#1413 Low Dose Naltrexone

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Liz shares her family's autoimmune journey and how low-dose naltrexone helped. She highlights overlooked links between thyroid, insulin resistance, and autoimmunity.

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Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox Podcast. I

want to jump right into this one, but Liz is back. She's a returning guest, and today we're going to talk about a lot of stuff, but mainly we talk about how she's using low dose Naltrexone. Now, you either heard that and thought, Ooh, interesting. I can't wait, or I don't know what that is. Either way, hang out for a second. It'll all become clear. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Don't forget, if you're a US resident who has type one, or is the caregiver of someone with type one, visit T 1d, exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Today's podcast is sponsored by us Med, US med.com/juicebox you can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, libre, Omnipod, tandem, and so much more us. Med.com/juice box, or call 888-721-1514, this episode of the juice box podcast is sponsored by the ever since 365 that's a CGM that lasts a full year, ever since cgm.com/juicebox one year one CGM Liz has been on the podcast in the past. She was in an episode called blackberries to the rescue. Blackberries to the rescue. You should go check it out. It's a very interesting conversation that culminates with a story of her husband and son, both type ones out on a hike. The low snacks got used up on the sun. The husband gets super low, saves his life with berries on the uh, it's a great story. You should go listen to it. But Liz comes back today because A lot's happened in her family over the last couple of how long would you say,

Liz 2:39
um, I'd say just Yeah, the last year, year, yeah. So we have, we have four kids, and my oldest is the one with all the all the medical stuff. So he has type one. He was diagnosed when he was 12 months old, and then a couple months later he was diagnosed with severe food allergies. And when he was about eight or nine, he was diagnosed with what I now know as Hashimotos. At the time, I just thought it was hypothyroidism, yeah, so the reason why I wanted to come on was mainly the thyroid and autoimmune stuff that we had pop up in our family this last year. So I'll start with my daughter. So she was 12 at the time last year, and she normally loves school. She's a great student, and she started just missing so much school and getting really tired. Sometimes it was like her head was hurting, sometimes her stomach, sometimes her joints, just extreme tiredness. So she missed a lot of school, and I took her to a walk in doctor and asked just for auto immune screening, because we have a lot in our family, and it came back that she has Hashimotos that sort of started me on, I guess, a deep dive of researching Hashimotos and thyroid. And I knew, since her TSH was was optimal. I knew that it could be years, and maybe, you know, maybe she won't ever need it. Hopefully, that's the case, but I knew that she wasn't going to be treated by a doctor for her symptoms, or even acknowledge that the symptoms that she was having were related to thyroid. So anyway, so I just started researching at the same time my son, who was 17 at the time in October, his TSH was also optimal, but his endocrinologist wanted to lower his dose because he lost some weight. I reluctantly agreed, because he already was sort of symptomatic even at that optimal dose, but he's kind of always been like that, so they lowered his dose, and when we retested it, the educator said the doctor's happy with the number. There's no need to change the dose. And I asked what it was, and it was had gone from point four originally, and it had gone jumped up to 4.7 Or something at the at the high end of the range, which is not optimal, and he was also feeling more symptomatic. So I had to basically beg her to adjust the dose. And I asked her, if she wasn't willing to go back up in a dose, could we just alternate? She said to me, there's absolutely no medical reason. And I want to stress this to you, there's no medical reason to adjust his meds, because if he's feeling anything, it's not related to his thyroid, because he's in range. And she said, it'll make you feel better. We can alternate the doses and try that. So how

Scott Benner 5:39
did that make you feel that they said there's no reason to have this medication, but that you continue to ask. And then they were like, Okay, fine, you can have it. Then, yeah,

Liz 5:48
you know, I just, I feel like she was like, anything to just make this intense woman get off my back. Isn't

Scott Benner 5:56
it strange, though, because too much thyroid medication is also bad. So if the doctor really believed that it was going to be too much, this is my assertion.

