#1874 Medical Gaslighting and Mitochondrial Diabetes

Sandy spent years misdiagnosed with Type 2 diabetes and battling medical gaslighting. Discover how the RADIANT study and AI uncovered her true diagnosis: Maternally Inherited Diabetes and Deafness.

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Key Takeaways

• Mitochondrial Disease Can Mimic Type 1 Diabetes: Conditions like Maternally Inherited Diabetes and Deafness (MIDD) impair the pancreas's energy machinery, stopping insulin production. It is highly rare and frequently misdiagnosed as Type 1 or Type 2 diabetes.
• Metformin Risks with Mitochondrial Issues: Taking Metformin when you have mitochondrial disease can lead to life-threatening lactic acidosis. Sandy's misdiagnosis almost cost her life due to this exact contraindication.
• Advocate for Your Own Health: Medical gaslighting is real, and doctors may lack the time or specialized knowledge to crack complex cases. Don't be afraid to research your symptoms, ask for second opinions, and bring your findings to appointments.
• Leverage AI for Research: Tools like ChatGPT can connect disparate symptoms (e.g., short stature, hearing loss, and diabetes) that a standard 15-minute doctor visit might miss, helping you find rare clinical possibilities to discuss with specialists.
• The RADIANT Study: For individuals with rare and atypical forms of diabetes that don't fit the classic Type 1 or Type 2 molds, the Rare and Atypical Diabetes Network (RADIANT) offers specialized testing and whole-genome sequencing to uncover the root cause.

Resources Mentioned

• Eversense 365: eversensecgm.com/juicebox
• Tandem Mobi System: tandemdiabetes.com/juicebox
• US Med: usmed.com/juicebox or call (888) 721-1514
• Wrong Way Recording: wrongwayrecording.com
• Juice Box Podcast Facebook Group: Juice Box Podcast, Type 1 Diabetes
• RADIANT Study (Rare and Atypical Diabetes Network): atypicaldiabetesnetwork.org

FULL EPISODE TRANSCRIPT

Introduction & Sponsors

Scott Benner (0:00)

Welcome back, friends, to another episode of the Juice Box podcast.

Sandy (0:16)

My name is Sandy. I'm 51 years old, and my diabetes is complicated.

Scott Benner (0:24)

I created the diabetes variable series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise, and those other variables that impact your day more than you might think. Jenny Smith and I are gonna get straight to the point with practical advice that you can trust. So check out the diabetes variable series in your podcast player or at juiceboxpodcast.com.

If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group, Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.

Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.

I'm having an on body vibe alert. This episode of the Juice Box podcast is sponsored by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox.

The podcast is also sponsored today by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.

Today's episode is also sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514. You can get your diabetes testing supplies the same way we do from US Med.

A Complicated Misdiagnosis

Sandy (2:29)

My name is Sandy. I'm 51 years old, and my diabetes is complicated.

Scott Benner (2:35)

Really, Sandy. How long have you had diabetes?

Sandy (2:37)

I was diagnosed with diabetes November 2020.

Scott Benner (2:41)

Okay. So we're coming up on your sixth year. Is that right?

Sandy (2:45)

Yeah. Yeah. Or past yeah.

Scott Benner (2:47)

Yeah. Beginning. And kind of diabetes did they, give you?

Sandy (2:51)

So I was diagnosed with type two diabetes even though I presented as type one. I started losing weight. I was extremely thirsty, and I was losing my eyesight. And I finally decided to go get blood work, kind of in the back of my mind knowing possibly what was going on.

Scott Benner (3:10)

Mhmm.

Sandy (3:10)

And I go get blood work, and I'm at work. And I get the results through Quest Diagnostics, and my a one c was over 13, and my glucose was over 300.

Scott Benner (3:22)

Okay.

Sandy (3:23)

And I knew right then and there, I was in trouble, but I didn't I haven't seen the doctor yet.

Scott Benner (3:30)

Hold on a second. Is there other autoimmune in your family at all?

Sandy (3:34)

Yes. So I have Hashimoto's, and my son has Crohn's. And my son was diagnosed with Crohn's six months before I was diagnosed with diabetes.

Scott Benner (3:43)

Okay. How old is he now?

Sandy (3:44)

He's 20.

Scott Benner (3:45)

Do you have other kids?

Sandy (3:46)

Turned 20. And I have a daughter who's 22. She doesn't have any autoimmune issues that we know of right now. Hopefully not.

Scott Benner (3:54)

Oh, alright. So you I mean, give me a little bit of how you were feeling leading up to getting this blood work and and your testing.

Sandy (4:02)

I was feeling really bad. I wasn't feeling good, and I couldn't quite put my finger on it. But, you know, any problems I've ever had, I've always blamed my thyroid. Oh, it's my thyroid because I've never been able to get it under control. And I would say, oh, it's my thyroid. Oh, it's this. But I knew that something more serious was going on with my symptoms, so I decided to go ahead and get everything checked out. And then I got the results back, and it blew me away.

Thyroid Struggles & Medical Gaslighting

Scott Benner (4:27)

Okay. Well, what did you mean that you can't get your thyroid under control? For how long have you had hypothyroidism?

Sandy (4:33)

I was diagnosed in my early twenties, because I was super skinny. And I went for a regular exam, and the doctor told me that my thyroid looked a little enlarged, but it could be because I was underweight. But she wanted me to get it checked out, and I had blood work done, and it came back, with antibodies for thyroid for Hashimoto's. Yeah. And I went and got an ultrasound, and I had goiters on my thyroid, So I was put on medication.

And for years, my thyroid was pretty under control. But lately, I think since I've been diagnosed with diabetes, I can't get it under control because I will swing between hyper and hypo every six to eight months.

Scott Benner (5:12)

Oh, what is the doctor telling you about the the constant swing? Do do they look them

Sandy (5:17)

for nothing? I can't get an answer. We just constantly adjust my medication. I just started a new medication called Unithroid. So I've been on that about six weeks, so I'm hoping that will hopefully calm things down. But I've tried all sorts of medications over the years, and sometimes something will work temporarily, and then it won't work. So I don't I don't know. I think it's connected to my diabetes or actually why I have diabetes, which I guess we'll get into, but I don't have that answer yet.

Scott Benner (5:46)

Why did they change the medic what was the thinking behind the medication change?

Sandy (5:49)

Absorption, additives that are in medication sometimes. I'm told sometimes certain people can't absorb medications because of the additives if your body's having a problem with those additives.

Scott Benner (6:00)

Okay. They didn't give you tyrosine? They gave you what?

Sandy (6:03)

I was on tyrosine. So but that's that's for t three.

Scott Benner (6:07)

No. Tyrosine's t four.

Sandy (6:09)

That's right. Tirosyn's t four. I'm thinking of Cytoml. Cytoml. You're correct.

Scott Benner (6:12)

T three.

Sandy (6:12)

Okay. I was on Tirosyn for a while, and that worked for a while. And I've been on that twice. So it worked, didn't work because I went on it because, what, there's only four ingredients in it?

Scott Benner (6:21)

Yeah. Tirosyn's pretty clean, honestly. Yeah. Yeah.

Sandy (6:24)

And so I went on Tirosine a lot for a while, then went off of Tirosine. I've been on Tirosine. I've been on Levoxyl. Nothing seems to quite do it. But I'm hoping this new medication, Unithroid, I've never heard of it. Crossing my fingers that it works.

Scott Benner (6:37)

I hope so too. I'd I'd I'd never heard of it either. I talk to people about thyroid stuff a lot. And Yeah. Yeah. Nobody's brought that up yet. My kids everybody in my, my wife uses my wife uses Synthroid. She can't use the generic. If you give my wife the generic Synthroid, she she crashes pretty hard.

Sandy (6:54)

See, that's what's been happening to me.

Scott Benner (6:56)

Yeah. And Arden uses Tyrosine and Cytomil?

Sandy (7:01)

I've done that.

Scott Benner (7:02)

Cole does Tyrosine and, oh god, the the pig one. Why can't I think of it?

Sandy (7:10)

Oh, well, there's nature thyroid armor.

Scott Benner (7:13)

Armor. He does armor.

Sandy (7:14)

See, I'd tried that, and I had a really bad reaction to it.

Scott Benner (7:17)

Your heart race?

Sandy (7:18)

Heart race, sweating, dizzy, nausea. Yeah. Tried it twice and yeah.

Scott Benner (7:24)

Yeah. He takes a very small amount. If he takes too much, it messes him up too. Yeah. His heart will start racing and stuff. My wife can't take the t three. It makes her heart race.

Sandy (7:33)

I've only been on the t three temporarily off and on, but not recently. Only when my t three like, if I'm not converting to t three.

Scott Benner (7:41)

So who's managing this for you? Do you have an endo managing this, or is your GP doing it?

Sandy (7:45)

My I have an endo. Yes.

Scott Benner (7:47)

And they're managing the thyroid?

Sandy (7:48)

Yes.

Scott Benner (7:49)

Okay. Well, let's hope that what they're doing for you now, balances things out a little bit. Because you're swinging hyper to hypo? Like, you're all over the place?

Sandy (7:56)

I'm all over the place. I will go, like, really low. Like, I recently was hyper where I was having tachycardia.

Scott Benner (8:02)

Yeah.

Sandy (8:02)

And I've been up to hypo where my TSH is, like, over 16.

Scott Benner (8:06)

Have they wondered if you have Graves'?

Sandy (8:09)

You know, I haven't been tested for Graves', and I've researched Graves'. And I know that you can have Graves' and Hashimoto's, but I tend to go more towards Hashimoto's. But that would be another thing for me to look into once I get other things settled, so it's possible.

Scott Benner (8:23)

Well, before we move on, I will tell you that our overlords think that because you've had thyroid issues for thirty years, you should be looking into whether your dose is too high or too low, if it's an absorption issue, if you have Graves, or if something called toxic nodules might exist.

Sandy (8:39)

Oh, let me write that down. Toxic nodules.

Scott Benner (8:42)

You want me to click on it?

Sandy (8:43)

Know about that.

Scott Benner (8:43)

I'll make clicky on it and see what it says. Okay. Oh, let's see. Hashimoto's thyroiditis, also known as chronic lymphocytic thyroiditis or autoimmune thyroiditis, is an autoimmune disorder that means you're developing antibodies. How many know all that? What's about the toxic nodules? Get the detoxing nodules. Alright. I'm just gonna go back to this.

