more towards too much insulin &
| low blood sugar, which is quickly fixed by a high glycemic index
| food. A small tube of icing is a good emergency supply here,
| especially for a loved one to carry. If the person with T1D is
| unable to help themselves then you can gently smear the icing in
| their mouth and it will begin getting absorbed pretty quickly.
| Not quickly enough to avoid a terrifying experience, but it
| works.
|
| We have small stashes of shelf-stable snacks and juice boxes all
| over our home, multiple layers of redundancy when outside the
| house... It probably seems strange from the outside, but after so
| long it just feels normal and there's no feeling of cognitive
| overhead thinking about it.
| grahar64 wrote:
| We already had nappies, wipes and bags hidden everywhere as
| emergency supplies. We just added the hypo packs of juice and
| shelf stable baby treats to them :)
| ineedasername wrote:
| Hah, yes-- since exiting your home with a young child is
| already an exercise in micro logistics, adding one more item
| to the list is pretty straightforward.
|
| I'm sure you're already aware of the advantages of pumps, so
| I'll just chime in with a complete endorsement of them:
| Switching to a pump for my wife certainly made things
| easier-- less planning, more freedom. It was also a
| significant health benefit: Not needing to make educated
| guesses with long/short acting insulin means things stay in
| range on a much more regular basis, which keeps your A1C
| significantly more in control, limiting the long term
| consequences of lifelong diabetes.
| semenko wrote:
| Hey Graham -- great post! The Medtronic / Guardian sensor combo
| is generally disliked by patients, though (in the US) the
| Medtronic 770G is FDA approved for ages 2+.
|
| Most prefer the t:slim X2 with "Control-IQ" (their hybrid closed-
| loop: https://www.tandemdiabetes.com/products/t-slim-x2-insulin-
| pu...), which is FDA approved for ages 6+, and works great.
|
| The bleeding edge is the Beta Bionics
| (https://www.betabionics.com/) bi-hormonal system (insulin +
| glucagon), currently in clinical trials for ages 6+.
| zaroth wrote:
| Bi-hormonal was always something I thought they should do but
| didn't know anyone was actually trying it! Thanks for the link.
|
| Although in theory you've screwed up if you need to bolus
| glucagon. Also, I can't imagine it feels all that great to be
| getting exogenous glucagon....
|
| But from a safety perspective, having the device have a reserve
| tap of glucagon ready to deploy allows the algorithm to deploy
| full insulin dosages and true corrections boluses, versus just
| tip-toeing around a HIGH with a temp basal.
| jnsie wrote:
| > Although in theory you've screwed up if you need to bolus
| glucagon.
|
| Not at all. There are myriad reasons why one might go low
| despite doing everything right. For instance, unanticipated
| cardiovascular activity. T1D is a 24/7/365 PITA and one
| cannot anticipate everything, even with the best will in the
| world.
| pimeys wrote:
| Or the classic: have lunch with your colleagues and then
| walk back to the office. I hope you didn't take all the
| insulin in the restaurant, just half and half back in the
| office. It's a nasty drop otherwise...
| jamiek88 wrote:
| Jesus Christ I'm exhausted just reading these stories.
|
| That's fucking ridiculous.
|
| My aunty was T1D and that was back in the 30's until 90's
| when she died, I never realized what a _hero_ she was.
| Never once heard her complain thus assumed it was easily
| dealt with. She used to just disappear after meals for a
| while. It was like some dark family secret.
| pimeys wrote:
| A loop helps a lot here. You get used to it. It is easier
| if you're anyhow watching grafana daily...
|
| 50% insulin for the lunch. When sitting in front of your
| computer the carbs are working and just press a button to
| dose the last 50%. Or let the automation do it.
| zaroth wrote:
| Oh I 100% agree. I have two kids with T1D.
|
| I think the words "in theory" are probably doing too much
| lifting in my original sentence.
| bleair wrote:
| There's also two "open source" systems -
| https://loopkit.github.io/loopdocs/ - https://openaps.org/
|
| Tidepool is also trying to take the loop project and get a
| version of it FDA approved.
|
| Both of the open source projects require you to do the work and
| actively take control of your setup (a cgm plus pump plus
| phone). They have really nice support communities. I would
| never go back to not using Loop.