Liz 6:05
Yeah, she should. She she could have just flat or refused, but, you know, I'm

Scott Benner 6:10
saying she wouldn't have given it to you if she thought it was going to cause a problem. So she, I think what that story tells you is she didn't know either, and then she tried to put it on you, right? I believe the kids call this gas lighting. Am I right? Do I understand gas lighting correctly? Yeah, that's what she does, right? She puts it on you. There's no way she doesn't think, Huh, that might be what's going on here, but I don't want to put my name on it. We'll let the mom take the responsibility. I think it's shitty, is all I'm saying. So, yeah,

Liz 6:41
it felt, it felt. It felt pretty shitty, actually. Okay, yeah. So anyway, we, you know, I, I was very even though I wanted to put him back on his original dose. I was like, if I do that, you know, the blood tests will be different. So I was very faithful. I alternated the doses, and then I got a phone call from her with the next check and his TSH had jumped up to seven something. And she said, Okay, at this point, even though I still he's probably not feeling symptomatic at this point, but we will go back to his original dose. And so we went back to his original dose, which was still, you know, likely not enough at that point, because he was also growing and still feeling worse and worse and worse. And at the next the next blood test, he had jumped up to 31 his TSH, this all spanned from October to me, you know, this is his grade 11 year, and ended up missing so much school, and there was other stuff going on as well. It wasn't, I can't say it was all his thyroid, because he also, we found out that he had other allergies that were undiagnosed because he was having reactions as well. So, you know, he was having severe gastric upset. And some of the times he was missing school, it was because he just couldn't drag himself out of bed, probably because of his thyroid. And then other days it was, you know, because of allergy stuff. And while this was all happening as well, I came across an article that said

Scott Benner 8:17
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Liz 10:43
are allergic to grass and you have asthma, which he is both, there's a chance that you could be reacting to one of the filler ingredients in your thyroid meds, and which is, it's a case, yeah, it's from this tree, you know, like the tree doesn't grow anywhere near us, so it's not like he would be reacting to the pollen, but it's, you know, it's related to the grass stuff, you know. So I knew it was a long shot, but I was like, I know he's allergic to something. Like, there's something happening that I should be able to figure out, and he's suffering, and I can't figure it out, right? So I think this was before we knew his TSH was 31 so at this point, the endos thinking he's seven, probably going down. He's probably, you know, he's probably fine, thought, right? Wise. Anyway, so I wrote her an email saying, think there's a chance. I said, chance. Like, I'm like, I'm not positive, right? But I was like, if there's any, if there's any possibility, I I would love for him to try a different Med, that there's so few meds that he can try in Canada here, like, we don't have that the tears sent up here yet. And so it was like, maybe we could go to a compounding pharmacy, you know, get it without the fillers, just, you know, and I will have the allergist test for it. And I realize it's a long shot, but you know, what the heck there's a chance, right? You know. Keep in mind,

Scott Benner 12:00
you're talking about eight months this has been going on for him. Yeah,

Liz 12:03
yeah, she was, you know, she contained her

Scott Benner 12:07
disdain for you.

Liz 12:10
And so she's like, Okay, I highly doubt it. I highly doubt it. But if, if you want, we can, we can go that route. And by the time I, you know, heard back from her, he did have an appointment at the allergist a week later. So it was like, okay, you know that we'll see what's happening. But I did feel that, you know, I was being, you know, she in her mind, she thought I was crazy, because she already, you know, she kept on saying, whenever I bring up the word optimal for thyroid, she's like, well, we have very different ideas of optimal, and there's no reason to think that anything, any symptoms he has. It's not really, oh. And then at the same time, I had been asking to know if, if he in fact had Hashimotos, because I was like, has, could we get his antibodies tested? Because I'd like to know. I think it's good for him to know if he does in fact have Hashimotos or just right hypothyroidism. And you know, chances are. And to their credit, you know, she's like, we don't need to test antibodies. There's no reason to test antibodies, and we're not going to

Scott Benner 13:07
because what's the reason against testing for them? Well, I think it's

Liz 13:10
a money thing. Like, I did find out she I wanted her phone calls, she she called back, and she's like, I did look again in his chart, because she'd said she'd already looked in his chart and he'd never been tested. And then she said, I looked again, and when he in 2012 when he was diagnosed with leading thyroid meds, his antibodies were tested at that time, and it does show that he has Hashimotos.