Why am I even bothering with the Internet? Why don't I just ask our computer overlords and stop stop with this nonsense of, let's see. Pulling up the cleanest explanation of let's see what we can find out. Toxic nodule is a thyroid lump that starts making thyroid hormone on its own without listening to the normal control signals from the pituitary gland, which is TSH. I don't know.

It can feel like racing heart palpitations, anxiety, shakiness, heat intolerance, weight loss, trouble sleeping, more frequent bowel movements.

Sandy (9:32)

When I'm closer to hyperthyroidism. I mean, I can mention it to my to my doctor next time I'm in and see. Yeah. I guess I'd have to get an ultrasound done.

Scott Benner (9:40)

I mean, don't tell her you asked you started thinking about it while you're recording a podcast because she'll probably, like, have you committed. But anyway

Sandy (9:47)

She knows I research a lot of things because I have complicated things going on. So I'm always going in with, hey. We need to talk about this, and I read about this. So no. No. No.

Scott Benner (9:55)

No. Listen. I'm gonna tell you right now. My wife was on the cusp of needing we thought she needed an iron infusion. The doctor thought so too, but the labs didn't bear weight for the, for insurance. So my wife's been struggling, and, you know, she's trying to get the doctor to, like, you know, do it again. Doctor's like, well, we just did it. We can't really do it again. My wife did, like, five took she her blood work, threw it in a chat GPT, had it put together a one page describer for the for the doctor, threw it into the into the the notes for the doctor and said, hey. Look.

Here's the blood work I loaded in. Here's the answer I got back. And then she got an appointment on Monday.

Sandy (10:32)

Okay. I gotta Yeah. Gotta look into this stuff. Yeah.

Scott Benner (10:35)

Yeah. You listen. Sandy, the truth is, people don't wanna think. If you think for them, often, they're happy about it. So just as long as you're right, you know, if you're if you're not, then it's gonna be more of an issue.

Scott Benner (10:46)

So okay. So you go in, you get an initial type two diagnosis?

Sandy (10:51)

So the medical professional that I was with when I got that I got my blood work back, it was a nurse practitioner who I really liked. But I think this was just too like, not in her wheelhouse. She just kept telling me to be gluten free and sugar free.

Scott Benner (11:04)

That should

Sandy (11:04)

do put me on metformin and Glacobride, I think it was. Okay. And and the regular metformin, not the time you eat. So I was constantly sick, and I was only on it for a few weeks, and the glycobride was having me I was having, like, a lot of lows, like, really bad lows. Okay.

So I got in with an endocrinologist, and she's looking at me, and she's like, you're not a type two. You are a type one. And I was like, that does make more sense. I didn't present as a type two. You know, I have Hashimoto's.

So she goes ahead and does all my blood work, and I did not have any markers for type one. She goes, well, you are type two. And that hit me really hard because it didn't make sense to me because I don't know how to put this without sounding judgy or rude, so I apologize to anybody, but I didn't feel that I fit the type two profile.

Scott Benner (11:54)

Your frame, your body say you weren't carrying extra weight. You you don't think you were eating in a certain way Correct. That kind of stuff. And that's what made you think I don't think that's right. But how why does the doctor start off by going, hey. You're definitely not type two. You're type one. Then the antibody thing throws them completely off?

Sandy (12:09)

That's I mean, just because I didn't have the antibodies. They're just saying, oh, well, you're automatically type two. So I decided to be a good patient. I listened. I took all the medication.

She put me on, extended release metformin, put me on Genovia. I met with a diabetes educator who really didn't know how to talk with me. So I'm vegan. I've been vegan for thirty years. Mhmm.

I'm not this health nut vegan. So just disclaimer, I do eat Oreos and, you know, things that are not healthy, but I do try to eat as healthy as possible.

Scott Benner (12:46)

Tell me where your veganism comes from. You have trouble eating animals? What what is it? Yeah.

Sandy (12:50)

Yes. So when I in the nineties, I was in a zookeeping program where I live. I wanted to be a zookeeper, I wanted to help animals. And it just didn't make sense if I wanted to help animals, and I was also herding them. So for me, that's where it stems

Scott Benner (13:04)

from. And you kept going that direction. Yes. Did you ever become a zookeeper?

Sandy (13:08)

Yes. I was a zookeeper for quite a long time. Was my first career.

Scott Benner (13:12)

Well, no kidding. That's awesome. I was just with a friend of mine this weekend, started his life off as a zookeeper.

Sandy (13:17)

Yeah. Yeah. It's a it's a great career, but I changed things. So yeah. So I met with a diabetes educator, and we were talking about all the food. And, of course, everything I eat was not on the list. You know, tofu was not on the list. Nuts and seeds were kind of on the list, but she's telling me, well, you can't eat this and you can't eat that. And I was like, but I know I can eat these things. Like, I know like, it's okay for me to eat these things even though you're telling me I can't.

So I was like, look. I'm gonna do my own research, and I will figure this out. So I cleaned up how I ate really well because I was like, look. If I'm type two, I'm gonna act like a type two, and I'm gonna do everything in my body, everything that I can do to make sure that I reverse this.

Scott Benner (13:57)

Yeah. You you were committed to if this is the if this is what's going on, I'm gonna take a hard swing at it and see what I can make

Sandy (14:03)

And it didn't work. Okay. It didn't work. So it was working for a while, and my blood sugar would go up, and it would kinda come down. And my doctor's like, well, yeah, you're gonna spike high, but as long as it comes down, you're fine. We upped the dose of my metformin, you know, and that's all she kept telling me. My a one c I I don't remember what my a one c was. I mean, it definitely came down, but it wasn't what I wanted it to be or what I thought would be good.

Scott Benner (14:28)

Yeah.

Sandy (14:29)

So it just kept going back and forth and back and forth. So I was on metformin for a few years, and I was doing everything that I should do, listening to my doctor, doing all my research, and I just started not feeling good. I started getting high blood pressure, and I kept going to my doctor. And I said, look. I'm not feeling good.

I can't put my finger on it, though, but just something isn't right. And she ignored me, wouldn't listen to me. And my blood pressure kept going up, and she's like, well, you're almost 15. You have diabetes. What do you expect?

And I'm like, but I haven't had diabetes that long. It is somewhat under control. I'm eating really well. It doesn't make sense.

Scott Benner (15:05)

Are you in a part of the country where everybody's got diabetes? So she just thought, like, well, this is what happens to these people. Is that it?

Sandy (15:11)

I don't know. I don't know, to be honest. Okay. I've met a few, but I don't I don't have an answer for that.

Scott Benner (15:16)

But that answer from the doctor is very kind of like almost feels like she's been beaten into submission kind of thing.

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Sandy (17:39)

It's possible.

Scott Benner (17:40)

Yeah.

Lactic Acidosis & The ER

Sandy (17:42)

I mean, I don't think she knew what to say or do.

Scott Benner (17:44)

Right.

Sandy (17:44)

So I went along with that, and I just wasn't feeling good. One night, I had really bad tachycardia tachycardia. My husband took me to the ER. Everything came back normal except my TSH was really high, and they're like, oh, it must be your thyroid. So we go adjust my thyroid medication, and I'm still not doing well. So this was in April 2023.

Scott Benner (18:06)

Mhmm.

Sandy (18:07)

So I'm not feeling good. I decide to go to a cardiologist that summer. I go to a cardiologist. He does all these tests. I wear a heart monitor.

Everything comes back negative. My blood pressure is, like, scary high, and my husband's in the doctor's office with me. And he's like, you have white coat syndrome and high anxiety. I wanted to jump out of the chair at that moment, but I didn't. And I walked out, and I started crying because, again, nobody was listening to me, which I've had happened in the past in my life.

Scott Benner (18:37)

Yeah.

Sandy (18:37)

So we left trying to figure it out. I was put on metoprolol, which was working for my tachycardia, my high blood pressure, and it was working. And, again, I'm trying to be a good patient, trying to do what I'm supposed to do. December comes around, winter break starts, and I'm home alone, and I'm eating cereal for dinner. See?

Hot, the healthiest vegan. And I an hour or so later, I start having really bad stomach pains. And my family comes home, and I'm not feeling good. And I'm crying, and I'm on the bed just screaming because my stomach's really hurting. And my husband's like, we need to go to the hospital. And I did not wanna go because I knew if I went, I was just gonna be told again, this is nothing. There's nothing wrong with you.

Scott Benner (19:26)

Yeah.

Sandy (19:27)

He's like, I'm gonna give you an hour, and in an hour, if you're still like this, we're going. So where we live, we have a stand alone ER down the street from us. So I finally gave in, and he took me. The nurse and my husband thought it was a gallbladder issue. I mean, I had all the symptoms they said.

I was like, fine. Let's take it out. Let's do whatever needs to be done.

Scott Benner (19:47)

You're like, listen. Whatever. Alright? Yeah. Yeah. Let's start throwing I'm in the trash and see what happens.

Sandy (19:53)

I was like, willing. Whatever. Just do it. I didn't care at that point. So they come back and tell me that I had a small bowel obstruction.

Scott Benner (20:01)

Okay.

Sandy (20:02)

So I had to be taken by ambulance to the, as I call, the bigger hospital down the street, which was, like, a few miles down. So I'm admitted to the hospital for four days. They do medieval torture to me. Everything fixes itself. They couldn't figure out why I had a small bowel obstruction, and I was sent home.

Scott Benner (20:21)

What what was the torture? Did they put you in the stocks? What did they do?

Scott Benner (20:26)

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Sandy (21:32)

I had a tube down my nose into my stomach. And it was horrible. Okay. I don't wish that upon my worst enemy. It was it was really bad.

Scott Benner (21:40)

Okay.

Sandy (21:41)

And I was not on metformin or any of my medications in the hospital. My husband said that they were giving me insulin. I don't remember everything, but I do remember them pricking my finger. And I was checking my CGM as they were pricking my finger, you know, to compare and this and that just for fun. And we left the hospital, and I get home and, you know, I'm afraid to eat.

I start taking my medication. Things are going okay for a few days. It was winter break. Also, I'm a teacher, so I was on winter break. So I was taking that time to rest and get better.

Scott Benner (22:13)

Mhmm.

Sandy (22:14)

And like I said, I start taking the metformin and Genovia, and I start getting sick again. I can't keep anything down. I can't keep anything in. I'm just I'm feeling really bad. I called the hospital.

I need to see a gastro. They would not let me see anybody. I could not get in to see anybody. Every day, was crying. I could barely get to work when school was back in session. I wasn't working every day or half days, and every day, would call, And they're like, we can't get you in. We didn't have a referral when you were admitted, so we can't get you in. Finally, I get a call from some guy who said, hey. This was, like, almost mid January. He goes, I can get you in beginning of February to see a gastro doctor.

