#1752 Diabetes Spectrum - Part 1
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Scott talks with Tricia, a longtime healthcare administrator, about missed autoimmune warning signs, “normal” labs masking LADA, and how a system built on checkboxes can fail people who need critical thinking.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner (0:0) Here we are back together again, friends, for another episode of the Juice Box podcast.
Tricia (0:16) Testing. (0:16) Testing. (0:17) Testing.
Scott Benner (0:19) Was Tricia, and she is today's guest. (0:21) And this is part one of a two part episode. (0:23) The next one's coming right away tomorrow. (0:25) Go check it out when you're done with this one. (0:28) Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise.
Scott Benner (0:33) Always consult a physician before making any changes to your health care plan. (0:38) If you'd like to hear about diabetes management in easy to take in bits, check out the small sips. (0:45) That's the series on the Juice Box podcast that listeners are talking about like it's a cheat code. (0:50) These are perfect little bursts of clarity, one person said. (0:53) I finally understood things I've heard a 100 times.
Scott Benner (0:56) Short, simple, and somehow exactly what I needed. (0:59) People say small sips feels like someone pulling up a chair, sliding a cup across the table, and giving you one clean idea at a time. (1:07) Nothing overwhelming, no fire hose of information, just steady helpful nudges that actually stick. (1:13) People listen in their car, on walks, or rather actually bolusing anytime that they need a quick shot of perspective. (1:20) And the reviews, they all say the same thing.
Scott Benner (1:23) Small sips makes diabetes make sense. (1:26) Search for the Juice Box podcast, small sips, wherever you get audio. (1:31) The show you're about to listen to is sponsored by the Eversense three sixty five. (1:36) The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. (1:44) Eversensecgm.com/juicebox.
Scott Benner (1:48) US Med is sponsoring this episode of the juice box podcast, and we've been getting our diabetes supplies from US Med for years. (1:55) You can as well. (1:57) Usmed.com/juicebox or call (888) 721-1514. (2:04) Use the link or the number, get your free benefits check, and get started today with US Med. (2:10) Today's episode is sponsored by the Tandem Mobi system with Control IQ Plus technology.
Scott Benner (2:16) If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm. (2:26) Use my link to support the podcast, tandemdiabetes.com/juicebox. (2:31) Check it out.
Tricia (2:32) It's Tricia, and I'm a 51 year old mom, former health care administrator, currently in, getting a master's in professional counseling.
Scott Benner (2:45) You're a former health care administrator. (2:48) What does that mean? (2:49) What did you do?
Tricia (2:50) I worked for a very large health care system in New York City. (2:58) My last I did many I wore many different hats working for chief executive, like, chief executive nurse as a project manager, you know, sort of chief of staff positions. (3:11) And then the last position I had, ironically, in 2020 was working for workforce or import a lot of places call employee health. (3:25) And so we really were supporting the organization in getting n 95 masks, procedures for calling out of work, getting the vaccine, declining the vaccine. (3:38) So that was a large part of my former life.
Scott Benner (3:41) For a while. (3:42) Would you consider what you did more of the business money side or the medical side?
Tricia (3:49) I did everything. (3:51) So I like you know, you just I'm 51. (3:55) You have a long career. (3:56) So for a while, I worked in supporting operation for one one of the academic medical centers. (4:05) So in that regard, managing budget, you know, helping make sure people get, across the different departments at the lab, emergency department, can fund a new MRI machine, things like that.
Scott Benner (4:19) Mhmm. (4:20) Can you give me a couple of, like, I don't know, like, high level takeaways what it's like for a system to be patient centric health related and basically a retail business at the same time? (4:37) Like, what what what are some of the oddities that come when you mix those two things together?
Tricia (4:42) Well, I think what I saw was big changes in the environment because I started working there in 2007. (4:51) Before that, I had been in corporate working for insurance companies. (4:57) Mhmm. (4:57) Very different. (4:58) And when I first started working there, they were only touting that they were patient centric.
Tricia (5:07) And as time went on, I really saw the organization realize that if we don't treat our employees well, that's gonna trickle down to the patient. (5:18) Okay. (5:19) But then at the same time, you know, I went through, like many organizations, there were times when we had to cut staffing. (5:32) You know, we were very impacted with being over the budget. (5:40) And so it was also you know, there were times that you would realize this is the business, and we're letting go, you know, Jane Doe in department x even though she's really great with patient care, and she's been here for twenty years.
Tricia (5:57) So you see those, you know, ebbs flows, and you see also just a lot of bureaucracy and, you know, that the you know, when you're working with individuals in in a c suite, just really how competitive and, you know, stressful their jobs can be.
Scott Benner (6:18) Mhmm. (6:19) Is a hospital more, a, a doctor's office that has to collect a payment or, b, a business that's selling health care?
Tricia (6:30) I'd go with more the latter, but I do have to say that going through many different leaders, I did have one leader who really always emphasized the patient. (6:45) I mean, really Mhmm. (6:47) Genuinely, earnestly, you know, just, you know, it just really permeated through the organization.
Scott Benner (6:58) And that's what was that people's preference, do you think? (7:02) Like, do you think that when it went more like that, the staff was happier?
Tricia (7:06) Yes. (7:06) Because I think, like I said, I saw I started in the beginning where it was all about patients first, and it was like, who cares about you, the employee? (7:16) Mhmm. (7:16) And when you're when your leader cares about the patient, it's generally also gonna be someone who cares about you. (7:26) So it really changed the whole environment.
Tricia (7:31) It's it's contagious.
Scott Benner (7:33) Have you ever lived through an iteration where really it was it it's about the widget? (7:38) Like, the the the health care is just a widget, and we're just here to, like, put them in people's hands as fast as we can so we can send them a bill for it?
Tricia (7:47) No. (7:47) I think I think what I saw more is, especially when I worked for corporate nursing, is just how bogged down you can get in meeting regulatory requirements.
Scott Benner (8:01) Okay.
Tricia (8:01) So, you know, that you're you're taking all of the, you know, data points about, like, pressure ulcers and, you know, smoking cessation and and how you chart in the MRI, and it just gets so bogged down with you know, the Joint Commission can show up. (8:22) The Department of Health can show up at any time. (8:24) And I was in the command center for which we called which is basically you're helping the organization as the surveyors are going, you know
Scott Benner (8:35) Yeah.
Tricia (8:35) Choosing comb for the organization. (8:37) So I think that can get in the way of, patient care is that you're trying to be sold to the letter of those regulations.
Scott Benner (8:45) Mhmm. (8:46) And then how much of the health care people receive is dictated by their by insurance?
Tricia (8:54) You know what? (8:55) I did not work in revenue cycle, but, you know, it was just an absolutely huge focus of the organization.
Scott Benner (9:07) What would happen I mean, is there a world that you can imagine where it could just go back to, like, the way it was? (9:14) Or is it just too is it all too intertwined at this point? (9:19) And do you I
Tricia (9:21) don't mean, right now, it's very very intertwined. (9:24) And even if I tell my own story, I I think one of the reasons I'm sure that contributed is just the insurance model of why I was not diagnosed with type one fully progressing for over sixteen years.
Scott Benner (9:42) Okay. (9:42) Oh, you had you had Lada and what were you being told it was type two? (9:47) No. (9:48) No. (9:48) What happened
Tricia (9:49) to not
Scott Benner (9:50) Go ahead. (9:50) Tell me. (9:50) My story start at the
Tricia (9:51) beginning. (9:52) Story is unbelievable.
Scott Benner (9:54) Let's find out.
Tricia (9:56) I got Hashimoto's at age six. (10:00) I saw an endocrinologist. (10:02) My numbers you know? (10:04) So I was born in 1974.
Scott Benner (10:07) Mhmm.
Tricia (10:07) So, you know, when I'm in grammar school, you know, they're thinking, okay. (10:14) We just treat you with some and off you go. (10:21) What happened is my number started to look better. (10:25) The doctor the endocrinologist I saw said, okay. (10:29) She doesn't have to take Synthroid anymore.
Tricia (10:31) I think I was about 11. (10:33) My parents were moving from a borough of New York to an another suburb in the Tristate area.
Scott Benner (10:44) Mhmm.
Tricia (10:44) And so my he said, you can just you can take her, you know, to the primary her primary care doctor, and then my body never functions properly.
Scott Benner (10:57) You've probably heard me talk about US Med and how simple it is to reorder with US Med using their email system. (11:03) But did you know that if you don't see the email and you're set up for this, you have to set it up. (11:08) They don't just randomly call you. (11:09) But I'm set up to be called if I don't respond to the email because I don't trust myself, a 100%. (11:15) So one time I didn't respond to the email and the phone rings at the house.
Scott Benner (11:20) It's like, ring, you know how it works. (11:21) And I picked it up. (11:22) I was like, hello? (11:23) And it was just the recording. (11:24) Was like, US med.