Scott Benner 13:33
Yeah, I would have said, why was it necessary then, but not now? Like, I feel like you just make things up when you're talking to me, is what I would probably have said. But okay, good. I

Liz 13:43
feel like what it is is that, you know, the government has mandated that they don't test antibodies because it saves money, and then they have to come up with the reason to defend that. Otherwise, if they told their patients that are asking for it, we really think that would be a great idea to test for them, but we can't, I don't know. Like, I'm trying to reconcile why they why they said all this stuff. By

Scott Benner 14:05
the way, I don't mind that there are financial reasons to do things and not do things. I mind the lying. I mind the making things up, because then you, you cling to those reasons like you don't mean like the doctor said. So down the road, you might use that as a reason to justify something else, when the truth is, it feels like they're just saying whatever shuts you up. Yeah.

Liz 14:30
And I said, you know, I said to her, I was like, I feel like it's his, his medical knowledge, like he has a right to know, you know, if, if he has this or not. Because, what if, no, what if, when?

Scott Benner 14:41
What if it has other impacts on other things too, exactly

Liz 14:43
like, what if he has other if he has kids, and he needs to know, look, I have this autoimmune disease, this autoimmune disease, you're going to be more like, you know, I feel like it's his, his information that he should be privy to In the meanwhile, like I had found all these research medical journals. Yes, that states if you have auto immune thyroid disease, even if you're in range, like before you even start taking meds, you are much more symptom, like you have an increased it's not in your head. Basically, what you're like what they're saying. You know,

Scott Benner 15:16
that's why we always tell people we by the way, I'm a guy that makes a podcast. I barely got out of high school, but nevertheless, it's why I'm always saying to people like, treat the symptoms, not the test result, right? If you have Hashimotos and you feel a certain way, and that's a symptom of Hashimotos, but your TSH, the doctor goes, well, the TSH is okay, I still feel this way. What do you care what the test says? Ridiculous. Yeah,

Liz 15:40
and my, my daughter for a perfect example. So her TSH is optimal and perfect. She doesn't need meds yet. Her, you know, her free t4 is good, her t3 is good. They don't do reflex. They don't do reverse t3 up here. So I have no idea what the conversion is. It's not even an option for the endocrinologist to check off, but yeah, so she was feeling so symptomatic and and my husband also, I mentioned earlier, when we weren't recording that my husband, when he he found out that my daughter has Hashimotos, he also has type one, so he thought, well, maybe I should test myself to see if I have it. And he has Hashimotos as well. So he's in the same boat as my daughter, in that his TSH, right now is good? Yeah. So neither of them, you know, they might not leave meds for years, right? So what I was doing, you know, that whole year, so I was researching a lot on Hashimotos, and what I can do is there anything that they could take my daughter and my husband to help their symptoms while they're in this sort of limbo state where they don't need thyroid meds yet, but they are, it's not in their head. I can see what's happening. You know, my daughter's hair is falling out and, you know, she can barely move some days because her joints are hurting so badly. And I can't remember where I came across it, if it was on one of the Hashimotos groups, or I also belong to a Ehlers Danlos group, because I think some of my kids have that and so it might have. I don't know where I found it, but I came across this drug called low dose Naltrexone. In my mind, it seemed like the perfect answer for both of them, and then me as well, because I have, I was just diagnosed with fibromyalgia last year, so I have a lot of chronic joint pain and everything. So low dose naltrexone, at its normal dose, is used for opioid and alcohol addiction. And so it's a opioid antagonist, I guess. And so it just blocks the blocks the effects of narcotics. They found out that if you take it at a very, very low dose, like, you know, 0.5 milligrams, up to 4.5 instead of the typical 50 milligrams, that what it does is it lowers body inflammation, and it for a very brief time, like maybe an hour. So it it locks the endorphins to your brain, and then your brain realizes, hey, I don't have any endorphins. I better make more. And then it makes, it sort of spits out extra endorphins. And somehow, the mechanism with these extra endorphins is it lowers pain, lowers inflammation, which is not going to cure your autoimmune disease, but it potentially could help you from picking up another autoimmune disease, because it's putting your body in a state of, I don't know, so just, I guess helping with inflammation. You know, it seemed like a very low risk thing to try. There's, there's very few side effects. The main complaint is sometimes people get vivid dreams from it. You start off very slow, and you titrate up the dose, but then if you decide that you it doesn't work for you and you don't want to take it, there's no tape. You don't have to taper down. You can just stop. And there's no side effects from stopping. Yeah, there's no side effects, and there's no addiction to it anyway, it just seemed like the answer.

