#712 Bold Beginnings: Terminology Part II
Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Bump & Nudge - Rage Bolus - Compression Low - Interstitial Fluid - Fat & Protein Rise - Dawn Phenomenon - Somogyi Effect - Feet On The Floor - Insulin Sensitivity Factor - Adrenaline Highs - Insulin Deficit - Growth Hormone - Stacking Insulin - Hydration - Lada Diabetes - Mody Diabetes - Crush It & Catch It - C-Peptide - Beta Cell - Insulin On Board - Pump Break - Barriers - Black Holes - Dictate The Pace - Carb Absorption & Digestion - Antibodies - Hypo & Hyper - Types of Diabetes
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 712 of the Juicebox Podcast. This is the second part of a special bold beginnings episode, part one is already available, and episode 711.
Welcome back to the bold beginning series with me and Jenny Smith. Today's two parter happens in Episode 711 and 712. This is bold beginnings terminology part two. In these two episodes, Jenny and I define every word that's available to you in the defining diabetes series. At the time of this recording, there were over 40 definitions. We did a quick definition for newly diagnosed people and left you the episode number so you can go back and get a more complete definition. If you've just been diagnosed. Or if you're trying to figure things out, it is our estimation that this two part episode, part of the bowl beginning series will catch you up on terminology very quickly. If you're looking for the defining diabetes series, it's available at juicebox podcast.com diabetes protip.com. And in any audio app that you listen in, join the Facebook group Juicebox Podcast type one diabetes to find the lists of all the series in the featured section. This episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes. And because of the format of this episode, I'm going to put the ad right here for you so that you don't have to take a break while you're power listening through these definitions. Isn't that cool of impelled to let that happen? Thank you and pen, even though I didn't ask you, but I know you're listening. So just be cool. All right. All right, ready the pen. It's an insulin pen. But it's more than that. Because it's attached to an application on your iPhone or Android phone. This application is going to do many of the things you've heard about people getting from their insulin pumps, you'll be able to see your current glucose right on the screen, a dosing calculator, active insulin remaining meal history, dose history, glucose history, activity logs, and you can generate reports based on your data. Not only that, but you're getting a great insulin pen, everything you expect the cap the needle, the insulin cartridge holder, it's an insulin pen, just like you've come to expect. But it gives you more with this attached app. You can go right now to N pen today.com To find out more and get started. And I'm gonna tell you what terms and conditions apply, but you may pay as little as $35 for the in pen. Medtronic diabetes does not want costs to be a roadblock to you getting the therapy that you need. Within Penn's Access Program. You may pay as little as $35. Where will you find that out? At in Penn today.com. On this site, tons of frequently asked questions that you're going to be interested in just scroll to the bottom. What is the M pen? How much does it cost? Our insulin cartridges included? Does M pen work with long acting insulin? Can I pair more than one M pen to an app? You want to know the answers to those questions? Go right now to in pen today.com and get your answer if you're ready to try the M pen when you're at the link. Just follow the easy instructions it says ready to try you complete a short form. And just like that you're on your way. In pen today.com forward slash juicebox in pen requires a prescription and settings from your healthcare provider. You must use proper settings and follow the instructions as directed where you could experience high or low glucose levels. For more safety information visit in Penn today.com. Yeah, okay. Haha, there it is. So Jenny and I are back. This is another day we recorded from Bolus to feeding insulin. And now we're gonna go to Episode 347 and the defining diabetes series. This is another made up I think this is one of the last ones that I made up for a while. Yeah, it is. But this one's called bump and nudge. So, you know what, Jenny, I've described how I think of it all the time, but you've heard me talking about it so much. How do you think about it? Now that I've explained it to you?
Jennifer Smith, CDE 4:39
Well, it's just, I mean, I just think it's learning how to use insulin. Better to bring your blood sugar into the place that you want it to as well as not only insulin, but food, right, because it's kind of a both. It's a both system. Use insulin to get your blood sugar to come down. Until where you want it to. And if you maybe use just a little bit too much, then you're using a little bit of food to kind of keep it stable, avoid it from dropping too low.
Scott Benner 5:09
So there's been this. There was once a discussion online where people said, do you think of somebody asked me one time, do you think of bumping his insulin or bumping his carbs, and everybody, because I've never really said it before, but in my mind, I nudge with food and bump with insulin, I think and I'm the opposite. You think of it the other way, it doesn't really matter the way in 20 seconds. The way I describe it to people is when you're driving in a lane, and there's a line on your right, a line on your left, if you start to slowly drift towards the line, you don't quickly yank the wheel back the other way, you just sort of bring it back just ever so slightly to come back into toe again, right? To be straight again. So instead of waiting till your blood sugar, 60 and falling, what if when it was 85, and it was just sort of drifting down, if you just had a couple of carbs, if you just sort of nudged it back up again, or bumped it back up again, it really doesn't matter which one strikes you in your mind. And similarly, why not lower your CGM alarm to more like 120 so that when you're kind of drifting up gently, you can give a small amount of insulin and bump that number back down. Because a lot of times less insulin gives you less of a chance of a low later so just instead of waiting to your wildly, you know, instead of waiting till you're off the road in the weeds and bouncing through the holes, when you see the line just sort of come back a little bit bumping and nudging. It's really the whole thing. So that's episode 347. And Jenny episode 352 is rage Bolus. Go ahead, do Rachel.
Jennifer Smith, CDE 6:46
Yeah, rage Bolus, everybody with diabetes. I would think honestly, everybody with diabetes or caring for somebody has raged Bolus, at some point, essentially, you've gotten so frustrated by a high blood sugar or even a climb that you didn't expect. That looks you know, those double arrows up like I'm just gonna get on top of this. Now this is not bumping and nudging. This is completely like the other end of I'm just gonna take a lot of insulin, and I'm gonna get my blood sugar come back down,
Scott Benner 7:19
but you haven't done it. You end up using so much normally, that you create some sort of a fall
Jennifer Smith, CDE 7:24
later. Correct. A pretty dramatic fall for the most part. Yeah,
Scott Benner 7:29
so it's like taking a bucket of insulin. Just be like, I can't take this anymore. It generally doesn't go well. There there is. We'll wait till we get to it. So that's episode 352. Rage Bolus. Episode 358 is compression low and interstitial fluid. I think we started off making a compression load defining and ended up explaining what interstitial fluid is because I compression low if you're wearing a CGM, you've got this wire under your skin, the sensor whatever they call it, filament, doesn't matter. It's a thing. It's under your skin. These are all things that they've been Yes, those are all good words. It's measuring your interstitial fluid.
Unknown Speaker 8:08
And if you glucose in your interstitial fluid,
Scott Benner 8:11
thank you. And if you lay it right on top of the of the sensor, it compresses into your body. When it does that, it pushes the interstitial fluid away from where the wire is. And therefore, your you get a low reading that isn't real. Correct? Because in that area right around the wire, there is actually less glucose. Yes, but there may be not your body's idea of it. Right. So what else? Yes. And on a Dexcom, at least when it happens, you sort of teach yourself you can almost see it, like you know what I mean? Like you're like, Oh, that's a weird break. I bet you that's a compression low. And it's not always I mean, I would still test to be certain. But anyway, that's what a compression low is. It's a it's a blip that comes up on your CGM out of nowhere that looks like you're falling, but really just might be that the transmitter and the sensor had been pushed into your body and disparate and displaced your interstitial fluid. Yes,
Jennifer Smith, CDE 9:09
and a good as you brought up, you can really see a compression low pretty easily on CGM data, because it's it's the glucose data is tracking really smoothly. And all of a sudden, it looks like things just like dropped off of a cliff. And even those little pinpoint dots of glucose value will often have a disrupted area between the last one that looked like it was pretty stable in in target. And the next one, which looks strangely low. Oftentimes, parents will move their kid and roll them over in bed and it writes itself.
Scott Benner 9:49
Yes, I've definitely walked into Arden's room and been like rollover rollover going on. Like what what am i You're laying on your sensor, and then she flips over. But in the beginning, I mean listen I would never say not to test for it like, you should, because also a drastic drop looks like a drastic drop. So I'm just saying you can kind of start to see them after a while. Episode 360, fat and protein rise. So I guess to define that, in just a moment, it would be that you're going to be diagnosed, and somebody is going to tell you that you count carbs, and you cover carbs with insulin. And that's it. And there are free foods, free foods like cheese, and meat, and things like that, because there's no carbs in them. problem becomes with the protein, specifically, your body digests the protein turns it into glucose, right? So later in the, in the process, you could see a rise from that fat, however, has a slightly different scenario, can you tell people like that,
Jennifer Smith, CDE 10:57
it's more fat, it's more resistance with fat, where I think of a simple thing to think of is, if you're, if somebody's like, taking insulin and sitting on it and not letting it work quite as well, that's what fat does. That decreases your body's ability to use insulin by about 50%, give or take. And so in there, multiple ways of attacking coverage and all of that, when are you going to start to see fat impact, it's usually two to three hours after a meal, and it will last a long time. Whereas protein, protein starts to impact blood sugar somewhere one to three hours after a meal. If it's a large quantity, or you've had a small carb containing meal with a fair amount of protein or a large amount of protein, then you may need to actually cover protein. So this isn't, you're always going to have to Bolus or cover fat and protein. That's not really the truth. But there are some specific scenarios in which you would have to cover both of them or just remain high.
Scott Benner 12:09
Right? There are multiple episodes throughout the podcast that go deep, deep into how to Bolus for fat and protein, Episode 378. Don phenomenon. I might have to really get you to lean in on the technicalities of the next three really. So really, yeah. Because I know what the dawn phenomenon is, like, I know that there's this time around, ready, you're testing me two or three o'clock in the morning, right? Where your body kind of gives off some glucose glucagon from your liver, something from your liver. Is that right? Or
Jennifer Smith, CDE 12:45
it's also kind of the beginning of like, cortisol sort of, I mean, it's two o'clock early. So most people it's somewhere between three and 8am. I mean, for like the widest swath of time potential, right? I mean, there are multiple thoughts for why do some people see it more considerably than others, but most people who have tested will definitely find that as they get through and into sort of later, early morning hours, things start to kind of creep up a little bit. And it may also then go along with the foot on the floor, which I don't know, did we do that one already? We're gonna go, we're gonna get that. Okay. All right. So yeah, Don phenomena is really that early morning has nothing to do with getting out of bed. It's the body's need for a little bit. A little bit more insulin, based on your body's preparation for you getting up to get going in the beginning of the day.
Scott Benner 13:46
Okay, then 379 is smokey effect. Smokey. You always say differently than I say.
Jennifer Smith, CDE 13:53
I always say smokey, the fact that people say some Oh, geez. Smoky red. Yes, it's yes. All I know
Scott Benner 14:00
is I don't know what it is. We've done an episode about it. And I have no recall that whatsoever.
Jennifer Smith, CDE 14:08
Yeah, well, I think actually, it was really kind of funny. In that episode, we, we actually looked up where the name came from. It was a doctor and it's a doctor. Yeah. So smoky effect, or phenomenon or whatever is really, when your blood sugar gets too low. Overnight, specifically, you get this dump of like glucose or not really glucose, but your body starts to break down its stores of glucose sends it into the bloodstream. It's a it's a good effect. That's supposed to save you from the low right. But on the opposite of it, the trigger of those hormones can then send your blood sugar's rebounding high later on with a CGM, and thankfully, many people have the option to use a CGM. Now, we can really catch is the high blood sugar you're waking up in the morning? Because you've had lows overnight? Or is it really because nothing low happened and you really just need more insulin put in. Basal.
Scott Benner 15:13
It's really interesting that that the advent of a CGM takes away that. I don't know what's happening idea. Yeah, it's really cool. That episode three ad is feet on the floor. So the way I see it with Arden is she can be super stable, right like at overnight, and her alarm starts to go off art and say, let the alarm go off 16 times kind of person, right. And then she's got snooze herself. She's losing herself into reality. And so as she's losing herself into reality, I begin to see her blood sugar pick up, then she just a little bit at 80 to 85 over like 30 minutes, right? And then she wakes up and her feet hit the floor. And I believe that what happens is your brain and your body start preparing yourself for the task ahead. And I guess that's adrenaline and some other things and and then you just start seeing arise. And then the problem ends up being is that is how it gets caught up in everyday life. Like because breakfast can sometimes be difficult for people to Bolus for. And on top of that they have a rising blood sugar perhaps from feet on the floor that they haven't covered with basil. And anyway, that's feet on the floor. Am I right?
Jennifer Smith, CDE 16:24
Yes, it's you got it, it's typically noticed right upon getting out of bed specifically, especially if you've kind of curtailed the dawn phenomenon, you may actually find a secondary need to add some extra insulin as soon as you actually get out of bed. Yeah. And that, for the most part isn't really well covered with a Basal change. It's much better covered with a Bolus to accommodate for what you know is going to happen.
Scott Benner 16:56
Go check out the episode. I think this is a good time, Jenny, for us to just interject for 12 seconds and say to newly diagnosed people. I know this seems overwhelming. But these things will just sort of like you can go listen to these defining episodes, get a firm idea of what these things are, you're not going to remember every one of them right away. And eventually, as crazy as it sounds, all these things that I've listed here. So far, my brain just does the processing on all of this in the background. I don't I don't I don't stand in a situation where my daughter's blood sugar randomly jumps up and down and think I wonder if she's brittle. Like you know what I mean? Like it just right, you just start to you know, when I see a drifting blood sugar, nowhere near a Bolus, I don't think over feeding the insulin, I just think, Oh, the basil looks heavy. And so you know, eventually it does sort of begins to just make sense without you having to think about it. So Episode 408, insulin sensitivity factor, which people could see in their devices as I S or ISF,
Jennifer Smith, CDE 17:59
right? Or even correction factor, CF or CF, right,
Scott Benner 18:02
in general will get me I'm on a roll here. The Jenny's like why am I here? If you're not gonna give me? Because I don't want to do it. I don't want to do that. Excellent. That's why
Jennifer Smith, CDE 18:14
I'll just, you know, make little little comments along the way. That's all right.
Scott Benner 18:18
So one unit of insulin moves your blood sugar blank amount of points. That's your insulin sensitivity factor or your correction factor, depending on how it's written in your pump or algorithm. That's it, right?
Jennifer Smith, CDE 18:32
Correct, exactly. It's the way that one unit of insulin will navigate your blood sugar down.
