← Taking Control Of Your Diabetes® - The Podcast!
Taking Control Of Your Diabetes® - The Podcast!
Top 10 Things to do When You Are Diagnosed With Type 1
00:29:53
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- [00:00]
A
Foreign hello, everyone, and welcome to this edition of the Taking Control of your diabetes podcast. I am one of your hosts, Dr. Jeremy Pettis, joined as always by my good friend and colleague, Steve Edelman. Dr. Steve Edelman, in fact. And if you're just tuning in, Steve and I are both doctors. We're endocrinologists at the University of California, San Diego, where we do research, we see patients. We were both diagnosed with type 1 diabetes at the age of 15. Steve, 20 years before me and Steve started taking control of your diabetes. Now, almost exactly 30 years ago, we're actually celebrating our 30th anniversary with fundraiser coming up soon, which is going to be a raging good time, actually. So I'm excited about that. But anyways, thank you, Jerry. This podcast is a part of a two part series. We're going to do top 10 tips for people living with type 1 diabetes. That's this one that I'm going to kind of run. And then we're going to do top 10 tips for people with type 2 diabetes that Steve's going to run. So Steve and I were both tasked with coming up with 10 tips to give people, in this case type 1 diabetes. So I did all 10 of these tips and Steve has never seen them before. And likewise, I have never seen the type two things before. So what comments Steve has and vice versa are going to be the real comments as we go through this. So just to kind of set the stage, this is globally, I approach this as 10 things I wish I could kind of tell everybody with type 1 diabetes. And there's definitely a medical slant to it in terms of health and things like that, but there's some overall mental health things as well. So it's kind of a comprehensive list. So without further ado, and in no particular order, let's get to these tips. So tip number one is just to kind of level set for everybody out there living with type 1 diabetes. And it says we all get high and we all get low. So what I mean by that is this is a very difficult disease and especially hopefully you have a cgm. You're literally looking at your blood sugars all the time. You're seeing when you're, quote, unquote, failing. Your blood sugars go high, they go low. I always say you eat, your blood sugars go high, you take a rage bolus because you're pissed off, your blood sugars are high, then you go low and you have to stuff your face and you just kind of bounce all over the place. And the point of this tip is that a large part of that is type 1 diabetes. And there has to be some acceptance of that. Now I'm going to get into that. We want to control our blood sugar as best that we can, but nobody's perfect. Nobody, nobody has a completely flat blood sugar. Steve and I get high and low all the time. Steve way more than me. He's a mess. But it happens to everybody.
- [03:06]
B
Jeremy gets high all the time. I might get low.
- [03:12]
A
So any comments about this TIP?
- [03:14]
B
Yeah, I think what you're saying is people should not expect to be perfect all the time. And type 1 diabetes is hard. And even though we have CGMs and pumps that talk to them, they still give insulin in kind of a primitive way in the subcutaneous tissue. It's just unpredictable. And people can drive themselves crazy and they can drive the people around them crazy as well. So just be accepting.
- [03:41]
A
Yeah. And really the overall goal, I would say, of all of this is people want kind of good blood sugar control, whatever that is, and we don't want to work so hard. We don't want to worry about it. So tip one is about the kind of, the mental health side of this is that you're going to have some highs, you're going to have some lows, and that is okay. I always say two, the only time you have a completely flat blood sugar is when, Steve, you're dead. When you're dead and you don't want to be dead. So if you're not dead, you're going to have some bounce in your blood sugar. So that brings me to tip number two, though, is that we can't just let our blood sugars go willy nilly all the time. So goal number two is know your goals. And what I mean by that is we all kind of know, yeah, we want to keep our A1C generally less than 7. But we have very specific metrics too, for what is adequate control or ideal, ideal control for people with type 1 diabetes. And in general, we want your time and range, your time between 70 and 180 to be above 70%. And then we want to minimize the time that you're spending hypoglycemic. Now I say this because a lot of times people will know this, but I have patients that come in and they'll say, yeah, my time and range is 75%, it's 80%. But I just, you know, I need to, need to do better. And it's kind of like, well, why? You know, I think there is this pursuit of perfection sometimes and we didn't pull these numbers out of our butt. As endocrinologists, we know that if you keep your A1C less than seven, you keep your time and range above 70%, you're going to live a very long, very healthy life. And, you know, so know those goals. And I'll come to kind of what to do about that afterwards, but I think this is an important step.