Scott Benner (11:25) Doesn't actually sound like that, but you know what I'm saying. (11:27) It said, hey, you're, I don't remember exactly what it says, but it's basically like, hey, your order's ready. (11:32) You want us to send it? (11:33) Push this button if you want us to send it. (11:35) Or if you'd like to wait, I think it it lets you put it off, like, a couple of weeks or push this button for that.
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Tricia (13:21) Functioned properly. (13:23) I had difficulty through puberty gaining weight. (13:30) I would have bouts of constipation. (13:33) My menstrual cycles were extremely irregular and then disappearing, sometimes for eight months. (13:42) I don't you know, I was seeing a primary care doctor.
Tricia (13:46) My own mother was a type one diabetic without much education. (13:52) She herself, at that point when I was a teenager, was going through a lot of high highs, a lot of low lows, a lot of emergency situation. (14:02) I actually, as a teenager, many times had to call 911. (14:06) I saw her turn purple. (14:08) I saw her convulse and start to bite her tongue off.
Tricia (14:11) So here, I have this craziness in my own home, and I march off and my issues keep growing
Scott Benner (14:19) Yeah.
Tricia (14:20) With my menstrual cycle, etcetera. (14:22) So then long story short, around 2011, I start to go to my doctor because I say, hey. (14:32) Starting to get really bad digestive issues.
Scott Benner (14:35) Wait. (14:35) Wait. (14:35) Wait. (14:35) 2011 sounds like twenty four years after they took you off Synthroid. (14:39) Yeah.
Scott Benner (14:39) Okay. (14:40) So
Tricia (14:40) So I go I go off Synthroid and then
Scott Benner (14:43) Have all these problems wait. (14:46) Yeah. (14:46) Hold on. (14:46) Tricia, you go off Synthroid. (14:48) You have all these problems that are easily attributable to not being medicated for your thyroid, and no one goes, hey.
Scott Benner (14:54) We should probably put her back on that Synthroid?
Tricia (14:56) Well, this is what I I think. (14:58) My my pair my mom got diabetes type one when she was 12. (15:06) And think about it. (15:07) It was 1960.
Scott Benner (15:08) Mhmm.
Tricia (15:09) She had very uneducated parents. (15:11) Her mother was, like, a first generation immigrant, and my mother had that mentality. (15:18) So my mother took me to the primary care, didn't ask questions about me, didn't ask questions about myself, except she just said she's thin. (15:27) And I remember the primary was like, is your fan some of your family thin? (15:30) And she said, yes.
Tricia (15:32) And so
Scott Benner (15:32) I was the end of it?
Tricia (15:33) What I yeah. (15:35) What I realized now is, like, we can't look at the care through the lens of now. (15:43) And what happened to me was a perfect storm of an and it shows the impact of type one on the family if there isn't education. (15:54) How? (15:55) So my because my mother would only say this.
Tricia (15:59) You don't have to worry about this. (16:00) You'll never get it. (16:02) You you don't have to worry about this. (16:04) The doctor told us the primary care could just handle you. (16:07) I don't think the primary care literally meant if she starts to have all these issues, you shouldn't bring her back to an endocrinologist.
Scott Benner (16:16) I think Trisha, it it occurs to me that it is so simple that, like I don't know. (16:21) If we threw you in the pool and you started to sink, and we said, oh, no. (16:25) Look. (16:25) She's sinking. (16:26) And someone said, here, give her a piece of Styrofoam to hold on to.
Scott Benner (16:29) And you held on to the Styrofoam, and you didn't sink anymore. (16:31) And then a few years later, they were like, oh, look. (16:33) She's been bobbing around in the pool for a couple of years. (16:35) She's doing good. (16:36) I don't think she needs the Styrofoam anymore.
Scott Benner (16:38) We took it from her, and then you sank again. (16:40) Is the next thought not give her the Styrofoam back?
Tricia (16:45) Well, this is kind of what I'm thinking. (16:46) Right? (16:47) I move. (16:48) I'm seeing new primary care doctors. (16:51) I don't get it.
Tricia (16:52) I'm showing and I still this was then, but I still see elements of it in the health care system.
Scott Benner (17:00) Tell me. (17:01) Tell me. (17:01) Because it's so it's fascinating to me because there had to have been a chart that said you were on Synthroid and then you weren't. (17:06) Somebody had to have read that at some point.
Tricia (17:09) Well, that chart would have been, New York, and it wouldn't have been
Scott Benner (17:15) Oh, it
Tricia (17:15) wouldn't new place I moved.
Scott Benner (17:16) It wouldn't have went with you unless your mom went
Tricia (17:19) Because it was pay it was paper charts. (17:21) So my mom I think the only thing my mom ever did my mom never read about Hashimoto's. (17:27) I remember we had a you know, we're in the information age, so we can get all of this. (17:31) But you have to think, we had a medical book in our house.
Scott Benner (17:34) Okay.
Tricia (17:34) My mom would look at it if we had bronchitis. (17:37) She didn't look up Hashimoto's. (17:38) Mhmm. (17:39) She didn't right? (17:41) Because one of the things I even found in the eighties books was it it can cause irregular menstrual
Speaker 3 (17:49) cycles. (17:49) Right. (17:50) Right.
Tricia (17:50) And, you know, constipation. (17:52) So I'm looking and I'm thinking to myself, oh my god. (17:56) I knew I was different than my friend. (17:58) I was and then the problems are getting worse in my twenties. (18:03) And I'm calling my mother and I'm saying, okay.
Tricia (18:06) Like and she would say things like, I love this. (18:09) That's I guess that's just the way we are. (18:12) I love that. (18:12) That's like a great a a great a great a great old school
Scott Benner (18:18) What what's what's your mind mom's background? (18:20) Is she Italian?
Tricia (18:21) Irish. (18:23) Her mother was first generation Irishman.
Scott Benner (18:26) That's how we are.
Tricia (18:28) Right? (18:28) Yeah. (18:29) So, like, I'm hemorrhaging. (18:31) I'm severely constipated. (18:34) Like, that that's the way we are.
Tricia (18:37) So
Scott Benner (18:37) Mom, the whole the whole where stuff's supposed to come out of, nothing's coming out of it, and the other one's doing the opposite. (18:43) I'm in a lot of trouble here, I'm bleeding a lot. (18:45) And she goes Yeah. (18:46) That's just how we are. (18:47) You were thin when you were little.
Tricia (18:49) No. (18:50) That was the whole
Scott Benner (18:50) thing. (18:51) Right?
Tricia (18:51) And the whole the whole thing, Scott, is that, like, I would have what I realized now is I was having some type of flares. (18:59) Okay. (19:00) Because then maybe the symptoms could get better for six months, and they the solution in the nineties for women, and we're really getting strong women now, is, like, okay. (19:14) Don't just throw me on the birth control pill. (19:16) Why did my cycle disappear when I'm 17 years old for eight months?
Tricia (19:20) My menstrual cycle just that's not normal. (19:23) And then it happened when I was in high school. (19:26) They called me home for I had to go home from college to the doc to the OBGYN, and they knew my cycle had disappeared for eight months when I was 17. (19:37) So they go, oh, we'll just give you a medication, make you ovulate, and then we'll throw you on the birth control pill. (19:43) So it was like no investigation of like, my your my body's screaming, like, hey.
Tricia (19:48) I don't function right.
Scott Benner (19:49) Yeah.
Tricia (19:49) And there's no prevention. (19:52) No no root cause analysis. (19:54) And then I fast forward to my thirties, and I start to get first sign, which I didn't realize now, is I suddenly, I always had beautiful skin. (20:08) I started to get cystic acne when I was about 31 or 32.
Scott Benner (20:14) What what do you And
Tricia (20:15) then the doc oh, go ahead.
Scott Benner (20:16) What do you attribute that to?
Tricia (20:19) And I had a little bit of cystic pimples in my twenties a little bit, so sometimes I wonder so now I know what it is. (20:26) I I'm pretty sure it was, like, a first sign of insulin resistance. (20:33) And then they put me on a drug called, I went to the dermatologist to put me on a drug called spironolactone.
Scott Benner (20:39) Spironolactone. (20:40) Yeah. (20:40) Yeah. (20:41) Yeah. (20:41) Yeah.
Tricia (20:41) Spironolactone. (20:42) That was
Scott Benner (20:42) a big one back then. (20:43) Yeah.
Tricia (20:43) It makes you pee pee. (20:46) By the time I was 33, I'm starting to pee more. (20:49) I think it's the drug. (20:50) I think it's the drug from the because I had a reaction right away to taking it, to peeing more.
Scott Benner (20:56) Mhmm.
Tricia (20:57) So I start to get nocturia. (20:59) Then I'm in grad school. (21:01) I'm working for a chief executive. (21:03) I'm going to NYU at at at night. (21:08) I have a very demanding job.
Tricia (21:11) At first, my job's in New Jersey.
Scott Benner (21:13) Tristan, can I stop you for a second?
Tricia (21:15) Yeah. (21:16) Is
Scott Benner (21:16) your alarm going off somewhere?
Tricia (21:19) Oh, yeah. (21:20) Hold on. (21:20) You can hear that? (21:21) Yeah. (21:21) I'm take gonna get it.