Scott Benner 18:40
So if your insulin sensitivity factor is 50, and your blood sugar is 120, giving yourself a unit should get you to 70. correctly, in theory, there are a lot of other variables that would stop that. And if you're just listening first, and you're not going to get a chance to get to that episode, I do want to throw in here, as your blood sugar gets higher, that may become less effective. So it's possible that a 120 will move to 70 on a unit in that example, but not probable that a 250 would go to 200 with the same unit of insulin does that it's Yeah,
Jennifer Smith, CDE 19:14
and most most people who watch and pay kind of enough attention when they're starting to try to figure things out more. They will notice it really works. It really works. And then all of a sudden they've got a bad site or they've got, you know, a missed dose of insulin, their blood sugar climbs, what I find it's usually above like 220 to 250. above that. It seems to take a little bit more insulin than what your correction factor or sensitivity factor would calculate your correction dose to be
Scott Benner 19:44
okay. Well, you tell people what episode 415 is
Jennifer Smith, CDE 19:48
for 15 adrenaline highs. Oh, well, you know, adrenaline is a fancy hormone that kind of goes right along with fight or flight right. So what Does your body do your body's stimulates with adrenaline to really give you this rev up? I mean, you know, your heart rate increases your body is just in this ready state. Well what ends up happening, adrenaline spikes your blood sugar for most people. Now whether or not you actually have to correct that adrenaline spike is another thing to pay attention to. A lot of people see these adrenaline spikes around like you're a game, like the coolest team that you're going to play against, you know it this coming weekend, and you get this spike up in blood sugar that you've not ever really seen before. Very likely, it's adrenaline, or just excitement. I know that before. When I first started doing some of my my initial like, races, which were not very long, they were like 10 K's. But it was exciting. And I'd get there with this nice smooth like blood sugar. And then like 10 minutes before the gun was gonna go off, I get this crazy quick kick up. Really what's going on? Right? So
Scott Benner 21:05
I think also go listen to that episode seriously, because there are also situations that you can't imagine yet where it might not happen. For instance, a baseball game might make your kid excited, but baseball practice might not. And also, adrenaline needs insulin most of the time. But when adrenaline leaves and insulin remains behind. That's a Oh situation. So adrenaline holds up your blood sugar really well, when it's there when the adrenaline goes away out of nowhere. If you've Bolus for that insulin still active, and the adrenaline is gone. Now it's almost like it's almost like an unseen hand reached into your stomach and snatched your lunch out and it just isn't there anymore to correct to combat the insulin episode for 15. I realized now I'm going to have to edit out every time I went before every one of these numbers are now just leave it in who cares? Adrenaline highs we just did now that the next one episode 423 Insulin deficit? Do you remember? Did we put this in to sort of give a description to people of why their blood sugar's kind of drift up? I almost don't remember making this one for some reason?
Jennifer Smith, CDE 22:15
I believe so. I wonder if the other one was was this? Oh, no, because black holes is
Scott Benner 22:22
down farther? Well, let's just define insulin deficit, then. Sure. Just yeah, probably an insulin deficit
Jennifer Smith, CDE 22:28
is missing insulin. And the result is typically that your blood sugar is going to go up. That's, that's it.
Scott Benner 22:36
We probably stuck it in there. Because you'll hear me say throughout the podcast, you know, if your blood sugar is high, you're probably didn't use enough insulin and slow, probably use too much insulin. So you know, like it's a good place to start. So insulin deficit is just what it sounds like. growth hormones, Episode 426. I mean, the reason we define that around diabetes is because when your kid goes to sleep at night, and is inundated with growth hormones, their blood sugar is going to go up. So I don't know that growth hormones needs a description here from us. But it does need us. I think it does. Ask us to tell you to go to listen about it. Because it's really important, it is going to impact your use of insulin.
Jennifer Smith, CDE 23:17
Especially in in all ages. I think most specifically for those who have kids with type one teens with type one. Women who have not quite figured out their monthly cycle yet around their hormones that go up and down. So it's definitely an important one to understand. Yeah.
Scott Benner 23:37
Okay, stacking insulin is episode 440. And it is very likely that you are going to be diagnosed, and a doctor is going to look at you very sternly in the face and tell you never stack insulin, right? happen without much explanation, right, they're just gonna say don't stack. Stacking Insulin is the idea of you just sort of layering new boluses on top of each other blindly, because you see because it's almost it's almost raged bolusing and steps. Does that make sense? Like instead of like, like, instead of throwing in five units all at once it's a unit than a unit and then a unit and a unit, you just keep stacking them up on each other. It's kind of the same idea. I've never thought of it that way before until just now. But here's the thing, you really don't want to stack insulin. You want to Bolus correctly for what you're eating or for the correction you're trying to make. But it's not stalking if you need it. So if your insulin is well proportioned and your understanding of covering your foods is good, and you eat at three o'clock, and at 325 go I'm gonna have another serving of that. That's not stalking. No, that's Bolus correct. And the problem is, is that when you get when you're in your first week of blood sugar's and people say don't stack insulin One A lot of people here as don't use insulin frequently. Do you agree with that?
Jennifer Smith, CDE 25:06
Right. And I, I've also heard it in terms of the comment about don't stack insulin, many will be given sort of a timeline of use of insulin, like, if you take insulin here, don't take insulin for another three or four hours, right. But that lacks a lot of good explanation, as you just tried to do you know, if you or your child eats lunch now, and then you decide, well, I'm still hungry, or he or she is still hungry, and they really want something more, there's a reason to take more, even if it's within an hour of having just Bolus for other food. If you're eating again, you need to take more insulin for that that's not stalking. If you take insulin for a meal, blood sugar is rising, and you think, Well, I'm just gonna give more insulin because my blood sugar's rising, you could potentially get into stacking insulin because you really haven't seen the true impact of that. Let's call it a three to four hour active insulin window of the first Bolus, right?
Scott Benner 26:10
Or you could just be right, you might have miscounted carbs where the glycemic index or load might be wrong. Here's what I'm gonna say, listen to this episode, because it's important, but these episodes should probably at some point lead you into the diabetes Pro Tip series, which will make all of these definitions make a lot more sense. Episode 442, hydration, I think we all know what hydration is. So I don't know that it needs to be explained here. But you should go check out the episode because hydration has a huge impact on how insulin works. That's that's why it's in the defect in the definitions,
Jennifer Smith, CDE 26:46
insulin movement of any nutrients around your body. It also impacts CGM accuracy significantly, significantly So, absolutely. Listen to hydration.
Scott Benner 26:57
Yeah. For 55 Lada diabetes, latent autoimmune diabetes in adults.
Unknown Speaker 27:06
Yes,
Scott Benner 27:07
yeah. If you guys could just see Jenny looking at me right now going, he's not gonna get this.
Jennifer Smith, CDE 27:16
I was, I was like, I know we've done this so many times. That you know this constantly
Scott Benner 27:21
and it's, you know what the problem is where it breaks my brain is that it's latent autoimmune diabetes, la dee, but then it goes in adults, and there's no either.
Jennifer Smith, CDE 27:32
Yes. I mean, it really what, right? It's just a slow progressing form of autoimmune diabetes, or a slow progressing form of type one, for the most
Scott Benner 27:44
part, which you mainly see in adults.
Jennifer Smith, CDE 27:46
Correct. Exactly.
Scott Benner 27:49
Then we have Modi diabetes, which I'm going to admit, I couldn't define if my life depended on it, which I'm sure you're disappointed in right now. But can you please do it?
Jennifer Smith, CDE 27:58
Nobody diabetes, yes, maturity onset diabetes of the young.
Scott Benner 28:02
There you go. So is it a lot of for young people?
Jennifer Smith, CDE 28:10
Not really. It's definitely different than Lada. And Modi has many different, it's genetic. Od has many, many different types of Modi, if you will, that's the easiest way to say it. And getting the proper diagnosis of your type of Modi becomes really important for getting the right type of medication and management strategy.
Scott Benner 28:39
So it's one of those things that often if you have it, you're not going to know right away because doctors are gonna have trouble figuring it out, too. Yeah. Which is why they're specifically episode 463. Crush it and catch it. That is the thing I made up. So it is and you really don't start with crush it and catch it right like listen to these listen to the pro tips then come back to that when maybe but it for to define it. It's the idea that sometimes you have a high blood sugar that is so high. And if you have a CGM I sort of just learned how to like Crush It, like crush it with insulin and then catch it so that it comes in for a smooth landing without creating a high later and without getting a low. Anyway, it's not a day one idea for 60 days, like no, I'm not even saying anything about this.
Jennifer Smith, CDE 29:30
Hey, no comments there whatsoever. Well, I the comment I was gonna say is actually it kind of goes a little bit along with rage bolusing but crush it and catch it means that you really are. You're not. You're not anger bolusing you're like I see the problem happening. You're taking emotion out of it. I'm going to do this, but I'm really going to be diligent about paying attention. And I'm going to catch it later because I know that this is likely more than I need it.
Scott Benner 29:58
It's a it's an aggressive has fought for move. It's it is yeah. And yes. And again, don't do it on the first day for 66 C peptide and beta cells, C peptide, what is that. So
Jennifer Smith, CDE 30:12
C peptide is a substance, it's made by the pancreas along with insulin, they're sort of both parts of a big molecule, right. And when insulin gets released into circulation, the C peptide kind of gets cleaved, or broken off, if you will. And it's kind of C shaped from what I understand. And so it doesn't do anything. The insulin is the piece of that molecule that we want. But C peptide is measurable in the bloodstream. So when you're diagnosed with autoimmune diabetes, or type one diabetes, C peptide levels can be tested to see that they live below what would be expected to be normal pancreatic output of insulin. And if the C peptide then shows what's actually coming out of the beta cells in the pancreas. If they're low or under a value, then usually, you know, goes right along with a type one diagnosis along with antibody testing and that kind of stuff. But see, peptides can be measured in somebody who has type one and has had type one a long time as well. And a lot of people ask, well, I take insulin, you know, I injected I pump it, isn't that gonna mess? The tough stuff, not at all. The A C peptide is really only something that comes with your own beta cells, that molecule that's made along with insulin, it's only coming from that it doesn't come from our formulated insulin, but you're
Scott Benner 31:39
gonna hear the word around because people are gonna say, if you're newly diagnosed, and P sometimes people like I'm not sure if I have diabetes, someone's gonna say to you, Well, have you had a C peptide test? And that's, you know, to pretty much tell you if you have type one diabetes, right, right. And a lot of times the, the reason that comes up is a lot of times type twos, can be misdiagnosed, or type ones can be misdiagnosed as type vice versa, that yes, breaks down, we also hit beta cell and their beta cell is the cell in your pancreas. That makes sense Elon, and you can go learn more about it in 466. Episode Four, excuse me, Episode 648. Insulin onboard. To so just to define it, it's a once a year pumps, your algorithms in pen, for example, a smart insulin pen will tell you based on your settings how much insulin you have active in your system, the insulin on board, you being you being bored, and it's on you. Here's the weird thing, isn't it on board, it's a it's such a it's such a commonly used phrase and diabetes. And yet, it's not actually specific to human beings. If you think of it outside of this, not the point anyway. And so on board is how much insulin you have active in your body as measured by your device. And it's based on your settings. Learn more about it in there because if your settings are different, your insulin onboard might look different. And,
Jennifer Smith, CDE 33:07
and that one setting is your duration of insulin action, or your active insulin time. That's really where insulin on board, anything your system is telling you about an amount. It's coming from a setting that you set or that your doctor recommended that
Scott Benner 33:21
you set. If you switch to a pump, you may remember your pump training when he came up on it and it says, What's my insulin action time and the nurse went, Ah, I put three or four hours in there. Because they don't know. And you never get told to go back to it. But you should and you should understand it better. I just had to throw away a phone call from my mother who calls always at the worst times. she I think she has a camera in my bathroom and knows when my when I step into the shower, I'm pretty sure. Episode 652 is pump break. Some people use insulin pumps and take a break sometimes. That one's pretty self explanatory. Episode 656. Jenny, we're gonna get through this whole list. Yay. Episode 656 is about barriers. So I don't use barriers. Arden doesn't use them I should say but a lot of people do. Jenny, could you highlight? Yeah.