Scott Benner 18:59
So Okay, who did you start with? Like, because you, you probably should have gotten, like, a candy jar full of it and giving it to everybody. But where did

Liz 19:07
you start? I originally asked my doctor for me, and she said, No, I do have some patients on it, but before I start you on it, I would want to try these other options. And so she, she wanted me to try deloxetine, which forget the other name for it, but it's basically, it's a pretty hardcore pain med, okay? And researching that, I talked to so many people that had been on it, and they were like, run the other direction. I'm sure it does help some people, but it seemed like a scary option to try, because a lot of people, you know, they were, they were saying, you know, I was on it for one month, and then I decided I didn't want to. It wasn't for me. There were too many side effects, and it took me two years to get off of it. And I was opening up the capsules, counting out the beads, trying to

Scott Benner 19:54
wean myself, you know, what's it? Called myself off. And I delox,

Liz 19:57
the team d i. U L,

Scott Benner 20:00
I'll figure it out. Is it Cymbalta? Yes, yeah, it's Cymbalta. Okay.

Liz 20:06
Meanwhile, I had booked through one of our it was our local diabetes Facebook groups. I was sort of venting about all the thyroid nonsense that was happening with my son and and daughter, and at the same time knowing that if things got worse for my daughter, she was going to end up at the same clinic that my son went to, which, you know, they're great for many, many things, but I knew that thyroid wasn't one, yeah, yeah. So what can I do to help her in the meantime? So somebody on the group had commented clinic that I work for, and there's a really wonderful nurse practitioner that is great with thyroid. She's helping me with my thyroid. And so I booked, I booked all three of them in with her, and before I could even bring it up, like I had all these like arguments. Why I thought this was the best option for them. This is like, I'm ready. I was ready to go on fighting. I'm ready. She actually brought it up. She's like, well, there's one thing that we could try to help lower their symptoms. And she, she brought it up. So that's how we got it prescribed

Scott Benner 21:12
for them. So long did it take for you to notice it helping them? My

Liz 21:15
daughter was, I should have kept a journal, but I, I feel like it was like, within the first increase in dose, like, maybe not, maybe nothing, the first week or so, but definitely within the first month, I'd say, couple weeks. So

Scott Benner 21:29
what did you start her on? Like, a starter dose? How long did that go for? When did you ramp it up? Was this on the doctor's orders? It