Tricia (21:22) Thanks.
Scott Benner (21:26) Guys, I put a new rock in with one of my geckos. (21:28) He's climbing all over it. (21:29) It's feeling like a good purchase.
Tricia (21:31) So so
Scott Benner (21:33) then What was that alarm for, by the way?
Tricia (21:35) Oh, that's not for anything important.
Scott Benner (21:37) You don't wanna tell me?
Tricia (21:39) For us. (21:40) No. (21:41) For us. (21:41) I usually I take medication, but I I already took it.
Scott Benner (21:44) Okay.
Tricia (21:44) So fast forward before. (21:47) Anyways,
Scott Benner (21:48) spironolactone, peeing a lot, thirties. (21:50) I got you. (21:51) Go ahead.
Tricia (21:51) So, yeah, so I go on spironolactone. (21:54) I start to pee a lot while I'm on it. (21:57) It's controlling my acne, but I noticed I already have I always have heavy menstrual cycles, but now they're off the hook. (22:05) It's like, I went from five or or or, you know, my whole life of being, like, on a scale of, like, one to five, like, being too heavy, maybe, like, five, six. (22:14) Mhmm.
Tricia (22:15) So, like, now I'm, like, an eight. (22:17) I feel like I have the flu every time I get my period. (22:20) So I'm going to the OBGYN. (22:24) I start to get more and more constipated. (22:27) I get married.
Tricia (22:28) I go for fertility treatments. (22:32) They tell me, like, I have polycystic oh, no. (22:35) They told me I had a lot of I don't think at that point I got got diagnosed with PCOS. (22:40) That came later. (22:42) But, so I'm trying to get pregnant.
Tricia (22:46) I'm surveilled all the time. (22:48) They're always taking blood.
Scott Benner (22:49) Mhmm.
Tricia (22:50) Okay? (22:51) Nothing's showing up in terms of my glucose being out of whack, but no one's giving me an a one c. (22:59) My primary never gives me an always a one c in my twenties despite family history. (23:05) My new doctors don't give me an a one c because I'm 45 even though I have family history. (23:14) I go to the primary care back in New Jersey because I'm getting more and more abdominal pain and more constipation.
Tricia (23:23) And I say to him, I'm urinating too much at night. (23:26) I'm like, what could it be? (23:27) I've got all these problem. (23:29) Gynecological. (23:30) You're you're you know?
Tricia (23:32) He goes, I don't know what to tell you. (23:34) He's like, I just go to a woman's doctor about that. (23:38) He treats my mother, who is a type one diabetic who, we can get to this later, only lives for seventy six. (23:47) We lost her last year because she had a kidney pancreas transplant. (23:50) She also was legally blind.
Tricia (23:52) Okay. (23:52) So he's treating her
Scott Benner (23:54) Not well.
Tricia (23:54) But never gives me an
Scott Benner (23:57) And they won't
Tricia (23:58) see you test. (23:58) Yeah. (23:59) Never. (23:59) Yeah. (24:00) And I've been seeing him since my twenties.
Scott Benner (24:02) When you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time? (24:10) I love the warm up period every time I have to change it? (24:13) I love that when I bump into a door frame, sometimes it gets ripped off. (24:16) I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. (24:20) No.
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Tricia (25:03) Hey. (25:04) So then Go ahead.
Scott Benner (25:05) Let me stop you for a second. (25:06) I feel like your voice has gotten farther away. (25:08) Is there a way that we can change? (25:10) Like, is the is your hair covering the headphones, anything like that?
Tricia (25:15) Okay. (25:15) There.
Scott Benner (25:15) Okay. (25:16) Thanks. (25:16) Yeah. (25:16) Keep your hair off the headphones. (25:18) So yeah.
Scott Benner (25:19) So this guy's treat I'm I'm gonna make air quotes around treating your mom. (25:22) He's treating her right into seven horrible complications including blindness and and
Tricia (25:26) Oh, yeah. (25:27) Yeah. (25:27) And she's And a lot of that had started, you know, way before her way before even him, but he didn't I don't know how much he helped.
Scott Benner (25:36) And when you and when you asked him for help, he said, you gotta go find one of those lady doctors.
Tricia (25:41) Yeah. (25:41) And then he said, why are you still coming here? (25:43) You should go in New York. (25:46) And this guy was treating my dad, my brother, and my and my mom. (25:51) Mhmm.
Tricia (25:51) So, you know, I think back in the day, sometimes you really did have that old school family doctor who's like, let me I can keep an eye on this whole family. (26:00) Not him.
Scott Benner (26:01) When you saw your mom, like, struggling, you didn't think, like, is this really the doctor I wanna go to? (26:06) Like, how does that occur to you? (26:07) Because I'm
Tricia (26:08) No. (26:08) We you have to think it's a different time, and we each have her own family culture. (26:14) So my mom's never make not an educated person on type one diabetes, not educated by her parents. (26:22) She said she read a book about type one when she was younger in the library, got scared because it told her in the nineteen sixties that she would be dead by her forties. (26:33) So she you learn my mom's famous expression of what you call it, the apple doesn't fall far from the tree.
Tricia (26:41) So I always look at my story as the perfect interaction between a family that is not talking about the, type one diabetes. (26:54) It's not vigilant, you know, about it. (27:00) And then you have the interface with a nonprevented preventative siloed health care system.
Scott Benner (27:08) Okay. (27:09) How much better do you think so access to information obviously has changed a lot over your your lifetime. (27:16) But do you think it's using your your professional background and your personal experience, do you think it's where it needs to be, or do you just think it's better?
Tricia (27:25) I think from working in the hospital, I love the story. (27:28) They put all the alarms to say the when the page you know, on different pieces of equipment that are in a room with the patient. (27:37) Mhmm. (27:37) So then the nurse nurses or clinicians stop hear them so much that they start ignoring them. (27:43) My husband and I almost fell over when we looked at my chart, my online medical record.
Tricia (27:54) When I because I then started to seek care in New York, and it type one mother, paternal grandmother had Graves'. (28:01) Mother had hypothyroidism. (28:05) Paternal aunt has what is it, hyperthyroid.
Scott Benner (28:10) Oh, yeah.
Tricia (28:11) Father has, some type of autoimmune. (28:15) My dad has some type of autoimmune arthritis.
Scott Benner (28:19) RA? (28:20) Like So He had RA maybe?
Tricia (28:22) He's get it. (28:23) He gets so many different diagnosis.
Scott Benner (28:26) Mhmm.
Tricia (28:26) It's not even funny. (28:28) He he's been told he has five different types of arthritis.
Scott Benner (28:30) Irish too, by the way?
Tricia (28:33) So my father had better health when he was young younger. (28:37) He's more of a mutt, but he does have some Irish
Scott Benner (28:41) Yeah.
Tricia (28:42) On his father's side.
Scott Benner (28:43) It because it sounds like what's wrong with your family is pasty white European.
Tricia (28:48) Well, my brother and I joke. (28:50) What I see with my mom's family is it was too much of the same ethnicity over and over and over. (28:58) And when I look at my dad's family, like, he and his brothers had pretty good health and his mother and paternal and his his mother and his father were
Scott Benner (29:09) more of
Tricia (29:09) a mix together. (29:10) And my dad but my dad's mother with the Graves, she was, like, all Austrian, and there came from Pencil some area in Pennsylvania, and there wasn't a lot of heterogeneity. (29:22) Truly. (29:22) I I
Scott Benner (29:24) yeah. (29:24) I have to tell you. (29:25) I'm like I I think I've talked around this a million different ways, not on purpose, but you're the first person that kinda put their finger on it before. (29:31) Like, you're having purebred problems. (29:34) You're having, like like, you know you know, when you, like, when you say, like, you buy a puppy and they and eventually, like, you know, people say, oh, like, you know, I bought a mutt.
Scott Benner (29:42) It it thing's always healthy, but I got a I got a purebred, and it's got all these different problems because you're keeping the line too tight, and the problems breed too.
Speaker 3 (29:50) That's interesting. (29:51) Oh, yeah. (29:51) No.
Tricia (29:52) I see so many autoimmune. (29:54) My mom's, like, even in her, like, they'll be my second cousins, her first cousins,
Scott Benner (29:59) and
Tricia (29:59) so on and so forth. (30:01) And I'm like, yeah. (30:02) It's like a lot of but not a not a I I'm an avid reader. (30:06) I I remember listening to a podcast in the royal family that they all started to get, like, super messed up and have what is it? (30:13) One of them had hemophilia.
Tricia (30:14) It's like, yeah, not not enough diversity.
Scott Benner (30:17) They can look a little inbred sometimes too. (30:19) How about that?
Tricia (30:20) Yeah. (30:20) Yeah. (30:20) Yeah. (30:21) Like, a little not enough diversity. (30:23) And some of it's I mean, like, a lot of it's, like, stories of the royal family going back way, way, way.
Scott Benner (30:28) Yeah. (30:28) No. (30:29) I understand.