I was like, great. Let me take it. So I just kept saying to myself, if I can make it to February, I'm gonna be fine. They'll figure out what's going on. Martin Luther King weekend comes.

I'm still not doing good. I wake my husband up in the morning, and I said, look. I need you to take me back to the ER. I need fluids and Zofran. I can't keep anything down. I'm very dehydrated.

Scott Benner (23:14)

Yeah. Things are getting backwards. Like, it it's it's getting worse.

Sandy (23:18)

It's getting worse.

Scott Benner (23:19)

Yeah.

Sandy (23:19)

It's getting worse. So and, of course, I'm taking my medication like I'm supposed to be taking my medication. Okay? So he takes me back to the ER. We spend all day in the ER.

They are throwing every single test at me. It comes back normal. CT scans, ultrasounds, blood tests. The only thing that came back positive or a problem was my lactic acid. It kept rising and rising and rising.

And they were giving me bags of fluids constantly that I had a toilet commode next to my bed because I was constantly peeing. I had, like, four or five bags of fluid over a few hours because, like, this is what we need to give you to bring your arctic acid down. Right. And they couldn't figure out what was going on. It kept going up, and I was told that the number went up to close to seven.

Scott Benner (24:04)

Okay.

Sandy (24:05)

And my husband heard the doctors in the hallway, you know, very concerned, and they come in and tell us that they're gonna have to transfer me back to the big hospital again, if we can't get this under control. And all day, my dad and my husband are on trying to figure out what's going on with me, putting everything into the deep, dark web. And they come up with lactic acidosis from metformin. So my husband tells the doctor, and he goes, oh my gosh. You're on metformin?

And we're like, yeah. It's, like, right there in my chart. He go and my husband's like, she has lactic acidosis. So I took the metformin in the morning, but I didn't take it in the evening. And because it was extended release, it started wearing off, and they took my lactic acid again, and it went down close to normal.

And he's like, that's what was going on. So go home. Don't take your medicine. Get in touch with your doctor. So I had lactic acidosis induced by metformin.

So I go home, and I get in touch with my endocrinologist. And I go into my endocrinologist, and I tell my endocrinologist what's going on. And she's like, okay. Well, here's a whole long list of medications you can't go on, and insulin is gonna be it. It's gonna be your safest thing.

I was like, let's do it. Let's let's do insulin. No problem.

Scott Benner (25:18)

Yeah. How long has this been going on for at this point? Months?

Sandy (25:21)

So the lactic acidosis was December 2023.

Scott Benner (25:26)

Okay.

Sandy (25:26)

And so I saw my endocrin no. The lactic sorry. Back up. The lactic acidosis was January 2023. And so by February, I was put on insulin.

Scott Benner (25:36)

From the first time you started not feeling well till this point is how long?

Sandy (25:40)

I couldn't tell you because it, like, just slowly crept up.

Scott Benner (25:43)

Okay.

Sandy (25:44)

And, I blame things on my thyroid.

Scott Benner (25:47)

You don't know how long you were blaming the wrong thing?

Sandy (25:49)

Correct.

Scott Benner (25:50)

And when you said at one point, you were in the hospital. You're not sure what they did. Were you on pain meds? Is that why you don't know? Yes. Yeah.

Sandy (25:55)

Yeah. I was on yeah. I don't even know what they gave me, but they gave me something nice.

Scott Benner (26:00)

I was gonna say, how'd you enjoy that? Was it good?

Sandy (26:02)

It was nice. I don't know. My husband knows everything that was going on. I mean, he was my rock. He was so good through it, and I don't I know I was in the hospital for four days.

I remember pieces of it. Yeah. But

Scott Benner (26:14)

yeah. I'm confused though of why through this whole process. If at some point a doctor said, hey. You definitely have type one diabetes, and said, no. You don't.

And then you did all this other stuff. Did you ever bring up did you know there used to be, like, a time where someone thought I had type one? Could there have been confusion there? Like or does that, like, get out of your mind because somebody's already

Sandy (26:34)

said no? It kinda sat there. Like, I still was mowing it over because it it still didn't make sense. I was trying to be this great diabetic and a good patient, but it still it did not sit well with me at all.

Scott Benner (26:48)

Yeah. Because, Sandy, I have to I'm not gonna call you out. I'm just wanna I wanna point out. I I just wanna point out. You said you didn't think you had type two diabetes.

No. But you're, like, head down doing what they're telling you to do, not feeling like you never, like, raised your hand and said, hey. Maybe I don't have type two diabetes. Should we look at that again?

Sandy (27:05)

So throughout my life, I've had health problems that, you know, would kinda run into gray. Nothing was ever black or white, and so I was gaslit a lot for my life. Okay. And so I was afraid that that was gonna happen. So I was like, if I I'm either gonna prove to myself that I'm a type two or I'm gonna prove to them that I'm a type one.

Scott Benner (27:25)

Or die. I'll see what I can do. Yeah. Die. That'll show them.

Damn it. Then they'll all know they were wrong.

Sandy (27:31)

Exactly. So that's I mean, I had to prove to somebody myself or my doctor or somebody in the medical community, somebody that somebody was wrong.

Scott Benner (27:40)

Talk a little more first. Take a take a left turn here for a second and talk a little more about what that's like over a a lifetime to go know something's wrong with you, try to explain it to people, and nobody listens.

Sandy (27:52)

It's horrible. It's a horrible feeling. I mean, I have piles of tests and blood work before we had all this technology of things, and I would be told it's in your head. You have anxiety. You're making it up.

We kinda see something like this number may not be right, but it's just right on the cusp, so you're okay. Mhmm. Like, I I've always had digestive problems, and I thought I had celiac disease. I thought I had Crohn's. I don't have either.

When my son got diagnosed with Crohn's, my husband's like, you have Crohn's. You're gonna go get a colonoscopy again, which I've had one before. He's like, you're gonna get it. Ronan, my son, has Crohn's, so you have Crohn's. So I go.

I get scoped out. I'm clean. No celiac. No Crohn's. No nothing.

Nothing. So I don't know what's going on. You know, why do I have stomach problems my whole life? I'm told again, it's anxiety, maybe something I'm eating. I was gluten free for ten years.

It didn't work.

Scott Benner (28:52)

Anybody ever tried to tell you you were depressed?

Sandy (28:54)

Oh, yeah.

Scott Benner (28:55)

Yeah. Were you?

Sandy (28:56)

Yeah. I don't think I'm a depressed person, but dealing with health problems, you know Gets

Scott Benner (29:02)

you down everywhere.

Sandy (29:02)

Get down in the dumps

Scott Benner (29:03)

sometimes Yeah.

Sandy (29:04)

Yeah. Especially when people aren't listening to you. It's very frustrating.

Scott Benner (29:07)

Of course. Tell me about anxiety all your life? Or

Sandy (29:10)

Yes. I I have anxiety. I've had anxiety all my life, and I know my thyroid plays a good portion of that sometimes if it's not regulated. Yep. You you know, that also

Scott Benner (29:19)

No. For sure.

Sandy (29:20)

Doesn't help. So Yeah. Yeah.

Scott Benner (29:22)

Tough. And and the way they treat thyroid too is like, oh, we gave her the pill. That's over now.

Sandy (29:27)

Yeah.

Scott Benner (29:28)

Yeah. They don't think about it ever again after that.

Sandy (29:30)

Yeah. It's just take a pill. Don't worry about what you're eating. Don't worry about your lifestyle, your sleep, or anything like that, your stress. Take the pill.

You're gonna be fine.

Scott Benner (29:38)

You makes you wonder, doesn't it? That Yeah. How can that because that thyroid, it controls a lot. And It does. Right.

Right. And and I know that, and I make a podcast. You know that, and you were a zookeeper. Why is it my doctor doesn't know that? Or why is it they don't treat it more seriously?

Sandy (29:54)

I just don't think they have time. I I'm I'm assuming.

Scott Benner (29:58)

I'm gonna say something, Sandy. May I it's been stuck in my head for a couple of weeks now. I think I'm about done hearing that doctors can't help me because they don't have time. I know. I think maybe that's just become a really acceptable excuse that we use.

Sandy (30:12)

It's a scapegoat.

Scott Benner (30:14)

Yeah. Oh Yeah. They'd help me, but they don't have time. Bullshit. I've sat with doctors that have plenty of time, and they don't come up with anything either.

Sandy (30:20)

I know. I know.

Scott Benner (30:22)

Yeah. How about I don't know would be a nice answer? Well You know what I mean?

Sandy (30:27)

That's what I would like sometimes. I don't want a doctor to play like they know everything. Yeah. Just tell me that you don't know and I'm okay with that. Let's move on from there.

Find somebody else or figure it out, but you don't have to know everything.

Scott Benner (30:40)

Yeah. I'm starting I'm starting a movement right now. No one

Sandy (30:43)

I will be head of that movement with you.

Scott Benner (30:45)

No one gets to say, oh, it's not their fault. They don't have time.

Sandy (30:50)

Right.

Scott Benner (30:50)

Right. It's just it's just silly. I took my car to get fixed and my brakes were bad. And I crashed into a wall thirty minutes after I left, and they found out the brakes weren't fixed completely right. And we went back to the mechanic.

Guys said, look, guys. It's really busy. I have time to do it. Yeah. Would we go, oh, well, you didn't have time?

It's just such a strange thing to say. Like, it almost feels like it feels like this cascading situation where

Sandy (31:15)

Well, that where I'm living, that's what we're dealing with. The health care system where I'm living is falling apart really fast.

Scott Benner (31:20)

I don't even I don't even care if it's a system. Once you're in the room with somebody that has taken the Hippocratic Oath, I don't actually give a shit about the health care system anymore. You're in there with somebody who told me that they're educated and ready to help. I don't know. I just saw I just had to change doctors because my doctor let me just say this.

You may many of you may have heard her on episode four thirteen. It's, she explains, thyroid issues, actually. And she's an endocrinologist, functional medicine doctor. I use her. My daughter uses her.

All my whole family goes to her. She amazing. Her husband gets a job with the French government, and they're moving to Paris. And I said to her, please, you've been with him your whole life. It's probably enough.

Why don't you get divorced? Stay here. Be my doctor. Right? Right.

But no. No. No. She wants to go to Paris and live there. So now she's leaving, and I gotta get another doctor.