Jennifer Smith, CDE 34:17
Barriers essentially are for people who have irritation to any or potentially all of the adhesives that are used to put a product onto the body, whether it's a CGM of any kind, a pump and pump infusion set or Omni pod the infusion or the the adhesive around the pod. It's essentially a way to create a barrier between the skin and the adhesive of that product. Some of the barriers are a spray or like you know something like Flo knees let's say or like a spray Benadryl or something enough to create them a little bit of a barrier to prevent irritation from the adhesive. Other barriers, though, are another sticky sort of tape, if you will type of product that you would put on to your clean skin. And then you would put your product on top of that, to prevent that adhesive from causing a problem for you. And the
Scott Benner 35:20
truth is some people have trouble with things sticking some people have trouble with irritation, some people aren't bothered by it at all, and we'll find out who you are. And then that'd be a great episode for you to listen to. Yep. All right, Episode 660. Oh, the next to actually I made up Episode 660, as Jenny is gonna get the finished strong with the rest of them is called black holes. And so it is a look into how my brain thinks about creating deficits of insulin in the future. Is that fair? That's fair. Okay. Yes. So again, that might not be day one. But it is a is an episode that a number of people reached out and said you talk about black holes in the episode, but you've never defined it as like, well, I will make a defining episode about it for you. Much the same as episode 664 dictate the pace is, it's again, it's just a look at how I think about diabetes really where I think you should sort of be out in front of it strike first however you want to put it. It's I don't think you should cover up and let diabetes happen to you. I think you should happen to it. So that the next thing that happens is quantifiable. You know, instead of Oh, diabetes happened, this happened, my blood sugar went up, it went down. I don't know why I like saying I Bolus and then I got low. And at least I know now I can change that Bolus. I see. You know, I see I did something and then something else happened? Correct. 664 dictate the pace. Okay, Jenny 668. For you carb absorption and digestion. Yeah,
Jennifer Smith, CDE 36:58
so we're taught a lot about carbs initially, or you'll be taught a lot about carbs initially. The simpler the carb, the faster the impact on blood sugar. And then what you eat with that type of carbohydrate could also lead to a shift in how your body digests or processes that food to make it visible in blood sugar effect, right? So simple food being something like a big bowl of green grapes, versus a big bowl of kale chips. They both have carbohydrates in them, but they're both going to absorb differently, you're going to digest them a little bit differently. So to speak, right? It's not like your body changes how it digests but because one is simple, pretty simple carb, you're going to get much more rapid impact from some foods than from others. So
Scott Benner 37:56
yeah, the carb absorption and digestion impacts the timing of the insulin, sometimes the amount of the insulin, it's important to understand what it is and how it works. Do another one Jenny 672 antibody,
Jennifer Smith, CDE 38:10
antibodies. So antibodies in general, are just a protein in your blood that's essentially produced to counter a specific bad guy that's come into your body, right? Like an alien, a foreign substance, something, something that's not supposed to be there, right. But we take that into diabetes specifically. For some reason, especially for type one, autoimmune diabetes, you will have your body respond, unfortunately, in the wrong way with the destruction of the beta cells, but there will be antibodies that show whether you've had an auto immune response, and that's the reason or you won't have antibodies. And a marker in the blood essentially, that will tell you
Scott Benner 39:03
and it's generally possible now that you have an autoimmune disease that you might see others and antibodies are going to be words that come up again, if you end up with something like hypothyroidism and or celiac or celiac or something to that effect. And speaking of hypo Episode 677, hypo and hyper just defines hypo and hyper hypo, low hyper high. Still feel like you should go listen to the episode
Jennifer Smith, CDE 39:31
glace glycemia, because they are together right with hyperglycemia. Hypoglycemia is just glucose,
Scott Benner 39:37
we sort of go through the words or the prefixes and you can see how like you can have hypoglycemia, you can also have hypothyroidism, you can have hyperglycemia, hyperthyroidism, etc. It's interesting, Jenny and I are we're delightful as we record these, so you should definitely listen to it no matter what. And so far on June 13 2022, the last EPA sort of defining diabetes is Episode 681, where we just go over all of the different types of diabetes. You heard a couple out here in this list. Yeah, we like you know, we really dove in. And we found we found all the diabetes, not just Lada and moody and type one and type two. But there's there's other stuff and it's interesting. As you can see, Jenny, as we wrap up this episode, you and I started making these defining diabetes episodes at episode 263. Bolus, I'm going to look just real quickly. If you'll indulge me for a second. Of course, I can look very quickly and see. 236 Excuse me? Episode 236, which was defining diabetes Bolus was the first one. June 21 2019. That is nine days shy of three years ago. Wow, that crazy? Am I wrong? 2021? No, I'm right. But you make the same level of sad excitement is when I do a lot of it. Everyone listening is like the guy with the podcast wasn't 100%? Sure. But a lot of it. Yeah, I can't know everything. I knew what it
Jennifer Smith, CDE 41:21
meant. It was just the words to know what the actual acronym was right? To know, you have to give yourself more credit,
Scott Benner 41:28
defending me like my grandmother, thank you very much. Scott Aloni knows,
Jennifer Smith, CDE 41:33
only because I like you.
Scott Benner 41:35
But I mean, the point is, is that when we started it on 236, did you really think we would have done another one last month?
Jennifer Smith, CDE 41:45
I don't know. I didn't know how many you're like, we're just gonna keep getting ideas. And then we're just gonna keep doing this. Like, that's great. I like doing this.
Scott Benner 41:53
But 681 types of diabetes we recorded in May of 2022. I'm just saying that's a long time, it's a long time and expect the list to grow. Because I think Jenny and I both completely agree that management of diabetes is, at first, its understanding, it's understanding that you have tools. And these tools are sometimes thrown around as words that you don't know. And you can't possibly you don't I mean, like if the word ketone never came up in your life, and then all of a sudden, someone's like, you have diabetes. And by the way, ketones are bad. You don't want to go into DKA. You're like, oh my god, like, right, what? And you know, so the way I like in my mind is, you can have a screw and a screwdriver. If you don't know what a screwdriver is, it might not help you. So learn these the definitions. And hopefully, one day when someone shows you a screw, you'll be like, Oh, I know what to do. And you'll reach in your pocket and pull out your screwdriver and just whip it right and that aboard and you'll be on your way. And, and I think these go a long way towards doing that. I also think they go a long way towards preparing you to listen to the Pro Tip series. You know, so Jenny, if you just heard her say a second ago, she enjoys doing this? I know you do. She loves helping people with diabetes. And I'm very proud that you're involved in these. I don't tell you this stuff off and on the podcast. So let me just do it. I'm looking at her. So it's embarrassing. These definitions, and you know, the Pro Tip series like I know, I'm the one who said like, let's do this, and let's do this. But let's be honest without you. They're not what they are. So I would thank you I would clap, but it's a podcast and it's meaningless. But right now, there's noise while I'm listening. Yeah, you've just been an continue to be such an asset to people with type one. And thank you. I feel I feel as
Jennifer Smith, CDE 43:50
Yeah, and I'm glad that you've started something that's grown into such a community of support for people. And that's the reason that I enjoy continuing to help you to put good information, I think that we're good is really important, because there's, there's a lot of misinformation. I'm not gonna call it bad information. But I think especially in doing these definitions, it's really important for people to understand what things mean words they might have heard, and they may be too embarrassed or too overwhelmed to ask, well, what does that mean? I don't get it. Can you explain that differently to me, and that's really, really important for you to live better.
Scott Benner 44:27
Yeah, I want to say that part of the value and kind of why I brought up how long it's been since we did the first one. And by the way, 236 was still 236 episodes into the podcast is yours for the podcast. It's because I saw someone online the other day. I don't want to say they were ripping me off. But let's say they were okay. They were doing their own defining thing. And I and I never listened to other people's stuff. But I thought let me just see for a minute and I looked and this person hadn't been involved with diabetes for very long. They hadn't been making their content very long. And then they did a a haphazard job of explaining the thing. It's still I think for their level of understanding, I think they did a great a great job. But there's something to be said for you. With 30 plus years of living with diabetes, plus your CD plus you, you talk to people literally all day long, every day of the week about type one. And me who's been making this podcast forever? I have. I mean, besides doctors, there's nobody who talks to people with diabetes more than I do, I don't think right, I record six, seven hours of conversations every week. And there's something about knowing, like being able to say something with confidence and put it into context, which you do for me all the time, because I'll say things. And you'll come around and be like, yes, in this specific situation. This is exactly what I just said. But don't forget about this aspect of it, which is not how my brain works. And so there's something between all the experience all of your training, my ability to tell a story, your ability to keep me honest, like it all just, it's why it's good information, I think, right? That's what
Jennifer Smith, CDE 46:09
I think because you also have a lot of pieces that people can go to specifically. And in many I've heard you say, in many of the episodes, or many of the ones that I've listened to myself, you'll say if you want more about this, go here, we've explained this a little bit better, or this whole episode is all about this. It's not just something that's brought up, and then it's gone. There's no worries, the person hanging in there listening to the rest of the conversation, but really, they wanted that little nugget that you kind of just accidentally brought up. They wanted that. And that's that's a really big piece of tying something that's very beneficial. Like in terms of education, together, you have to be able to send somebody to the right place for exactly what they want.
Scott Benner 46:58
We've been able to do this for so long. And I really served sincerely, maybe the sponsors like kept this podcast going and keep it going. But we've been able to do it so long, that it's now a compendium of information, not just an episode about what honeymoon means, right? Yeah. And I just got to note, I know you have to go. I just got a note from a woman online the other day, she said, I just finished the last episode of the podcast, she listened from one to at this point, she listened to 698. Right, like straight through and then showed a graph and talked about our agency and our success. And she said, I listen to this podcast straight through and look at my blood sugar. And, you know, it's because of this. So if you want it if it's in here,
Jennifer Smith, CDE 47:40
that's like almost a month worth of like, continued like, that's 24 hour day after 24 hour day, that's 28 straight days of 24 hours, you know, assuming I know some of the episodes aren't quite an hour, and some are longer than an hour. But in general, that's 28 days of not stopping listening. Yeah, that's a lot.
Scott Benner 48:01
That's a person I don't think you or I could sneak up behind on the street and talk and they would just spin around and go oh my god, Jenny's here. So anyway, my point in saying that is the information you need to live with insulin is inside this podcast. If you go get it. I think that's great. If you jump around, I understand. But I mean, listen to these defining episodes before you go to the Pro Tip series. I really actually think that's important. So agreed. Anyway, thank you very much, Jenny for doing Yeah,
Jennifer Smith, CDE 48:28
you're very well thank you for asking me continuing to have me Well,
Scott Benner 48:32
when I asked Stop it, you're making me embarrassed.
A huge thanks to Ian pen from Medtronic diabetes for sponsoring this episode of The Juicebox Podcast. Head over now to in Penn today.com To get started. And while you're doing that, make sure you've heard episode 711 which is the first part of this conversation. Hope you're enjoying the bold beginning series. If you are gonna look for other episodes that you think you might also enjoy. Jenny Smith works at integrated diabetes.com In case you want to hire her, and I'm gonna leave you a little bit of information after the music about how you can find out more about the podcast subscribe, and other such things
alright, some quick stuff you'll want to know. The private Facebook group now has 26,000 people in it Juicebox Podcast type one diabetes, people using insulin. You can hang out watch what they're saying talk, ask questions, pick brains, or just lurk whatever you need. It's there. Juicebox Podcast type one diabetes, including lists like the bowl beginning series, defining diabetes, the diabetes pro tip episodes, diabetes variables, all listed in the feature section of the Facebook webpage Juicebox Podcast, type one diabetes it's a private group, so you'll have to answer just a few questions so that we know you're a real person. Everything else you need to know about the podcast can be found at juicebox podcast.com, or diabetes pro tip.com. If you're looking for a great endocrinologist, we have a list at juice box docs.com. It's curated by the listeners, doctors who are down with how people who listen to the podcast they care their type one. You want that part to be easy to write juicebox docs.com completely free. Everything's free by the way, find me on Instagram, find me on Facebook, find me somewhere. If you're enjoying the show, please leave a beautiful rating and review in whatever app you're listening in. Like five stars. This is amazing. And then give a really great description. So the next person who sees your review will know that it's worth listening to. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast and don't forget that episode 712 The second half of this episode is available right now in your podcast player or at juicebox podcast.com.
Test your knowledge of episode 712
1. What is the main topic of Episode 712?
2. What does the term "Bolus" refer to?
3. What is "Basal" insulin used for?
4. What does CGM stand for?
5. What is the purpose of a CGM?
6. How often should you check your blood sugar with a CGM?
7. What can a CGM help prevent?
8. What is the defining feature of the Bold Beginnings series?
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#711 Bold Beginnings: Terminology Part I
Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Bolus - Basal - Honeymoon - A1c - Time In Range - Standard Deviation - Extended Bolus - Algorithm - Non Compliant - Glycemic Index - Glycemic Load - Pre Bolus - Trust Will Happen - Low Before High - Brittle Diabetes - Stop The Arrows - Ketones - Insulin Resistance - Feeding Insulin
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 711 of the Juicebox Podcast, a special two part episode that concludes on Episode 712, which is available right now to download
Welcome back to the bold beginning series with me and Jenny Smith. Today's two parter happens in Episode 711 and 712. This is bold beginnings terminology part one. In these two episodes, Jenny and I define every word that's available to you in the defining diabetes series. At the time of this recording, there were over 40 definitions. We did a quick definition for newly diagnosed people and left you the episode number. So you can go back and get a more complete definition. If you've just been diagnosed. Or if you're trying to figure things out, it is our estimation that this two part episode, part of the bowl beginning series will catch you up on terminology very quickly. If you're looking for the defining diabetes series, it's available at juicebox podcast.com diabetes protip.com. And in any audio app that you listen in, join the Facebook group Juicebox Podcast type one diabetes to find the lists of all the series in the featured section. This episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes. And because of the format of this episode, I'm going to put the ad right here for you so that you don't have to take a break while you're powerless running through these definitions. Isn't that cool of impelled to let that happen? Thank you and pen, even though I didn't ask you, but I know you're listening. So just be cool. All right. All right, ready the pen. It's an insulin pen. But it's more than that. Because it's attached to an application on your iPhone or Android phone. This application is going to do many of the things you've heard about people getting from their insulin pumps, you'll be able to see your current glucose right on the screen, a dosing calculator, active insulin remaining meal history, dose history, glucose history, activity logs, and you can generate reports based on your data. Not only that, but you're getting a great insulin pen, everything you expect the cap the needle, the insulin cartridge holder, it's an insulin pen, just like you've come to expect. But it gives you more with this attached app. You can go right now to N pen today.com To find out more and get started. And I'm gonna tell you what terms and conditions apply, but you may pay as little as $35 for the in pen. Medtronic diabetes does not want costs to be a roadblock to you getting the therapy that you need. Within Penn's Access Program. You may pay as little as $35. Where will you find that out? At in Penn today.com. On this site, tons of frequently asked questions that you're going to be interested in just scroll to the bottom. What is the M pen? How much does it cost? Our insulin cartridges included? Does M pen work with long acting insulin? Can I pair more than one M pen to an app? You want to know the answers to those questions? Go right now to in pen today.com and get your answer if you're ready to try the M pen when you're at the link. Just follow the easy instructions it says ready to try you complete a short form. And just like that you're on your way. In pen today.com forward slash juicebox in pen requires a prescription and settings from your healthcare provider, you must use proper settings and follow the instructions as directed where you could experience high or low glucose levels. For more safety information visit in Penn today.com. Just this morning, I put up the conversation that you and I had about this series. So you're gonna Okay, you're gonna find out what it's called for. Right now for the first time. Yay. So what I want to do is I'm going to stay with the naming system. So like there's that defining diabetes, colon, you know, Bolus and there's diabetes, pro tip colon, you know, whatever that episodes about, right? So with for the, for the prefix for this one, I chose bold beginnings. And I went over a lot of things I wanted to Thursday's just like let's just call it newly diagnosed. And I thought, well, then people who aren't newly diagnosed might skip over it. And I think it would still be very valuable for you if you were, you know, diagnosed six months from now, you know, sometimes people are like, Oh, it was six months ago. We're not newly diagnosed. And I thought so I don't want to I don't want to push people away from the content with the name that makes them think this isn't for me. So in the beginning I I mean, when we asked for people, what do you wish someone would have told you when you when you were diagnosed? And that's the beginning, damage any, that's what I'm going with. So
Jennifer Smith, CDE 5:12
it is a beginning and we very much explain. I mean, the title of it is good in terms of the beginnings part of it, because obviously, somebody has who's even six months in who has not put any not that they haven't put work in, but they haven't put the kind of like, evaluate thing kind of work in yet. They need to know some of how to begin.
