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The Unreasonable Math of Type 1 Diabetes
- csee 5y agoIn the inline chart "42 factors that affect blood glucose", how do I interpret the two different arrows corresponding to each entry?
- sgmoore 5y agoIf 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 https://diatribe.org/42factorsexplained gives more details about each of the 42 factors.
- beached_whale 5y agoThe 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.
- zaroth 5y agoThis 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 5y agoI 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 5y agoThe 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.
- beached_whale 5y agoLoop does this too, in a way. But it's still delayed and the insulin peak doesn't match the carb peak. But better than not having too.
- Trasmatta 5y ago> 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.
- berkes 5y ago> 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.
- 1auralynn 5y agoMy 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 5y ago> 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 5y agoProtein 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 5y agoIsn'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 5y agoDifferent 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.
- semenko 5y agoHey 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-pump/control-iq 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/ https://www.betabionics.com/) bi-hormonal system (insulin + glucagon), currently in clinical trials for ages 6+.
- newbie789 5y ago
- zaroth 5y agoBi-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 5y ago> 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 5y agoOr 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...
- Trasmatta 5y agoI'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.
- The_rationalist 5y ago
- jacquesm 5y ago
- jamesvnz 5y agoThat 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 5y agoWe 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 :)
- sweston4 5y agoI'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.
- btowngar 5y agoAnd there can be large errors in the CGM data as well!
- whatshisface 5y ago>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?
- kahrl 5y agoThe 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.
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- giantg2 5y agoSorry to hear that. Onset at that age must be really tough.
- tamaharbor 5y agoI 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 5y agoI 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.
- lewishogan 5y agoI was diagnosed sometime during my second year of secondary school (which I think was 2010-2011, which would make me 13 at the time as well, although I admit I don't remember much) and I can definitely back up the importance of a good support network. I don't know anyone else with this condition and it can be incredibly isolating, and as is the case with many chronic conditions it definitely has a negative impact on mental health. At least in my experience, it's not something that one can just move on with, as it tends to pervade every experience: "Is my blood sugar going to go too low during this exam/interview/event?" is a common thought and there have been many times where I've taken less then an appropriate amount of insulin to ensure that a hypo doesn't occur at the worst possible moment. Ever since the pandemic began health care has been harder to access and it's been much easier to slip through the cracks, though I can't really blame anyone considering the demand on health services, it's certainly a reminder of the importance of taking an active involvement in your health.
- not2b 5y agoMy 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 5y ago> 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.
- i_cannot_hack 5y ago> 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.
- cadr 5y agoI'm going to guess the G6 does not have that correction, based on every shower every day :)
- i_cannot_hack 5y agoAccording 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-conditions-and-glucose-sensors-an-n1-observation/ https://www.diabettech.com/cgm/high-temperatures-extreme-con... [2] https://www.reddit.com/r/dexcom/comments/eyq5h0/hot_and_cold/ https://www.reddit.com/r/dexcom/comments/eyq5h0/hot_and_cold...
- Trasmatta 5y agoAnother 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.
- spaethnl 5y agoI 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.
- zippergz 5y ago
- savant_penguin 5y agoI 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 5y agoIt'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).
- ray__ 5y agoIt 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.
- parrellel 5y agoIt'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.
- zippergz 5y agoIt'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.
- 1123581321 5y agoFun 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.
- mhb 5y agoIs 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 5y agoCGMs 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 5y agoIIRC 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.
- dddiaz1 5y agoI 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/ 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/ https://dddiaz.com/post/glucose-datascience/
- ciceryadam 5y agoLate 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 https://play.google.com/store/apps/details?id=it.ct.glicemia
- sarusso 5y agoBeware 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.
- sarusso 5y agoFor 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 5y agoI'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.
- sarusso 5y agoA 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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5375072/
- shanselman 5y agoI’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
- mikenew 5y agoAwesome 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.
- Trasmatta 5y ago> 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.
- 5y ago
- surfsvammel 5y agoMy 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.
- tasty_freeze 5y agoThis 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.
- sgt101 5y agoDaughter got this - 100% funding for a CAMaps closed loop system + all the insulin etc. Ty UK NHS
- throwawaybetes 5y ago
- sgt101 5y agoReply 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).
- jedwhite 5y agoAnother 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.
- jzb 5y agoThis 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.