- [05:21]
B
Yeah, the only thing I'll add to that, Jeremy, is when you think about it, every percent represents 15 minutes. And I've learned this from you. 70% really equates to an A1C of 7. And that's a great goal, but it's. It allows us to be out of range seven and a half hours a day. And think that sort of relates to your first tip, is that even the experts that put up these high goals realize you cannot be in range 100% of the time. I mean, you and I have had days like that when we were on our deathbed, but we came back to life.
- [05:59]
A
So, yeah. So, all right, so know your goals. That's tip number two, which brings me to tip number three, which is you gotta celebrate the wins. So if you are meeting your goals, if overall your time and Range is over 70%, your A1C is where you want it. Not necessarily your A1C is less than 7, but maybe it's going in the right direction. You've went from 10 to nine to eight. Celebrate those wins. Because guess what? We need something to celebrate. I always say with diabetes, our ultimate goal is what it's for. Nothing to happen. We want to get through the day without going high, without going low, without having problems with our eyes or whatever it might be. And that's an impossible situation to obtain. You can't achieve nothingness. So you got to celebrate when you do win. And I have some examples here, maybe it's just you nailed a bolus. You came up against a burrito you've never seen before. You guessed the carbs slightly right and you kept it lower than 180. Maybe just waking up with a good blood sugar or pulling off exercise, you didn't go high or low during exercise. You had a good eye examination. It doesn't necessarily mean no complications, but maybe if you do have complications, they're stable. I hate getting my eyes dilated. I hate it. And so I really kind of put that off and just trying to celebrate when you go in and maybe you get some good news. A no hitter we mentioned. Here's a good one. Correcting a super high blood sugar without going low, that's kind of hard to do. So maybe you were 300, you took a bunch of insulin instead of going to 50. You just came in for a smooth landing.
- [07:34]
B
Yeah. Take a frezza.
- [07:37]
A
And then, you know, I have here, I texted our friend Leslie island, who's an endocrinologist, and she said, like I said, I would celebrate the victories, specifically the small ones. Example, I perfectly bolloughs for a s' more a few weeks ago, and I felt like a boss. So stuff like that. And this sounds cheesy, but actually do it. Pat yourself on the back. Hey, I did a good job. Because people generally don't tell you that you're doing a good job. All kind of work that you're putting into your diabetes, there's times it actually goes well, celebrate it.
- [08:09]
B
Yeah. You know what? As patients, as we all are patients, we all have our doctors, it seems like we focus in on the bad things for sure. Like, what do you think about, oh, I messed up my blood sugar the other day when I forgot to bolus. And I think what you're saying is that we should focus on the good and forget the bad. But I know you love to celebrate. And is that why you're so high all the time? You celebrate every good?
- [08:36]
A
It's a different kind of high, Steve. All right, so I have this thing here that just says, I am healthy. And I gave this talk in person, I think, at the one conference years ago, and I made everybody say the words I am healthy. Because with type 1 diabetes, a lot of times people think I'm sick, I'm damaged, I'm going to die, my eyes are going to go bad, my kidneys are going to fail. Those things don't have to happen. And I think I have at the end here that people with type 1 diabetes are living longer than even people without diabetes. So saying I am healthy, that's another way of kind of celebrating, celebrating a win. You're doing the work. You're hanging in there. With type 1 diabetes, which again, sucks. Type 1 is really hard.
- [09:15]
B
Yeah. And we've spoken to many crowds and on several videos that people with Type 1 are living as long as those without. And all you need to do is take care of those basic goals. So you do get rewarded for all the hard work.
- [09:29]
A
Yeah. Steve has a big birthday coming up. I won't say how old, but it's got a zero behind it, and we're going to celebrate that, too. Type ones are living longer and longer.
- [09:39]
B
You make me. They are. They are I never thought I would make it to this age. So I hear you.