Okay. Fair enough. She's got a life. I I I got past that. Then I went out to find another doctor.

She helped me locate somebody. I get in there. You know, I gotta meet the meet the guy, and he was fine. But, like, inside of five minutes, I thought, he's not saying anything. He's not asking anything insightful.

He's waiting for me to tell him what I think I need. Like and then I and then I finally, like, I let him do his thing, and then ten minutes into it, when I started getting irritated, like, not irritated externally, but irritated like this is he isn't special like she was. And I went and I said, listen. Here's the deal. And I just laid out my health in front of him.

I said, here's what I'm gonna need help with. This is what I'm taking right now. Most important thing in the world is I keep getting this GLP medication. After that, I need my iron tested every six months. I might end up asking you to sometimes tell my hematologist that I need an iron infusion.

Maybe, maybe not. They've been less you know, blah blah blah blah blah. Here's the vitamins I take. I how do I get ahold of you? And, boy, when I took over, he sat back.

He was all comfortable and happy as could be.

Sandy (33:07)

Doctors don't want you to do that anymore.

Scott Benner (33:09)

Yeah. Guess what? He was looking for a way out. But if I don't speak up, then he lays out this vanilla plan in front of me. Yeah.

It's about going to get blood. Oh, we'll go send you for blood work. I said, I just had blood work. Go look at that blood work. Oh, okay.

Did you? That yeah. If if I wouldn't have said anything, I'd have been off getting blood work.

Sandy (33:28)

Yeah.

Scott Benner (33:29)

I'm like, I don't need blood work. There's blood work right there. Pull it up. Oh, sometimes Quest won't let me oh, here it is. Oh, okay.

Awesome. Like, the whole thing feels like that.

Sandy (33:39)

Yes.

Scott Benner (33:39)

I just Yes. You know what I mean? Like, there's not someone with the courage or their convictions and a little bit of smarts behind it to, like, push. Now I've also been to great doctors. I'm not saying every doctor's a problem.

But when you get to one, a guy sat with me for a half an hour. And if I wouldn't have spoke, he would not have been valuable to me.

Sandy (33:56)

I found a cardiologist like that.

Scott Benner (33:58)

Yeah. And if I if I get sick later, do we say, oh, it's it's not his fault. He didn't have time. He had plenty of time. What he didn't have was thoughts.

Yeah. That's what I'm gonna tell you right now. I'm done. I want the I'm I'm I'm ready for the computers to take over. Let's go.

Sandy (34:11)

We talk about that. Yeah.

Scott Benner (34:13)

I'm I'm ready.

Sandy (34:14)

Let's go back and forth.

Scott Benner (34:15)

I'm ready. Let's just put, like, an AI model in charge, and let's see what happens. Could it be worse? Yeah. Peep yeah.

Could couldn't be worse, could it? What are they gonna do? Blow up the planet? Oops. See?

We're already on that.

Sandy (34:26)

Right?

Scott Benner (34:27)

Come on. Acting like, please. I'm done. I want something that can be Yeah. Dispassionately think about me and come up with the best possible answer.

Put me in a direction. Let me give it a shot. Like, that's all. I'm done with people. That's it.

I'm moving. I'm gonna go I'm I'm gonna go in the mountains. What do think of that? Get the hell out of here. Alright.

I'm sorry, Sandy. I just know you got the runaround, and I hear in your voice, you're an adult. You're in your fifties, and you start talking about your life with your health, and, you know, you sound like a little girl when it happens, when you start talking about it. Like, you're hurt and scared. Do you know that?

Like, can you hear it in your voice? Yeah. Yeah. Yeah. It's both shouldn't have to feel that way.

I'm sorry. We're back to it. Okay. That's okay. No.

No. I I you may it's Friday afternoon. Have all kinds of energy.

Sandy (35:10)

Storytelling. Like, I like all of this. This is fine.

Scott Benner (35:12)

I'm glad. I'm glad. I'm I'm all upset today. They get you off the metformin. Maybe that's it.

I'm sorry. Go from there.

Sandy (35:18)

So I was put on insulin because of what happened with the metformin, and I was pretty much handed an insulin pen. I met with a a nurse to show me how to inject myself with it, and that was it. I was told how much to give myself. No correction. No nothing.

I was given nothing. And so I started doing that, and I was really nervous. I didn't really know what I was doing. And so I think that was nova no. Wait.

It was the long acting

Scott Benner (35:47)

They give you Lantus? They love they love remember Levemir. Lantus.

Sandy (35:52)

Levemir. It was Levemir.

Scott Benner (35:53)

I was

Sandy (35:53)

put on Levemir. Yeah. So I was told what to do once a day, and we'll go from there. So I do the Levemir. And then at some point, I go back.

I don't remember how much longer. A few weeks after, I guess, I go back, and she's like, okay. Now you need to be put on fast acting insulin for when you eat. Mhmm. Again, I'm giving this with not a whole lot of direction.

Here here's your carb count. No correction dose at the time. Not even the the glucagon. Nothing. Like, here it is.

I have insulin. I really don't know what I'm doing. I'm doing the best that I can. I'm afraid I'm gonna go low Mhmm. Because I don't know how to treat it.

Scott Benner (36:30)

I would imagine you're out of your mind afraid.

Sandy (36:32)

I was. Yeah. And I wasn't given a whole lot of direction really what to do if I go low or this or that, but I'm I'm doing the insulin. I'm doing the insulin. I keep going back to the endocrinologist to go over some things.

I had a friend who I found out was type one and, like, do you carry this with you? Do you have the glucogen? Do you have this? I'm like, no. Glucagon.

You need glucagon. Thank you. Knew I wasn't saying it right.

Scott Benner (36:55)

Don't worry. I've got you. Someone with no medical training. Somebody Yeah. Yeah.

Yeah. Good. Good. I'm good. Good.

Uh-huh.

Sandy (37:01)

So he's like, you need to go to your doctor. You need to get this stuff. I go to my doctor. She's like, oh, yeah. Yeah.

Let me write you a prescription for this. And so I get that. And I'm doing okay, and everything's going alright. And I I'm on, I think, maybe two years. I'm on injectable.

And I was like, I really wanna go on a pump. Like, I hear about these pumps. I don't know anything about them, but I think it's gonna make my life a whole lot easier. I'm handed pamphlets. Choose a pump.

Talk with your insurance. Figure it out.

Scott Benner (37:31)

I'm sure they'd help you if they just had more time, Sandy.

Sandy (37:34)

They

Scott Benner (37:35)

Yeah. If there was just more time, I'm sure she'd explain to you. It's not that the stories I hear the with the doctors go, I don't really know anything about the pumps. That's why I don't talk about them. It's not that.

And I'm sure the nurse would have helped you with, know, counting carbs and understanding your but just didn't have time. Everybody's very much. Busy. Yeah. Thank I walk out in the hall.

Everyone's leaning on the fucking wall.

Sandy (37:55)

Exactly. Yeah.

Scott Benner (37:55)

Yeah. Okay. We're all super okay. I'm working. I just wanna know I want you all to know that.

If I'm awake, I'm doing something. Yep. Everybody else get to work. Oh, I'm getting angry. Oh, I'm having such a good time, Sandy.

Keep talking. Go ahead. That's okay. No.

The RADIANT Study & Finding Answers

Sandy (38:08)

I just keep getting the brush off exactly what you're saying.

Scott Benner (38:10)

Yeah.

Sandy (38:10)

So I'm convinced at this point that I have a ladder. I do this research. I met somebody who has Lada. I talk with him, and he's like, that's what it sounds like. And I said, but I don't have the antibodies.

And I researched that it's possible that you can have Lada without antibodies. It's rare, but it could be. I was like, okay. I have Lada. That's I gave myself this diagnosis because that felt more manageable than type two at this point that wasn't being managed.

Scott Benner (38:38)

I was

Sandy (38:39)

like, I have an autoimmune problem. I could deal with another autoimmune problem. I don't want it, but it's here. Right. So I'm going to be okay with this.

So I get on a Facebook page about Lada, and I word vomit my whole story, everything that happened, and, you know, how this nothing makes sense.

Scott Benner (38:59)

Right.

Sandy (38:59)

And this wonderful person gets on and on my post, and she's like, have you ever heard of radiant diabetes? And I

Scott Benner (39:07)

I Wait. Hold on. Radiant diabetes?

Sandy (39:09)

Radiant diabetes.

Scott Benner (39:10)

Good. Good.

Sandy (39:12)

I asked her about it. She said she's part of this study, and they research rare and atypical diabetes. And I was like, oh my gosh. Like, I really wanna do this. So I go on their website, and I'm thinking my luck, I'm not gonna get into this study because that's just how it goes for me.

Sorry to be a downer, but I fill out the application. I do everything. And within a few weeks, I get an email. I got accepted into the study. And I'm like, oh my gosh.

I got accepted. Like, it's rare that people get accepted into the study. I'm told there are people who fight to get into this study. And I was like, I got accepted into this study. I tell my husband, and I find out.

Scott Benner (39:51)

Wait. Wait. Are we talking about the rare and atypical diabetes network? That's what radiant means? Okay.

Sandy (39:56)

Yes. Yes.

Scott Benner (39:59)

You get into the study. I'm sorry. I cut you off.

Sandy (40:01)

You're fine. It's okay. I can just keep talking and talking and talking.

Scott Benner (40:04)

So Sandy, I figured you I figured you out a little while ago. I know what's going on. Don't worry.

Sandy (40:09)

So I'm emailing this person back and forth, and she's like, first, we're gonna test you for type one. And if that comes back negative, then we're gonna go on to stage two and three. I was like, great. So they do their own test. Of course, it comes back negative.

And she goes, now we're gonna draw blood to do a whole genome sequencing and to look for why you have diabetes, and then you have to do an on-site visit. So they're located in multiple universities around The United States

Scott Benner (40:39)

Mhmm.

Sandy (40:40)

With doctors and researchers and nurses and stuff like that where you can go to do your insight visit. So I first go and get my blood drawn for my whole genome sequencing. So this was a year ago, which I still have not gotten back. I was hoping to get it back before this podcast, but I haven't.

Scott Benner (40:56)

Okay.

Sandy (40:56)

There's a whole thing with that, but it's fine. So I do that. And then in June or, like, May, I'm talking with them, and they're like, okay. We want you to go to one of our inpatient sites around The United States. Where do you live?

What does your life look like? And I said, look. I'm a teacher. I'm off for the summer. I can do go anywhere you want in the summer.

They're like, okay. You're gonna go to Chicago.