Scott Benner 5:35
Yeah, I mean, you have to start somewhere you need to, you know, it's so funny as I wanted to call it like, it's funny. I know, it would have been confusing, but a part of me wanted to call it basil, because of it being sort of like, you know, the base. And, and I was like, Oh, that'll be to
Jennifer Smith, CDE 5:52
foundation would be another good word. Yeah,
Scott Benner 5:54
I know. I thought that'll be too trippy. So let's just go with alliteration bold beginnings. Perfect. So today, we're going to talk about terminology. Great. And I have the list in front of me. Do you have it?
Jennifer Smith, CDE 6:08
Let me bring up my notes so that I can
Scott Benner 6:13
we have 14 pieces of feedback that are under the under the heading terminology. I'm going to about you're looking I'll give you the first one person says that all of the terms were so confusing. MDI carb ratio correction factor, Basal Bolus Pre-Bolus. And she says, I really thank God for the defining diabetes episodes. So that's nice. That's not a question. That's a bit of an answer. But we'll talk around terminology for a little bit. Okay, perfect. So what ends up happening, right, you get diagnosed, you're in a doctor's office. They use words, as a matter of course, we all have a friend who's in it, or, you know, a therapist, you know, buddy, and they everyone uses buzzwords. That to them are everyday words, it's, you know, to these people saying Bolus and basil is like you saying, you know, sunshine in the moon, we think, Oh, everybody understands this, right?
Jennifer Smith, CDE 7:11
Or what's very common now, especially with texting are all of the, you know, the three letter means three words of right, those acronyms? Sometimes I have to look it up. Like, I don't know what that was.
Scott Benner 7:24
My wife texted me yesterday. And I said, I will answer you as soon as you tell me what that emoji means. Right? I don't know. And I'm not in a position to find out. So you know, it's so it's gonna happen. You're in the doctor's office? You know, you know, for me, one of the things that I maintain is that when doctors try to tell you about glycemic index and glycemic load, I just think the words are off putting. And they are. And that's why I end up saying, you know, you have to understand the different foods impact you differently, because I don't know, it's just from my perspective, I heard glycemic index glycemic load sitting with the nutritionist at the children's hospital, I was like, this is the part I'm going to ignore.
Jennifer Smith, CDE 8:08
Because it wasn't, well, and I don't want to it's not. It's not saying it mean, but you needed it simpler, right? Those big words can be really scary when you've also just been introduced to something that can be scary, right? Right. So you bring in all of these big words like, what happens with this hyper or situation or this hypo situation, or whatever is going on. And all of a sudden, like, you get these like, this increase in your heart rate, and you're like, what, what, what, what is it?
Scott Benner 8:41
I don't know what I'm doing. And then and then it's juxtaposed against the pressure you feel, to figure it out, and to do it correctly. Because I mean, it's either you as an adult, and my goodness, then you're like, I'm on my own here. And if I don't understand this, there's no one else. Or it's the pressure of, I had it, I had the thought directly in my head, I'm gonna kill her. I know I'm going to make a mistake, and I'm going to kill Arden and that's how it felt when she was first diagnosed. You know, again, here, all the terminology was so confusing. One person said, I needed a way to remember the difference between Bolus and basil. She said she made flashcards for herself. That's not a bad idea,
Jennifer Smith, CDE 9:19
actually. Right. That's not a bad idea. No, not at all. I
Scott Benner 9:23
interviewed a woman the other day. She was wonderful. I enjoyed it so much diabetes for over 40 years. And when I asked her what her Basal insulin was, she told me the name of her meal and some 40 belly. Yeah, yeah. And so
Jennifer Smith, CDE 9:39
well, do you if from the Bolus Basal aspect Do you want to really know the reason for Bolus for food?
Scott Benner 9:47
So I was thinking, do you know it? Well, well, what I was thinking was let's run through these people's thoughts a little more here and the feedback that we got, and if the feedback sticks with just like, hey, I need to know the difference. Maybe we can Do a condensed speed version of defining diabetes and roll. Awesome. Sure. Okay. Okay, as dumb as it may sound, the difference between type one and type two is confusing to me. Another person said insulin resistance, how do I figure out what that is? What is the dawn phenomenon? I think in an episode for being newly diagnosed, it would be really helpful to use full terms for things rather than just acronyms and jargon. And we'll all eventually learn them. That's interesting, too. Okay,
Jennifer Smith, CDE 10:31
that's not a bad. Again, if somebody's asking anyway, and really wants to know, then they will be more informed the next time their clinician says a word. Yeah, they'll actually know what it means.
Scott Benner 10:43
And I think that, well, I think the way we listen, we didn't just make defining diabetes by mistake, like it really seemed the way to go. And people on the other end, have to be willing to listen to it to learn, and they have to know it's there, which is difficult. You know, it's funny, not to take too much of a sidebar here. But the other day, I saw a person talking about the bolusing, insulin for fat episode, and how life changing it was for them, and that they had been struggling for a really long time. And I thought, but that episodes been up for years. And then I remembered, just because I put it up, doesn't mean everybody see. But from my perspective, you're like, I did that already. So I take the
Jennifer Smith, CDE 11:27
especially if somebody's starting with Episode One, and just being very, like just moves through the episode, one episode took a long time to get to the other episodes,
Scott Benner 11:37
this person makes the point that a lot of the episodes feel pump specific, but that most people don't get pumps in the beginning. And it's funny. I want your opinion of it. I don't think the pro tips or pump specific, I think that you could listen to the pro tips and just apply it to a life with MDI. But maybe when people hear it described through pumping, they don't think it would be backwards compatible, maybe.
Jennifer Smith, CDE 12:07
Right? I think the biggest thing that you could learn from the pro tips, if you are using MDI are the strategies for especially bolusing remain pretty much the same in terms of understanding the timing of insulin. It's the delivery of how you would do it with an injection comparative to the fancy features of a pump that might you tell it to do something and then it continuously does it versus on MDI, you may have to feed a little insulin feed a little insulin feed a little insulin, it's the same concept. It's just you may have to do a couple more injections with MDI, to get the same impact. Yeah.
Scott Benner 12:48
Alright, so I'll tell you what I'm gonna do. Because I'm looking through everybody else's information here and overall, around terminology, it's Look, I need to know what this stuff means I need to know quickly and the one woman makes there's, I say, woman, by the way, like 75% of the people that listen to podcasts are women. So I'm just assuming they're women, I guess. But it could be a guy. The one thing that I'm seeing is I was overwhelmed. The default I found the defining diabetes episodes eventually, but it felt like a lot. And I didn't know what to listen to. So I think we're going to do exactly what I just said, Here, we are going to play a speed round of defining diabetes. To an eye, this is gonna be a fun test. Alright, so I have
Jennifer Smith, CDE 13:32
we make this into a game that we can, like, you know, put out there.
Scott Benner 13:36
Well, here's the, you know, we should first of all, and here's the thing, I'm looking at the list. It is. It's long, it's gotta be 40. Oh, my goodness, hold on. I'm gonna pull up Isabel's list. Do you know that every time I make a new episode, that fits on the list is about re does the list and says it's awesome. She's a pretty cool person. So our defining diabetes. Here it is. I wonder if I put it in this document? If you would see it? Does it update in your notes under the Dr. Jack's or diagnose January comment? If not, it's okay.
Jennifer Smith, CDE 14:26
I saw something pop into my notes.
Scott Benner 14:30
Well, I'm gonna I'm gonna look through it. Is it a image? Yeah. Is it an image? It's an image? Was it not coming in clearly yet?
Jennifer Smith, CDE 14:39
Let's see. Oh, there it is. It's under Yeah, it's the Juicebox Podcast defining diabetes series with all of the Yes. Okay,
Scott Benner 14:47
so, alright, so this is what we're going to do and there are 44 terms on this list. So right now the Define diabetes series begins at episode 236 and runs intermittently all the way up to 677 was the last defining we did. All right. Yes. You ready? What do you think? All right, so it's 11 o'clock now we have 30 minutes and 44 things that define.
Jennifer Smith, CDE 15:13
I could actually go a little beyond a little time between between people. So yes.
Scott Benner 15:19
Taking the fun away but I appreciate it. Yes, we
Jennifer Smith, CDE 15:22
will try 30 minutes. Go.
Scott Benner 15:25
Okay, Bolus. You go Bolus.
Jennifer Smith, CDE 15:30
Me to go we'll go. Bolus is the amount of insulin you take to cover food that you put in your body.
Scott Benner 15:37
And if somebody says What's your Bolus insulin, they mean your mealtime or your fast acting insulin? Correct. Some examples might be Novolog, a Piedra fiasco humor LOGG. Did I miss any little jab loom JEV. So those are insolence you use to correct high blood sugars or to cover meals. Correct. That's good. That's what that means. All right, that's what Bolus means Basil is a slower acting insulin. It's either injected for people with MDI. The way I always think of it, whether it's right or not, is that it kind of goes under the skin and a crystal form and then sort of melts away slowly over time, giving you a base level of Basal insulin Basal insulin is meant to control your, your blood sugar away from food. And it if it's dialed in correctly, it should hold your blood sugar fairly stable at a place Basal insulin shouldn't drive you down. It's not its job to overwhelm meals. It's a baseline of insulin if you're using it. Good.
Jennifer Smith, CDE 16:43
Oh, I was gonna say one. In fact, to add on to that once your Bolus is done working, your Basal should hold you where the Bolus left you. If the Basal is right,
Scott Benner 16:54
that's a great way to put it. So Basal insulin is let's see love a mirror Lantis. What are the new
Jennifer Smith, CDE 17:02
Jao? Trust Siba basic lar. I might be missing one
Scott Benner 17:11
you had to pick one if you were if you were giving a person on MDI a Basal insulin. Which one would you pick? I have an answer. What is yours?
Jennifer Smith, CDE 17:18
To in today's world, I would pick receba.
Scott Benner 17:21
Me too. And that's only based on feedback I see online from people.
Jennifer Smith, CDE 17:26
And that's based on my feedback that I see actually from the people that I get to work with. It seems to be much better and in from I know a lot of people probably say Well, is it good for age, you know, a specific age. I have kiddos using it and adults using it and it across the board seems like a very good true 24 hour insulin.
Scott Benner 17:50
Oh, you know what we should do while we're doing this? I'm glad I thought of it after only the second one Bolus. The defining diabetes episode for Bolus is episode 236. The defining diabetes episode for Basal is 238. The next defining diabetes is 241. Honeymoon. It's your turn. Awesome. Honeymoon. Yay. Wait, no, no, no, hold. I did that already. No, no, I tricked myself. Basal insulin in a pump is different. So if you're pumping, right, you don't inject Tresa are another thing. Your pump just takes the fast acting insulin, your NovaLogic for example. And it not only you know, can you tell your pump I just had 30 grams of carbs. And your pump might say to you, well, that's three units and you put it in, but you tell your pump I need 20 units of insulin every 24 hours for as a Basal insulin and it breaks those 20 units down into very small, tiny, like blip pulses. Yeah, like pulses. And so instead of injecting insulin, like you would with MDI, for your Basal, and letting it work on its own, the pump puts in a little bit a little bit a little bit constantly, it creates that baseline. Correct. Right. So
Jennifer Smith, CDE 19:03
and that is the beauty of a pump is also using only what we consider rapid acting insulin or Bolus insulin. Your body doesn't have to sort of figure out the action of two kinds of insulin right? A Basal injected insulin like to receive our Lantis and then a Bolus insulin like Novolog, for example. You should however, always make sure to keep Basal injected insulin in your refrigerator in case your pump fails, right. That's my little educator, thing for you appreciate that.
Scott Benner 19:37
One day, I will actually do that. Maybe when Arden least or college will be the first time we actually do that because that would be a good idea.
Jennifer Smith, CDE 19:45
So when your pharmacy isn't like two seconds away from your house, right?
Scott Benner 19:49
So then once you're in so when you're injecting insulin when you're MDI multiple daily injections, which we'll get to on this list at some point, Bolus is a thing. Like your Bolus insulin is that thing, your Basal insulin is a thing. But when you're pumping their concepts you Bolus because the pump just holds insulin and when you Bolus it puts in insulin, and it also creates a Basal level. I don't know if I'm saying that right. But do you really mean like that it's not as tangible when you talk about it in pumping their functions. And when you talk about an MDI, their vitals, does that mean I think
Jennifer Smith, CDE 20:25
it's because of the difference, as you just said, there's a defined Basal injected insulin. And that's a kind of insulin. It does the same thing as your drip, drip pulses of basil coming out of your pump. But you're right, I guess I never thought about it that way that, you know, pump. It's the same reason for using the insulin, even though you're using two different kinds of insulin to do the same thing. It's
Scott Benner 20:52
almost like the difference between writing on paper and typing on a computer. Like yeah, right. It's a thing is happening when you're on a pump. But when you're writing on paper, you're physically accomplishing it. Oh, I'm good with that one, episode. 241 honeymoon. Sorry, it's your turn. Already six minutes into it, we've only done so
Jennifer Smith, CDE 21:14
we're good. That's okay. Oh, is that phase after diagnosis, where your insulin needs may come down by how much is really, completely individual. It may happen soon after your diagnosis. It may happen a little bit later, like weeks after diagnosis. It may last for a short period of time, short being maybe a week, and it may last longer. Some people it could be an entire year of honeymooning. So it's something that happens essentially, once your body has enough insulin from injections, or maybe you've started a pump pretty quickly. It gives your beta cells a little bit of a break. And so you often get a little bit, outcome, or output I should say from those data's again, they start to help, because they're not as stressed as they were pre diagnosis where they couldn't keep up with such high blood sugar levels. And so you end up having this drop off in insulin need. Some people require only Basal insulin, they don't take any Bolus insulin for their meal coverage. At first, and then some people may take just really tiny amounts of both kinds of insulin, Basal and Bolus insulin.
Scott Benner 22:36
So the way you see it kind of in the real world is the doctor set you up with insulin, it feels like it's working. And then all of a sudden, you wake up one day, and it feels like you don't need as much of it or sometimes at all, or somewhere in that spectrum. The reason it's a term that people know about in diabetes is because it's incredibly frustrating and confusing. Because if you think about it, you've made the decision. I need insulin to cover this food. And then what happens if all of a sudden there's another entity also giving you insulin, your beta cells right now you've got twice as much as you need, your body doesn't see manmade insulin and go oh, no worries, we don't need it. So yeah, right. So two things are happening at once. Is it possible that someone never experiences a honeymoon? Yes, okay.
