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.
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.
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.
I had a “drunk” parked in the inside lane of the four lane road in front of my house one evening. He was just stopped in traffic and got out stumbling around. I was annoyed (naturally) and he handed me his phone. Whatever, dude; I don’t want to talk to your friend right now. Somehow he insisted and his friend told me he was diabetic and to call an ambulance.
I did, got him some OJ, and moved his car out of traffic. He went from incoherent and “drunk” to “seemed pretty OK” in just a couple of minutes before the medics even arrived. (He still took the ride, but it was none of my business at that point.)
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
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.
> 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.
> 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.
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...
> I'm literally crying while writing this post, because it's so exhausting and it never ends.
If it helps (?), I also broke down crying reading this, because I have MS and it is so true to my experience. I've never been able to communicate well how exhausting the constant mental load is, and I imagine it's even worse for people with T1 diabetes since blood glucose can get out of whack a lot more quickly than my immune system can make more holes in my nervous system.
You nailed it on the head exactly with the constant balancing.
"Okay, so I didn't sleep for crap last night due to symptoms. Do I have some caffeine and spend the rest of the day in pain due to the increased muscle spasticity? Maybe if I have 3 cups of coffee instead of 1 and also take some of my muscle spasticity medication, I'll be able to stay awake but not be in too much pain. Except if I dip into what are supposed to be nighttime pain meds too often, I might run out of Tizanidine. When will my insurance refill? How much will it cost out of pocket when I have a bad pain month?"
And then I get stressed out about the MS, and we're supposed to avoid stress, so then I stress about my stress. Fantastic.
Oof. Even without any physical issues if I get stressed about stuff in a way that makes it hard to concentrate I usually then manage to do the 'stress about my stress' thing on top of that and damn but that's no fun at all.
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.
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.
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...
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.
Also 30 years here. I have exactly the same thing as you describe though when I switch insulin I do start calculating again to be sure it matches with my assumptions. Blood glucose measuring is required though as you mention. I'm one of the lucky ones with very lineair and predictable response to every unit more or less of insulin. Not everyone is that lucky though.
There are some pros and cons to managing T1D but not being the person actually managing it. The main con is that I have no idea how he is feeling, which makes us very numbers obsessed, hence the post :)
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.
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.
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.
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).
Eh, don't feel bad about the inevitable. My conscious self knows well to just count the carbs when I'm too low to behave. At least then I'll know how much insulin to dose when the curve ticks upwards again.
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.
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.
I'm a T1D for 45 years, and since my first diagnosis there has always been a cure that would be available "within the decade". This is the way.
That being said, every decade has seen life-changing therapies introduced. The introduction of long-lasting insulins. At home testing for glucose and ketones in urine. Mixing insulin formulations together to reduce the number of injections at a time. Thinner needles greatly reduced pain from injections (this one happened almost every year.) Moving from urine tests to blood glucose tests! Introducing shorter-acting insulins that reduce onset time. GLUCOMETERS! Moving from needles to pens allowed crazy-simple and virtually painless injections. Moving from pork formulations to human formulations of insulin. Carb counting: previously we used fixed diet - eat the same thing at the same time every freaking day. INSULIN PUMPS!!! Crazy fast-acting insulin formulations cutting onset down to 15 minutes. CONTINUOUS GLUCOSE MONITORING!!! Tracking and alerting for low glucose, overnight and remote. CUSTOM-BUILT CLOSED LOOPING!!! Reliable/medical grade CGM. Approved closed looping systems.
Many folks have worked very hard to make my life more livable, and I thank them for it. Today is, without a doubt, the best time to be a diabetic.
I wonder if there's any good reason to reduce my pessimism about it: I can't help but think there are such strong economic incentives against having a cure (vs ongoing treatment) that it's very unlikely to become available during my lifetime.
The reason for the immunosuppressants is not the same as for a classic organ transplant. For a normal organ transplant, you need immunosuppressants because otherwise the body will recognise the new organ as being a foreign body that it doesn't recognise as self. For a stem cell transplant, the immune system has already gone around destroying every pancreatic beta cell it can find. The immune system is primed, and it absolutely recognises beta cells as something to destroy. The end goal is to encapsulate the inserted beta cells in a membrane that allows glucose in and insulin out, but keeps the immune system away.
