[HN Gopher] The Unreasonable Math of Type 1 Diabetes
___________________________________________________________________
The Unreasonable Math of Type 1 Diabetes
Author : grahar64
Score : 305 points
Date : 2022-02-17 18:33 UTC (4 hours ago)
(HTM) web link (maori.geek.nz)
(TXT) w3m dump (maori.geek.nz)
| 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.
| 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
| 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.
| 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.
| 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.
| 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.
| 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.
| 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.
| 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.
| 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.
| 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).
| 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.
| 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.
| 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
| 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.
| 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.
| 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".
| 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
| 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.
| 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.
| 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.
| 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.
| [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.
| 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.
| 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.
| 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.
| 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.
| 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]
| 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.
| 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)
| 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.
| 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?
| 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.
| sgt101 wrote:
| Daughter got this - 100% funding for a CAMaps closed loop system
| + all the insulin etc. Ty UK NHS
| 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!
| 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/
| 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).
| 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.
| 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
| 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...
| 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.
| 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.
| 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).
| 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.
| 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.
| 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
| newbie789 wrote:
| 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.
| 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.
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