- [09:46]
A
Tip number four. Steve loves this one. Stockpile, become a hoarder. Stockpile everything. So get extra sensors, get extra insulin, get extra infusion sets, set your refills for insulin on autorefill. You can have your provider, this is a very normal thing to do, write that you use more insulin than you actually do. So say you take up to 100 units in your pump per day, because a lot of that can be wasted. You just don't want to be running out of stuff. There's nothing worse than being in the middle of something, anything, and your CGM falls out and you don't have one nearby. Well, guess what, you got to go home. Maybe you have to go to the pharmacy. That can really ruin your day.
- [10:31]
B
Call Steve. Ruin his day.
- [10:32]
A
Call Steve. That's my number one thing that I do, actually. And those are the times that I think I'm really mad about having diabetes, when I feel like something goes wrong and I don't have the stuff to triage it. Now I gotta go do whatever. So put insulin in your fridge, at home, at work, put extra sensors if you can, stockpile those as much as you can. Because we need our stuff.
- [10:58]
B
Yeah. And I think people should know that you don't have to wait to the exact month is over or 90 days over to ask for a refill. They give people a leeway. So mark in your calendar the second you're eligible. In fact, even if you called it in too early, the pharmacist will say, oh, we'll send it out in a day. And that way you have the extra amount of time, the extra pills. And I think the biggest hassle people are complaining about these days is that if their sensor goes out, like if you have three Dexcom, for example, for a month, you lose one. You're down to 20 days.
- [11:29]
A
It is annoying because you used to be able to restart them and you could milk like a sensor for a month if you wanted to. You can't really do that anymore, so you gotta call.
- [11:39]
B
Yep.
- [11:39]
A
You know when you've lost one and get those refilled because you don't want to have kind of gaps in your sensors.
- [11:46]
B
And this is a off label tip. But you know, most endocrinologists will have samples in their office of cgms. And so if you're on a libre, you can ask for one or two if you have them. Or Dexcom. And we have them in our office at ucsd.
- [12:04]
A
We do. And it's Interesting. Because we're not allowed to have medication samples at an academic university, so we don't have any pills, but we're allowed to get technology. So we have sensors. We actually have meters and things like that. So don't feel sheepish for saying, hey, do you have any extra sensors? I'm running low, or whatever it might be. Don't abuse the system, but know that that's an option, too.
- [12:25]
B
Great idea.
- [12:26]
A
Yeah. All right, so tip number five, eating low carb. And why I have this here is that in general, nobody knows how to count carbs. It's really difficult. But I know what a carb is, so I can limit them. That's a lot easier. You give me a giant bowl of rice. I have no idea how many carbs are in that. If you give me a slice of bread, I'm going to get a lot more accurate. Try to limit my carb intake. And I know you do, Steve, too. I don't have a set number in terms of carbs that I aim for for each meal, but, man, your blood sugars are going to be a lot easier if you let us wrap your burger. You avoid the fries, or at least kind of limit them.
- [13:16]
B
Small fries.
- [13:16]
A
Small fries. I have a picture of bacon and eggs here. Nothing wrong with that for breakfast. No carbs there. And I also have a big old body of Blanton's whiskey, which you and I like. Guess what? Hard alcohol, zero carbs. Good to know. Chicken, vegetables, these kinds of things. We are not low carb zealots. We like carbs, but the less carbs you eat, it's just easier to predict in terms of how much insulin you need. And your blood sugars are just going to be a little smoother, for sure.
- [13:44]
B
Yeah. That just reminds me of our donut challenge we had. Jeremy And I ate three donuts in 20 minutes, and we kept our blood sugars in range for two hours. But it took a lot of work.
- [13:55]
A
It did.
- [13:55]
B
Between running up the steps, taking a freza, pre bolusing, post bolusing. So, yeah, you're right, Jeremy. I think low ish makes so much common sense. You cannot say no carbs or extremely low carbs, because carbs are part of our life, our lifestyle.
- [14:11]
A
They're delicious. All right, so the most important thing about that donut challenge was that I beat Steve. So going on to tip number six. So tip number six is sometimes you have to say, eff it. And what do I mean by that? Well, what I mean is that sometimes your blood sugars are gonna go High. And you just have to say eff it. You know, so I have a picture here. The other day my blood sugar wasor I actually went out, I had some pizza, I had some beer, my blood sugar was 250, I said F it and I had a donut. Because you know what, sometimes you just gotta let it roll off your back. Now we don't do this all the time, but the reason I say this is because sometimes patients will say, gosh, you know, every time my blood Sugar goes above 250, is that doing damage to my eyes? And it doesn't work like that. It really is long sustained high blood sugars. So if you get these spikes, which we all do, correct your blood sugar, try to bring it down safely back into range and get on with your day. Don't hang on to that because the important part is keeping in the fight kind of.