Tricia (30:29) Yeah. (30:30) So
Scott Benner (30:31) Well, I saw Game of Thrones too. (30:32) I know what's up. (30:35) Yeah. (30:35) But I know that's fictional in case people are like, oh god. (30:38) I think he thinks that's real.
Scott Benner (30:39) I know it's fictional, but I think the idea is there. (30:42) Right? (30:42) Like, you just Yeah. (30:43) Yeah. (30:44) Yeah.
Scott Benner (30:44) Well, anyway, because my point is that you hear a lot of these celiac thyroid, diabetes stories out of, like, England, Scotland, like, that kind of area around there.
Tricia (30:55) Yeah. (30:56) And you have to think, like, my brother did not end up getting it and his the y chromosome from my dad was, you know, protective, and I got hit on both with endocrine issues because my dad's mother had Graves'. (31:11) And I think that what I read is, like, they're you need an expert to weigh in on this. (31:16) They're I always look at it the same way. (31:18) Something with the HLA type one and Graves are I they're almost like attached houses.
Tricia (31:25) Okay. (31:25) Like, if you had two houses in a neighborhood that were attached, and then I think a lot of things, like my mom I was told my mom had very high sugars when she was pregnant with me. (31:35) They didn't think I was gonna make it. (31:38) Know, I was a a c section. (31:40) And when I was born, my mom was very sick.
Tricia (31:43) All these things. (31:44) Antibiotics when I was little. (31:46) So, you know, it's it's tons of factors from the environment that program the the stuff to turn off.
Scott Benner (31:55) Yeah. (31:55) They make the decisions. (31:56) So you live in a community. (31:57) The doctors all do the same things. (31:59) People have the same and so you're saying, like, even, like, as an example, like, I had lot a of antibiotics when I was little, and who knows what that did to my immune system long term?
Tricia (32:07) Yeah. (32:08) Yeah. (32:08) It wipes your microbiome.
Speaker 3 (32:09) Like, you know, there's a lot of theories now, and
Tricia (32:11) I'm not the expert. (32:13) But, like, I can see that everything that could go wrong, like, went wrong. (32:19) And even, like, when I probably I believe that I was experiencing symptoms early symptoms of Lada. (32:29) And my doctor actually said he's like, listen. (32:31) They can call it whatever they want.
Tricia (32:33) You're one of the slowest progressing type ones I've ever seen. (32:38) Right. (32:39) Now I say that with a grain of salt because we don't have data on me. (32:43) We don't have the a one c from, you know, around the time that it first happened.
Scott Benner (32:49) Yeah. (32:49) But you live you live through it. (32:51) You know your situation. (32:52) Also, you've said twice now I'm not the expert. (32:54) First of all, this is a podcast.
Scott Benner (32:56) So we you don't need to be an expert. (32:59) You're just sharing your experience. (33:00) Also, you've told a lot of stories about how experts didn't seem to know what they were doing. (33:04) So I I see the value in you just laying out what happened to you so that someone else can maybe pick through it and go, oh, that stuff's happening to me too.
Tricia (33:13) Well, I'm here to advocate for the like, I just got a newsletter from a large academic medical center, and it said there's only type one and type two. (33:26) People are not speaking about the fact that
Scott Benner (33:30) Your voice disappeared again, Trisha. (33:32) Did your did you cover the mic?
Tricia (33:34) No. (33:34) Hold on.
Scott Benner (33:35) No. (33:35) I'm sorry.
Tricia (33:36) Can you hear me?
Scott Benner (33:37) Yeah. (33:37) You just got farther away. (33:38) I don't know what happened.
Tricia (33:39) Okay. (33:39) Alright. (33:40) I don't know. (33:40) I'm adjusting them away from my hair. (33:42) Is that better?
Scott Benner (33:43) Maybe. (33:44) Make sure it's closer to your mouth.
Tricia (33:46) Okay. (33:49) Is that good?
Scott Benner (33:50) I mean, good's a relative term. (33:51) We got Rob. (33:52) He's gonna juice you up and make you sound better. (33:53) But I when you start disappearing into the fog, then I say something usually.
Tricia (33:57) No. (33:58) That's good. (33:58) Okay. (33:59) Okay. (33:59) Am I still disappearing?
Scott Benner (34:00) No. (34:01) No. (34:01) Go ahead.
Tricia (34:01) What what happened for me or why I'm doing this is because people do not know you can have diabetes and have a normal fasting blood sugar. (34:13) You can have you can get start to get type one diabetes and have a normal a one c. (34:21) It there is not just, like, a perfect, you know, diabetes can be a spectrum, and it is not getting enough PR. (34:30) You need to get the message out because I went to a doctor in 2016. (34:36) I was desperate.
Tricia (34:38) I could no longer eat. (34:40) I had lost so much weight. (34:42) I was shaking. (34:44) I was so weak. (34:45) My periods were crazy.
Tricia (34:47) My my iron stores I I think my hemoglobin was 7.8. (34:52) My iron my ferritin was, like, two. (34:55) Okay? (34:55) Which is just basically I had no iron in the bank. (34:58) Yeah.
Tricia (34:59) And when you don't have any iron
Scott Benner (35:01) No. (35:01) I feel like
Tricia (35:02) you have mono.
Scott Benner (35:03) I've had low ferritin in my life, and it's horrifying.
Tricia (35:06) No. (35:06) It's horrible. (35:07) Yeah. (35:08) So I couldn't use my brain. (35:10) I said I had brain fog.
Tricia (35:11) So I go to an endocrinologist based on a referral. (35:14) My primary in the city is really not doing anything for me. (35:19) I'm going from gastrointestinal doctor to gastrointestinal doctor. (35:25) They do colonoscopies. (35:27) They don't do a motility test.
Tricia (35:29) I didn't realize I needed a motility specialist because long story short, I don't know anything about GI, you know, the the specialty. (35:39) And I'm thinking my primary care does, and I was pushing her. (35:43) And after seeing five of them, I said to her, I constantly asked you if my TSH is okay because of my family history. (35:50) I said, let's send me for a full endocrine workup. (35:54) And I was confused because when I had been going for fertility fertility treatment in 2011 and 2012, I was seeing a reproductive endocrinologist who's running a ton of things on me.
Tricia (36:05) So I I said, something's this is I'm desperate. (36:10) So I go to the endocrinologist. (36:12) She says, maybe I'm gonna find something. (36:14) My blood work comes up. (36:16) I had just started maybe four months before a low carb diet because I had been diagnosed with FIBO.
Tricia (36:28) That was my one success out of going to five gastrointestinal doctors.
Scott Benner (36:33) They found out your gut your gut biome was messed up.
Tricia (36:37) Yeah. (36:37) They're like, you have really you have the start of SIBO. (36:41) Like, I I and I had a decent number, not super high. (36:43) Mhmm. (36:44) So then I so I'm diagnosed with SIBO.
Tricia (36:50) I'm on the SIBO diet. (36:52) The doctor takes out a long sheet, the gastrointestinal, and he's like, eat this. (36:57) Don't eat this. (36:58) It's like it gives me a handout. (37:00) So I'm like, oh, maybe I'm gonna, with antibiotics, get get rid of this thing.
Speaker 3 (37:04) Yeah. (37:04) Sourkraut. (37:05) Endocrinologist. (37:06) Right? (37:07) Yeah.
Scott Benner (37:07) I tell you gonna save me.
Tricia (37:10) That's well, that's what you think, especially if your physician is handing you
Scott Benner (37:14) I hear you.
Tricia (37:16) Like, five page recipe. (37:17) Like, eat this. (37:18) Don't eat this. (37:19) I mean, it was, like, crazy. (37:20) Mhmm.
Tricia (37:21) So then the endocrinologist tests my blood. (37:25) She calls me at work, and she goes, you've got a GAD antibody reading. (37:29) She goes, you might have type one. (37:32) And she says to me on the phone, but your a one c and glucose were in the normal range. (37:42) Maybe it's your low carb diet.
Tricia (37:45) I, you know, have a nervous breakdown at at my office at 05:00. (37:50) I'm like, holy crap. (37:51) I have type one diabetes. (37:53) So I have my coworker who's a nurse takes my blood sugar at odd weight. (37:59) Like, I'm in the, like, eighties or something.
Tricia (38:01) Mhmm. (38:01) Like, the high eighties. (38:04) I then go to the next appointment because she said, let's do lab let's go let's just do let's do labs and an adrenal deficiency test. (38:14) So I do that, and everything comes back the same. (38:17) You wanna know what I was?
Tricia (38:19) 97. (38:21) I was in the nineties on my glucose, and my a one c was 5.4. (38:27) Now I had been a runner, and I probably because I worked in New York City, I I had an iPhone, and then I got the watch. (38:38) I walked between 10,012 steps frequently.
Scott Benner (38:44) Yeah. (38:44) No. (38:44) If you're in the city, you're walking constantly. (38:46) Right.
Speaker 3 (38:47) Right? (38:48) Mhmm.