Scott Benner (41:22)

Mhmm.

Sandy (41:22)

I'm like, great. Get on an airplane. I go there in June. I spend a whole day with researchers, a nurse, like, all these fabulous people that listen to me. Yeah.

Mitochondrial Disease (MIDD)

Sandy (41:33)

So before I go to Chicago, before I go, I'm researching everything that they test for for diabetes. And I I mean, there's, like, hundreds of things, and I'm going back and forth and back and forth and googling and all this stuff, and I come up with mitochondrial disease. And it was, like, me to a t. And I go to my husband, and I was like, please look at this. I need you to do some research.

He loves to research things, and he's good at it. And I said, please research this. Tell me what you think. He comes back to me the next day. He's like, this is you.

This is you to a t. And I and I said, don't tell anybody. I wanna go to my insight visit, and I'm gonna talk to them about it. So I spend the whole day. They're running all of these tests.

I had to drink that sugary drink, the Glucolla. Yeah. Couldn't take my insulin. My glucose goes up to 400, and I wasn't able to eat. And then they're about to bring me lunch and help me carb count, and the doctor walks in.

And he's helping me carb count, and he's going over my history with me. And we're talking about everything for a while, everything that I went through, everything that happened. And I did not bring up mitochondrial disease. And we're talking and he goes, I think you have mitochondrial disease. And I looked at him and I said, my husband and I researched this and we're thinking the same thing.

Scott Benner (42:50)

I would have had it written on a piece of paper in my pocket, I could have pulled it out and been like, was way ahead of you. But, no, that's awesome. Yeah. Yeah.

Sandy (42:56)

So I actually have to back up. I totally forgot something.

Scott Benner (42:59)

Okay.

Sandy (43:00)

Really important. So when I got diagnosed with diabetes, after I got diagnosed, my family kept telling me that I was not hearing them. I was not hearing things. And for a while, I was in denial. I was not listening to them.

Scott Benner (43:11)

Wait. What's that? I can't what's that? Alright. Good.

You're good to you, Sandy. You're awesome. Good. We're Yeah. Yeah.

So

Sandy (43:17)

I tell my endocrinologist, there's an audiologist across the hallway. She goes, if you wanna see an audiologist, I'll send you. Normally, I don't send patients until they're older. But if you wanna see an audiologist, go ahead. I go see an audiologist, lo and behold, I'm losing my hearing.

Scott Benner (43:32)

Oh.

Sandy (43:33)

And I had to get hearing aids. Where is that coming from?

Scott Benner (43:37)

I don't know.

Sandy (43:37)

Don't go to rock bands. I don't work around loud noises.

Scott Benner (43:40)

Right. Right.

Sandy (43:41)

Okay. So back to when I was in Chicago, and I'm talking to them about it. So I was clinically diagnosed with what's called maternal inherited deafness in diabetes, where it's a mitochondrial disease that affects my pancreas and my hearing and could affect some other organs in my body, but nothing else seems to be affected. But those are my two main things. And if you have mitochondrial disease, you can't take metformin because it will cause lactic acidosis.

Scott Benner (44:11)

Goddamn. You figured it out.

Sandy (44:13)

Figured it out.

Scott Benner (44:14)

That's pretty exciting, isn't it? You probably were like you probably felt like you won the lottery or the the or the Olympics or something. Put me up yeah. Look at you.

Sandy (44:22)

I I was so happy. I I don't wanna be sick. I don't wanna have a diagnosis. I'm not sick. I take that back.

I don't wanna have a problem.

Scott Benner (44:29)

Right. Sure.

Sandy (44:29)

But I do. It's here, and I got an answer.

Scott Benner (44:33)

You want less than not have an answer about something that you have a problem with. Like, you know, I I say all the time. Was like, look, nobody wants this, but if we have it, at least a good plan is a good plan. Yes. Yeah.

Yeah. And it does make you feel crazy.

Sandy (44:44)

Oh, I for everything that I've dealt with in my life, I finally felt validated. Yeah. You know, when you look at everything that I've dealt with, I'm like, that's mitochondrial disease. That's mitochondrial disease. That's mitochondrial disease.

So, like, short stature. I'm short. I'm five feet. My parents are not short. You know, there are just certain things that I have that doesn't run-in my family.

Scott Benner (45:05)

Okay. Wow. That's really that's astonishing that you figured that all out. Hey. Can I ask real quickly?

Scott Benner (45:10)

Yes. Yes. Have the advancements of like, did AI help your husband through this? Like, was it a thing you couldn't Google in the past and figure out, but you were able to figure out because just because computing's different right now? The Internet's more connected or etcetera?

Using AI for Health Advocacy

Sandy (45:24)

He yes. He was. So my husband uses ChatGPT and all that stuff. Like I said, when we first talked, like, I'm not really into technology, but he likes to, yeah, likes to use all that technology and stuff to help him come to solutions or whatever, you know, whatever research he's doing. Yeah.

Scott Benner (45:44)

I have to tell you, if it wasn't for AI, and I don't know Adele, do you listen to the podcast, like, religiously? Because if not, you're not gonna know this.

Sandy (45:52)

I do. I listen to you every morning in my classroom.

Scott Benner (45:54)

Oh, okay. Well, then you'll you'll get the context here, everybody else that doesn't listen every day will will figure it out. But I would've never got my butthole fixed if it wasn't for AI.

Sandy (46:03)

I would've sent to that. Yeah.

Scott Benner (46:05)

Yeah. Yeah. Yeah. Because I googled that living crap out of that for years and nothing happened. And then one day, just said to ChadGPT, I said, hey.

I think I got I need help. And and it it in a split second, was like, have you tried this? And I was like, no. I'm like, wait. Where'd you find out about that?

And then it was just like, oh. I said, where can I get that done? The doctor's, like, seven miles from my house. I was so pissed. I was like, are you kidding me?

But, no, no matter how many times I googled it and all the different ways I thought to Google it, I came up

Sandy (46:32)

It with doesn't it's it's chat GPT that that works.

Scott Benner (46:35)

I came up with the, like, the I think probably the more common answers. Yeah. And then I I asked chat GPT or whatever. I don't know if it was Gemma. I don't remember anymore.

And it gave me all the common answers too, and I was able to respond to it and say, no. Those are all the common answers. Those don't work for me. Is there nothing else? And then it just went, yeah.

There's this.

Sandy (46:54)

It spits it out. Yeah. I'm becoming braver with chat GPT. My husband's teaching me, and I'm becoming braver with my diabetes because I still am navigating it by myself and your podcast. Thank you.

Scott Benner (47:07)

Sure.

Sandy (47:08)

And other people that I've talked to, and it really has helped me, like, with bolusing or how I'm feeling or my numbers or

Scott Benner (47:15)

Oh, yeah.

Sandy (47:16)

Like, if I'm having anxiety about something and I put it into GPT, you know, it kinda helps me figure things out. So I'm I'm getting braver with it, and it has helped.

Scott Benner (47:25)

So Let me say this, and I'm sure there's some people who don't wanna hear about this. But I'm gonna tell you that I think that there's, like in the next twenty four months, you're gonna see the models are all gonna leap again, and then they're gonna wait a minute for the new chips to come out. And then once the new chips come out for the computers that power all this stuff, I think you see the models take another leap again. I think they're gonna be astonishingly better by the end of twenty twenty six, maybe sooner. And then the beginning, the middle of twenty twenty seven, I think it's over at that point.

Sandy (47:58)

We've had our own conversations over here about

Scott Benner (48:00)

that. Yeah. I I'm fairly comfortable telling you at some point, you're just gonna throw your graphs into a thing and be like, hey. How do I bolus for this? And it's just gonna tell you.

How long is it before I mean, there's a bunch of do it yourself, you know, algorithms. There's Loop and Trio and Android APS, blah blah. I mean, there's gotta be some that. Yeah. Some people have I mean, got to have dropped that code into this already and said, like, you know Yeah.

Can we make this I'm sure the people developing it are probably doing that. How do we make this better? How do we make it work? Like, you know, like, I don't know. I think you're real close to it.

Like, you know

Sandy (48:34)

I'm I'm hoping. I mean, I need all the help that I can get. I finally did get on a pump, and I think everybody should be on a pump. I don't understand why everybody isn't. I love it, and it's helped me.

Scott Benner (48:45)

So I'm glad it's helped.

Sandy (48:46)

Whole d the looping and do it yourself and all that is way above me right now. Like, I can't even bring myself to that point at the moment. So maybe in the future.

Scott Benner (48:55)

Sandy, let me let me just say this. There are people who can't afford pumps. They don't have insurance that'll cover them. Yeah. Some people are really scared of the idea that algorithms shut basal off, and they wanna always they always wanna have a background insulin in them.

And there's I mean, there's reasons. You know what I mean? Like, some people don't like stuff hanging on them. There's but I take your point.

Sandy (49:13)

They're I get.

Scott Benner (49:14)

Yeah. They're incredibly valuable.

Sandy (49:16)

I I get yeah.

Scott Benner (49:18)

I get diabetes tomorrow. I'm getting an insulin pump. I just want you to know.

Sandy (49:20)

I just haven't talked to many people on a pump, so I don't, like, really get a whole lot of feedback. Like, I know two people with type one diabetes on different pumps, and they love them.

Scott Benner (49:30)

Mhmm.

Sandy (49:30)

And so but I don't I haven't had, like, a whole lot of connection with people. So and I know everybody has their own opinion. For me, it was the best thing that I did. It's worth every penny that I sink into it every month.

Scott Benner (49:43)

Good. Well, I'm I'm glad, you know, I'm glad for you that it that it's valuable and that you found a way to do it and everything. Yeah. Yes. Tell me more about mitochondrial disease.

Like, what what did you what have you learned since then?

Sandy (49:52)

So I'm learning very slowly that pretty much you treat symptomatically. So like I said, I did not get my whole genome sequencing test back. So I don't have anything on paper yet. This is from a doctor through Radiant Diabetes, and I know that I fit that diagnosis. It all makes sense.

So I am going with that. I'm hoping in the next few months I have everything on paper, and then I can find somebody to help me. But from what I'm learning, reading, and on chat GPT, you treat symptomatically. So I'm on insulin. I'm wearing hearing aids.

If any other functions start failing, then I go see that kind of doctor, that ologist, and have them help me through whatever is helping. Like, if it's a cardiologist or a urologist or whatever.

Scott Benner (50:41)

Mhmm.