| vallard wrote:
| Our 15 y/o son was diagnosed T1D Jan 2020. Finally got him on
| loop Sept 2021 and feel the same way. These developers are
| saints for doing this work. They've given us countless hours
| of sleep. We had another T1D family come visit us and I set
| them up on loop. I was in tears when I got text message from
| them telling us how they their kid is 85% in range and they
| are actually sleeping through the night. These are truly life
| changing projects.
| pimeys wrote:
| I'll be adding one more, I've been using this for some years
| now:
|
| https://github.com/nightscout/androidaps
|
| It's awesome.
| kakoni wrote:
| Indeed! AndroidAPS with omnipod dash+G6 (+Android phone) is
| the latest and greatest setup that you can do
| kakoni wrote:
| + the funny thing is that both openaps/androids + loopkit are
| more advanced than the commercial offerings that we are
| starting to see now.
|
| Medtronic licensed their artificial pancreas system MD-Logic
| from Israeli company DreaMed in 2015. Dexcom bought TypeZero
| (who have system called inControl) back in 2018.
| jacquesm wrote:
| That's to be expected though, self experimentation goes a
| lot quicker than a regulated track. Even so they are doing
| great work, and I'm sure the industry is watching this
| development like a hawk to see what they can pick up.
| grahar64 wrote:
| Yeah, the tslim X2 would be the preferred pump at the moment,
| but by the time he gets old enough for a pump I hope the
| technology will have improved a lot.
| jawngee wrote:
| Our T1D kid has been pumping since 18 months. He was
| diagnosed at 12 months old. He's six now and has been pumping
| nearly the entire time.
|
| We're in Vietnam but we do all his endo related medical stuff
| in Singapore.
|
| Counting carbs in kids is a nearly pointless endeavor. Picky
| eating habits, nutrition mis-labeling (good luck finding
| accurate nutrition information in Vietnam), etc. And you'll
| also need to consider that their bodies are moving targets
| with hormones, growth spurts, etc. It's going to be really
| hard to manage just by math alone.
|
| Being five years into it now, because the math seems to be
| changing daily, we are doing it almost by feeling backed by
| CGM evidence. In our case, the only CGM available here is the
| Freestyle Libre which is mildly inaccurate except for
| informing us on the general direction his blood sugar is
| taking. It's enough info that we've gotten his hb1ac into
| near normal range and the miaomiao3 turns into a full fledged
| CGM that we can use with nightscout and xdrip4ios for
| realtime monitoring.
|
| I'd also advise you to think about joining a group of parents
| of T1Ds because there's a lot of things to learn and I've
| personally found it helpful when working through edge case
| scenarios that will eventually happen.
| newbie789 wrote:
| [deleted]
| code_duck wrote:
| This a good article. Pretty much sums up everything.
|
| I developed type 1 two years ago as an adult, over 40. It's
| difficult enough for me, as a former software engineer who has
| always been decent at doing math in my head. I practically die
| every other week or so. Just tonight I walked to a bar and barely
| made it back because I didn't bring enough extra Doritos. Having
| an infant or toddler with t1 must be nuts. In addition to all the
| factors mentioned here, I read a medical article a while back
| which asserted that no two doses of insulin affect someone
| exactly the same. That's my experience too. Struggles with the
| medical/insurance system make it even more difficult, whether
| it's the total mess of the US or systems like the British NHS.
| The entire thing is basically insane.
| dxbydt wrote:
| Dunno if the millennials,Gen Z,Gen A etc. know these sorts of
| things - well, there is an old lady by name Julia Roberts who was
| nominated for an Oscar (its like an award) for a movie about Type
| 1 Diabetes that I first saw in a theater (that's like a place
| where us Boomers go to watch stuff you would normally see on your
| iPhone). I don't know if you have the patience to sit through a
| long, quite funny and very talkative movie about a bunch of old
| ladies, one of who's a diabetic, talking about everything under
| the sun but diabetes, in a salon. Half the diabetic community
| believe the movie is over dramatized or what have you, but hey,
| the other half disagrees. Regardless, it remains one of my most
| favorite films. https://en.wikipedia.org/wiki/Steel_Magnolias
| johnyzee wrote:
| Sorry to hear what you are going through. A couple of comments
| from someone with an interest in the topic, but obviously not
| your practical experience on the front line as it were:
|
| (1) You mentioned ISF (insulin sensitivity factor), but what you
| did not mention is that this is not a static factor. It is
| possible to significantly improve insulin sensitivity through
| diet and life style, and this is particularly useful for people
| with T1D. Part of this is to adapt to a significantly less carb-
| based diet. This is absolutely doable, carbs are not an essential
| nutrient.