Jennifer Smith, CDE 23:26
All right, adores that it's so mild and things are not quite contained as much that it may not really
Scott Benner 23:33
notice. That is what I thought when I wrote down to people never Are there people who never experienced it. What I thought was, I wonder if they're just people who never notice it? Because maybe their management isn't even such like maybe put yourself in a scenario where your doctor is like shooting for a 200 blood sugar. Right? And maybe you're experiencing 150 blood sugar because of the honeymoon, you would never know that your pancreas was helping,
Jennifer Smith, CDE 23:57
right? Because you're not necessarily getting too low. So it's not worrisome. Right?
Scott Benner 24:01
Right. It's the outcome that makes you worried about it. Like if you have a if you have a great doc that sets you put your settings together where your blood sugar's 110 all the time. And then your pancreas kicks in and make sure 80 or 70 or 60 that you would notice. Absolutely, yeah. All right, honeymoon episode 241. Episode 243 is a one C. Say the real words. What do they mean?
Jennifer Smith, CDE 24:27
Well, a onesie is hemoglobin a one C.
Scott Benner 24:32
a 90 day that's it. The blood test can be done by a finger stick in the office or a blood draw gives you a 90 day average of what your blood sugar is or was correct. It's weighted differently though, right? Like if you had an average blood sugar of 150 in the first 45 days, but an average blood sugar of 80 and the last 45. It might show lower is that right?
Jennifer Smith, CDE 24:55
That's correct. It's weighted heavier to the more recent timeframe. And the reason is because of the cycle of red blood cell life, of which hemoglobin is a piece of that. And glucose has an affinity for hemoglobin. So the more glucose you have in your system, the more it gets stuck to the hemoglobin. And the life of the red blood cells essentially has a memory, if you will. So, older red blood cells will not be in as large of a concentration or percent as the ones that are closer to the time period where you got your blood drawn, or had the fingerstick done.
Scott Benner 25:37
Okay. Back in the day, once he was the only way that people using insulin could track their successes or or see where they might need adjustments. Today, we don't just talk about a one see their journey. What else do we talk about?
Jennifer Smith, CDE 25:52
We talk about time and rain, I'm in
Scott Benner 25:54
range, which by the way, as I'm looking at our defining diabetes series, we might not have defined. So really, it's possible we're gonna we are making more work on ourselves. So now I'm thinking, so, but But listen, here's why your agency can be fooled. And it's a great measurement. I'm not a person who says it's not a great measurement, I think it's a it's a reasonable way to see where you're at, except if your blood sugar is 400, for 12 hours of the day, and 50 for 12 hours of the day, your agency is going to look lower because of the average. But that is not healthy. And that is not the right way to achieve a seven a one C for example, you can get to a seven the right way or the wrong way. And that's and but but go to Episode 243 For a more complete description of a one C, but find the diabetes pro tip episodes eventually for an idea of how to keep stability so that you can trust the agency that you're seeing when you get it tested.
Jennifer Smith, CDE 26:57
Correct. And I think he was he was one of like the first episodes we did together, wasn't it?
Scott Benner 27:03
Yeah, it was, before we did any series, I asked you to come and talk about it. So there is a there is an all about a one C episode. That's just you. And like a young Jenny and Scott talking. This is a little embarrassing. But the next defining diabetes episode 245 Is time and I looked right past it on the list as I was like, I don't see it anywhere. Go ahead, give them time range.
Jennifer Smith, CDE 27:28
Yes, time and range is a, it's a good visual of a defined bottom and top value that you want to stay within the typical defined time, especially if you're using Dexcom, or many of the other continuous glucose monitors, they have a default of 70 to 180. So if you are looking at your CGM data, especially the amount of time that you spend between that bottom and top is going to be your time and range the time you you know, a percent of the total time in glucose overall, you'll also be given a time above that and a time below range to how much percent some some of the databases also do. Time wise, like how much time did you spend above this in hours or minutes? Which is kind of interesting to define it that way too. But yeah, time and range. I think also, it goes along with what do you want your target to be? So you have to define your target range to be able to then say, Oh, I spend, you know, 90% time in range? Well, that's great. What's your target that you're setting that for?
Scott Benner 28:44
So anyone see time and range, and the next defining diabetes episode, Episode 247, standard deviation, these are sort of the three things you use to measure your actual outcome. You can't just look at the A one C because as we said, it could be fooled. You can't just look at time and range. Because what if you set your range from 60 to 300? And you're like, I'm always in range. That doesn't count. Okay, that's not fair. You got it, you got to play you got to set up some rules, right. So for instance, Ardennes is well, I guess Ardens is 70 to 150. In her clarity report and clarity is just the software that that Dexcom uses to help give you a feedback. And so if Arden's 151, she's high out of range, if she's 69, she's low out of range, if we keep her between 7150 to 24 hours that would say that we were in range for 100% of the time, right so anyway, don't like don't lie to yourself, I guess like like set it up like and so you can see where you really are. I find it incredibly valuable to look at those numbers every other like few days I just pulled up on my phone real quick. I'm like alright, we're where we're at. I expect If it's B or G, something's happening, you know, right. Here's the thing. I'm embarrassed. I need you to explain standard deviation. Oh, because the math thing, I know what it is, I can't explain it. And you're, you're like what?
Jennifer Smith, CDE 30:17
Well, I also think that standard deviation, I mean, well, you can essentially explain it as a math thing. It's similar within diabetes, but you'll also see that value represented as milligrams per deciliter, or for those who are millimole as millimoles, and especially looking at your clarity reports, because they will give you a standard deviation. And really what that indicates is variance. Right? A deviation from, from your average, up and down. Correct? Yeah. So if you're saying, okay, my standard deviation is 60. That means that you're having a wide variance up and down from where your like stable midpoint is. If you have a standard deviation, that's 22, then you have a very small variance up and down from where you're kind of averaging.
Scott Benner 31:16
So smaller, the number of better you're doing,
Jennifer Smith, CDE 31:18
the smaller the number and another one that kind of goes along with it, which we don't have on our defining list. But people consider similarly is the coefficient of variance, right? This is that CV. I mean, that's located within there as well. I think many more people pay attention to standard deviation, though, to try to say, am I improving, and that kind of goes to goes along with that time and range, you know, defining your target range. And let's say you've had it set really high, you've had it set from 70 on the bottom to 250 on the top, and you're looking to improve, you're taking tips and things and you're learning more, bring that top number down, right? And compare time periods so that you can actually see, okay, I had this much time in range, but now I've tightened my, my range, am I actually doing better, even though I've tightened things up, and that's also where standard deviation should come in. Because if you've tightened things up, but your variance has not changed, it's gotten a little bit worse. That's not doing better than
Scott Benner 32:27
right. So that's an episode 247, where Jenny and I do a better job of explaining standard deviation than me just going I don't understand it. And if you want a bonus for that one, episode 343 is called standard deviation and her friends. It is a conversation that I had with a doctor who works for Dexcom, John Welsh, and we do a deep dive into standard deviation, coefficient of variation, a one C time and range and more like we really dig into it if you want to, like do a data geek diabetes. Deep Dive, it's episode 343 on
Jennifer Smith, CDE 33:02
I might have to listen to that. Oh, he was I don't think I've listened to that one. He
Scott Benner 33:05
was very interesting. Okay, Episode 249. To finding diabetes, extended Bolus, I can do this one. Awesome. Alright. So if you have a pump, and you know, you could kind of mimic it in a MDI. But if you have a pump, you could say to yourself, I'm eating pizza, which I think is going to be 60 carbs. But I know that when I eat pizza, I don't feel the impact of pizza in my blood sugar for an hour. Let's just say that that's your experience. It's probably longer than that. But okay, we'll say an hour for your experience. But I do know I need some insulin when I start to eat but not all of it. If I put in too much, I get low. So what I'd like to do is extend my Bolus. So this 60 carbs, I've decided this is let's just say your your ratio is one to 10. And you need six units, what you really want is for, I don't know three of the units to go in when you Bolus, but you'd like the other three units to get stretched out over an amount of time. So you can tell your pomp, I'm going to extend this to three now and do the other three over 90 minutes. And that it will take the remaining three units that didn't put in and stretch it out almost like a really heavily heavy Basal program, like we just discussed five minutes ago, how Basal on your pump is spread out little bits at a time little bits at a time constantly. In this scenario over those 90 minutes, it would take those three units, break them down over 90 minutes and put them out in small boluses over those 90 minutes, and that would be extending your Bolus. Is that fair? Is that fair? Not bad. All right. There's nothing to add to that. I did it.
Jennifer Smith, CDE 34:50
Right. No, you did it.
Scott Benner 34:52
Here's the thing. Perfect. Here's the caveat. They're not easy to figure out. Because if you extended over two hours and you really needed it Over an hour, then you're too weak. If you extend it over, you know, over an hour, and you really need to extend it over two hours, it's too strong. It is a to me it's a trial and error thing to learn how to do an extended Bolus. If you're on MDI, it's not the same, because you can't slowly stretch it out. But in the example of food that is going to cause a rise later, you can Bolus some up front and then inject again, a little later act almost Pre-Bolus thing the rise, which is sort of what you're doing with an extended Bolus as your Pre-Bolus in the next rise that you expect,
Jennifer Smith, CDE 35:36
correct. And a lot of that on MDI. I mean, along with pumping to it takes some analysis of some of the similar things that you've done over and over to see enough of a trend to say, Oh, well, this always happens when we have peanut butter and jelly at lunchtime. So we'll have to try an extended Bolus or we'll have to try a double Bolus sort of plan.
Scott Benner 35:57
Can I do the next one and then you can do the one after? Sure. 251 is algorithm you're going to hear people say algorithm you might think Oh, I hear people say all the time, Facebook algorithm algorithm, it computer program, think of it that way. Right? In terms of diabetes. Let's see on the pod has the Omnipod five tandem has control IQ Medtronic has the 670 G that right there all
Jennifer Smith, CDE 36:26
777 Their newest, and in Europe 780
Scott Benner 36:32
Do It Yourself versions loop. What's the APS one called a free
Jennifer Smith, CDE 36:38
APS, there's Android APs. I'm sure that open APS I'm sure that I'm that there are lots of the APS like little offshoots that I don't really know as much about honestly
Scott Benner 36:53
doesn't matter. The ones Jenny just ran through are literally do it yourself. Someone on the internet made it and made it available to somebody else. Some people choose to download them, you put it on your phone as a as a program, as an app, I guess would be what the young kids would say. And you're somehow this app, I'm not a computer person talks to your Dexcom CGM, for example, and to your pump, and it makes decisions about insulin dosing and handles those decisions, the algorithm is handling those decisions, whether it's on a do it yourself unit, like the loop which Arden uses, Jenny uses Jenny loops, or it's on the new AMI, pod five, or control IQ from tandem or any of the others the algorithm is just the computer, program app, whatever you want to think of it, taking in your data, making decisions and then telling your pump make your basil higher, make your basil lower, we need to Bolus here, that kind of stuff.
Jennifer Smith, CDE 37:54
Correct. And all the algorithms, they're a little bit different for each of the different system. Right? So swapping from one to another, you may have some reworking to do. And or that really starts with relearning this system versus the system that you're coming off. Yeah.
Scott Benner 38:14
All algorithms are settings based if your settings are bad algorithms are as useless as you not understanding where to Bolus if you're on MDI. But that's what algorithm means specifically, can you do episode 253 non compliant?
Jennifer Smith, CDE 38:29
Oh, this is such a word that I, I so hate this, this one. But yes, I can do it. So non compliant, if we look at it just as a simple non emotional, this is what non compliance specific to diabetes and or really any health condition means, right? You are intentionally neglecting your own care or your child's care, right? That you're really refusing to take good steps to do better to remain in the target that you've been given to aim for. That's non compliant, whether it means not taking your medications, just not appropriately managing and covering for food that you're eating, or you're missing your doses or whatever it is a I don't love the word non compliant. In fact, I really hate it. Because I don't think I don't think 99% of people are willfully choosing to do themselves harm, right? I don't that would
Scott Benner 39:40
be my that's my experience from talking to people. What I see mostly like, I'm not going to tell you there aren't some people who just have breakdowns and just like I'm not going to be diabetic anymore, which gets you to the hospital in a couple of days. But mostly most of the time what I see what happens is, the doctor gives orders to the patient The patient either doesn't understand them or understands them, and they're not good orders. And then you come back to see the doctor three months later, your numbers in close aren't where he expects him to be. So the or she so they make the assumption that you're not doing what you were told, and therefore they believe you to be non compliant. That's pretty rad. Yeah,
Jennifer Smith, CDE 40:20
exactly. And, and therein lies I think a big, big problem really is. There's a rabbit hole here. But in many office visits, there's a limited amount of time that can be spent in discussion, and really digging into what the data is showing. And when you only really look at data, and you don't ask more about what's happening in the person's life. You may certainly think that somebody is quote, unquote, non compliant. Yeah, well, maybe this big life, upheaval ended up happening. And that doesn't mean that the person doesn't want to take care of themselves. It just means that something has happened that is sort of taking over and they're trying to do their best. So yeah,
Scott Benner 41:07
here's, here's, what I would say is if somebody's calling you non compliant, and you and your heart are like, No, I'm really trying, you can express to them. I'm doing what I've been told it doesn't seem to be working. Can we try something different? You could run into a doctor who's like, yeah, great, let's make a change. You could run into an ego that says, oh, no, no, no, what I said to you was right, you must not be doing it. That's them. And that does happen, I'm sorry to say, but that's them, not knowing what to do next. So they just push it back on you. Correct. There are even people who will go listen to these defining diabetes episodes, they will listen to the Pro Tip series, they will show up with an A one C five, five, and the doctor might say to you, that's too low, and call your non compliance because they want you to be at six. There's a lot of self care in diabetes. And if you ever experienced any of these things, you're going to realize that you need to be the arbiter of what success is for you that you're not, you're not noncompliant if you're trying. Can we move on? Do you want to say more? Yes. Episode 255, the famous glycemic index and glycemic load. And by the way, by the way, Isabel, if you're listening, you have misspelled glycemic on my list. I want it fixed immediately.