I wake up at the same time and eat the same thing every weekday morning. Still, my bg at noon will range from 3 to 12. This after having this thing for 17 years. Yeah, it's hard.
Edit: On the 42 factors, during-sleep BG is either stable or up. For me it's either side or down (but occasionally up).
I do have the 'pre-sleep' BG that usually goes down, right after brushing my teeth (is it post-brushing then?), which is a well-known factor on Reddit. Basically, doesn't matter if I'm going to sleep at 10pm or 1am. I check my BG, it's 8, arrow straight or even up (CGM indicates the trend). Brush my teeth and check again, 7 with arrow straight down to the floor :/
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.
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.
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.
This is a pretty dangerous comment, if you consider going the Keto route and are a diabetes type 1 patient please consult your doctor, there are some risks involved and it definitely does not work for everybody.
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.
I do want to try keto at some point, as I've heard a number of success stories for keto / low carb and T1D. It's hard to gather the motivation to start it.
One important thing to point out is that you can't reverse T1D with keto, like some people are able to with T2D. It can greatly reduce your insulin requirements, but not to zero. Your pancreas will not return to normal function.
One further thing - the article doesn’t talk much about the physical response to wearing a CGM such as the extreme skin irritation some people get from the adhesive. Or the fact that the CGM reading could be way off the reading you get from a finger prick test - which can in turn vary significantly from a lab test result!
I did the test once with most meters I still had laying around: ballpark correct but according to them my blood sugar level was between 3.8 and about 7 mmol/l. I have one which is very finacky in the 4.0 and lower range which is annoying if you want to know if it really starting hypoglycemia or you are just tired.
Is it not possible to have a device always connected to the bloodstream, with a replenishable supply of glucose and insulin in different compartments, that periodically checks the blood sugar level, and injects what is appropriate to keep it normal?
The pump delivers insulin and gets blood glucose readings from a CGM (continuous glucose monitor) over bluetooth. Then the pump can make decisions such as stopping insulin delivery if you're going to go low, doing small correction boluses, and adjusting basal rate.
However it's far from perfect and still needs a lot of management. My wife has T1D and was recently pregnant, which really raises the bar on how tightly you need to control your diabetes. She ended up mostly micromanaging it all herself rather than trusting Control IQ to do the right thing.
The other issue is CGMs are not that accurate, so these systems are making decisions based on not great data.
It’s just insane. I had no idea until Covid triggered the onset of type 1 diabetes in my niece. I was fortunate to spent time with her a year later. Her mother and father seemed to have aged a decade from the stress. I can only hope that the AI monitored artificial pancreas tech currently in testing is approved for general use soon. The cognitive load of monitoring and treatment is insane; the impact of any unanticipated variance so severe.
A solution to this (from a non-diabetic) would maybe to always be eating a keto-like diet. It's not easy, but far easier than having to constantly juggle 100s of carb combinations.
"Diet" might even be the wrong word, more like a lifestyle.
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.
This "variance reduction" strategy is also an approach by Dr. Richard Bernstein. Basically smaller doses means smaller mistakes. It's a great approach in my opinion. Obviously the key is sticking to a low-carb diet for that to work, along with tweaking your basal insulin dosage.
For me, this approach worked when I switched from Novolog to Novolin R, which has a slower effect rate. I use shots so it helps match the blood sugar profile of eating higher protein and fat meals. If you use a pump, you can adjust your bolus to give a % upfront and a % over a period of 2-3 hours so that you can match the slower glucose production from protein. In Bernstein's book, he had some typical ratios for grams of protein to insulin that turned out to be pretty close for me.
It obviously doesn't solve everything but I certainly feel better when I'm at 60 and have 1.5 units on board compared to if I had 7. The Novolin R makes me feel even better because I also know my blood sugar can't drop too fast, where Novolog I could be dropping 6-7 mg/dl per minute. So I have time to react and let my body absorb some simple sugars before it's too late.
Just a personal anecdote, maybe someone will find this useful!
Thanks for this! Bernstein's book is the source of my "variance reduction" strategy too! The one thing I haven't adopted is the slower acting insulin. It's one of those things that I know I should try but just haven't gotten around to yet, so thanks for the extra incentive to try it.