Sandy (50:41)

So there is, like, muscle issues and things that I know that I'm starting to deal with, but I can't find help right now for that because I don't have things on paper. Because once again, we're dealing with doctors not having time, and especially if you don't have something in front of you to hand them, it doesn't exist. Okay. So

Scott Benner (51:05)

So they're waiting for you to tell you what's wrong with you too?

Sandy (51:08)

I guess. I mean, I've gone to doctors and I said, hey. I have this clinical diagnosis. This is what's going on with me. Well, you look fine, so you're okay.

So we're not going to help you. We can't help you.

Scott Benner (51:20)

Jeez.

Sandy (51:20)

You're treating your diabetes. You're treating your hearing loss and whatever else is going on.

Scott Benner (51:24)

What else do you have going on? So you're short stature. Your hearing's an issue. Yes. What else do you think is impacting?

Sandy (51:30)

Diabetes, I have small hands, small feet, which also go along with it. Digestive issues. I've had digestive issues my whole entire life. Also, learning disabilities can be part of mitochondrial disease, which I do have a learning disability, not a severe learning disability. But so, yeah, things like that.

Muscle pain, joint pain

Scott Benner (51:52)

Wow.

Sandy (51:53)

Things that I've that that I've dealt with. Yeah.

Scott Benner (51:55)

Yeah. Yeah. Yeah. My gosh. Oh, through your whole life too.

Sandy (51:58)

Yeah. I mean, not nothing's been severe. Like I said at the beginning, you know, everything's kind of been in the gray, you know, and I I live, I work, I I do my life, but it's been in the gray. You know? And as I get older, my body's starting to punk out because it's not getting enough energy because of mitochondrial disease.

So certain things are just starting not to work properly now. That's what I was told. This type of mitochondrial disease does hit between thirty and fifty, and so I was started really getting major symptoms in my forties with the hearing loss and diabetes.

Scott Benner (52:30)

Okay. Does anyone mention Wolfram's to you? No. Does that come up? No?

Sandy (52:36)

Okay. No.

Scott Benner (52:37)

I'm just I'm trying to I don't know a ton about this, so I'm trying to, like, pick through it as well.

Sandy (52:41)

No. No. No.

Scott Benner (52:42)

I've had a person on who has that. That's just what I was asking. Yeah. I

Sandy (52:45)

mean I I've read about it. You know? I mean but yeah.

Scott Benner (52:49)

How can it bring on type one, though?

Sandy (52:53)

So I guess my pancreas is not getting enough energy to produce, what is it, the beta cells? I don't know. I I'm probably not using proper terminology. I really know what I'm talking about. I'm gonna be honest.

I'm still learning, but my pancreas just isn't doing what it should be doing because it's not getting energy to do it.

Scott Benner (53:12)

Okay. So I'm gonna tell you I'm gonna tell It doesn't sound right. No. No. What what I have here is that it says, maybe a cleaner way to think about it is that mitochondrial disease can cause a different kind of diabetes that can look like type one because the pancreas stops making enough insulin.

Right. In mitochondrial die in mitochondrial diabetes, the problem is often the damaged mitochondrial in mitochondria in the beta cells cannot make or release insulin normally. The insulin shortage can make someone look insulin dependent, and they may even be mistaken for type one at first. Classic type one diabetes is different. Of course, we know how the how how type one works.

Sandy (53:50)

Right.

Scott Benner (53:51)

So mitochondrial diabetes, insulin production fails because the cell's energy machinery is impaired. There's some research showing that mitochondrial dysfunction is involved in bile in the biology of type one diabetes, especially in beta cell stress and injury during autoimmune inflammation, but that is not the same as saying you have mitochondrial disease by itself. Right. Causes classic autoimmune type one. The stronger clinical point is that mitochondrial disease more often causes a non autoimmune diabetes subtype that can be misdiagnosed as type one or type two.

Sandy (54:24)

Jeez. So that's what happened to me. That's why I was misdiagnosed as type two.

Scott Benner (54:28)

What a role. But Yes. But treat it like a type one because it works that way.

Sandy (54:32)

Thank you for bringing that up.

Scott Benner (54:33)

No. No. No. No. I couldn't hear

Sandy (54:34)

saying all that. I appreciate that. Because one of the things I wanna do is when somebody like me walks into a doctor's office, I want doctors to have information to be able to look more into what this person is dealing with, and that's what Radiant Diabetes is doing.

Scott Benner (54:52)

Yeah.

Sandy (54:52)

They're they're trying to get information out to doctors. I you know? So that when somebody like me walks into their office and they are not presenting either type one or type two and they're just presenting all weird and not even Modi Right. Because I got tested for Modi, that came back negative. What else could it be?

And so they they test for all sorts of things.

Scott Benner (55:11)

Yeah. The mitochondrial issue is not just magically making you type one. Like, it's Correct. It's giving you diabetes that mimics type one

Sandy (55:19)

Correct.

Scott Benner (55:19)

And in different way. Yeah. So it it just says here that a doctor will look at autoantibodies, c peptide, family history.

Sandy (55:26)

Peptides have been fine. Like Yeah. They've gone to low normal to reg you know, and a little bit above. So it my pancreas is working. So yeah.

Exactly.

Scott Benner (55:37)

Well, I I mean, you have a an incredibly rare thing inside of a an already rather rare thing. Not a ton of people on the planet with type one diabetes and, you know, not not based on the the overall population at least. Wow. And is there anything they can do for the mitochondrial issues? Can they treat it anyway?

Sandy (55:54)

So I'm told or what I've read is that there's, like, what's called Mito with different supplements with co q ten being the number one thing to take. And then depending on what kind of mitochondrial disease you have and what kind of deficits you might have, doctors will come up with these cocktails that may or may not help. Some people say that they help. Some people say that they don't, and they have to readjust, with l arginine and some other supplements that they could take. So it's it's a cocktail.

Scott Benner (56:22)

Mhmm.

Sandy (56:23)

I've tried to start, you know, like, taking co q ten and a few things myself. But, again, I don't know what would be the right thing for me to take and in what amount and how is it interacting with other things that I'm on, hoping at some point to find some guidance of somebody to be like, okay. Yes. You have mitochondrial disease. Let's come up with a cocktail for you to see if that will help you feel better.

Scott Benner (56:45)

Are you having any luck finding a doctor that specializes in this?

Sandy (56:48)

No. So there are a few doctors around The United States that do specialize in mitochondrial disease. I really have not reached out to any of them Mhmm. Yet because I don't have my whole genome sequencing in front of me, which I've even said, you know, let's start from the ground up and, you know, do different testing, whatever. I did try to get into a hospital here close to where I live, and they said no.

So

Scott Benner (57:12)

They said no? Why did they say no?

Sandy (57:14)

Because I'm just not weird enough. They didn't have enough information. I was not cool enough. I don't know. To join their club.

I don't know.

Scott Benner (57:23)

I don't think that was it. You imagine that. I don't know. You imagine if they were like, we would, but you're not quite cool enough.

Sandy (57:30)

You're not quite cool enough.

Scott Benner (57:32)

Are you I mean, obviously, you're you're you're very much paying attention to this. So you're worried about further problems in the future? You're worried about your heart, about seizures, things like that that could come from all this?

Sandy (57:44)

You know, I don't. I'm trying not to. So I know that seizures and strokes could be something in the future. So so I have what's called MID, maternal inherited deafness and diabetes, and there's, like, a scale where at the other end of the scale is MILAS, where that's where the stroke and seizures can possibly start happening. Doesn't always happen.

Doesn't always go that route. So I'm not trying to think that far right now. I'm thinking, like, I'm doing okay.

Scott Benner (58:16)

Mhmm.

Sandy (58:16)

I did find an excellent cardiologist that has done a workup on me. My heart is doing great.

Scott Benner (58:22)

Cool.

Sandy (58:22)

So I just have high blood pressure, so he's working on that with me. But just everything else, I'm just taking it step by step and in stride.

Scott Benner (58:32)

Yeah. How about in your family line? Are there any women on your family line who have had these sorts of issues that in the past nobody would have been able to figure out?

Sandy (58:40)

Not that I know of. Okay. It's possible, but there's no documentation, and I haven't heard of that. So it is passed down through mother maternal Yeah. Through the mother.

So every kid gets it, but then it stops at at the son. But the daughter can pass it on, and then everybody has their own variation whether they have symptoms or not of it from what I've read. Mhmm. So, like, I have a sister. I don't think she has symptoms of it.

Scott Benner (59:06)

Okay.

Sandy (59:07)

I think she's fine. Like, I've given her the information, but I don't think she's dealing with what I'm dealing with. My mom I look back to my mom when I was growing up. I think my mom dealt with some of the stuff that I'm dealing with, and they're just she was never diagnosed.

Scott Benner (59:22)

Sure. She alive still?

Sandy (59:23)

Yes.

Scott Benner (59:24)

Okay. Listen. I am not a doctor. I think it's pretty obvious if you listen to the podcast, and I'm certainly not giving you advice. But you could go to our overlords, ask what isn't a common Mito cocktail, and then ask how you might decide what the dosages of those things should be.

And it's possible that

Sandy (59:42)

we done that. Yeah? Yeah. I'm just so afraid right now, especially with what's happened to me, but I have done that. And I had g chat GPT put me out of schedule.

But, also, some of my I hate saying medications. Like, I feel like I'm on all these medications have changed and are kind of changing and adjusting that I'm afraid to add anything else into things until something's calmed down.

Scott Benner (1:00:03)

Mhmm. Mhmm.

Sandy (1:00:04)

So but I have done that. So that's where my husband made me brave.

Scott Benner (1:00:09)

Good. Good. I'm glad. Yeah. I it's funny because when you're talking so when we first started we started to record, you said I'm kinda nervous.

Are you still nervous? No. No. Not anymore. And you're very boisterous, and you're very willing to tell your story.

But then privately and personally, you get you're scared to do things sometimes.

Sandy (1:00:25)

I am. Yeah. I I just because I've been through a lot the past six years, and I'm afraid of something bad happening again. And since I don't have medical guidance, really

Scott Benner (1:00:36)

Mhmm.

Sandy (1:00:37)

Like, I wouldn't even know who to go to if something happened or what to do. So I'm just trying to do what I know what to do, take care of what I know what to take care of and how to take care of it. And then I'm waiting for things to slowly I'm not waiting, but things are just slowly unfolding and unraveling for me. And I just you know, it's been six years since everything has started, so it's just gonna be a longer journey, and I have to be okay with that.