Tricia (38:48) Right? (38:48) So all this doctor does is re redo the blood the labs, and doctors have told me the actual process and processing time generally will make your glucose appear like your your regular fat you know, fasting glucose. (39:05) It could like, 10 lower than it is. (39:07) I've had, like, four or five doctors tell me that. (39:10) You can look it up on the Internet.
Tricia (39:12) So, like, if you get a reading on your lab that was 95 or nine you know, mine was, like, 97, you really could be, like, a 110, a 120.
Speaker 3 (39:22) You know? (39:22) Mhmm.
Tricia (39:23) So she goes, oh, I thought he was gonna find something here, but I I didn't find anything. (39:31) And I said, well, do I should I, you know, come back? (39:35) And she said, no. (39:36) No. (39:37) No.
Tricia (39:37) He's like, I don't know. (39:38) She's like, you have to go investigate what's going on with you, you know, back with a GI doctor or someone else. (39:45) So based on the second lab results, she says you know, I call my parents. (39:51) And now I look back. (39:52) I'm like, how dopey that my own family didn't say, hey.
Tricia (39:57) We've got a glucose sticker.
Scott Benner (39:59) Why?
Tricia (40:00) Well, you know, I'm living apart from them. (40:01) I'm living apart from them. (40:03) Yeah. (40:03) And and I think part of it is too and we'll put this to the side for a minute. (40:08) Psychosocially, type one has such a impact on the family, especially when the family you know, my mother suffered so many complications.
Tricia (40:20) So sometimes I think there was weird psychological component to all of this.
Scott Benner (40:26) But What what do you mean?
Tricia (40:27) Sometimes be on her way.
Scott Benner (40:28) Wait. (40:28) Stop. (40:29) Meaning Yeah. (40:30) Like, that everybody's just, like, a little dazed from this life?
Tricia (40:35) I that my mother didn't want to see it.
Scott Benner (40:39) She didn't want you to have the thing she had that she didn't even understand.
Tricia (40:43) Right. (40:44) And that she got so many complications from. (40:46) So it was like, let's not I don't think it was on a conscious level. (40:51) I think the same thing for me because my my first of all, when you hear bad news, you need I learned a long a hard lesson. (41:01) I always bring my husband with me now to appointments
Scott Benner (41:04) Mhmm.
Tricia (41:04) Because you have, like, an out of body experience. (41:08) And you might have experienced that with your own daughter. (41:10) Like, when you're first told, you kind of, like, need someone to keep your feet on the ground because you're levitating. (41:18) Levitating. (41:19) And I didn't really have that person to be logical.
Tricia (41:24) And then I think my family was acting the same, was a little bit like like that as as well. (41:30) And, of course, there's, what do they call it? (41:32) White coat syndrome. (41:33) So you'd like you you're
Scott Benner (41:35) like You think the doctor yeah. (41:37) You think the doctor knows everything, so you don't say anything. (41:39) I take notes during, like, I just pull up my note app, and I jot things down as people are talking.
Tricia (41:44) Like I go with a notepad Yeah. (41:46) To scare them sometimes. (41:48) So now to intimidate them
Scott Benner (41:50) if my
Tricia (41:50) my husband always comes with it. (41:52) But if I go alone Trish
Scott Benner (41:54) I'm like Yeah. (41:55) Trish, let me say something. (41:56) You've been talking for a half hour. (41:57) Right? (41:58) And Mhmm.
Scott Benner (41:59) What I hear is that you've intersected a number of doctors who have done tests on you, looked at numbers on paper, and if the numbers on paper didn't tell them what to do next, they didn't know what to do next.
Tricia (42:10) There was no critical thinking. (42:12) Yeah. (42:12) If my new endocrinologist said, she needed to react to that dead antibody, use critical thinking.
Scott Benner (42:19) Trisha, hate your mic. (42:20) Trisha, Trisha, I hate your microphone. (42:22) I hate it. (42:22) What can we do? (42:24) You just, like, you just it sound like you're underwater there for a second.
Tricia (42:28) Oh, really?
Scott Benner (42:29) Yeah. (42:29) And then it's
Tricia (42:29) How is it now?
Scott Benner (42:30) And it comes back. (42:31) It comes and goes. (42:32) I don't know what to say.
Tricia (42:34) Oh, I wish I'd known I would have bought something good
Scott Benner (42:36) for it. (42:37) More reliable than your doctors, but it's not great.
Tricia (42:41) Isn't that true? (42:42) Isn't that true?
Scott Benner (42:43) But but
Tricia (42:44) I I think that's my friend who's a physician said some doctors are just, like, book smart, and they're very trained to just look at labs, and then they just, like, won't take
Scott Benner (42:52) Will you do some kind of Will you do something for me? (42:55) Will you go get your Yeah. (42:56) Will you get your AirPods for me?
Tricia (42:58) Yeah. (42:58) Yeah.
Scott Benner (42:59) Okay. (42:59) Alright. (42:59) I'm just gonna sit here. (43:00) I'm gonna talk to the people while you go. (43:04) Hi, everybody.
Scott Benner (43:05) So as you may or may not know, I have these little geckos, and they live in, like, a a hot environment, very a dry, hot environment in a tank. (43:17) And I had this big, like, rock for them to, like, bask on under the under the light where they stay warm. (43:23) And I thought, I think they need more rocks. (43:27) So I, I got some more rocks, and I put them in there now. (43:29) And they are just having a little party on these rocks today.
Scott Benner (43:32) It's making me think, I hate this because I love this one plant that's in there. (43:37) Maybe I should pull that plant out and just put more rocks in. (43:41) Maybe they just love the rocks more. (43:43) You know what mean? (43:44) I mean, you don't know because you're not here, but but the plant looks nice.
Scott Benner (43:49) I can I could probably take that one out, leave that one in, and put a bunch more rocks over there, and then replace that slate with the other? (43:56) It looks so much more natural, the other rock I got too. (44:00) They look so happy. (44:03) I bet you they don't think about their endocrine issues. (44:06) Actually, one of them died.
Scott Benner (44:08) Nothing. (44:09) Just, you know, laid an egg one day and then looked at me and was like, and then and she was gone. (44:14) But the others are doing good. (44:15) They live in a little trio. (44:16) Two ladies and a boy.
Scott Benner (44:17) It's a very progressive, very seventies, very three's company, if you know what I mean. (44:22) And oh, I hadn't thought about that. (44:24) Should I name the male Jack Tripper? (44:27) And then what would the other one be? (44:29) Oh my god.
Scott Benner (44:29) It's Janet and Chrissy. (44:31) Right? (44:31) I'm gonna name my geckos Jack, Janet, and Chrissy. (44:34) But then if I bring in another one, what do I do? (44:37) If I run another male, I could call Larry or mister Roper.
Scott Benner (44:41) Does anyone remember this TV show besides me? (44:44) And she's been gone for a while. (44:45) You think she's okay? (44:47) Tricia? (44:50) Anything could happen.
Scott Benner (44:51) She could've fallen down the stairs. (44:52) Yeah. (44:52) Nope. (44:52) No. (44:53) She's back.
Tricia (44:53) No. (44:53) I'm here. (44:55) Hold on. (44:56) I'm just trying to add the the thing. (44:59) I don't
Scott Benner (44:59) know what time. (45:00) Everything's fine. (45:01) Don't panic. (45:01) I think you have a lot of important things to say, I wanna make sure people hear them.
Tricia (45:06) Yeah. (45:06) No. (45:07) Okay. (45:08) Here we
Scott Benner (45:08) Your experience is very valuable. (45:12) I have a lot of I have a lot of questions too.
Tricia (45:14) It's been frustrating because you feel like you're I mean, you
Scott Benner (45:19) are would imagine. (45:20) Also, you're in your fifties and TikTok. (45:22) You know what I mean?
Tricia (45:24) Oh, yeah. (45:25) And then I'll tell you what happened to my body.
Scott Benner (45:27) Well, hold on. (45:28) We'll get to it. (45:29) Don't you worry. (45:30) But for so do you have those headphones on now? (45:34) The AirPods?
Tricia (45:35) Know what. (45:35) Okay. (45:36) Why I'm trying to add my device. (45:39) I have, like, the new AirPods.
Scott Benner (45:42) You like to you like to jump out of this completely, come back in through your phone wearing the AirPods?
Tricia (45:48) Yeah. (45:48) That's good.
Scott Benner (45:49) Do that. (45:50) Drop drop out. (45:51) I'll let you back in.
Tricia (45:53) Okay. (45:53) Bye. (45:53) Alright. (45:54) Bye.
Scott Benner (45:56) Technology, my friends. (45:59) She didn't drop out. (46:01) I'm gonna kick her. (46:03) Give her the boot. (46:05) Let's see what do I do here.
Scott Benner (46:08) Remove? (46:10) Tricia, I'm removing you. (46:12) Come back in through your phone on the same link. (46:15) She's gone. (46:16) Knocked her right out.
Scott Benner (46:17) Bam. (46:18) Just like that. (46:20) Boom. (46:21) Shocking. (46:23) Listen.