> 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
> 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.)
> 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.
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...
Assume a 1:10 insulin to carb ratio (though I don't think insulin dosages have a strictly linear effect) and a meal of 100 carbs. If the meal, in reality, has 80 carbs, you've injected two extra units of insulin. We might expect a unit of insulin to reduce blood glucose by 30-50 mg/dl, so we've reduced our expected blood glucose by 60-80 mg/dl. If you target a blood glucose of 80 mg/dl, this would mean your expected future glucose is 0-20 mg/dl. In that case, you would die.
Now, the problem with this example is that I would 100% take action to avoid dying, so my actual risk of death is still minute despite having a lethal dose of insulin in my body at the time I inject myself. However, it's still a bit strange to know that, conditional on me taking no independent action, I'm hours away from death in certain situations.
> The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available.
And yet, have there not been a number of cases where medical professionals have been convicted of the murders of several patients by injecting them with insulin? I would expect that these patients should have had 'good medical care' available to them.
I have not read the book, but perhaps it is ignoring the fact that extreme hypos may trigger other problems such as heart attacks. When a condition becomes common enough to be given a non-medical name, as in the 'dead in bed' syndrome, then I you can't *assume* you will survive for 24 hours.
The risk of death might be lower than I think, but I'm not to be ignoring any alarms I get.
Insulin overdose is very hard to die from, but it can easily cause permanent brain damage. And that's just in healthy adults. In terms of immediate risk, hypoglycemia is far more dangerous than hyperglycemia (though this is not to discount the severity of DKA).
I am very curious about gluconeogenesis. I am well aware of this pathway but have read a few times that glucose generation from protein happens very rarely. Have you ever tried eating zero carb whey protein in a fasted state? If yes, have you noticed a spike in glucose? I am genuinely very interested in your experience with gluconeogenesis as a person with diabetes.
Oh, I am very happy to answer this to the extent I can. Whey protein impacts my blood glucose in confusing ways! Most days, I'll have a whey protein shake that consists of one scoop whey protein, a little bit of coffee for taste, and some almond milk. This will typically be my first meal after ~12-16 hours without eating. The correct dose of insulin for this shake can vary from 2 units of insulin to 4.
First, I believe you're correct that gluconeogenesis happens rarely. More specifically, I believe it happens in the absence of carbohydrates in the food you consume. Since I eat a low carb diet, it would make sense that I experience gluconeogenesis.
Second, have I noticed a spike in glucose? Yes! I have to take some amount of insulin if I have a protein shake. The coffee has no effect, so any effect comes from the almond milk and whey. There's maybe half a cup of almond milk in my shakes which is close to negligible. We can probably assume that whey drives most of the glucose effects from my shake.
Third, why is there so much variance in my blood glucose response and insulin requirements? Here, I do not have a defined answer. One aspect may be that whey is quickly digested. The quick digestion may accelerate the effect of gluconeogenesis. Another factor may be the state of the glucose reserves in my liver before I consume the whey. If I'm in a state of ketosis, it may be that my body accelerates gluconeogenesis because it believes it's in a carbohydrate shortage. In this situation, the glucose spike may exceed what would otherwise be expected. There's a few other things such as exercise I'd include here, but I don't have a single definitive answer to this.
A final note: In some sense, I can feel/anticipate my insulin sensitivity during the day. I cannot explain this in writing in any coherent way, but I have decent intuition on what insulin dose between 2 and 4 units I should pick each day. Or, before bed, even if my blood sugar appears constant and in-range, I may anticipate that it'll go up and down as I sleep and eat/inject insulin accordingly. One part of this intuition is "knowing" rather a protein heavy meal will kick into gluconeogenesis while I sleep. Anyways, I can answer more, but as you can perhaps tell, most of my explanations are of the waves hands variety.
In addition to the margin of error on food labels, there's also the margin of error on blood tests, which IIRC from the spec's on the one my wife uses it too is about +/- 20%.
If you have the misfortune of having those errors match up (and they will at times) they you eat something that overestimates carbs by 20% and a blood test that overestimates your current glucose level by 20%. Give yourself a corresponding dose of insulin and drive your levels through the floor.
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".
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.
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.
Hi, I'm an artificial pancreas developer! Our device has been approved for human trials which we're going to begin shortly, probably near the end of this quarter.