- [15:15]
B
Yeah. And I think it's just important to remember it relates to your very first tip. Shit happens. And you gotta be able to accept that and get grow with it. And if you feel like screaming at the top of your lungs, just do it. And so it's one of these days when everyone has islet cell transplantation, you know, these rules will be worth shit.
- [15:39]
A
Well, and I have, there's two ways to say effort. There's in like real time, you didn't know what was going on, you ate a donut, your blood sugars were high. Like I said, you say eff it, you go about your business. The other one is the pre planned effort which is, hey, I'm going on vacation next week or I'm going to be away this weekend or I'm going to be at a conference eating weird food and staying up late. I know my blood sugars are going to be not ideal and I'm going to have to be okay with that. It's very difficult to say I'm going to go outside of my routine. I'm going to have fun on vacation and expect perfect blood sugars. If that happens, great. But there can just give yourself some grace that some small periods of less than ideal control is okay.
- [16:22]
B
That's much better than a surprise effort when you did everything to prevent the effort. So no, I love that idea. It's a pre planned effort.
- [16:32]
A
Yeah, we should pre plan an effort real soon. And by the way, to that point we go out to pasta dinners. I mean we do these things like we abandon these rules from time to time. We do our preplanned efforts. We probably don't sit down and say that's what we're doing. But we do and we do it together.
- [16:52]
B
And we all do our best. I mean, we sit down to a pasta dinner, we do the pre bolus, we carry our frezza with us. And sometimes we do it. And if we don't, it's not the end of the world. And it probably isn't too far over our upper limit.
- [17:05]
A
All right, tip number seven is definitely more of a medical one. So when you see your provider, don't forget about your non blood sugar issues. So what frequently happens when a type 1 comes in to see us is we. They pour over the CGM and what pump they're doing and their carb ratios and things like that. And then they walk out the door and I look at their chart and say, man, their cholesterol was actually high. Their blood pressure was high. We didn't talk about that at all because we get hyper focused on blood sugars. Super important. But make sure at every visit you're talking about your blood pressure. Know your goal. It's usually less than 130 over 80. Know what your cholesterol is, specifically your LDL. Usually want that less than 70. And guess what? Treating blood pressure and cholesterol is easy peasy. They're generic, once a day medications that are very effective, generally very well tolerated, don't have side effects. What a difference than all the work we put into our blood sugars. Right. We still gotta control our blood sugars. But if you have an A1C of 6 and your cholesterol and blood pressure are through the roof, you're screwed. You know? So don't forget these things. Sometimes people will say, well, my blood sugar's great. Like I'm gonna live forever. Not if you're ignoring these other things.
- [18:15]
B
Yeah, you know, time with your doctor is limited, so do your homework ahead of time. If your cholesterol level's under control, you don't even have to bring it up. If you have a blood pressure cuff at home, you don't have to spend any time of your very precious few moments with your doctor. But if you have issues, just like you said, Jeremy, beyond glucose control, bring it up. But the more homework you do, the more time you can focus in on your main problems with your visit.
- [18:41]
A
And then I would tell everybody to kind of put on their calendar. Sometimes people will say, every January is. I know that I need to get my eyes done and get them dilated. I just said how I hate doing that. At least every year. Sometimes we'll do every two years. If people have ideal control, no issues. Get your blood work done at least every year, it'll have your cholesterol on it and then your blood pressure every time you go in. So just kind of have this maintenance program. And Steve, you've done these great diabetes warranty programs. And guess what? If you do it, we just said that people are living longer with type 1 diabetes. And a big reason is because of this, that you're going in and because you have diabetes, but they catch your cholesterol earlier than they might have, or your blood pressure, or you're on top of your diet or you're exercising more than you otherwise would have. So take care of your blood sugars, but remember this other stuff too.
- [19:34]
B
Yeah. I'd get a home blood pressure cuff. When you go into the doctor, you're running, you're late. The doctor's ex wife is the one that collects your copay. Your blood pressure's through the roof. We want multiple values at home. And if it's always normal, you can spread space out the number of times you do it.