Scott Benner (46:23) I don't know if this part's gonna stay in or not because I don't do the editing anymore. (46:27) But this lady's story is super important. (46:30) You guys really gotta listen through what she's saying. (46:34) There's a big picture situation here that you're all on some level living through and you don't realize it. (46:41) And maybe it works out for some of you, but for some it's not going to.
Scott Benner (46:45) Truth is is thirty years ago, if she would've had like a low level GLP medication, it would've put off her onset even longer, would've kept her insulin resistance down. (46:54) She probably wouldn't had a ton of these problems, would've helped her with those PCOS that she hasn't really gotten to yet. (47:00) And here she comes back. (47:03) Let us all pray for loud noises when we hear her voice. (47:06) Tricia?
Speaker 3 (47:07) Okay. (47:08) I'm here.
Scott Benner (47:08) My god. (47:09) That's so good. (47:10) Leave it like that. (47:11) Dear I
Speaker 3 (47:12) have the new AirPods. (47:13) I don't know how the Air can cancelling
Scott Benner (47:15) Fancy work.
Speaker 3 (47:16) Hopefully, it's better.
Scott Benner (47:17) No. (47:17) It's beautiful. (47:18) When we set it up, if you would've told me you were a fancy lady, I would've said just wear these or
Tricia (47:21) a jacket.
Scott Benner (47:22) So I was just telling the people listening while you were gone, I told them about my my sand geckos, but I also told them about I also told them about I
Tricia (47:32) thought I heard something. (47:33) Yeah. (47:33) Yeah.
Scott Benner (47:33) Yeah. (47:33) They're lovely. (47:34) But I also told them how important your story is because I think that you were just experiencing a mass amount of something that everybody with type one or other autoimmune issues is experiencing on some level, which is that there is a not a complete understanding of what is happening to you, but we treat it like we have a complete understanding of it. (47:56) And then you start having secondary issues, and maybe they're not all gonna be as bad as yours. (48:01) Right?
Scott Benner (48:01) Because you have a bunch of stuff that's layered on top of each other. (48:03) It becomes debilitating. (48:05) But everybody's got something like this going on. (48:07) I just had a conversation with one of Arden's friends this weekend who has type one, and she's having problems. (48:14) She can't figure out what it is, and she asks a doctor and they don't know.
Scott Benner (48:17) Or every woman who has a problem with their period, they just throw a birth control pill at you, and that either helps or it doesn't. (48:22) Or people say to you, like, let's run a thousand tests. (48:25) Let's stick this pipe up your ass. (48:26) Let's do all this other stuff. (48:27) Oh, nothing here.
Scott Benner (48:29) Sorry. (48:30) Sorry. (48:31) I'm still sick. (48:32) And they go, no. (48:34) I don't know.
Scott Benner (48:35) And and, you know, the number on the page, like, you know, how many people have a TSH of three and four and five and a doctor's telling them that's fine. (48:44) That's in range. (48:45) And meanwhile, you have 17,000 hypothyroid symptoms, and nobody will give you a Synthroid.
Speaker 3 (48:51) Oh, yeah. (48:51) And I forgot to advise that when I was going for fertility treatments so, like, oh, you have endometriosis. (49:00) So inflammatory. (49:02) Right? (49:02) Like, total it's showing my whole immune system is not
Scott Benner (49:07) You guys you properly. (49:09) We all have like, I'm gonna throw myself in there too because my kid has type one and my other kid has Hashimoto's. (49:14) And, like, there isn't a level of inflammation existing in us, like people living with autoimmune, that is just higher than the average than the general population, and it makes stuff not work.
Speaker 3 (49:27) And it My brother has low level issues. (49:32) So and we just I made him put on a CGM, and he just caught that when
Tricia (49:36) he eats white, he cannot look at
Speaker 3 (49:38) a white carb. (49:39) He goes well over two two hundred even though he hasn't had the antibody attack. (49:43) And he had severe cystic acne when he was a teen, which now I'm reading can be part of a metabolic, you know, profile. (49:53) And my brother's sons has severe food allergies, and he his a one c or some of his sugars came out a little funny. (50:03) He's on thyroid for Hashimoto's.
Speaker 3 (50:05) It's like
Scott Benner (50:06) Yeah. (50:07) Yeah. (50:08) Problem. (50:08) And nobody understands it is is my point. (50:10) And you don't you don't understand it till you've lived with it for so long that you just you've seen it come at you from so many different angles that you're like, oh, that makes sense now.
Scott Benner (50:18) Like, it doesn't make total sense, but I understand where it came from. (50:21) And I it it's just it's not it's not a broken bone. (50:25) You're not gonna go to a doctor and they're actually gonna my god. (50:27) Your your fibula is broken. (50:28) We will put a cast on that, and it will be better later.
Scott Benner (50:31) Like, it's it it just doesn't work that way. (50:33) And people don't have the expertise. (50:35) They don't have the experience. (50:36) They lean on lab values that they don't understand that apparently don't even have to be right, because it's not a perfected system either from what you were saying earlier about glucose. (50:47) And so, you know and now it's is it fair to them?
Scott Benner (50:50) It's not. (50:51) But what happens at the end of that of the rainbow, you don't get a pot of gold. (50:55) You get like, you slid off the rainbow, we don't have any answers. (50:58) So just keep walking, and good luck, and maybe you'll well, you're gonna die. (51:02) But, like, yeah.
Scott Benner (51:03) That yeah.
Speaker 3 (51:04) That's it. (51:04) Scott, these are the things I was told. (51:07) I had a male physician who stood over me who was a GI doctor, and he said, well, you don't have cancer after a colonoscopy. (51:17) And then I went
Tricia (51:17) to his office after, I
Speaker 3 (51:20) said, I'm still having severe digestive issues. (51:23) And he goes, I don't know what to tell you. (51:25) Do you think it could all be in your head? (51:27) Do you think it could just be
Scott Benner (51:29) They told
Speaker 3 (51:30) me psychological?
Scott Benner (51:31) My wife right? (51:32) My wife's thyroid exploded after she had Arden, and that's not a technical term. (51:37) And but but it's But I like it. (51:40) Is what happened. (51:41) And and they they they everything.
Scott Benner (51:44) You should exercise more. (51:46) She says nothing's changed about my exercise. (51:48) Well, you're you should eat differently. (51:49) Nothing's changed about how I eat.
Speaker 3 (51:51) Oh, should do this. (51:52) My diet. (51:52) The doctor with the diet.
Scott Benner (51:54) And then and then when that stuff didn't work, they said maybe you're depressed. (51:57) And she's like, I'm not I'm not depressed. (51:59) Like, I just and everything. (52:01) So then at some point, get so desperate. (52:03) She's like, she tried depression medication for a while for her thyroid problem.
Scott Benner (52:07) Like, right
Speaker 3 (52:08) I I I totally believe it. (52:10) And
Scott Benner (52:11) She came to me one day, and she goes, I'm taking this thy this medication for I'm not depressed. (52:15) Like, this is ridiculous. (52:16) And I was like, great. (52:17) And seven years, seven years it went on until, by the way,
Speaker 3 (52:21) it was just Yeah. (52:22) 1100%.
Tricia (52:24) Yeah. (52:24) 16. (52:25) Yeah.
Speaker 3 (52:25) Out of sixteen years.
Scott Benner (52:27) And and, Trisha, in that time, my wife, she gained an unfair amount of weight that was from not having thyroid medication. (52:33) You know, it it plagued her for most of her adult life until, by the way, somebody came up with a GLP and took fixed it for, you know, in two years. (52:41) Like
Tricia (52:41) Mhmm.
Scott Benner (52:42) They sent her right back again. (52:44) But my point about, I guess, probably where my passion comes from about people sharing their experiences is the only reason we even knew my wife had a thyroid issue is because I shared her problems with Arden's nurse practitioner when Arden was little. (53:01) And the woman just said this offhanded thing to me, and her name was Sakina Boyd, and thank you very much, Sakina. (53:08) And she just said, oh, yeah. (53:11) Autoimmune stuff, like, runs in families, and it doesn't have to be, like, diabetes diabetes.
Scott Benner (53:18) Or it doesn't have to be Hashimoto's Hashimoto's. (53:20) She's like, sometimes you just see, like, a potpourri. (53:22) Like, I don't think she used that word.
Speaker 3 (53:24) Mom's side of the family.
Tricia (53:26) Yeah. (53:26) Mhmm.
Scott Benner (53:26) Right. (53:26) And and then I stopped, I thought, oh my goodness. (53:29) And I started going through Kelly's side of the family. (53:31) Her her grandmother had what they used to call the sprue. (53:35) I don't know if you know about that, but it was celiac because
Tricia (53:37) it was celiac. (53:39) Got it. (53:39) It. (53:39) Got it. (53:40) Got
Scott Benner (53:40) it. (53:40) They'd like, grandma has the sprue. (53:42) The sprue. (53:43) This is what happens when morons talk about technical things. (53:46) By the way, no offense, but she's she's dead and she wasn't that smart.