One thing that the article (which is very well researched, by the way, kudos!) does not quite get right is that the insulin sensitivity _changes_ hour to hour, day to day, month to month. It changes nonlinearly with exercise, stress, sleep, diet, and in a million other subtle ways that we're still trying to characterize. This dynamism is part of what makes management of blood sugar so hard, because the same dose that got you in range a couple days ago now sends you into a hypoglycemic episode, which can be really really dangerous!
The good news is that, while cures for diabetes have been Five Years Out (TM) since the 1980s, artificial pancreas technology (like Loop, OpenAPS, and recently approved Omnipof 5) is here _today_ and already giving people a real solution, not to mention peace of mind, but we still have a long way to go! Access issues, trust relating to years of anxiety induced trauma, cost etc are all barriers to making these solutions widely available, but I feel hopeful that in 20 years, a T1D diagnosis will be as manageable as an eczema one.
If anyone has any questions about APs, I'd be happy to field them!
I just looked at your profile and saw what your company is working on. Very interesting!
My wife and I were recently in a situation where I'd wondered why the hospital didn't have such a thing!
My wife has T1D and we just spent 3 days in the hospital for the birth of our daughter. The most scary and frustrating part of the whole process was my wife's diabetes management. She uses a Tandem T:Slim and a Dexcom G6, and generally has very tight control. But the hospital insisted on taking over during active labor, and we had a very tense conversation with a tactless perinatologist about it.
They wanted to put her on an (IIRC) intermediate acting insulin drip, and rely on finger pricks. We were very worried that they would basically be following a canned script and would end up yo-yoing her blood glucose during labor.
We ended up getting our OB to convince the completely tactless perinatologist that we'd define "active labor" as actually pushing. So we delayed getting her off her pump/CGM and self management for quite a while. And by then we'd also fortunately convinced our nurse who was responsible for the insulin that we knew what we were doing. So she consulted with my wife (literally between contractions and pushing) on any insulin delivery. They adjusted the plan in real time based on what my wife said they should do. Had they just followed the script/protocol the hospital had, we probably would have seen them give my wife way too much insulin.
Then for the rest of our stay, the hospital insisted on checking her blood glucose with finger pricks, though she was self treating with her pump. It really felt like it was for their benefit and not hers.
It was really clear that literally every person we interacted with (except maybe the tactless perinatologist) knew less about T1D than we did. They are much more setup for poorly managed gestational diabetes.
Watching the hospital try to manage her T1D made us feel like we were jumping back in time a decade or two. And this was one of the big, nice, (and expensive) hospitals in San Francisco.
If she would have had a c-section or some other situation where she wasn't able to help direct her diabetes management, I'm kind of afraid of what could have happened.
It really made me wonder why there wasn't an artificial pancreas type system for hospitals.
Now I see that someone is actually working on that!
Sorry to hear about hat - it must have added a huge amount of stress.
I had a similar experience thirty years ago, after being hospitalized for ketoacidosis. (Fun fact: As a DKA patient, I found myself next to an attempted suicide, and noticed that med staff treated us both with disdain. Seriously bad way of managing health outcomes. But I digress.)
The experience in question was a doctor-prescribed insulin injection that the nurse insisted on injecting. I objected, but was unable to be heard. I calmly demanded that the nurse return at 11PM with orange juice to counteract the reaction that was inevitably coming. She did, and the crisis was averted. The next day the doctor prescribed that I could manage my own dosage.
Diabetes management is remarkably complex, and few medical folks know how to do it.
Sorry to hear about your terrible experience, which is unfortunately all too common when it comes to glucose control.
We're on _exactly_ the same page. When people really get what we're doing, often times the reaction is "wait, that doesn't exist yet?" The reasons are complex, and there's lots of hurdles to overcome (IMT was formed in 2014, in development since 2007, we're only just now starting human trials), but we believe that there are millions of people every year who, like your wife if you hadn't spoken up, slip through the cracks and suffer from poor glucose control in the hospital.
Glucose control has the potential to be the next penicillin, in terms of how broadly applicable it is, and how drastically it reduces mortality across a whole range of conditions. We're pretty excited about it!