Liz 21:36
goes through a compounding pharmacy. So because they they have to take the 50 milligram pill, and then, you know, put it in a capsule. And so we started on 0.5 it was like, every two weeks we would go up, up in dose. Okay, so it was like 0.5 to one, and then, you know, so it took a while to go up. I think she started my husband on 1.5 and six weeks, he was up to 4.5 so, so he went up quicker. She just wanted to go slower with my daughter, but yeah, so she was, she was taking anti inflammatories every day. You know, she was taking Advil every day because she was in so much pain with her joints. And she basically just, she stopped eating Advil, and she it helped her with her energy, you know, she was able to get back to school. And I feel like she's, she's not what she was before this all happened, you know, like she doesn't. She sometimes needs a little bit more, I guess, repair time after a big weekend. Or, you know, I was mentioning to you earlier that she does cheer, and before she was on this if she would do a cheer practice, I feel like it would take her the whole weekend to to get better or to get her energy back, you know. So any

Scott Benner 22:48
other impacts? So what? What stick with your daughter for a second? What impacts Did it have for her?

Liz 22:55
I think it helps her well, for sure, her her overall body pain. It's helped a little bit with her energy. And do

Scott Benner 23:03
you think energy because it's improving her energy? Do you think that not being in pain is giving her more energy?

Liz 23:09
It's hard to say. It could be both, yeah, and I feel, you know, like last year, she was giving she was coming down with strep throat all the time, or what she thought was, I think it was definitely strep throat once or twice, and then other times, you know, she would just have a she was always complaining of a sore throat, and I wonder if that was like her thyroid was, was sort of inflamed, and it felt like sore when she was swallowing. I'm not sure, yeah, yeah. Just just energy overall and joint pain for her, yeah, joint pain, yeah, yeah. Sometimes it would be in her hips, and then other times it was her back. And, you know, some of it could have been cheer related, for sure, because she does a lot of lifting. She's, you know, she's one of the the kids that I think has either Stan most. So she's very hyper mobile and flexible. And one of the things with that is that it's easy to hyper extend, and, you know, put strain on your your joints. Is she

Scott Benner 24:04
so cracky? Does she What does her back or neck crack all that stuff? Yeah, yeah, yeah. She feel like, you can't get it, like, to stop Arden. Using my Arden as an example, you could crack gardens back, it'll explode. And you could do it five minutes later, it'll do it again, yeah?

Liz 24:18
And that's how, that's how I am, too. I went down so many rabbit holes last year. I went down the thin All right? Thyroid one, the Ehlers, danlos rabbit hole. And originally I was thinking three of my kids and my husband. Have you looked into the the bitin score? What is this for Arden? Have you? It's the scoring system that they use for to diagnose the hypermobility. Oh, kind of

Scott Benner 24:40
yeah, there's think that's happened to Arden in a doctor's office before, like,

Liz 24:44
you get one point if, if your right elbow hyper extends, and one point for your left and your if your knees hyper extend backwards, if you can touch your hands flat to the floor, bending down, and if you can bend your you. Your thumb and have it touch your forearm, yeah, yeah. And then, so that's, like the, the major criteria. And then there's other things, like hernias and organ prolapse and stretchy skin, all that stuff I was thinking, and it's hereditary, right? So I was thinking, okay, my husband, he can easily pass he gets a positive I've diagnosed him with it.

Scott Benner 25:24
What a fun date. That must have been, honey. Come in the bedroom. He was like, oh, it's happening. And he's and you're like, can you move your thumb towards your form? He's like, this isn't what I thought was gonna happen. But okay, what else that's awesome. You diagnosed him, by the way, byton, B, E, I, G, H, T, O, N, scoring system, if somebody wants to look it

Liz 25:45
up, you know, I just assumed, like the kids, they they can all pass it to right, like my, especially my, my younger one, he's his middle, you know, like the ends of my, like the last joint in my fingers, they all bend backwards. You know, I have, like, the the tips of my fingers basically bend backwards, but also the middle joints on his fingers also bend backwards, so he can make a C, a backwards, C with his fingers, if he bends his fingers, you know,

Scott Benner 26:13
hold on. That just gave me the heebie jeebies. He's

Liz 26:15
so stretchy and so bendy. And then middle son, you know, he was doing, like, party tricks, you know, when he was little, like, his his head and like the back of his head, he can bend his back and it basically touches his back, you know,

Scott Benner 26:29
with the back of his head. Oh, so that wait, yeah, so he can tip his head

Liz 26:33
back and, like, basically touch the back of his head to his back. Oh,

Scott Benner 26:38
my God. Like a pest dispenser, yeah, yeah.