Scott Benner (53:49) And so, like, and so, like, they're talking about the sprue over here. (53:54) Nobody everybody's shitting all the time. (53:56) Like, nobody can like, everybody gets nervous and runs to the bathroom all the time. (54:00) Like, that's the thing that happens. (54:02) You know, I've got a niece who's sick all the time.
Scott Benner (54:05) Right? (54:06) One and I've got, you know, I've got there's a there's a person who has a lot of, like, issues that he probably would call bipolar, but maybe not. (54:18) It's never been able to be knocked down. (54:20) And then I started making this podcast and asking people all these questions. (54:23) All y'all have these problems in your family.
Scott Benner (54:26) Okay? (54:26) Like, get so, like, I'm like, okay. (54:28) So Sakina shares her colloquial thought, and it makes and it saves my wife. (54:35) Right? (54:35) Because then one day I go into a doctor's office and I'm like, she clearly has hypothyroidism.
Scott Benner (54:40) And he goes, no. (54:41) Her TSH is only whatever it was. (54:43) And I was like,
Tricia (54:43) I don't There you go.
Scott Benner (54:44) I so but see, here's the difference. (54:46) Right? (54:47) I'm an asshole. (54:48) So, like so I looked at him and I said, in not a polite way, will the medicine hurt her if she doesn't have hypothyroidism? (54:55) And he goes, no.
Scott Benner (54:56) And I won't well, then fucking give it to her. (54:58) Like like like, are you out of your mind? (55:01) Like, it's not gonna hurt her to try it for a month, but if it it's the right thing, then this all goes away, and you're saying, no. (55:07) Sorry. (55:07) The number on the paper doesn't indicate this?
Scott Benner (55:10) Like, you're out of your mind. (55:11) You were willing to give her depression a medication. (55:16) You were willing to tell her that she doesn't exercise. (55:19) You were willing to tell her she doesn't eat. (55:20) Right?
Scott Benner (55:20) You were willing to say a whole bunch of things that that weren't true that you were guessing about. (55:25) But this one thing that has the most common sense wrapped around it, this you're not willing to do because the test says, what? (55:32) It's green? (55:33) That's all he said. (55:33) It's in the green, he said.
Scott Benner (55:35) By the way, when someone starts telling you your test is in the green, I think what you should hear is that person doesn't know what the they're talking about. (55:42) And, like like, if they did, they'd have a technical explanation for you. (55:45) Not it's green. (55:46) Green's good. (55:47) Green means go.
Scott Benner (55:48) Like, are you out of your mind? (55:50) Like like so, you know, so then I Kelly gets the thing and she's okay. (55:56) And then I come on the podcast and talk about it more. (55:59) You wanna know, like, I don't know if I get more notes from people who are grateful about having their thyroid problem fixed or about their diabetes being better. (56:07) Like, it's it's rampant, and and and I'm not even mad at anybody.
Scott Benner (56:12) I just think it's
Tricia (56:12) the No.
Speaker 3 (56:13) No. (56:13) No. (56:13) Yeah. (56:13) We have a I feel like we have a broken system. (56:18) And It's not the system.
Speaker 3 (56:21) Me, I ended up at a gastrointestinal doctor telling her my symptoms were getting far and far worse in spite of being put on something called LINZESS. (56:32) Okay. (56:33) I was getting worse. (56:34) And she also told me, and I was like, I'm out of here. (56:38) To distract myself and accept that I was complicated and that I just needed to be on meds, I had told this doctor, this gastrointestinal doctor who was she's probably in her early sixties.
Speaker 3 (56:51) I said, I probably should go back for an endocrinology and consult considering my family history. (56:56) She told me I didn't know what I was talking about. (56:59) And then again, I just needed to accept that I had, you know, these digestive issues and sort of move on.
Scott Benner (57:07) Yeah. (57:08) That that person's a dipshit. (57:09) And so, like, I and and that
Speaker 3 (57:11) She shouldn't she shouldn't this doctor should not be practicing.
Tricia (57:14) Right. (57:14) Right.
Scott Benner (57:15) But but you you just said the system's broken. (57:17) I just think that's a thing people say. (57:19) Forget that. (57:21) You said the real problem earlier. (57:23) It's not that the system's broken.
Scott Benner (57:25) What what was lacking when people had to help you? (57:29) Critical thinking.
Speaker 3 (57:31) Mhmm.
Scott Benner (57:31) But there's not a there's not a systematic issue. (57:33) There's a people issue. (57:35) Like, not everybody's cut out to think through a problem like this. (57:39) And and often and God bless you all who are doctors. (57:43) Like, what makes people good doctors doesn't necessarily make them good at communicating, and it doesn't necessarily make them good at, like, the the investigatory part of it.
Scott Benner (57:53) Right?
Speaker 3 (57:53) Like also realized this doctor would get anxious. (57:56) She couldn't solve a problem, didn't know how to solve a problem, so it was take a drug and get out of my office.
Scott Benner (58:01) Yeah. (58:02) She prob listen. (58:03) She's probably on the spectrum. (58:05) Like, anybody that can sit in college for eight years and learn all that stuff and then remember it, something's up. (58:11) You you you know what I mean?
Scott Benner (58:12) Like, I don't I don't know shit about anything. (58:14) I can't remember anything. (58:15) I've helped more people with type one diabetes than most endocrinologists are going to.
Tricia (58:19) Yeah. (58:20) No. (58:20) Yeah. (58:21) But just
Speaker 3 (58:21) I ended up going to finally to a doctor who was different, and and I was telling her brain fog, etcetera, etcetera. (58:30) We caught on my labs when I went through menopause that my a one c went to 5.7, and I said first, her office did goof up because they're like, oh, maybe you have type two. (58:47) I go, hello? (58:48) My mom has type one. (58:50) Look at my freaking chart.
Speaker 3 (58:52) I finally then got the doctor on the phone, and she said, well, diabetes is a spectrum, can be a spectrum. (59:00) I've seen it.
Scott Benner (59:01) Yeah.
Speaker 3 (59:02) And I said, what what do you mean? (59:04) I thought you were either diabetic or you or you weren't. (59:08) You weren't like, like, kind of, like, your story with Arden. (59:11) Like like, you know, you go dramatically to the emergency room.
Tricia (59:15) Yeah.
Scott Benner (59:16) Right. (59:16) Right. (59:16) Oh my gosh. (59:17) But you what you gotta do is listen to that episode with doctor Hamdi where he discusses that, like, in the very near future, you're gonna see people with dual diagnosis. (59:24) This is type one, and insulin resistance is basically a type one, type two diagnosis.
Tricia (59:29) There
Scott Benner (59:29) there's gonna be a lot more versions of diabetes that are gonna get
Speaker 3 (59:33) Like, yeah, like I said, why why does my why can my brother not look at a white carb? (59:38) Like, he doesn't have the antibody attack, but, yeah, he could be a high glucose responder.
Scott Benner (59:43) Not yet.
Speaker 3 (59:44) He could be like
Tricia (59:44) yeah. (59:45) Right.
Speaker 3 (59:45) This could
Scott Benner (59:46) Also Yeah. (59:46) I But well
Speaker 3 (59:47) But nobody's would look at him if I forced him. (59:50) I said
Scott Benner (59:52) Oh god.
Speaker 3 (59:53) Just said, your brother should go get thoroughly checked, and my brother finally did it.
Scott Benner (59:58) Yeah. (59:58) But thoroughly checked for what? (1:00:00) And then what are they gonna do after that? (1:00:02) Like, there's listen. (1:00:03) Yeah.
Scott Benner (1:00:03) I I'm I'm telling you all, like, right now, I probably sound like I don't I don't know. (1:00:07) Like, I guess, I don't care how I sound actually. (1:00:09) But, like, there's the something in that GLP
Tricia (1:00:13) fury.
Scott Benner (1:00:14) Well, no. (1:00:14) But something in that GLP medication is affecting a lot of things for people, and no one understands what it is yet.
Tricia (1:00:21) Mhmm.
Scott Benner (1:00:21) Right? (1:00:21) But I I'm I'll say over I'll say over and over again. (1:00:24) There are a lot of ladies pregnant now on a GLP that weren't pregnant before. (1:00:28) And and I'll and basic and, basically, what happens is that when you say that out loud It's
Speaker 3 (1:00:33) a good thought.
Scott Benner (1:00:34) Common medical wisdom is, well, yeah, they lost weight and they're healthier now, so they got pregnant. (1:00:39) Some of them are getting pregnant weeks after beginning to use it. (1:00:42) They haven't lost weight yet. (1:00:44) Like, right, they start shooting it and then boom, they're pregnant. (1:00:47) And I'm talking about people who've been trying to get pregnant for decades to the point where they don't think about
Speaker 3 (1:00:52) know this.