My girlfriend has T1D, she diagnosed when she was very young. She’s great at managing it and has a pump and a CGM, but there’s still so much bullshit that she goes through when parts break. It’s really made me furious at the medical device industry, so I’m happy to see you’re working on new solutions. As a software engineer, I often wonder if there’s anything I can do to help with T1D management, so if anyone knows of projects/companies that need devs, I’m all ears.
OpenAPS is the big one, though I think they need _documentation_ more than code. Reach out to Dana on Gitter or Twitter, she's always been very helpful in the past!
Hey Jeremy, I was hoping to send you an email based on the email in your profile (jeremy@ideal.com) and received an "address not found". Would there be a better way to reach you?
Recruiting is usually handled by study centers, and depends on the study. We're going to take in healthy volunteers for this current one, but I don't think we have any say on who, unfortunately! Would also present a potential conflict of interest to have anyone even tangentially related in the study.
> 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.
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.
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.
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.
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+.
The bleeding edge is the Beta Bionics (https://www.betabionics.com/) bi-hormonal system (insulin + glucagon), currently in clinical trials for ages 6+.
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.
Our 15 y/o son was diagnosed T1D Jan 2020. Finally got him on loop Sept 2021 and feel the same way. These developers are saints for doing this work. They've given us countless hours of sleep. We had another T1D family come visit us and I set them up on loop. I was in tears when I got text message from them telling us how they their kid is 85% in range and they are actually sleeping through the night. These are truly life changing projects.
+ the funny thing is that both openaps/androids + loopkit are more advanced than the commercial offerings that we are starting to see now.
Medtronic licensed their artificial pancreas system MD-Logic from Israeli company DreaMed in 2015. Dexcom bought TypeZero (who have system called inControl) back in 2018.
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.
> 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.
Yeah, the tslim X2 would be the preferred pump at the moment, but by the time he gets old enough for a pump I hope the technology will have improved a lot.
Our T1D kid has been pumping since 18 months. He was diagnosed at 12 months old. He's six now and has been pumping nearly the entire time.
We're in Vietnam but we do all his endo related medical stuff in Singapore.
Counting carbs in kids is a nearly pointless endeavor. Picky eating habits, nutrition mis-labeling (good luck finding accurate nutrition information in Vietnam), etc. And you'll also need to consider that their bodies are moving targets with hormones, growth spurts, etc. It's going to be really hard to manage just by math alone.
Being five years into it now, because the math seems to be changing daily, we are doing it almost by feeling backed by CGM evidence. In our case, the only CGM available here is the Freestyle Libre which is mildly inaccurate except for informing us on the general direction his blood sugar is taking. It's enough info that we've gotten his hb1ac into near normal range and the miaomiao3 turns into a full fledged CGM that we can use with nightscout and xdrip4ios for realtime monitoring.
I'd also advise you to think about joining a group of parents of T1Ds because there's a lot of things to learn and I've personally found it helpful when working through edge case scenarios that will eventually happen.
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 :/ )
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.
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.
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/
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.
> 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.
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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.
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.
The scary part is potentially getting caught out somewhere entirely alone and without an emergency snack.
I did, got him some OJ, and moved his car out of traffic. He went from incoherent and “drunk” to “seemed pretty OK” in just a couple of minutes before the medics even arrived. (He still took the ride, but it was none of my business at that point.)
Unmanaged heartburn can lead to esophageal cancer, you shouldn't take it too lightly.
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/
> 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.
> 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...
If it helps (?), I also broke down crying reading this, because I have MS and it is so true to my experience. I've never been able to communicate well how exhausting the constant mental load is, and I imagine it's even worse for people with T1 diabetes since blood glucose can get out of whack a lot more quickly than my immune system can make more holes in my nervous system.
You nailed it on the head exactly with the constant balancing.
"Okay, so I didn't sleep for crap last night due to symptoms. Do I have some caffeine and spend the rest of the day in pain due to the increased muscle spasticity? Maybe if I have 3 cups of coffee instead of 1 and also take some of my muscle spasticity medication, I'll be able to stay awake but not be in too much pain. Except if I dip into what are supposed to be nighttime pain meds too often, I might run out of Tizanidine. When will my insurance refill? How much will it cost out of pocket when I have a bad pain month?"