Liz 26:42
Interesting. He used to do this thing where he would bring his his foot up, like, bend his knee, and then bend his like, basically, his foot would end up, like, on his pelvis, but his knee, with his leg was pointing down straight. Like, it's hard to describe, but it's just

Scott Benner 26:58
super bendy, right? Yeah, Pence pence dispenser, don't do that. Yeah, that's crazy. I'm gonna start calling him that. Hey, Pez, what you start calling your kids. I want to be invited Felix. I want to be invited to dinner if that happens. Because if I feel like I'm the one who's like, like, brought that to fruition, I don't think he's gonna enjoy that. Tell me more about like, whatever, because are, is everyone using low dose naltrex? Like, and are you going poor paying for it because this insurance cover it? Well,

Liz 27:27
okay, so now the three of them were taking it. So, you know, I had my other son who, you know, the one with type one and thyroid, even though he's on on Synthroid. I thought, you know, why not? Like him, of all people, like, he has all this stuff. Like, let's help him out with his inflammation. He sleeps a little bit better, and he I think his mood is a little bit better with it, but it's hard. You know, his thyroid numbers are up and down. So my husband and son, they haven't had such a significant it is helping them. Like, I think it's helped my my husband's mood as well, but I think my daughter has seen the most significant benefits from it. But interesting, I wanted to talk about so on the there's a website. It's called LDN research, trust.org, and it has, you know, all the information about it. But when I went before we we started taking it, I I kept coming across whenever they talk about people with diabetes using it, doctors advise their patients to lower their insulin doses, because it does help with insulin resistance. So I was really careful when we started out. I was watching their numbers, and they both did have to lower their doses, and especially when we would see it when we were bumping up in dose as well. So it wasn't huge. It wasn't like what you talk about on your GLP episodes, but I'd say maybe 10% 15%

Scott Benner 28:50
I think that's a lot, by the way. I think that that's, yeah, that's awesome. Yeah. You know

Liz 28:53
that wasn't what we were going for, but it's, you'll take it's yeah for sure. Take a second and

Scott Benner 28:58
collect yourself. I want to read to people. I'm going to people. I'm going to do everyone's favorite thing, read the Internet. Low dose Naltrexone. Benefits for autoimmune conditions. Immune system modulation balances an overactive immune response, reduces auto immune attacks on healthy tissue, helps regulate T cell activity to decrease inflammation, reduces pro inflammatory cytokines, proteins that trigger inflammation, increases production of anti inflammatory cytokines, temporarily blocks opioid receptors, leading to increased endorphin production, higher endorphin levels improve immune system function and reduce pain under pain relief alleviates chronic pain associated with autoimmune conditions like joint pain and neuropathy, reduces central nervous system inflammation, which is called neuroinflammation, which is linked to widespread pain, slows disease progression, may help the progression of autoimmune diseases like MS or lupus by reducing systematic inflammation. For Ms, improves fatigue, spasticity. And neurological symptoms. For ra reduces joint pain, swelling and stiffness. For Hashimotos, lowers thyroid antibody levels and may alleviate fatigue or brain fog, inflammatory bowel disease, Crohn's and Ulcerative Colitis, colitis, excuse me, promotes intestinal healing and symptom reduction, may reduce systematic inflammation. Fatigue for lupus improves skin and joint inflammation for psoriasis and psoriatic arthritis, Sjogren helps reduce dryness and fatigue. Systematic sclerosis may alleviate symptoms like pain and stiffness, reduces chronic fatigue and brain fog, often associated with autoimmune issues, so it can help increase your quality of life that way, or by improving sleep, protects against neurological inflammation, auto immune conditions like MS or lupus, minimal side effects, provides a safer alternative for people cannot tolerate stronger immune suppressive drugs for insulin resistance. Insulin resistance is closely tied to chronic low grade inflammation, a low dose naltrexone, lowers pro inflammatory cytokines. So we know that's going to help there improves metabolic function. This is all under insulin resistance. Chronic inflammation disrupts the body's ability to use insulin effectively by reducing inflammation, LDN helps restore normal metabolic pathways. LDN can aid individuals with obesity related insulin resistance by reducing inflammation, some studies show it helps regulation in appetite, reduces cravings, which may indirectly improve insulin resistance. It can modulate the gut immune access. It says emerging evidence links gut inflammation to insulin resistance. LDN reduces gut inflammation, which may enhance glucose metabolism and insulin sensitivity, and there's potential benefits for type twos as well.