|
| (2) "If your BGL is high for a while (with high levels of
| ketones)" - this sounds wrong to me. Ketones are high when
| availability of glucose is low. In many ways this is the ideal to
| aim for. Ketones are a substitute for glucose, produced from fat.
| If the person is well adapted for producing and utilizing
| ketones, s/he can replace carb consumption with fat, which is
| insulin neutral, and avoid the wasting away of muscle mass which
| happens with T1D, because the body is energy starved and breaks
| down protein for glucose.
|
| Just some well-meant input, hope to not sound glib in the context
| of your challenges.
| grahar64 wrote:
| AFAIK Ketones go high when glucose is low <b>in cells</b>, not
| in blood. DKA is literally so many ketones in the blood that it
| becomes acidic, this happens in conjunction with high BGL. Sams
| breath when he was in DKA was literally sweet smelling as his
| body was trying to get rid of the excess glucose. There is
| plenty of glucose, just none of it is available.
| terrbeardotorg wrote:
| "Ketones are high when availability of glucose is low" - it
| seems the body calculates this based on the amount of insulin
| available, which is why you can eat nothing (and have no basal)
| and have a BG spike.
| ksaun wrote:
| Right -- because you have insufficient insulin available,
| cells cannot utilize the glucose. So your blood glucose
| rises. If BG is too high for too long, ketones build up,
| leading to diabetic ketoacidosis (bad), which is different
| than the ketosis (good) sought by a ketogenic dieter.
|
| People with T1D are taught to check keytones if BG is very
| high (CDC says > 240 mg/dL; we were taught > 300) for an
| extended period of time, or also when sick.
|
| https://www.cdc.gov/diabetes/basics/diabetic-
| ketoacidosis.ht...
| beached_whale wrote:
| The one that a lot of people seem to neglect is that the factors
| change. This can be slow or abrupt and often or rare. It happens
| and learning to recognize(the hard part) and then adapt can lead
| to better outcomes. Waiting for a MD/Nurse to suggest changes is
| often too long.
| berkes wrote:
| > is that the factors change.
|
| Indeed. The weather, (lack of) sleep, stress, mood, etc. All
| can have a big influence on the rates and factors.
|
| For me, for example, summer is entirely different from winter
| (and spring and autumn). _if_ everything else would remain the
| exact same, then still I 'd have to switch rates at least twice
| a year because in summer my body works different. apparently.
| Trasmatta wrote:
| > Waiting for a MD/Nurse to suggest changes is often too long.
|
| Exactly this! I am single expert on my diabetes. Doctors and
| endocrinologists are helpful, but they don't know all the
| factors that effects my BG in both directions on a _daily
| level_. I have to adjust how I do things all the time.
| zaroth wrote:
| This is an excellent point. What makes this even harder is that
| some of the changes (like basal rates) the equipment is good
| about supporting multiple profiles and letting you switch
| between them. Where as the carb ratios and correction factors
| are set once and overwritten when you update them, and hard to
| generate reports on how they are changing over time... so not
| designed to really be adaptable.
|
| There are micro factors (time of day, activity level, sickness
| level, gut health) and macro factors (months/years, age-
| dependent / hormone-dependent, growth spurts, climate / time
| indoors versus outdoors, etc.) factors that will impact both
| your basal rate and your carb ratio / correction factors.
|
| So the carb ratio and correction factors are programmed based
| on hour of the day. 18 carbs per unit from 12am - 8am, 16 carbs
| per unit from 8am - noon, 14 carbs per unit from 12-8pm, etc...
| and then all these numbers may need to be shifted from time to
| time.
|
| The urge is to somehow try to track everything (mood, health,
| activity, phase of the moon, food intake, and of course your
| blood glucose level every 5 minutes) and input into an
| algorithm that will look at how often you ended up too high or
| too low after eating XYZ, or how much your BG rose or fall when
| you weren't eating, and then make tiny incremental adjustments
| to the carb ratio, basal rate, and correction factor curves
| every week.