And then I get stressed out about the MS, and we're supposed to avoid stress, so then I stress about my stress. Fantastic.
And all until the day we die.
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....
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.
You eventually gain an instinct for it. Doesn't always work, but for me it works better than the formulas...
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.
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Also 30 years here. I have exactly the same thing as you describe though when I switch insulin I do start calculating again to be sure it matches with my assumptions. Blood glucose measuring is required though as you mention. I'm one of the lucky ones with very lineair and predictable response to every unit more or less of insulin. Not everyone is that lucky though.
The picture of you and your son in that hospital bed broke me. You're doing great.
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".
It's the real life experience of this Frog and Toad meme: https://i.imgur.com/YdSSscE.png
Of course being able to even afford this in the US requires a certain level of privilege. Supplies are very expensive.
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.
https://www.clinicaltrialsarena.com/analysis/vertex-stem-cel...
It's a stem cell therapy, in human trials (not the usual "in mice" crap).
A single patient already had their diabetes disappear: https://www.fiercebiotech.com/biotech/vertex-diabetes-cell-t...
The downside of stemcell therapy is that it is essentially an organ transplant, aka requires immunosuppressants, for life.
That being said, every decade has seen life-changing therapies introduced. The introduction of long-lasting insulins. At home testing for glucose and ketones in urine. Mixing insulin formulations together to reduce the number of injections at a time. Thinner needles greatly reduced pain from injections (this one happened almost every year.) Moving from urine tests to blood glucose tests! Introducing shorter-acting insulins that reduce onset time. GLUCOMETERS! Moving from needles to pens allowed crazy-simple and virtually painless injections. Moving from pork formulations to human formulations of insulin. Carb counting: previously we used fixed diet - eat the same thing at the same time every freaking day. INSULIN PUMPS!!! Crazy fast-acting insulin formulations cutting onset down to 15 minutes. CONTINUOUS GLUCOSE MONITORING!!! Tracking and alerting for low glucose, overnight and remote. CUSTOM-BUILT CLOSED LOOPING!!! Reliable/medical grade CGM. Approved closed looping systems.
Many folks have worked very hard to make my life more livable, and I thank them for it. Today is, without a doubt, the best time to be a diabetic.
That being said, I still wouldn't recommend it;)
Edit: On the 42 factors, during-sleep BG is either stable or up. For me it's either side or down (but occasionally up).
I do have the 'pre-sleep' BG that usually goes down, right after brushing my teeth (is it post-brushing then?), which is a well-known factor on Reddit. Basically, doesn't matter if I'm going to sleep at 10pm or 1am. I check my BG, it's 8, arrow straight or even up (CGM indicates the trend). Brush my teeth and check again, 7 with arrow straight down to the floor :/
[1]: https://www.clinicaltrials.gov/ct2/show/NCT03513939
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.
I thought pump implants already did that, what's missing?
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:
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.
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.
One important thing to point out is that you can't reverse T1D with keto, like some people are able to with T2D. It can greatly reduce your insulin requirements, but not to zero. Your pancreas will not return to normal function.
https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu...
The pump delivers insulin and gets blood glucose readings from a CGM (continuous glucose monitor) over bluetooth. Then the pump can make decisions such as stopping insulin delivery if you're going to go low, doing small correction boluses, and adjusting basal rate.
However it's far from perfect and still needs a lot of management. My wife has T1D and was recently pregnant, which really raises the bar on how tightly you need to control your diabetes. She ended up mostly micromanaging it all herself rather than trusting Control IQ to do the right thing.
The other issue is CGMs are not that accurate, so these systems are making decisions based on not great data.
https://www.diabetes.org.uk/guide-to-diabetes/diabetes-techn...
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"Diet" might even be the wrong word, more like a lifestyle.
Skip carbs altogether?
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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.
For me, this approach worked when I switched from Novolog to Novolin R, which has a slower effect rate. I use shots so it helps match the blood sugar profile of eating higher protein and fat meals. If you use a pump, you can adjust your bolus to give a % upfront and a % over a period of 2-3 hours so that you can match the slower glucose production from protein. In Bernstein's book, he had some typical ratios for grams of protein to insulin that turned out to be pretty close for me.