Jennifer Smith, CDE 42:27
Because probably an honest little mistake. On the see on the keyboard right next to each other,
Scott Benner 42:34
fired, fired this lovely woman who makes these lists for free out of the goodness of her heart, she can't do it anymore. Episode 255, glycemic index glycemic load? Go ahead.
Jennifer Smith, CDE 42:45
Yes. So glycemic index is the first, glycemic load takes it a little bit further. But really, glycemic index tells us with diabetes, whether a carbohydrate containing food or not, how quickly it's going to raise your blood sugar. That's really it. So white rice versus green kale leaves, they both are carbohydrates, they both have a certain amount of carbohydrate in, you could eat the same amount of carbs in both of them. 10 grams, 15 grams of both, and they're going to have a different impact on your blood sugar in terms of a timeframe. Okay, so the slower or the lower glycemic sort of numbered foods are going to have a slower overall impact on your blood sugar in a defined time period of about two hours.
Scott Benner 43:39
Take off, take a bite of pizza, and it's three carbs of pizza, your blood sugar rises at one rate, take a spoonful of sugar that's three carbs or sugar, it will rise much quicker. Correct? Exactly super important to understand when you're boasting for your meals glycemic load is
Jennifer Smith, CDE 43:55
glycemic load is the amount of that food that you eat at a given time. So honestly, glycemic load is the bigger impact. In my opinion. If you look at portion, a good example is watermelon. Watermelon has a really high glycemic index somewhere in the 70s. Anything above 70 up to 100 is very high. So if you take a small half cup of watermelon, compared to four cups of watermelon, they have the same glycemic index. But the load effect of the smaller portion is going to downplay its impact on blood sugar comparative to the four cups of watermelon, which is going to have a very large impact on your blood sugar.
Scott Benner 44:45
Okay, so the the load kind of a way to think about it is so the glycemic index is how quickly it punches. The load is how much it hurts.
Jennifer Smith, CDE 44:57
Yes, yeah, yes. Okay. All right. Yeah. That's a good way to explain it. Yes, I like that.
Scott Benner 45:03
That's how I got the podcast. Okay, so that's 55 Pre-Bolus. I'll do 258 is Pre-Bolus. It's just the idea that man made insulin even though Jen Jenny hates if you call it fast acting insulin cuz she doesn't think it works fast enough. And she's right, it does not work quickly enough. But in, in, depending on your situation yourself, how hydrated you are in a million other things. Insulin begins to work slowly, right. So when you put it in, it's not like it's doing its full job. Immediately, it takes time to kind of ramp up the best way I can explain it very quickly. It's like watching a locomotive pull away. It's putting all of its energy into it, but it's not going 100 miles an hour, it takes it a half an hour to get up to speed this this locomotive I'm making up a number. I don't want to train people calling me going it takes a locomotive 23 You know what I mean? So you put,
Jennifer Smith, CDE 45:56
I'm sure that there are people with diabetes, who are locomotive drivers, who probably would know the direct answer. So
Scott Benner 46:02
it's occurred to me as I said it so. So you put the insulin in, you sort of let the Pre-Bolus you Bolus before the food, pre the food, so that when the food starts impacting when the glycemic index of the foods starts slamming into you, at the same time, the action of the insulin is also occurring. And that there's a great episode in the Pro Tip series that I'll talk about tug of war and all this stuff, and you will understand Pre-Bolus And when it's done, but as at the definition Pre-Bolus Is the idea of putting in your insulin before the food so that the impact of the food and the action of the insulin can happen at the same time. Correct? Right. I think I'm gonna have to do the next one.
Jennifer Smith, CDE 46:44
Next one. Because it's your
Scott Benner 46:47
term, yes, please do episode 260 is called trust will happen. And it exists because because at some point, you'll get to believe that what you know is going to happen is going to happen. And it's a big deal when you're using insulin, like we just talked about when you're putting something in your body or your kid's body that could make you so low that you could have a seizure. And you're trusting that the Bolus will start working when you think it will and that the food will hit when you start when you when you know it will. And even though you see it over and over again, it's it can be difficult to give yourself over to it. So I like to tell people that eventually you'll, you'll trust it and trust will happen. And what you know is going to happen will happen and it's a it's convoluted, but if you listen to it, it's a it's actually a big deal. Because otherwise, you can't do it. It's it's like I guess the simplest ideas. If you're parachuting, you can't jump out of the plane unless you believe the chute is going to open. Correct. Right. So trust will happen. All right, Episode 269. lobe Oh, Jenny, sorry, hold on. This is gonna be me talking for a while this is another episode 269 is called Low before high. Super simple. I'll give it to you in two sentences. When I wake up in the morning, every day, and I think about diabetes, I have a mantra, I would rather stop a low or falling blood sugar than fight with a high one. It is a staple of how I keep my daughter's blood sugar down. It's just a theory. It's a way to think the minute you start accepting the higher blood sugars, things get out of whack. So you're shooting for low understanding that the old make a mistake at some point. But fixing that mistake is far, far more palatable than fighting with a high one. Okay, and then the next one is episode 284. Jenny brittle diabetes.
Jennifer Smith, CDE 48:56
Yeah, that's another good thing. Like give me the nasty one. That's not very fair.
Scott Benner 49:04
This is like when you make the nurse give you you know how the doctors make the nurses do the shots and they leave the room. So the kids of course, yeah, I'm doing that with you right now.
Jennifer Smith, CDE 49:12
Right? Yes, exactly. That's not very fair. So brittle diabetes. Again, it's it's a term that is really an older term. In my professional opinion. It's meant to describe somebody who appears to really have very difficult to manage glucose numbers, where there are very severe swings up and down, and nothing seems to be able to contain them. And that essentially is Bertel diabetes. Yeah. Is it? Is it really a thing that is truly yet to be defined in terms of research urge, I mean, brutal diabetes, if it is truly happening, somebody should have worked through all of the pro tips. And said, I've, I've done all of these steps, I've gotten help from somebody who really has spent time with me. And I still have these time periods where I just don't know why it's not working. Right, right. And I think that many times brittle is being it's defined in a clinical setting, to somebody who hasn't had the greatest
Scott Benner 50:40
assistance whose blood sugar's look very variable for no reason. Correct. Right. But I generally believe there's a reason you just don't know what it is.
Jennifer Smith, CDE 50:51
I generally really, really, really Yes, believe that there is a reason and some of the meat the some of the reason may also be undiagnosed other conditions, that nobody's taken the time to ask enough questions to the person to say, Well, hey, this is happening. And it started happening about here, let's take some lab work. Let's look at your digestion. Let's you know all of these other pieces that could actually be creating this variability. I would say 9.9 times out of 10. You don't have brittle diabetes, right? There's, there's something that needs more assessment. Yeah.
Scott Benner 51:29
So if I was I, at some point, in these episodes, you'll hear me just say, you know, the worst thing I think you can do is just throw your hands up and go, Oh, that's just diabetes, you know, my blood sugar falls out of nowhere. It's what happens. Usually, it's because you didn't Bolus for a meal correctly. You got your insulin out of balance with the food you drop really quickly. And then doctors look at that, you know, think about 20 years ago, versus now even you still have trouble getting people understanding how insulin works, even at the physician level, but 20 years from now, they're like, I don't know, you're fertile. Like it just it to me, it seems like an answer out of the 1940s. You know what I mean? Like, like, Absolutely. Like, like, I don't know, like, like, put yourself back in that time. Right. And, yeah, there's a man and a woman and they're married, and the man does something terrible and the lady gets upset, and they go, Oh, she's, that's how she gets, you know, they mean, like, you know, it must be her time of the month, like just these general throwaway bullshit answers. I didn't mean to curse during this, that that are, the way I hear them is I don't know what's going on. So I'm just going to say that this is something unforeseen and uncontrollable. And it's just the way of the world but might not be the truth. Someone's calling you brittle at this day and age. Go listen to the Pro Tip series. Oh, okay. Here's another one for me. Episode 286. Stop the arrows. Again. It's just a theoretical thing if you have a CGM. I prefer to say that sometimes we all get stuck wondering what's happening, instead of just stopping the arrows, right? Like, well, my blood sugar's jumping way up. I don't know what and then the people sit back and they go, Well, I guess I Bolus that this time for this while you're talking to yourself, your blood sugar is shooting up, right? Just stop the arrow. Again, in much more detail in the episode, we don't need to spend a lot of time with it. I'll talk about like keeping your car in a lane and stuff like that. You'll love it. It's going to be great fun for you. So 288 ketones, not as easy as it sounds, Jenny. So I'll give it to you. Again. Nice, hard one.
Jennifer Smith, CDE 53:33
Yes, no and ketones specific to diabetes now, right? Because that's what we're talking about. They are chemicals, if you will, that the body makes when it breaks down fat to use for energy. So could you have ketones and could they not be dangerous? Yes. You could, in fact, have any people wake in the morning in a fasting state and have what are overnight sort of fasting ketones, right? Those are not the dangerous ketones that we think of when you get diagnosed and you're told all about all of these things. And one of them is ketones. Watch out for keto.
Scott Benner 54:23
You're in DKA, diabetic keto ketosis, right. So, right.
Jennifer Smith, CDE 54:29
So I mean, DKA, those types of ketones are very different ketones and those are not the ketones that you want. Obviously, that is a very serious complication. That occurs essentially, when your body has a very high glucose levels and not enough insulin. Then you could very easily move from high ketone levels into diabetic ketone. acidosis which
Scott Benner 55:00
is life threatening, so it's a big deal. Yes. But it doesn't stop it from being true that if you eat a low carb lifestyle, you might see some ketones. Correct? Yeah. Okay.
Jennifer Smith, CDE 55:11
So and that's actually a good point to make in terms of like a little clarity, I should say. The level of ketones very much defines DKA versus nutritional ketosis, which is really what if you're on a low carb or a ketogenic diet? It's really what you're aiming for. Your goal is to get your body burning fat for energy instead of carbohydrates. Okay,
Scott Benner 55:37
yeah. So, alright, Episode 295. And by the way, there's a really deep dive ketone talk in the defining and in other places in the podcast, so it'll get explained much more episode 295 is called insulin resistance and over Bolus, now these two things aren't the same thing. It's just, we set out to make a defining series about insulin resistance, and we started talking about something else, so much so that it belonged in the title, but let's just stick with insulin resistance here. I'm going to ask you to do that one, too, because it's a term I rub up against, and then I get on a soapbox, so I'm just going to let you do it.
Jennifer Smith, CDE 56:16
Sure. I mean, insulin resistance really is the body's inability to utilize insulin at a silly cellular level. At a certain amount, so you need more insulin to overcome the cell's inability to recognize and allow insulin to work. Okay, and there are many, many reasons for insulin resistance to happen. So, I mean, I don't know how much more Yeah, we can't sanative definition.
Scott Benner 56:52
Go listen to the episode, because you're gonna hear it like, if you have type two diabetes, insulin resistance is different than if you have type one diabetes. Right? It's not different. But structurally,
Jennifer Smith, CDE 57:06
it's the same reasoning. I mean, if you have insulin resistance, whether you're type one or type two, insulin resistance is there because your body is just not using insulin the right way? Quite honestly. Could you be? Could you be a lean individual and have insulin resistance? Yes, you could. So I think that's a hard one, especially in terms of defining between type one and type two. Insulin resistance is just you need more insulin to overcome your body's inability to use what it should metabolically be able to use. At a lower amount.
Scott Benner 57:41
I think you should listen to the episode because the words can be used as a crutch with bad settings. So Correct. Yeah, insulin resistance is exactly what Jenny said. But what if you're your ratio, carb ratio, right? Your one unit per 10, carbs should really be one unit per five carbs, and then your blood sugar goes up, and then you correct and your correction ratio is not right, you won't come down, the doctor sees that and goes, Oh, you're insulin resistant. You're not insulin resistant, you're not using enough insulin. So right, so anyway, there you go. episodes, yes, Episode 344 is called feeding insulin. And in my recollection, you have two minutes, I have two minutes. In my, my recollection, that is about when people have too heavy of a Basal profile. And you find yourself constantly feeding the insulin, meaning you're getting low, and you have to keep putting in food to bring it back up. So you don't want to be feeding your insulin. You want the insulin to be set at a place where it works without needing to be offset with carbohydrates.
Jennifer Smith, CDE 58:44
Correct. And you could also feed Bolus insulin. I mean, the first idea is evaluate basil. Absolutely. Especially if you are without insulin on board and you're constantly nibbling to keep your blood sugar up. That's a first analysis Basal. Absolutely. But if you're feeding yourself and snacking, without having to Bolus again, after you've Bolus for a meal, and there is insulin on board, then you're probably feeding your rapid insulin or your Bolus insulin. And that would be an analysis point
Scott Benner 59:18
don't want to feature so So Jenny, we're gonna stop here. The next time we record we're going to pick back up with 347 Bumping nudge. I've loved this. I think this is terrific. So we got through a number in we got through about half of them wasn't Yeah, it did a good job. There was a couple of times I was like, we're just getting chatty. But but but we didn't. We kept we kept it really short. I think this will end up being an episode about an hour and a half long. That will do exactly what all of those people who talked about terminology wanted. So right, excellent. All right. I'm sorry, go live your life and you know,
Jennifer Smith, CDE 59:49
that's okay. I've just got a patient I have to get run. And so anyway, I'll see you next time. Awesome. Thanks. Bye.
Scott Benner 1:00:00
are a huge thanks to Ian pen from Medtronic diabetes for sponsoring this episode of The Juicebox Podcast. Head over now to in pen today.com To get started. And while you're doing that, go download episode 712. To hear the second half of this conversation, Jenny and I pick this conversation right back up the next day, and we finish strong. Hope you're enjoying the bold beginning series. If you are gonna look for other episodes that you think you might also enjoy. Jenny Smith works at integrated diabetes.com In case you want to hire her, and I'm gonna leave you a little bit of information there for the music, about how you can find out more about the podcast, subscribe, and other such things. Alright, some quick stuff you'll want to know. The private Facebook group now has 26,000 people in it Juicebox Podcast type one diabetes, people using insulin, you can hang out, watch what they're saying talk, ask questions, pick brains, or just lurk whatever you need. It's there. Juicebox Podcast type one diabetes, including lists like the bowl beginning series, defining diabetes, the diabetes protip episodes, diabetes variables, all listed in the feature section of the Facebook page Juicebox Podcast, type one diabetes, it's a private group, so you'll have to answer just a few questions so that we know you're a real person. Everything else you need to know about the podcast can be found at juicebox podcast.com or diabetes protip.com. If you're looking for a great endocrinologist, we have a list at juicebox Doc's dot com. It's curated by the listeners, doctors who are down with how people who listen to the podcast they care their type one. You want that part to be easy to write juicebox docs.com completely free. Everything is free by the way, find me on Instagram, find me on Facebook, find me somewhere. If you're enjoying the show, please leave a beautiful rating and review in whatever app you're listening in. Like five stars. This is amazing. And then give a really great description. So the next person who sees your review will know that it's worth listening to. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast and don't forget that episode 712 The second half of this episode is available right now in your podcast player or at juicebox podcast.com.