- [19:52]
A
All right, tip number eight. So it says, but what about my blood sugars, Jeremy? So we haven't really given any specific tips to blood sugars. So this one is kind of some rapid fire blood sugar tips for people with type 1 diabetes. Number one, no brainer, use a continuous glucose monitor in 20, 25. Yeah. You still have to say this though, right? Okay. That there's still a number of people that aren't using it. But to me, this is like just a must for Everybody. With type 1 diabetes, you can get these generally covered. But I do say and set the alarms right. So talk about that, Steve. That's your thing.
- [20:26]
B
Yeah. Most doctors will never even bring up where you should set your alerts and alarms. Everyone should set their low alert at 80, maybe 70 if you're really sensitive. However, the upper alert is extremely important. It tells you to hey, my blood sugar is above the range that I want it to be. I'm gonna look at that number, look at the trend arrow, and decide if you want to do a correct or not. So when you see a patient with high blood sugars across the board on their download, they're about averaging 200, 220 all day long. Guess what? Their upper alert is set at 2:50. And if you want to see me lose my shit in clinic, come in there and set your alert at 250. And I understand there's alarm fatigue, so you have to do a lot of things. You can set your upper Alert a little lower during the day, a second time frame at night so you don't get bugged. Pick a sound that doesn't bug you, like the factory sound. There are some nicer sounds that you can do, but people don't realize this will help you lower your time and range. 5 to 10%.
- [21:32]
A
Increase your time and range. More time and range. So, yeah, I mean, I always say that a CGM alarm should be a call to action. So when it goes off, you gotta do something. If you find that it's going off and you're ignoring it, then it's not at the right level. So, you know, typically we start at 180, but then you can tighten it up down to 170, 160 if you want. And you got to find that balance between my control is getting better and I'm not losing my mind with all these alerts going off all the time.
- [21:59]
B
What's your set at?
- [22:00]
A
So right now mine's at actually 180, because usually I find that my system right now is actually doing a pretty good job correcting me up until then.
- [22:09]
B
Got it.
- [22:10]
A
And if I take a bolus a little bit earlier, sometimes I go low. So anyways, that's a great point.
- [22:16]
B
So it depends what system you're on.
- [22:19]
A
Which is point number two of tip eight, which is get on a hybrid closed loop system. We have so many of these pumps now. We've done multiple podcasts on it still. There's people that are resistant to going on these systems, but they're getting better and better. I didn't used to push pumps on people, but now it's kind of the first thing I do. If somebody's not on a pump, you gotta get on one of these systems. If you are on one of the systems, educate yourself on the different options because they're constantly changing, evolving. What Systems, sorry, what CGMs they work with. That's been a huge advance that you're not locked into one particular CGM or the other providers have a very difficult time keeping up to date with this. So educate yourself on the different systems. We have all kinds of resources on this podcast on our website, et cetera.
- [23:09]
B
Yeah, that's the bottom line. And you know, I'm like you, Jeremy. I used to say, oh, pump mdi, just take your pick. But I have to say there's no way your insulin pen can communicate with your CGM device. However, let me just say for all the MDI users out there, you can do extremely well. And it just having a pump may not fit in your lifestyle and you shouldn't feel guilty or bad about it.
- [23:32]
A
Totally Good point, Steve. If you're doing really well on shots, then if it's not broke, don't fix it it. But if you're still having highs, lows, it's something to consider. All right, point number three, within tip eight, pre bolus, we'll be done in about four hours. Jeremy, pre bolus for every meal and snack. So we usually say 10, 20 minutes before you eat. Insulin works just really, really slow, so you have to tell your system that you're eating. Essentially what I do, honestly, is I enter 30 grams of carbs 20 minutes before I eat. Eat any meal, and I just start there because I know I'm going to eat at least that much. I get some insulin into my system. It's kind of a foolproof plan. Anybody can do that. And then when I sit down to eat, if I eat more than that, then I'll kind of enter it as I go. And I find that that system works really well to kind of help avoid the post meal spikes that we all get.
- [24:26]
B
Yeah, I put my insulin to carb ratio at 1 to 10. I just picked that number because I know how much insulin I need for meals that I've been eating for 30 years. So if, say I need five units, I put in 50 grams. So I do it in reverse, and that works pretty well for me. Everyone's got their own method.