It obviously doesn't solve everything but I certainly feel better when I'm at 60 and have 1.5 units on board compared to if I had 7. The Novolin R makes me feel even better because I also know my blood sugar can't drop too fast, where Novolog I could be dropping 6-7 mg/dl per minute. So I have time to react and let my body absorb some simple sugars before it's too late.
Just a personal anecdote, maybe someone will find this useful!
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
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
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.
You might not die, but might develop some nasty problems later on in your life...
Assume a 1:10 insulin to carb ratio (though I don't think insulin dosages have a strictly linear effect) and a meal of 100 carbs. If the meal, in reality, has 80 carbs, you've injected two extra units of insulin. We might expect a unit of insulin to reduce blood glucose by 30-50 mg/dl, so we've reduced our expected blood glucose by 60-80 mg/dl. If you target a blood glucose of 80 mg/dl, this would mean your expected future glucose is 0-20 mg/dl. In that case, you would die.
Now, the problem with this example is that I would 100% take action to avoid dying, so my actual risk of death is still minute despite having a lethal dose of insulin in my body at the time I inject myself. However, it's still a bit strange to know that, conditional on me taking no independent action, I'm hours away from death in certain situations.
And yet, have there not been a number of cases where medical professionals have been convicted of the murders of several patients by injecting them with insulin? I would expect that these patients should have had 'good medical care' available to them.
I have not read the book, but perhaps it is ignoring the fact that extreme hypos may trigger other problems such as heart attacks. When a condition becomes common enough to be given a non-medical name, as in the 'dead in bed' syndrome, then I you can't *assume* you will survive for 24 hours.
The risk of death might be lower than I think, but I'm not to be ignoring any alarms I get.
(Type 2 but insulin dependent)
I am very curious about gluconeogenesis. I am well aware of this pathway but have read a few times that glucose generation from protein happens very rarely. Have you ever tried eating zero carb whey protein in a fasted state? If yes, have you noticed a spike in glucose? I am genuinely very interested in your experience with gluconeogenesis as a person with diabetes.
First, I believe you're correct that gluconeogenesis happens rarely. More specifically, I believe it happens in the absence of carbohydrates in the food you consume. Since I eat a low carb diet, it would make sense that I experience gluconeogenesis.
Second, have I noticed a spike in glucose? Yes! I have to take some amount of insulin if I have a protein shake. The coffee has no effect, so any effect comes from the almond milk and whey. There's maybe half a cup of almond milk in my shakes which is close to negligible. We can probably assume that whey drives most of the glucose effects from my shake.
Third, why is there so much variance in my blood glucose response and insulin requirements? Here, I do not have a defined answer. One aspect may be that whey is quickly digested. The quick digestion may accelerate the effect of gluconeogenesis. Another factor may be the state of the glucose reserves in my liver before I consume the whey. If I'm in a state of ketosis, it may be that my body accelerates gluconeogenesis because it believes it's in a carbohydrate shortage. In this situation, the glucose spike may exceed what would otherwise be expected. There's a few other things such as exercise I'd include here, but I don't have a single definitive answer to this.
A final note: In some sense, I can feel/anticipate my insulin sensitivity during the day. I cannot explain this in writing in any coherent way, but I have decent intuition on what insulin dose between 2 and 4 units I should pick each day. Or, before bed, even if my blood sugar appears constant and in-range, I may anticipate that it'll go up and down as I sleep and eat/inject insulin accordingly. One part of this intuition is "knowing" rather a protein heavy meal will kick into gluconeogenesis while I sleep. Anyways, I can answer more, but as you can perhaps tell, most of my explanations are of the waves hands variety.
If you have the misfortune of having those errors match up (and they will at times) they you eat something that overestimates carbs by 20% and a blood test that overestimates your current glucose level by 20%. Give yourself a corresponding dose of insulin and drive your levels through the floor.
Is this accounted for by product-to-product variation or package-to-package variation?
Here is the actual rule from https://www.accessdata.fda.gov/scripts/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.
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.
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!
My wife and I were recently in a situation where I'd wondered why the hospital didn't have such a thing!
My wife has T1D and we just spent 3 days in the hospital for the birth of our daughter. The most scary and frustrating part of the whole process was my wife's diabetes management. She uses a Tandem T:Slim and a Dexcom G6, and generally has very tight control. But the hospital insisted on taking over during active labor, and we had a very tense conversation with a tactless perinatologist about it.