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4. What does CGM stand for?
5. What is the purpose of a CGM?
6. How often should you check your blood sugar with a CGM?
7. What can a CGM help prevent?
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#710 Joanne Milo Wants Her Data
From Joanne:
Comment submissions are closed next Thursday (July 7th) so DO NOT WAIT to show your support.
Instructions:
Tap on link: tinyurl.com/ct6n22ft
Fill in the comment box with your message
Select Option: Device Industry C0012
Enter your email
Tell about yourself: choose either Individual or Anonymous
Check the box that you have read/understood
Tap the GREEN Submit button
THAT'S IT! All in under 2 minutes!
Do you like continuous access to your CGM BG data so that your DIY Loop WORKS?! Do you know that we might lose that access with Dexcom G7 and Abbott Libre3 has never allowed access?
I NEED YOU TO ACT ... IT MATTERS!
Please join me in a letter-writing campaign to fill their inbox with our comments and concerns! NOW!
Suggested text:
"I live with insulin-requiring diabetes, an incurable chronic disease requiring continuous monitoring of blood glucose values and administration of insulin. It is imperative that access to my own devices remains possible. The ability to receive glucose values from my continuous glucose monitor and the ability to command my insulin pump to deliver insulin are already permitted and expected of me. In fact, if I don't do these, I will die. So please do not let medical device manufacturers use cybersecurity as a pretense to prevent me from accessing my own devices."
When you put your name (or even if you post anonymously) consider including ‘pwd’ or ‘t1d’ or however you identify yourself as someone with diabetes, I.e. ‘Sally Smith, T1D’ so that they know our community has a voice
You can see the comments that have already been submitted and approved: https://www.regulations.gov/docket/FDA-2021-D-1158/comments.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hey everybody, this is Scott and this is episode 710 of the Juicebox Podcast. This episode was not planned, so I'm squeezing it in on a day where you don't usually get an episode. What you're about to hear is a quick little 30 minute conversation with a lady named Joanne Milo. Now you may know Joanne and you may not. But Joanne founded the Facebook group called loop and learn, as well as being a longtime type one and a longtime type one advocate. Joanne is here to talk about a notice that's been posted by the FDA. And it is open right now for public commenting. Actually, it's open until the seventh of July 2022 at 11:59pm Eastern Daylight Time. That's the last chance you have to make your voice heard. In short, this is about removing CGM from this document so that people living with diabetes don't lose access to their data. Joanne is going to spend a little bit of time explaining why she thinks this is so important. I'm going to tell you at the outset that I believe it's very important that I'm adding my name to the document and giving my reasons. If after listening to this quick conversation, you still need help putting into words why it's important for you. Joanne has written a sample letter that will be in the show notes of your podcast player and at juicebox podcast.com. But I'm quite certain that after the conversation, you'll be able to form your own thoughts and opinions. If you'd like to share those opinions with the FDA. There's also a link in the show notes, a link at juicebox podcast.com. And a link at the private and public Facebook pages where you can do that. There is no time. This needs to be done in the next couple of days. So if you are so moved, please get it completed before the seventh of July 11:59pm Eastern. This will be in my post online but they are Joanne's words. She says we want the FDA to listen to us. If our access to our CGM data is blocked. Innovation dies, I hope you're able to take the next 30 minutes to listen to the conversation that Joanne and I had to really absorb what we're talking about, and hopefully make your voice heard. The call to action here is to get the FDA to not consider CGM as part of this language. Is that Is that correct?
Joanne Milo 2:25
That's correct. They seem to be first of all, can you hear me? Okay, I'm using a headset now. Sounds terrific. Issue is an error clouding it under cybersecurity, that that the CGM companies do not have to release our access to our data, real time on our own devices. And but they can sell it to third parties. They can license it. And it's our data. And they don't have a right to block us. And I have the the laws that say that they can't. It's been enacted. It's it's called the 21st century cures, I think can't do what they're doing. But if they don't hear from us, they can do anything they want.
Scott Benner 3:07
How much of this do you think is just the FDA not knowing what they're doing and just throwing in every device that somebody could think of in a meeting to a pot and saying, Well, this stuff seems like it fits under this heading.
Joanne Milo 3:21
I think there's a tiny bit of that. I think they don't feel very comfortable in what they're doing. But they're also listening to the CGM manufacturers, we've had meetings. We have a small working group, and we've met with the director of diabetes devices with the FDA. We've met with two or three times with Dexcom on Jake leech, and Andy Bello. And we've asked both of them, will you be restricting access to our data of the g7? Dexcom? Just won't answer that. And it would be so easy to say no, we will not block your access. But they don't say that. And the FDA says we're not planning any legislation, which doesn't say they're not going to do this. And to say that it's cybersecurity is really not the issue is our data. It's our diabetes, it's our lives. And if you cut off our access, you also cut off innovation. The DIY community is what pushes development of new products. And if if we don't tell them what we need, and we don't go ahead and say this is what it is. There's very little effort that they're going to make because it just cost them more money on development. We do a lot of the upfront work and they need to listen and appreciate. I have heard Dr. Trang lie say that she does appreciate this community. We just need to make sure the access continues. And while the FDA says they listen to the community We haven't been sitting very much very loud. Right? Now we need to.
Scott Benner 5:05
So let's give people some context, because it's easy to say, if this happens loop won't work anymore. But, you know, I point out all the time. I mean, how many times is looping downloaded? Right? It's, I mean, it's amazing. But what are we talking about 20,000 times something like that?
Joanne Milo 5:24
Yes. In terms of the actual end users, right? Yeah, it's much less than the DIY community. And with more options with commercial systems, it probably will be less over time. But also, when you use a commercial system, you are also giving them access to your data and their partners, you know, the, the terms and conditions that we all just check off. But what that says is they have free rein to use their use the RS, our information, our data with their partners, whoever their partners choose to be, what if their insurance agency, what who do we don't know where it goes? We can't control that. But we can at least say give us our data.
Scott Benner 6:16
Yeah, join. I asked, because I'm trying to put myself in the position of I'm trying to say to myself, let's say I'm at the FDA, and I get 100 or 200, or 500 letters from people after people hear this? And they tell me, No, you can't do this. Here's why. And they give you a good solid reason. How hard is it going to be for me not understanding the world diabetes completely look up and say, Well, how many people have type one diabetes? And what are we getting 500 letters, because that's going to look like nothing. And and that's why I want to have the conversation with you. And while I'm happy to chime in about it. And so let me just say it for anybody that's listening. My daughter has had type one diabetes, and she has to she is 18 in a month. And on our way to college, we have been using a do it yourself algorithm called loop for maybe three years now. In that time, my daughter has suffered minimal, if not any dangerous lows. While her a one C has been better than most people walking around with a functioning pancreas. Her life is easier, it's better, it's healthier, in ways that I could go on for about for an hour in ways that people who don't understand diabetes don't even know exist, it helps her immensely. If you take her access away from that, you are going to raise her agency a point probably, you're going to make sure that her after meal spikes are now 200, not 140, you're going to make sure that she has more lows, you're going to take away flexibility. And I know there are retail systems, and I've used them, and I've seen them, and they are terrific. And for the vast majority of people living with diabetes, they're going to be an amazing improvement. But that doesn't mean just like Joanne said earlier that we shouldn't be pushing the envelope and we shouldn't be changing. And we shouldn't be changing how people work on these things. diabetes innovation in the past and in the recent past has gone so slowly that it was almost non existent. And then a small group of people pushed right with we're not waiting, and then it got faster. And that benefited companies that make CGM products. And now we have these retail systems. On the pod five we have Medtronic version, we have tandems version, and they're absolutely terrific. But there's going to be to Joanne's point, no reason for them to try harder if nobody's pushing them, and they're not going to push each other, and the FDA is not going to push them. And what I'm going to tell you right now that sets loop apart from every retail system I've seen so far is a user defined target blood sugar, and a more aggressive reaction to a rising blood sugar. Those are the two things that in my heart, make loop on another level. You absolutely agree. Yes. Right. So, so really think about what you're, if you're listening from the FDA right now, or from these companies or anything, what you're doing is going to take and raise people's agencies. It just is and I know you're doing a terrific job. But you got to keep doing that job, you got to go back to the FDA and say, hey, look, we made our algorithm we targeted 112 and a half, we need to be able to make this thing a target of 8090 100 We have to let people decide which is really what we're talking about right now is, you know, this thing exists in the world. The companies didn't make it. The the government didn't make it right. People made it people got together. I mean, think of how amazing that is. People got together wrote this algorithm. And it's amazing. Then they made it free. They didn't try to make money off of it. And they they keep it up. They they continue to make it better. It's really one of the more beautiful things I've ever seen in my life. And now we're seeing Hang? Well, we're going to restrict the data that comes from the CGM. And so this loop just won't work anymore. It'll it'll be functionalists. Without that access, and I agree with you. I don't see how this is a cybersecurity issue. And even if it is, I'm using it on my own. It's do it yourself. I've decided I bought a car, I put new wheels on it. That's on me. I put a new muffler on it. That's what I made. It's nobody's fault for didn't do it. I did it. Right. And so if I want to take this risk for my daughter, or if adults want to take this risk for their children, first of all, I'm going to tell you, it ain't much of a risk, because that thing works beautifully. But But if I want to do that, I that's got to be what America is really. i That's my decision. Right? And so, I don't know, but talk more about I'll go on forever. It get me all upset already. Joanne, we're 10 minutes into this. Okay,
Joanne Milo 10:51
well, I know. So it makes the FDA start to manage your own diabetes, or person with diabetes, I don't need their help. I don't want them as a partner in my medical care. There are more studies on the DIY loop systems and open APS than exist on any of the commercial systems. Because we've been studied so much because there was so much suspicion. There's way more data we do well, we are efficient, we create better outcomes, with no downside, no damage, no worse than any other system, because human beings run them. There are laws in place, the 21st Century Cures Act was enacted in 2016. To accelerate medical product development, and bring in new innovations and advances to patients. If you purely rely on commercials, commercial systems, going through the FDA and their process and their trials, what you get approved is four year old technology because it's taken that long for them to bring it to market. DIY is instantaneous, the pushes to updates are constant and immediate. We don't have to wait for the FDA if there's something that needs to be fixed gets fixed immediately. And there's no need to stop that. There's also the individual rights under our HIPAA access to health information, the individual's rights under HIPAA to health information that you cannot have your information restricted, right. So just it was passed in 2020.
Scott Benner 12:30
And it doesn't matter if that means on paper or digitally in the form of of live CGM data.
Joanne Milo 12:35
It's your necessary medical information. I consider my CGM and blood glucose information absolutely essential like a speedometer on a car. I gotta know how fast I'm going have brakes and accelerator?
Scott Benner 12:51
Well, I think you made a point there that I'd like to kind of tack on to, which is four or five years from now, the retail systems are going to work more like Luke does. But you lose a generation of people every time you take away options. So I'm going to tell you, I've interviewed 1000 People who have type one diabetes, and you get stuck wherever you start. So wherever you're diagnosed is the world you live in. And if you diagnose me 10 years ago, I started having outcomes based on the technology that existed then I get diagnosed 20 years ago, I have outcomes based on that. If I get diagnosed today, I have outcomes based on this. This podcast is incredibly popular because people want to take control of their health. And I'm not, you know, I'm not over here saying something crazy. I'm just telling them understand how insulin works. And one of the only ways to understand how insulin works is to watch it in real time the CGM have been they've moved us forward, you know, at a lightspeed type pace. But you're eventually going to get back to where you are now. Like, you're literally you're here already. Like instead of slowing it down and giving, you know, companies time to catch up? Why not just let things go at the pace they are? I think you're exactly right with what you said earlier, there's a small band of dedicated people who are out front blazing a trail, just like we did trying to go to the West Coast, you know, just like we did trying to go to the moon, we're out in front. These people are blazing the way they're taking the risk. They're really, I mean, they're doing you a grand favor.
Joanne Milo 14:28
Well, that's also the struggle we have, because the other mandate that the FDA has been given is to emphasize interoperability. So I can pick any CGM. I can pick any pump. It's my choice in any algorithm. It's our mandate to do interoperability and they, they are not doing that. So it's all this development. And just really, honestly, because you and I both know the folks in the innovation of DIY If we are blocked by the FDA and manufacturers, you know, these people will somehow break into this, it will take a while. And why would you throw more obstacles in our path? Isn't diabetes enough of an obstacle?
Scott Benner 15:15
Yeah, you make a good point, like, look, look at what we're really talking about here, right? Like somebody sat down one day with a CGM and their insulin pump. And they said, these two things are not designed to talk to each other. But I'm gonna make them talk to each other. And then they did. You're talking about brilliant people, these aren't five guys in the backyard trying to turn their lawnmower into a go kart. You know what I mean? And I can use the case of beer at the end for the seat, I believe. But but but these are brilliant people who love somebody who who uses insulin, or they use insulin themselves. They're trying to save their own lives. Right. And so I mean, your points just so valid. If you're the government, and you think there's a real cyber security risk here, if you really think that somebody is going to get it in their mind, to go into my daughter's CGM device and change her readings in a way that's going to hurt her. I mean, what are we talking about? How many times has that happened? Ever? You like who's doing that. But even if it happened once, you're saving 1000s 10s of 1000s of people's health. And, and these people took the risk, they said, I'm going to take this risk, they, whatever happens next is on them, it's about the most American thing I can think of, it's the least American thing I can think of is to step in and tell them, hey, you know what, you want to do better for yourself, you can't, we're gonna stop you. We're gonna save you from yourself. These people don't need to be saved, they've already done it. And they're making it better and better for more and more people.
Joanne Milo 16:51
And they're sharing it, they're making it absolutely open and available. They need to stop treating us people with diabetes as bad guys, we're not bad guys. We're just trying to live better and live through this disease. And the kids, we want the kids to have a better life.