Scott Benner (1:01:03)

Yeah. Yeah. I mean, listen. I don't again, apropos of nothing. I and I barely got through high school.

It's very important to remember all this. Like, I don't there's nothing crazy in this cocktail. You know?

Sandy (1:01:14)

I oh, you're reading it.

Scott Benner (1:01:15)

Riboflavin, creatine, alpha, lipic No. You're acid, vitamin c, vitamin a, other antioxidants.

Sandy (1:01:24)

It's like I have to, like I put so much energy into going to a doctor or finding a doctor, dealing with something, and then, you know, it's a lot. So then I have to take a few step back. And that includes your podcast. Like, I really wanted to come on and talk to you Yeah. About this because I wanna get information out to other people.

But it took me time to be like, okay. I'm gonna reach out to him so that I can get on the podcast and I can talk about what I'm going through and dealing with so that other people can hear it. And, hopefully, I can hear other people, but it's like, I could take three steps forward, then I have to take two steps back. So it's like, I can't do everything all at once because I'm dealing with a lot of different things.

Scott Benner (1:02:04)

Yeah. No. Well, having said that, pure encapsulation makes a mitochondrial support vitamin.

Sandy (1:02:10)

Yeah.

Scott Benner (1:02:11)

I mean, you know, what the hell? I'd pop a couple in and see what happens.

Sandy (1:02:22)

I mean, I just might once I get off with you, you might I might feel so energized and be like, you know what? I'm gonna feel brave now, and I'm gonna do this

Scott Benner (1:02:29)

now. Listen. It's I look. I'll read it right off the bat. Vitamin c, vitamin e, thiamine, riboflavin, which is vitamin b two, magnesium as magnesium citrate and malate.

Jeez. Nicotineamide riboside chloride. Don't know what that is. Creatine monohydrate acetyl l carotene trans reversal knotweed. You know?

I mean, cysteine lipoic acid coenzyme q ten. I mean That's

Sandy (1:03:03)

q ten.

Scott Benner (1:03:03)

Yeah. I mean, listen. What are we doing? You already have a ton of problems. If this thing does you in, yeah, just call it it was gonna happen anyway.

You you know what I mean? But,

Sandy (1:03:13)

like I mean, I could get to that point. Like, let's just do it. You know?

Scott Benner (1:03:16)

I mean, honestly, like

Sandy (1:03:17)

We shouldn't do it. Yeah.

Scott Benner (1:03:19)

I mean, I I I mean, if a vitamin listen. You have a lot of problems. If the vitamin kills you, you were fucked one way or the other. It's not a different thing.

Sandy (1:03:28)

I mean, you gotta look at it that way.

Scott Benner (1:03:30)

Right? I swear to god. If this vitamin puts you under, you you were on your way anyway. Okay? Just let it be.

What What do you argue with the world for? Let me see something. Listen. It's Amazon. Right?

But but but, reviews are from people using it are are pretty solid. Yeah. You know? One person said it didn't work for them out of the first 10 reviews. I can't tell any difference after three weeks of that person said.

Everybody else is like, my practitioner recommended this. It's a good energy source. I have more energy. It gives me more energy. Interesting and quality formulation.

You know, I don't mean they're just people's reviews. I don't it could be, you know, could be bots. I have no idea. I was just about to say

Sandy (1:04:12)

it could be chatbots making the reviews. But, again

Scott Benner (1:04:16)

But Pure's a really reputable company. And and and these are expensive. They're, like, $82 for a 120. That's pretty pricey. You know what I mean?

Sandy (1:04:27)

Just throw that into the pot with everything else that

Scott Benner (1:04:30)

But listen. How many are you supposed to take a day? Let's look here. I don't know. I know.

Two capsules a day, it says. So you get sixty days worth of a shot at it for $82. If you feel better, God bless. And if you don't

Sandy (1:04:40)

I mean, honestly, like, I you know, my pump is worth everything that paying every month. So, like, if that was to make me feel better, you know

Scott Benner (1:04:47)

Honestly, what do we it's like a thousand $900 a year maybe. Yeah. And if it helped, then then right on. Yeah. Yeah.

Yeah. Yeah. I listen. I I'm a I'll try anything. I you know, like, just just to see what's up.

God, I I shouldn't say this here. Just because if it's, you know, whatever. Arden's boyfriend was over recently. I was like, are you taking vitamins? And he goes, no.

I'm like, what is wrong with you? And I threw I threw because he's talking about how he feels, and I, like and I and I and I threw a bottle of vitamins on him. I said that those are on me. Take two every day. I see you taking vitamin d?

No. I said, look at how pale you are. Take vitamin d. I gave it to him because I'm I'm what they call him, Mench. I don't know if you know the word.

Sandy (1:05:25)

Yes.

Scott Benner (1:05:26)

Yeah. Sandy, actually, I know you know the word. Don't worry about it. I can tell. So and and, yeah, he's had them for three, four weeks now.

He came over the other night. I said, are feeling? He goes, you know, mister Banner, I have a lot more energy. I do feel better. Oh.

And I was like, oh. Then I looked at Arden, who won't take the vitamins I give her. And I was like, mhmm. And she looked at me like and I she didn't say this out loud, but I think the look on her face said, leave me the fuck alone. And so and I was like I was like, whatever.

I just laughed and I went about my business. But listen. In the end, your body needs certain building blocks every day.

Sandy (1:06:03)

Yes. Exactly.

Scott Benner (1:06:04)

And we all certainly don't eat in a way that's gonna provide them all. And there's already a ton of other issues. I don't see the problem with throwing them in there just to see if they help. Like, you you know what I mean? Like, it's not gonna hurt.

You ate an Oreo. Not. Like, I imagine, like, you eat you said you ate an Oreo.

Sandy (1:06:22)

Yeah. I mean, I'm not exactly yeah.

Scott Benner (1:06:24)

I don't know. I'm in scary. You know what I mean? I know. Fuck you thinks in that Oreo.

Sandy (1:06:29)

Like my almost my whole life.

Scott Benner (1:06:30)

You you also have mitochondrial disease. Yeah. I I know. You're five feet tall. That's very short, by the way.

Sandy (1:06:43)

It is. It is very short.

Scott Benner (1:06:46)

I Arden one of Arden's friends is, like, five feet tall. Every time she walks I've known her for twenty years. Every time she walks in the house, I think, god, that kid's short.

Sandy (1:06:53)

I am. And I teach four and five year olds, so it's like I kinda blend in really well.

Scott Benner (1:06:58)

Yeah. For feel like these kids could kick my ass if they wanted to. Arden said to me the other day, she goes, hey. Let's take some online quizzes. And I went, okay.

And then one of them and now they're not even quizzes. They're just like, hey. What do you think this or that kind of stuff? Would you rather Yeah. Bees live in your whatever?

Like, that kind of thing. And she says to me he said, here's one. She goes, how many small children do you think you could beat up?

Sandy (1:07:20)

Oh, gosh.

Scott Benner (1:07:21)

And I and I go, how big are they? And she she says, it doesn't say. I'm like, well, that's an important thing here. It is important. So she picks through, and she goes, oh, everybody in here is like, how how old are they first?

And and and she's like, well, why? What do you think? I said, well, I think of a certain age, I could beat them all up. Like but I was like, you know, like I said, once I think they get into 10, 11, 12, they could probably gang tackle you. You know?

They get I mean, that's when

Sandy (1:07:43)

the hormones start hitting, you know, like, third, fourth grade and yeah.

Scott Benner (1:07:46)

Yeah. I I even think maybe enough eight or nine year olds could get ahold of your legs, put you on the ground. But, I mean, you send a hoard of five year olds at me, I think I could come up. You know what I mean? Like, I'm pretty good.

They're little and they don't have a lot of dexterity. You probably just pop them in the head. They go over, like, I would imagine, you know, like bowling pins. So, I mean, I've never hit a child, so I don't know exactly what happens, but you gotta figure it can't be difficult.

Sandy (1:08:08)

Yeah.

Reptiles & Wrap Up

Scott Benner (1:08:08)

Yeah. Yeah. So, anyway alright. Is there anything we haven't talked about that we should have, Sandy? Anything I left out?

Sandy (1:08:14)

No. No. I mean, I, yeah, I mean, I talked about the mitochondrial disease and and my diabetes. I think I've hit everything.

Scott Benner (1:08:22)

Thyroid, diabetes, mitochondrial, little bit of fun in there. I got the whole thing in an hour like it was nothing. I'm a pro.

Sandy (1:08:29)

You are. I was wondering how like, how do you get it all in an hour? Like, I felt like there was so much to talk about.

Scott Benner (1:08:35)

Just gotta know when to pivot. That's all. Yeah. Like, you know, people aren't gonna know this, but you had trouble getting on. Like, I I now I'm realizing it was probably part of your your hearing aids were probably part of the problem when you're first trying to get going.

Right? They're Were they connected to the wrong thing or something?

Sandy (1:08:50)

I don't know. I'm gonna I could not tell you. I don't know. Like I said, technology and me just don't jive, and I just

Scott Benner (1:08:57)

I got to hear Sandy upset before we were doing it. She sounded like Fred Munster when he gets pissed. I don't know. That's a here's a reference nobody's gonna get. And then you said you're a little nervous, and I never said to you the thing that I would have loved to have said you back then, which is I think the podcast is great because people like you who don't even have a microphone and would never normally do something like this are willing to come on and say, hey.

I don't know exactly, but here's what's been happening to me. I think that's way more valuable than someone coming on and spitting out some knowledge that they have that they say over and over again every time somebody points a camera at them or or a microphone at them. So Yeah. I think it's really valuable, and I appreciate it.

Sandy (1:09:34)

Well, I appreciate you letting me come on. I didn't know, like, what your schedule is like or anything. And then, you know, like I said, I wanted to come on because I wanna pass along this information to anybody else that might be dealing with what I'm dealing with, and maybe they'll give them an epiphany. Maybe they can, you know, look into radiant diabetes, get some answers, and then maybe if somebody out there has any answers for me.

Scott Benner (1:09:56)

Yeah. They can reach back to you. Listen. First of all, I record every day. Not to say schedule's a bear, but it it's, very manageable as I am an adult.

And I live in a warm and cool home depending on the year, and I have electricity. So I'm okay. I can make a podcast. I just think that these conversations are really valuable, and I think that, especially with the way things are going now, you know, I I almost see some of these conversations as blog posts in as much as that, like if I asked you to sit down and write this all out, I don't even know if you would have thought to, like I heard

Sandy (1:10:26)

you talking about this before.