They wanted to put her on an (IIRC) intermediate acting insulin drip, and rely on finger pricks. We were very worried that they would basically be following a canned script and would end up yo-yoing her blood glucose during labor.
We ended up getting our OB to convince the completely tactless perinatologist that we'd define "active labor" as actually pushing. So we delayed getting her off her pump/CGM and self management for quite a while. And by then we'd also fortunately convinced our nurse who was responsible for the insulin that we knew what we were doing. So she consulted with my wife (literally between contractions and pushing) on any insulin delivery. They adjusted the plan in real time based on what my wife said they should do. Had they just followed the script/protocol the hospital had, we probably would have seen them give my wife way too much insulin.
Then for the rest of our stay, the hospital insisted on checking her blood glucose with finger pricks, though she was self treating with her pump. It really felt like it was for their benefit and not hers.
It was really clear that literally every person we interacted with (except maybe the tactless perinatologist) knew less about T1D than we did. They are much more setup for poorly managed gestational diabetes.
Watching the hospital try to manage her T1D made us feel like we were jumping back in time a decade or two. And this was one of the big, nice, (and expensive) hospitals in San Francisco.
If she would have had a c-section or some other situation where she wasn't able to help direct her diabetes management, I'm kind of afraid of what could have happened.
It really made me wonder why there wasn't an artificial pancreas type system for hospitals.
Now I see that someone is actually working on that!
I had a similar experience thirty years ago, after being hospitalized for ketoacidosis. (Fun fact: As a DKA patient, I found myself next to an attempted suicide, and noticed that med staff treated us both with disdain. Seriously bad way of managing health outcomes. But I digress.)
The experience in question was a doctor-prescribed insulin injection that the nurse insisted on injecting. I objected, but was unable to be heard. I calmly demanded that the nurse return at 11PM with orange juice to counteract the reaction that was inevitably coming. She did, and the crisis was averted. The next day the doctor prescribed that I could manage my own dosage.
Diabetes management is remarkably complex, and few medical folks know how to do it.
We're on _exactly_ the same page. When people really get what we're doing, often times the reaction is "wait, that doesn't exist yet?" The reasons are complex, and there's lots of hurdles to overcome (IMT was formed in 2014, in development since 2007, we're only just now starting human trials), but we believe that there are millions of people every year who, like your wife if you hadn't spoken up, slip through the cracks and suffer from poor glucose control in the hospital.
Glucose control has the potential to be the next penicillin, in terms of how broadly applicable it is, and how drastically it reduces mortality across a whole range of conditions. We're pretty excited about it!
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.
> A hot bath or shower can raise (then lower) the measured BGL. This might be an incorrect reading, so may be dangerous to treat.
I think the reason why this is a problem is less concerning than someone correcting after a hot shower based on faulty data.
[1] https://www.diabettech.com/cgm/high-temperatures-extreme-con...
[2] https://www.reddit.com/r/dexcom/comments/eyq5h0/hot_and_cold...
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+.
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.
https://github.com/nightscout/androidaps
It's awesome.
Medtronic licensed their artificial pancreas system MD-Logic from Israeli company DreaMed in 2015. Dexcom bought TypeZero (who have system called inControl) back in 2018.
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.
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.
We're in Vietnam but we do all his endo related medical stuff in Singapore.
Counting carbs in kids is a nearly pointless endeavor. Picky eating habits, nutrition mis-labeling (good luck finding accurate nutrition information in Vietnam), etc. And you'll also need to consider that their bodies are moving targets with hormones, growth spurts, etc. It's going to be really hard to manage just by math alone.
Being five years into it now, because the math seems to be changing daily, we are doing it almost by feeling backed by CGM evidence. In our case, the only CGM available here is the Freestyle Libre which is mildly inaccurate except for informing us on the general direction his blood sugar is taking. It's enough info that we've gotten his hb1ac into near normal range and the miaomiao3 turns into a full fledged CGM that we can use with nightscout and xdrip4ios for realtime monitoring.
I'd also advise you to think about joining a group of parents of T1Ds because there's a lot of things to learn and I've personally found it helpful when working through edge case scenarios that will eventually happen.
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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/
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.
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.