Scott Benner 17:09
It can't be It can't be emphasized enough. That the way that things are, listen, I'm all for things being safe. I don't want anybody taking a drug or using a device that isn't safe. And I understand that slow and steady proves out. It probably is the way things are done. But at this point now, how old is loop? Right? Like it's been going on for a while now. And it's proving that moving at a faster rate is not being done by giving up safety, security or health. It's not like we're leaping forward. It's not like they put out a version of this thing. And 20 people are dead. And they go oh, well, you don't I mean, like it's it's incredibly safe. It's been validated over and over again, I I love my daughter more than anything on this planet. And I without blinking and I put her on this system, because of because of the validation that's gone through. And because of the the community that that comes right out and says, Look, here it is, this is what's happening. This is how it looks when I use this system. It's people being open and being honest, I trust what I'm seeing from people, as much as I would trust anything. You know, I don't understand it. Well, I want to understand Excuse me, what else this inspect it impacts beyond loop. Are there other things that this would stop from happening? Because I'm trying to think how do you get more people to write like, third, like, I don't know, like something like sugar pixel, for example, that little like clock that that gentleman makes that vibrates your bed and wakes you up in
Joanne Milo 18:44
class, it makes an amazing machine that also has variable alarms, because we do tend to get accustomed to the alarms and we don't hear them.
Scott Benner 18:53
That not work. If this happened,
Joanne Milo 18:55
it won't give live stream data. It will not loop file it will not get live stream data nets. Nightscout will not get live stream data if they walk it
Scott Benner 19:05
right now, a company like sugar mate could because they have they're in a business arrangement with Dexcom, for example,
Joanne Milo 19:12
correct right there on by tandem. So I'm sure they're grandfathered in to get to be a partner,
Scott Benner 19:19
right? But I'm not going to be able to call Dexcom up at Scott and say hey, I'd like to be I'd like to be a partner here so I can get my data in real time. So you're gonna have to be, you're gonna have to be part of it, you know, the people that they allow in.
Joanne Milo 19:30
Now, we've asked, we've asked Dexcom to give us a price. How much do I have to pay a year if I pay $25 a year? Can I have access? Can you give me a key? No answer
Scott Benner 19:42
here because that's what I was gonna say is it can't we just my my wife brought this up while we were talking. She's like, why can't they actually my son who doesn't have diabetes overheard the conversation. He goes, Why can't you just like, click a box or sign a waiver and say cool, let me have it anyway. I mean, listen, the easiest thing to do here And I think the best thing to do here is nothing. If if you're going to tell me that something has to happen, then there still has to be a pathway around that. I mean, this is all computers, right? Like there's if it's If This Then That like, so there's got to be a checkbox where you can say, Listen, whatever happens is on me click, I understand. I mean, we run the whole world that way, I signed a mortgage in a PDF document. I'm, I'm pretty sure I can, I can tell people I'm excited to use, you know, an algorithm on my own.
Joanne Milo 20:31
Oh, I've asked some of the the new commercial closed loop systems, could I take a test? And then you let me set my target range? Can I prove to you that I know what I'm doing. And then you let me manage my diabetes a little better with your I'll pay you for your machine. Not yet. Because they say the FDA, the FDA says them, I don't know who it is.
Scott Benner 20:55
But but I've said it to in many, many interviews, I talk about it this way. Say if you look at something called Adobe Elements, it's a, you know, it's a it's a program you get on your computer. There's a tab at the top Beginner, Intermediate. You know, you click you decide like and every tab you click on gives you more functionality. Because if you want listen, if you want to kill loop right now, that's all you have to do is you just have to make the existing algorithms user definable for target. And you have to make them user definable for how aggressively they're going to try to stop a rising blood sugar. It's all I'm sure they all do it.
Joanne Milo 21:37
Absolutely. And the FDA doesn't necessarily think well, how do I qualify people to be capable to do their own settings? And quite honestly, why would I let a lot of the endocrinologist do the settings because that's not what they do. They understand the big disease, but they don't understand the algorithms, they they are happy that then the commercial systems are out because it's not the responsibility anymore. They don't know it, and which is fine. But if we're willing to learn it, let us be,
Scott Benner 22:11
I want to reiterate, because I don't want to be blase about this. I'm gonna by name on the pod five control IQ, the thing that Medtronic has, for the vast majority of people living with diabetes, they are their Mecca, they're the most amazing thing that has ever existed on the planet, there are going to be people who have been walking around with eight 910 1112, a one sees, who are just suddenly and it's going to see magically be having an A one see in the sixes, it's going to save years off their life and health problems that it should not be, it should not be food. This it's an absolutely amazing thing. I think that every one of those companies deserves all the credit that comes along with this.
Joanne Milo 22:52
Those systems are remarkable. And I always tell my groups, diabetes, it's really hard. It is nonstop. It's unrelenting, it's dangerous. And you're 24 hours away from dead is constant. And if you want to kick back and let someone another device take over how wonderful, I'm considering the opening part five, just to really reduce the burden. But then I got a can't get the results. Why can't they let me do the results? That's all I'm asking. Yeah,
Scott Benner 23:25
I could even foresee someone hearing me say that. Or you say that go well, hey, listen, the ADA says sevens the target. So what are you worried about? And to that? I would respond, I would say, well, that's not up to you decide.
Joanne Milo 23:36
That's correct. Right. My body my data? Yeah, that's
Scott Benner 23:40
it. Just listen. For 20 years, this has been on the horizon. You know, data is not something we understood 20 years ago, how important it would be, it gets co opted along the way it keeps happening. It's going to keep happening. Like someone has to say something. I don't know that anybody listening to this, like, Listen, if you're hearing this, and you think I don't even use loop, or I don't know what sugar pixel is, or I don't care, you do care your killer eventually. And we're just asking people to reach out to the FDA, and explain to them that you need access to your data. And it can't be It can't be restricted.
Joanne Milo 24:19
And what I explained to when when the group members just said, Well, I don't use that, oh, I use a share. Why does this affect me? And that doesn't, she's happy. She's doing well. That's wonderful. But we do live in a community. We are a part of this world and we are part of the diabetes community, whether we like it or not. And if we want the next best thing that that goes after Cher, she won't get that if there's no innovation.
Scott Benner 24:45
Yeah, I don't. I would take umbrage with what you said it does impact them. They just don't know how and they can't see the pathway to it. It impacts them because at some point, when my daughter who's had diabetes since she's two is 30, and doesn't have any of the side effects that may come with type one diabetes, even at a seven a one C, people will take notice. And there'll be more and more innovation. And I'm telling you right now, it's every company is going to want, they're going to want people to be able to say, I want my blood sugar to be this, I want it to be this, I want it to be this, they're going to want it to happen safely, which of course should happen. But there's, there's not going to be an end to this. But you can slow it down by removing. By removing reasons why you would go faster with your innovation every time they go back to the FDA, it cost them money, it's not an easy process to go through the FDA, it's not a cheap process, it's not a quick process, nobody's excited to go through an FDA filing, they're just not. But if you put them in a position where they have to, well, then they have to. And if you put them in a position where they don't have to, then you're living in a world where my daughter was diagnosed, and it took four years for a meter to come out. That was slightly better than the meter at replaced. And and still was nowhere near accurate. That's the That's what happens when you block innovation, when you block innovation, that listen. I'm a, I'm an American, I'm a capitalist, I think people should get paid for what they do. I'm with it completely. But when somebody's making $1, and they have to spend 50 cents to make it, they're going to be less happy than if they're making $1 and have to spend 25 cents to make it and etc, etc. So if you if you have diabetes, or you use insulin, I don't care if you know what loop is, I don't care if you understand any of these words, this affects you or it will one day, one day meaning 10 years from now, when an insulin pump company hasn't put any honest effort into making the algorithm you're using better or the CGM you're using better or whatever it is you're using, like you need them to want to work for you. And I think, Joe and generally speaking, I know a lot of these people, and they're wonderful people. And I do think they want that for people. But I just think it's I think it's just it's a human thing. Like, why would I spend 50 cents to make $1 If I could spend 25 cents to make $1?
Joanne Milo 27:12
Absolutely, that's it. And in that that pie slice of most diabetics, or at least 40% of them, just don't want to deal with it, just make it work. Just give me less, I don't want to have to Bolus for foods. They exist there in the world, protect them. I think that's great. They will do better with the devices out there.
Scott Benner 27:37
And that is really everybody. Like it's statistically speaking. That's everyone, like you're really are. It's a weird situation right now. Because you're you're looking at millions of people and saying, I'm going to really focus on these 10,000 Over here, like like we're statistically insignificant.
Joanne Milo 27:58
I am so constantly filled with gratitude. Of these early innovators, they are regular people who just wanted their kids safer or wanted to be safer. And they have worked hard not getting paid, they work. They have a regular job. And then they do this in the evenings or weekends. And it's been an extraordinary effortless don't stop it.
Scott Benner 28:20
Yeah, no, no, I agree. And so if this goes through the way it's written up now and it's attached to it, then you're saying that when we get beyond Dexcom, G six, for example, like in my daughter set up, but that loop will just disappear for her in till someone comes along and puts the effort into hacking it, which I know is that sounds like a dirty word. But but it but what people are really, I mean, listen, I have hard drives on my desk that are connected to things they're not supposed to be connected to, I figured out how to do it, I technically hacked my hard drive to make it work. So if they put this blockade up, those people are going to double down, they're going to figure it out. And that's going to be it. I'd like to make it known so people can send in their letters.
Joanne Milo 29:05
Thank you very much appreciate that. But I included in your post on your on your Facebook group, they can go look at other comments that are made. See what people are saying what why they're saying this is important. It's they're very interesting posts, right?
Scott Benner 29:20
No, I wanted to record with you because I wanted to say why it's important to me. Yes, yeah. And it's it's important for clarity. It's important to me because it it keeps my daughter's a one C in a in a safe range in a in a in a quote unquote normal range. It makes her life easier. It takes away her psychological burdens, it takes away her physical burdens. It makes her life manageable, and not that the other ones won't, but they won't do it at the same level. And that's by design. Nobody can argue with that everybody has gotten together and decided that the target is going to be around 110 and that you know they're not going to be in credibly aggressive when When blood sugar has tried to go up? So you're going to see, you know, spikes? Are they better than people not understanding how to use insulin on their own by 1,000,000%? Like, if if you came to me right now and said, I have diabetes, I don't understand it, what would you do, I'd say go get an Omnipod five right now 100% Do that, I would tell 99% of people who asked me to do that, I would tell them, get a can get a tan, have control IQ, go get the Medtronic, one, go put these algorithms on yourself. They are amazing. This is not to denigrate any of these companies or any of these products, not from my perspective. I
Joanne Milo 30:36
know they're filling an amazing need. And, and they're easy. And that's what it should be for for mostly people that but you just need those extra people saying, let's figure out what else we need to figure out how to do it. That's all
Scott Benner 30:51
Yeah. And to tag on to your point from earlier, there's to make this thing is not it's not easy. It's not like I go on the App Store and touch give me an algorithm and do it yourself algorithm. It's you have to I mean, you have to become an Apple developer, you have to have a fairly expensive computer, you have to read tons of information to figure out how to do it, you have to agree and agree and agree over and over again that you know you're taking this risk on yourself. There's no ambiguity, ambiguity about it. While you're going this, there's no way you could trip and fall and by mistake, end up with a do it yourself algorithm on your insulin pump, as an insulin pump, you just it is not going to happen. You have to willfully make this happen for yourself, you are not saving anybody by blocking them. They these people are making this decision on their own. And even if they're even if they're confused, again, American all you know what I mean. So you get to do each one. So what do they do join, they go to a link, they write a letter, or there's a pre printed letter if they want, how does that work?
Joanne Milo 31:55
I included a suggested letter in the post on Juicebox Podcast, or they just write how they feel and just don't take away my access to my own blood glucose data. It can be that short. So they click on the click the link they go to there's a big box that says comments. Then it asks you whether you want to put your name down or be anonymous. And I think there's one other question, an email address. And I think they're just trying to validate people are real as they go, because they're looking at every single comment that comes in. And then you say Submit. If it's literally two minutes, you can write it up on on your computer, just copy and paste it into comments, then you'd be fine. Okay.
Scott Benner 32:44
So what I'll do is, I'll go I'll take the show notes of this episode. And I'll put your link in there and your, your boilerplate. And people can take a look at that for, you know, for for an example, and I'll have it so you just click on a link and it opens up. Exactly what Joanne's talking about. No, it's my pleasure. And it. It just I mean, at some point. I mean, just common every once in a while joining common sense has got to prevail, doesn't everyone? It just, I mean, how seriously how long has this been going on? Loop? How What's your I don't even know like what's
Joanne Milo 33:24
it started in 2014. I jumped in 2016. I started with Nightscout. In 2014. It's been going it took a leap to easier by 2018. And a lot of the effort in these support groups looping on as one the loop group is another. We're working on documentation to make sure you actually understand what you're doing and how to do it. Well, it's that's our that's our
Scott Benner 33:56
main goal. Right? So for eight years, this has been chugging along, and it's done all the things that it's done for people and it's done all the things it's done for the industry. And you know, and I just leave it alone. I mean, I guess that's my message, just like just leave it alone. Just yeah, it's nothing to do here. You know what they say? Every once in a while the best thing to do is nothing. Here we are. Here, here we are. Alright, is there anything else
Joanne Milo 34:23
you'd like to say? No, just great appreciation, Scott?
Scott Benner 34:27
Oh, of course. It really was my pleasure. If you're still with me, I hope you'll act. I'm going to read to you right now what you're going to find in the shownotes, the podcast player at juicebox podcast.com. And on both of my Facebook pages. These are Joanne's words, and the instructions that you'll need to make your voice heard with the FDA. Comment submissions are closed next Thursday July 7, so do not wait. Instructions. Tap on the link. The link will be there. Fill in the comment box with your message, select option device industry see 0012 Enter your email address where it asks for it. And it will ask you to tell about yourself. You can choose either an individual or anonymous. Then check the box that you have read and understood what you're doing. All you have to do after that is tap the green Submit button. Joanne says it takes fewer than two minutes. If you're having trouble knowing what the right, there will also be a link where you can see comments that have already been submitted and approved. That's it. I'm not telling you what to do. If you do this, I think it's wonderful if you don't, I understand. For me personally, I don't see much that's more important than access to our data, especially when we're making these kinds of huge life altering decisions with it moment by moment. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.