- johnyzee 5y agoSorry 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.
- terrbeardotorg 5y ago"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 5y agoRight -- 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.html https://www.cdc.gov/diabetes/basics/diabetic-ketoacidosis.ht...
- grahar64 5y agoAFAIK 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.
- veryfancy 5y agoParent 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.
- mrcwinn 5y agoI 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.
- Hallucinaut 5y agoGreat write up. Definitely dispelled a few misconceptions I had. Kia kaha, mate
- go_blue_13 5y ago>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?
- idealmedtech 5y agoThey'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)
- x0x0 5y agoConsumables -- that go into your body, and hence are expensive to manufacture -- are a big chunk of that cost.
- Nition 5y agoI know this doesn't change your point, but note that it's $400NZD -> ~$270USD.
- grahar64 5y agoThey 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 5y agoInteresting, so it really is a subscription cost as well
- parrellel 5y agoMedical equipment rules and price gouging. More medical equipment standards for the CGMs. More price gouging for the now $300+ vials of humalog.
- idealmedtech 5y agoHi, 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 5y agoHey 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 5y agoIt's @idealmedtech.com! I did it that way to keep the bots away, but perhaps it was a little _too_ effective
- mst 5y agoThe 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)
- nonplus 5y ago@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.
- ineedasername 5y agoRule #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 5y agoWe 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 5y agoHah, 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.
- ineedasername 5y agoInsulin 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)
- intrasight 5y agoI am rooting for new non-invasive monitoring to succeed.
- nmhancoc 5y agoI 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 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/ 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.
- dxbydt 5y agoDunno 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 https://en.wikipedia.org/wiki/Steel_Magnolias
- GiorgioG 5y agoSugarmate 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.
- iaresee 5y agoI 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.
- rob_c 5y agoNow 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 https://github.com/jakebenz/cgm is also related
- davidthewatson 5y agoYour 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/60/12/3256/14406/Brain-Activation-During-Working-Memory-Is-Altered https://diabetesjournals.org/diabetes/article/60/12/3256/144... [2] https://www.youtube.com/watch?v=UwL_iMLbm1k https://www.youtube.com/watch?v=UwL_iMLbm1k [3]https://link.springer.com/article/10.1007/s00125-016-3996-2#:~:text=Recent%20work%20has%20overwhelmingly%20shown,energy%20homeostasis%20of%20neural%20networks https://link.springer.com/article/10.1007/s00125-016-3996-2#.... [4] https://www.levelshealth.com/ https://www.levelshealth.com/ [5] https://www.niddk.nih.gov/about-niddk/research-areas/diabetes/blood-glucose-control-studies-type-1-diabetes-dcct-edic https://www.niddk.nih.gov/about-niddk/research-areas/diabete... [6] https://www.virtahealth.com/ https://www.virtahealth.com/ [7] https://www.faustmanlab.org/clinical-trials/ https://www.faustmanlab.org/clinical-trials/ [8] https://www.longolab.org/ https://www.longolab.org/ [9] https://en.wikipedia.org/wiki/Therac-25 https://en.wikipedia.org/wiki/Therac-25
- Aqua_Geek 5y agoI 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.
- mleonhard 5y agoCity 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-vaccine-candidate-launches-usa-study https://www.precisionvaccinations.com/type-1-diabetes-vaccin... [1] https://doi.org/10.1126/scitranslmed.aaf7779 https://doi.org/10.1126/scitranslmed.aaf7779 [2] https://doi.org/10.1016/S2213-8587(20)30104-2 https://doi.org/10.1016/S2213-8587(20)30104-2 [3] https://clinicaltrials.gov/ct2/show/NCT04590872 https://clinicaltrials.gov/ct2/show/NCT04590872 [4] https://investors.biontech.de/news-releases/news-release-details/biontech-publishes-data-novel-mrna-vaccine-approach-treat https://investors.biontech.de/news-releases/news-release-det...
- BasDirks 5y agoTo the author: you're doing a great job.
- hypefi 5y agograhar64, 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.
- code_duck 5y agoThis 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.
- styeco 5y agoWhat a great article. Like many commenters here, I was completely oblivious to the struggle and I appreciate it a lot more now.
- bayesian_horse 5y agoIf you have diabetes you probably shouldn't have Milkshakes!
- eldonaldo 5y agoHi, 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/ 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.