- [24:45]
A
Yeah. And then it just says, consider adding Afrezza to your regimen. So we've talked a lot about Afrezza too. It's inhaled insulin. It works very quickly. You can add it to your pump, you can use it with ndi. There's lots of different ways to skin a cat with Afrezza, and it's a nice tool to have.
- [25:02]
B
That's 8.5.
- [25:03]
A
Yeah. Yeah, it is. Thank you, Steve. So that was tip number eight. In conclusion. Now, tip number nine. This is an important one for Steve and I is get a diabuddy. So what do I mean by that? Well, that's somebody else that has type 1 diabetes. So I'm lucky enough to have Steve, a good friend, who's a good friend, but also somebody that you can just call and bitch to if you want to. There's a real camaraderie around having diabetes, so having that person can be so helpful. And I love my kids, my partner, but there's something special about somebody else that have type 1 diabetes. Now, you might not know, somebody online can be a substitute meeting people. Our One conference that we just had, we had literally 700 people with type 1 diabetes in person. We do this every August. All kinds of diabetes buddies were kind of made that conference. And these people carry these relationships honestly through the rest of their lives. And it can be really, really powerful.
- [26:07]
B
Yeah, just I would say search out for groups in your area. Call the Breakthrough T1D office. They may have several groups, online groups, and there's even dating systems for people with diabetes.
- [26:20]
A
Yeah. And Steve's phone number is 619-555-867-5309. And the last tip, Steve, is tip number 10. And it is. It says, you are going to be okay. So it says Here again, type 1 life expectancy is now longer than people without diabetes. So this disease really is a struggle. I always say that. I think it's unique in terms of what we ask patients to do. You know, look at your blood sugar, make these calculations, Take insulin. But if you don't get the dose right, guess what? You can go high, that causes problems. You can go low, that makes you feel like crap. And you got to do that over and over and over and over again. We don't do that with any other medical condition that I can think of. So it's no surprise that people struggle getting their blood sugars in control, or even if they are in control. I always say people in the A1C of 6.5, they're not having a good time. They still have diabetes. They're doing a lot of work to get there. So this is just one of saying kind of again, to give yourself some grace. It's going to be okay if you're doing the work. People are living long, healthy lives and doing whatever they want.
- [27:29]
B
Well said, Jeremy. You know, there's never been a better time to have type 1. The technology is getting better. Other therapies for type 1 are going to be available. So I think things are looking up, and it's certainly different than when I got diabetes and I had bamboo, insulin syringes and peeing on a stick.
- [27:49]
A
You slid off the tail of your brontosaurus into your.
- [27:53]
B
Yeah, I mean, things are. You know, having Type one is not a death sentence anymore.
- [27:58]
A
So you love when I do this. But let's recap. Okay, so let's go through my top 10. Number one, we all get high, we all get low. Number two, set your goals. Know your blood sugar goals. Number three, celebrate your victories. Four, become a hoarder. Stash your stuff everywhere. Number five, eat low. Carbish. Number six, sometimes you have to say eff it. Number seven, don't forget about other stuff, health maintenance, blood pressure, cholesterol, eyes, kidneys. Number eight, my laundry list of blood sugar tips where I hit about 10 things in number eight. Number nine is get a Steve, get a Diabetti. And number 10, you're going to be okay. And I'll end with this very famous quote. Type 1 diabetes is the best thing that ever happened to me said by me just now. And also I've said it before but it's a very good quote. So with that, I hope you guys enjoyed our top 10. We are going to turn the page and record a type 2 one now. But this has been great. Thanks for doing this with me, Steve. I do want to say it does matter when you guys hit like or subscribe or follow us or leave comments. This is for better or worse, the currency in this day and age in terms of getting sponsorship, etc. We put this all out for free. So we just hope if you like it that you let us know.
- [29:15]
B
Jeremy, you're the best diabuddy anybody could ever have.
- [29:18]
A
Thanks, buddy.
- [29:19]
B
I love you.
- [29:19]
A
You're my second best, I would say, but yeah, just kidding. Love you, buddy. Well, thanks for listening everybody and you'll hear us on the next.
- [29:37]
B
Sam.