Scott Benner (1:10:27)

Yeah. Like, they're just it's it's a collection of information from your perspective. It goes on the Internet, and, you know, all these AI models are all they're doing is scraping the Internet. So let it you know, you're not right about everything, but you are right that this is your experience. So Yeah.

You know, let let people's experiences pile up in in some sort of data record. Maybe it'll help us one day.

Sandy (1:10:48)

I do have a question for you Please. On on the side. So I saw, like, you were building, I guess, your basement, a room, like, for your podcast, and you were talking about a reptile room. Yes. So real?

Scott Benner (1:10:59)

Well, it's not a whole room. For listen. Let's try not to make me sound crazy, Sandy. Okay? But no.

No. I know you love them probably because of your job.

Sandy (1:11:06)

I do. I have reptiles. So that's why when I read that, is for real?

Scott Benner (1:11:10)

What do you have? We have to make this quick or Rob's gonna yell at me that I went too long. But but

Sandy (1:11:14)

We have, I think, three or four snakes, and I have a bearded dragon right now.

Scott Benner (1:11:18)

What kind of snakes? Are they colubrids? Are they what do you have?

Sandy (1:11:21)

I think a rosy boa

Scott Benner (1:11:22)

Mhmm.

Sandy (1:11:23)

A Mexican black king Oh. And I don't remember the other

Scott Benner (1:11:27)

snakes up black kings, they're fat. Right? No?

Sandy (1:11:31)

Not fat long.

Scott Benner (1:11:32)

Long? Six, seven feet?

Sandy (1:11:33)

Yeah. Yeah. They belong to my husband and my kids, but we've had lots of reptiles. So when I when I saw that, I got really excited.

Scott Benner (1:11:41)

Was like, well, I'll tell you what I listen. I'll tell you what I have. What but tell me first about owning a bearded dragon. People who have bearded dragons love them.

Sandy (1:11:48)

They're so easy. I had it's my classroom pet right now, and we've had bearded dragons before. They're super, super easy.

Scott Benner (1:11:53)

Okay. Yeah. And they're is yours friendly? Handleable? Yes.

Sits on your shoulder, that kind of thing?

Sandy (1:11:58)

Yes. I take her out for the kids to touch and stuff. Yeah.

Scott Benner (1:12:01)

Yeah. How does the poop? Not too bad smelling or is it okay? No. No.

Sandy (1:12:04)

Not bad at all.

Scott Benner (1:12:04)

Good. Good. Good. Alright. Here's what I have.

Prepare to be impressed. I have a male Parsons chameleon.

Sandy (1:12:12)

Nice.

Scott Benner (1:12:13)

He's about three years old. He's probably not quite full size, but he's probably tip of his nose, tip of his tail. He's about two feet long.

Sandy (1:12:20)

Okay.

Scott Benner (1:12:21)

He I forget. I haven't weighed him yet this year. He's been he's not he doesn't brumate, but he'd been a little slow over the winter. He really he kinda picked the corner of the enclosure and just hung out for a couple of months. I recently got a yellow tree monitor.

Sandy (1:12:35)

Wow. Okay. I am I'm getting impressed.

Scott Benner (1:12:38)

She's very cool. I'm still she almost tolerates me now, which is nice. I have actually, I'll tell you this because you'll find this interesting. The Parsons chameleon is bred by one of maybe a handful of people in the whole country that breed them, that man's daughter who, has type one diabetes. I have a blue ambanja panther chameleon from Fram's cams, and they have a connection to type one as well.

Sandy (1:13:03)

Oh, wow.

Scott Benner (1:13:04)

This is not something I knew before I bought it from him. He is beautiful, but he's so dumb. It's just like, he has been over top of a cup of crickets for four hours looking at them. Like, just eat one. Like, what do you it's like you with the vitamins.

I don't know what he's waiting for. Just eat the damn cricket. He won't. He'll stare at it for hours, then finally, he'll be like, okay. Fine.

He'll

Sandy (1:13:26)

eat My beardie's afraid of cricket. She'll go to the other side of the tank. So I only give her worms and stuff like that because if I put crickets in, she goes to a corner.

Scott Benner (1:13:34)

She's an adult. She eats vegetables too and all that?

Sandy (1:13:36)

Yeah.

Scott Benner (1:13:36)

Yeah. Yeah. Then I have oh my god. I have a small colony of Tachydromus smaradinos. They're, Japanese grass lizards.

Yeah. And I have a male and female Sri Lankan pygmy lizard. So they're these little tiny very if you Google them, they're very pretty, very cool, ornate. Alright. Really and they breed.

I actually just took two babies back to the breeder who I got them from. He's a friend, and I I give them to him and he, you know, he sells them again. I just like that

Sandy (1:14:07)

Yeah.

Scott Benner (1:14:08)

You know, I don't I don't even ask him for money. I'm just like, here. Just take them. Meanwhile, they're, like, $600 apiece. I should probably ask

Sandy (1:14:14)

him for more.

Scott Benner (1:14:15)

You know, they're endangered, and I know I'm not doing anything to repopulate the world with them. But it makes me feel good when she has the babies and, like, pass them back out to people. The tree monitor is just wicked. Like, that was that.

Sandy (1:14:27)

Monitors are awesome. I like them.

Scott Benner (1:14:30)

My goal would be that in the next two years, maybe she'll willingly go onto my forearm. They are not something you're trying to handle or anything like

Sandy (1:14:37)

that. Right.

Scott Benner (1:14:38)

Yeah. Right. The Parsons doesn't want you anywhere near him. Yeah. Right.

He is majestic. Like, it it's hard to I I I wouldn't know what to do if you told me just to keep one because the the grass lizards are incredibly, entertaining.

Sandy (1:14:54)

You have a nice collection.

Scott Benner (1:14:55)

It is impressive. I have an eclectic collection of lizards as well. Yeah.

Sandy (1:14:59)

We've had more just since the kids have gotten older and life and stuff. Our population of animals have dwindled a little bit. But yeah.

Scott Benner (1:15:08)

Yeah. I'm gonna be looking for a local kid to come by and feed them for me at some point because I'm gonna lose my my my feeder's gonna go off to grad school, and then I'm gonna need to figure out something else for when I go away.

Sandy (1:15:20)

There'll be somebody around who would do it and wouldn't love it.

Scott Benner (1:15:22)

It's nobody in this house. I'll tell you that much. These kids hate these bugs. So and I'll I'll I'll finish embarrassing myself and impressing you by telling you that I I am a I keep a pretty impressive, Dubia roach colony that I've been I've had going for, like, a year and a half. I'm pretty

Sandy (1:15:38)

That is pretty cool.

Scott Benner (1:15:39)

Impressed with myself. But, yeah, there's a box of roaches in here. Nobody try not to think about it. That's what I do. And that's what most of these It's

Sandy (1:15:48)

just like if people who keep rodents and stuff like that and breed them for their snakes and whatnot.

Scott Benner (1:15:52)

Yeah. Yeah. Yeah. Have to. I have to tell you, snakes don't interest me.

Sandy (1:15:55)

My husband loves snakes. That's, like, his passion. He loves snakes. Knows all about snakes.

Scott Benner (1:16:00)

Yeah. I will tell you though that since I've gotten the monitor, I understand people with snakes better because she is basically a snake with four legs. Some like, I look at her. You know what I mean? Yeah.

The Parsons sits around. It's fine. I don't care because he is it there's something about he is majestic. Like, it's the only way I can really put it to you. Like Yeah.

Like, I if he didn't move, I wouldn't care. But watching the monitor run around and the grass lizards do the same thing. The grass lizards are actually lacertas. They're not that that that probably just put me into a different dork.

Sandy (1:16:31)

To look those up. They look pretty they sound pretty

Scott Benner (1:16:33)

interesting. Might have put me to a different dork level saying lacertas just now. But

Sandy (1:16:36)

No. I know what you're saying.

Scott Benner (1:16:38)

So no. Yeah. And I'm

Sandy (1:16:39)

on the same level.

Scott Benner (1:16:40)

And I'll tell you, this summer, I'm actually planning on making a a limited podcast series with the keeper who breeds a lot of this stuff because he's such be cool. Yeah. It'll be it's not for me. It'll be on his own podcast, but I'm I actually think I'm gonna host it and and record it for him because I think his knowledge should be out in the world the way he's really something. Yeah.

So I'm gonna try to help him with that. Anyway, let me get off before poor Rob pulls all of his hair up. You were awesome. Thank you very much. I appreciate it.

Sandy (1:17:12)

I hope it all sounded good.

Scott Benner (1:17:14)

It sounds awesome. You sound terrific. Thank you. Alright. Hold on one second for me.

Okay? Yes.

Closing & Sponsors

Scott Benner (1:17:25)

Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. A huge thanks to US Med for sponsoring this episode of the juice box podcast.

Don't forget, usmed.com/juicebox. This is where we get our diabetes supplies from. You can as well. Use the link or call (888) 721-1514. Use the link or call the number, get your free benefits check so that you can start getting your diabetes supplies the way we do from US Med.

The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year. One insertion? Every year?

Come on. You probably feel like I'm messing with you, but I'm not. Eversensecgm.com/juicebox. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast.

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The Juice Box podcast has been in production since January 2015, and in that time, we have amassed just a fantastic catalog of information for you. The defining diabetes series, Also, bold beginnings, diabetes pro tips, small sips, fat and protein, algorithm pumping, mental wellness, ask Scott and Jenny, diabetes variables defining thyroid, after dark, the math behind Omnipod five, pregnancy, how we eat, grand rounds, cold win, GLP meds, the quick start guide if you wanna get going with the podcast but you don't know where to go, diabetes myths, there's even a type two diabetes pro tip series. All of this is at juiceboxpodcast.com. Go to the menu, click on series, and they can all be found right there. If you go to juiceboxpodcast.com/lists, you'll get all these great downloadable lists of all the the different series so you can save them on your phone, keep them for later.

Every episode is listed along with its episode number. So you can go into Apple Podcasts or your you know, wherever you listen to your audio, and say you wanna hear episode fourteen sixty9, steal a one c overnight from the small sip series. Just go to the search bar, type juice box, one word, and then the episode number fourteen sixty9. It should be the first return you get. Hey.

What's up, everybody? If you've noticed that the podcast sounds better and you're thinking, like, how does that happen? What you're hearing is Rob at Wrong Way Recording doing his magic to these files. So if you want him to do his magic to you, wrongwayrecording.com. You got a podcast?

You want somebody to edit it? You want Rob.

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