|
| Currently the state of the art is the doctors generates a bunch
| of reports once every 3-6 months, eyeballs them, and decides;
| "Hey, we're gonna try bumping up your morning basal rate by X,
| change your evening carb ratio by Y, and ..." and then you make
| the changes and hope things get easier.
|
| When the ratios are right, you can dose for what you eat, and
| end up back in range after a few hours. You can give yourself a
| correction and go to sleep, and wake up in range, etc.
|
| The "artificial pancreas" is going to do a tiny percent of this
| job. It will basically see you are high or low based on the
| 5-minute BG reports, and bump your basal rate either up or down
| slightly to put a finger on the scale and move you in the right
| direction.
|
| It doesn't know what you eat, so it can't bolus for meals. It
| might eventually get you back in range many hours later. Even
| with fast acting insulin, you have to bolus ahead of time
| anyway to get an ideal glucose response, so it's not something
| an artificial pancreas will be able to solve without much
| faster acting insulin.
| beached_whale wrote:
| I use Loop and it takes a LOT of the thought out of it. Being
| incorrect is ok because the system a) knows about what the
| work of the carbs should be and b) is often checking the
| glucose levels vs predicated(from carb/insulin curves) and
| doing small corrections via either basal rates or bolus's.
|
| The way it plays out those is that being wrong is ok. So the
| carb count is off, what was important was that it was timely
| and roughly close. What this makes more difficult though is
| seeing the patterns of when it is doing corrections more
| often. There's software for that too. Also, disabling it and
| seeing what happens can give some insight. Another thing is
| that systems that use temp basals to reduce insulin introduce
| a state of low insulin levels and a "bounce back". This is
| where I would like to see a system that converts that
| negative insulin back into carbs. I can do it, but would be
| nice.
| pimeys wrote:
| The oref1 algorithm in AndroidAPS can detect unannounced
| meals and together with a very fast insulin such as Lyumjev
| can automate meal boluses for some people.
|
| I know diabetics in 85% in range using this method. Doesn't
| work super well for me though.
| veryfancy wrote:
| Parent of a seven-year-old T1D here. We've had him DIY looping
| (Omnipod, Dexcom, LoopKit) for years now. (Wow, time flies.)
| Cannot recommend this technology highly enough.
|
| Actually, there were a few big wins, in series: started with MDI
| (multiple daily injections) and finger pricks. That was awful
| with a two-year-old, lemme tell ya. Then we got CGM (and
| Nightscout). That let us sleep at night. Sometimes. But we still
| had to perforate our small child several times a day, sometimes
| holding him down as he screamed. Eventually we got a pump, so
| needles were far less frequent. Got a prescription for some
| numbing cream, which helped a lot, too. And then came Loop. Loop
| streamlined the meal process and gave us a lot more margin for
| error, and it cut down on ad hoc corrections. With Loop, we now
| sleep _most_ nights. And things feel almost normal most of the
| time.
|
| Carb math is still a lot of work. (Admittedly, we're probably
| more precise than most people.) And the whole system can just
| stop working well for reasons you can't discern sometimes. (Nah,
| it's always a growth spurt.) But this combo if T1D tech has
| really, seriously changed our lives. I'm so grateful to the folks
| who built the open source parts of it.
| mhb wrote:
| Is a CGM one of the only things that is cheaper in US healthcare?
| GoodRx has the Dexcom G6 for under $400. He says a CGM is
| NZ$400/month (~US$270).
| zaroth wrote:
| CGMs are disposable, for example the Dexcom sensor that is
| replaced every 10 days.
|
| There's a transmitter part which plugs into the sensor and has
| a Bluetooth radio and a battery which is cheaper and lasts
| three months. You pop it off an old sensor and click it into a
| new one every 10 days until it expires.
| GiorgioG wrote:
| IIRC the Dexcom G7 will have the transmitter built-in (and
| thus will also be disposable.) I'm happy about this b/c
| transmitter expiration anxiety is real with insurance
| companies being so stingy - you're lucky to get your new
| transmitter only a few days before the old one expires.
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