Scott Benner (1:00:52) Yeah. (1:00:53) They don't think about contraception anymore. (1:00:55) They just bang all over the place because they think it can't possibly happen. (1:00:58) They go, oh, I I I heard I maybe I can be a little thinner on this GLP. (1:01:02) They put it in and, woo, pregnant.
Scott Benner (1:01:04) And there's so many of them that they found each other online and created, like, a giant Facebook group about them, which then made the medical community. (1:01:12) Right?
Speaker 3 (1:01:12) What's going on?
Scott Benner (1:01:13) Think, oh, what's going on? (1:01:15) Now they're gonna start looking into it. (1:01:16) Now they'll take twenty years to figure out what's happening. (1:01:19) And, like and but in the meantime, people talking will know the difference. (1:01:23) Right?
Scott Benner (1:01:24) And so Mhmm.
Tricia (1:01:25) And
Scott Benner (1:01:25) so, like, I'm I'm sitting before you right now. (1:01:28) I'm 70 lighter than I was two and a half years ago. (1:01:31) I don't eat or act or do anything differently today than I did two and a half years ago. (1:01:36) If I I feel bad because Arden has a a needle phobia, so she has a little trouble taking shots. (1:01:42) But if you give Arden a small dose of GLP, not a full dose of it, a small, like, microdose of it, her insulin needs to go down by, like, 30%.
Scott Benner (1:01:52) There's been a man on here who had type one diabetes, all the antibodies, using all the insulin, etcetera, for a couple of years. (1:01:59) They stick him on Mounjaro for weight, and the next thing he knows, he's not using insulin for a while. (1:02:04) Now he's got Oh
Tricia (1:02:05) my god.
Scott Benner (1:02:05) Yeah. (1:02:06) He's got LADA, so it's it'll come back eventually. (1:02:09) But there's also a 15 year old girl that came on that for two years between 15 and 17 was down to, like, one unit of basal a day. (1:02:16) From, like, from, like, fifty units a day of total insulin down to one unit a day had to take her pump off. (1:02:21) But she has and has the antibodies.
Scott Benner (1:02:24) She has type one diabetes. (1:02:25) Right? (1:02:26) And she was using all the insulin, like, she and and gaining weight and all the stuff. (1:02:30) So they put her and her mom recognizes it because her mom used the GLP for gaining weight and some PCOS type symptoms. (1:02:37) So solid in the daughter, put her on the meds, and then all of a sudden, they, you know, they said, hey.
Scott Benner (1:02:42) You might have to turn your base you know, your insulin down a little bit. (1:02:44) It wouldn't stop going. (1:02:45) Her need wouldn't stop going down. (1:02:48) Like, so her situation's not another person's situation. (1:02:52) Like, your your part your point about the spectrum is well taken by me.
Speaker 3 (1:02:56) I only okay. (1:02:57) So first of all, doctors, like, especially in an urban area, I walk to all my appointments. (1:03:04) Right? (1:03:04) Doctors don't have any critical thinking about the labs in an urban area because in New York City, man, you walk. (1:03:11) Okay?
Speaker 3 (1:03:11) Mhmm. (1:03:12) So other things you talked about, like, in terms of I realized during, what you call it, 2020 with all the EMRs, I had one what I you know how you get multiple labs after you go to a doctor and they start to come in your email? (1:03:28) Yeah. (1:03:28) There was one of them I missed with my glucose. (1:03:31) My glucose was one twenty out of range.
Speaker 3 (1:03:33) Doctor never called me about it. (1:03:36) It was an o b g OB GYN. (1:03:37) Mhmm. (1:03:38) Okay. (1:03:38) Never called me.
Speaker 3 (1:03:39) And then number two, for me, having diabetes, being so physically active, not having a car. (1:03:48) And even now, I still exercise amount. (1:03:51) My doctor says, I only take two units of background insulin.
Scott Benner (1:03:55) Yeah. (1:03:55) You are super active.
Speaker 3 (1:03:57) Yeah. (1:03:58) And and, like so she's like, you don't look like my normal average type one
Scott Benner (1:04:06) Yeah. (1:04:06) So keep thinking
Tricia (1:04:07) about it. (1:04:07) Diabetic.
Scott Benner (1:04:08) That's the, like, that's the part I don't get. (1:04:10) Like, like, what oh, you don't look at the average one. (1:04:12) So and then, like, it it just I don't know what to say exactly. (1:04:16) Like, I I I'm not blaming doctors. (1:04:19) They're just people.
Scott Benner (1:04:19) Right? (1:04:20) And we have these experiences and you live with it all the time, so you have more time to think about it. (1:04:25) But not everybody thinks about it. (1:04:26) Some people just do the thing that that lady told you to do, which is just accept that you're a sickly person and be done with it. (1:04:31) And
Tricia (1:04:32) Oh, oh, oh, yeah. (1:04:33) Right? (1:04:33) Oh, yeah.
Scott Benner (1:04:34) And there's just I I don't know the answer. (1:04:36) I really don't. (1:04:37) Like, I don't but there's there's something going on that that nobody's really qualified yet.
Speaker 3 (1:04:43) If you This is my answer.
Scott Benner (1:04:44) Go ahead.
Speaker 3 (1:04:45) And that's what you and I are doing right now. (1:04:48) We have to spread the word.
Scott Benner (1:04:51) Talk about it.
Speaker 3 (1:04:51) You don't just get type one, and then there's type two. (1:04:56) CGMs are showing us that people are high some people are high glucose responders that, you know, you can be a diabetic with that an a one c can hide that you're in the early stages. (1:05:12) I know my endocrinologist now says, like, by the time it's coming out in your a one c, it's been brewing often for a very long time.
Scott Benner (1:05:21) Mhmm.
Speaker 3 (1:05:21) So I think with what you're saying with, the GPL ones, like, we're in an explosion of data and, like, we did not really see what diabetes was
Scott Benner (1:05:32) Yeah.
Speaker 3 (1:05:32) In the past.
Scott Benner (1:05:33) No. (1:05:33) I I I'll tell you right now that if if you if you my my a one c's never been a problem ever. (1:05:40) Right? (1:05:40) It but and if you took my GLP from me run today, I'd go find a Gila monster and I'd French kiss it every day. (1:05:55) This episode was too good to cut anything out of, but too long to make just one episode.
Scott Benner (1:06:00) So this is part one. (1:06:01) Make sure you go find part two right now. (1:06:03) It's gonna be the next episode in your feed. (1:06:08) The podcast episode that you just enjoyed was sponsored by Eversense CGM. (1:06:13) They make the Eversense three sixty five.
Scott Benner (1:06:15) That thing lasts a whole year. (1:06:17) One insertion. (1:06:19) Every year? (1:06:20) Come on. (1:06:21) You probably feel like I'm messing with you, but I'm not.
Scott Benner (1:06:23) Ever since cgm.com/juicebox. (1:06:28) US Med sponsored this episode of the juice box podcast. (1:06:32) Check them out at usmed.com/juicebox or by calling (888) 721-1514. (1:06:40) Get your free benefits check, and get started today with US Med. (1:06:46) Arden has been getting her diabetes supplies from US Med for three years.
Scott Benner (1:06:50) You can as well. (1:06:51) Usmed.com/juicebox or call (888) 721-1514. (1:06:59) My thanks to US Med for sponsoring this episode and for being longtime sponsors of the juice box podcast. (1:07:05) There are links in the show notes and links at juiceboxpodcast.com to US Med and all of the sponsors. (1:07:11) If you're new to type one diabetes, begin with the bold beginnings series from the podcast.
Scott Benner (1:07:16) Don't take my word for it. (1:07:17) Listen to what reviewers have said. (1:07:19) Bold beginnings is the best first step. (1:07:22) I learned more in those episodes than anywhere else. (1:07:25) This is when everything finally clicked.
Scott Benner (1:07:27) People say it takes the stress out of the early days and replaces it with clarity. (1:07:31) They tell me this should come with the diagnosis packet that I got at the hospital. (1:07:35) And after they listen, they recommend it to everyone who's struggling. (1:07:39) It's straightforward, practical, and easy to listen to. (1:07:42) Bold Beginnings gives you the basics in a way that actually makes sense.
Scott Benner (1:07:47) Okay. (1:07:48) Well, here we are at the end of the episode. (1:07:50) You're still with me? (1:07:50) Thank you. (1:07:51) I really do appreciate that.
Scott Benner (1:07:53) What else could you do for me? (1:07:55) Why don't you tell a friend about the show or leave a five star review? (1:07:59) Maybe you could make sure you're following or subscribed in your podcast app, Go to YouTube and follow me or Instagram, TikTok. (1:08:07) Oh, gosh. (1:08:08) Here's one.
Scott Benner (1:08:09) Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. (1:08:15) You don't wanna miss please, do you not know about the private group? (1:08:19) You have to join the private group. (1:08:21) As of this recording, it has 74,000 members. (1:08:24) They're active talking about diabetes.
Scott Benner (1:08:27) Whatever you need to know, there's a conversation happening in there right now. (1:08:31) And I'm there all the time. (1:08:32) Tag me. (1:08:32) I'll say hi.
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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