Liz 31:49
So yeah, Isn't it incredible? I mean, I'm like, Why? Why is not everybody on this drug?

Scott Benner 31:55
A number of months ago, art and Zendo tried to give it to us, but it's cash pay here, you can't get an insurance company to cover it.

Liz 32:03
Okay? So there's a workaround for that, like so right now, our PharmaCare is our government plan is covering ours, which I didn't know it was going to, but I was that was a pleasant surprise. So we there is a deductible on our PharmaCare, but we always reach it. I mean, it's huge, but because of all the diabetes stuff, we always reach it. So the 50 milligram pills themselves, I guess, are very, very cheap. And so what a lot of people do that can't afford the med is they dilute it in, like distilled water, keep it in the fridge, and then draw up from that, that correct dose, you know, so that you could have to mathematically work out how much water you put in and what the dose is. So that's one way that that it can be affordable for people that are not able to otherwise. Wow, I am taking it now as well. So I like, like I said, I'd asked my doctor, and she wanted me to try that Cymbalta first. And I was like, no, and then I ended up booking in with the nurse practitioner as well. And she was like, Oh, I have no problem prescribing it for you. I mean, that's way more sense to try something low risk before trying something with lots of side effects. So it is helping a little bit. I like my overall pain. I feel like it's helping my immune system. I felt like I was always one of those people that was, you know, I would pick up every cold or get sick, and I haven't been sick since I since I took it. But, yeah, I don't know. I think it's amazing. And I think the reason why a lot of people don't know about it, there aren't a lot of studies, because it is such a cheap drug, there's no motivation for people to do studies on it. I

Scott Benner 33:40
was wondering that. Because, yeah, the lady that talked about it for Arden and for Kelly, by the way, she's just a forward thinker. And it did occur to me, like, when your doctor was like, no, why don't you try this one that, you know, the sales people have already told me to tell you

Liz 33:55
about. I know, I know it's gross. It did feel like that a little Yeah, I really recommend it. And if you know, if, if people are interested, and they they want to reach out to me on like, through the the group, I'm, I'm happy to talk to anybody about it. And there is a great Facebook group too, like a LDN Facebook group with lots of knowledgeable people. So I think it's definitely worth trying if you have any autoimmune stuff.

Scott Benner 34:18
I mean, it's been a benefit for your family so far, you think, yeah, just looking

Liz 34:22
at the difference in my daughter, it's, it's made a huge, huge improvement. I mean, she was, she could barely pull it together last year with her school and and so

Scott Benner 34:35
you think it helped your one son who was having gastro problems. Do you think it impacted that at all?

Liz 34:39
You know, it's hard to say. So I jumped around so I was talking about how I thought that he was allergic to the Synthroid filler. And when we went in for testing, what happened with that is that, you know, I brought the actual a Casey, I sourced out Acacia powder, and then they also tested him. They crushed up one of his. Synthroid pills and tested him with that, and he didn't react to that. So I was wrong, and it was right. I'm

Scott Benner 35:09
not Is that a thing we brought up in your first recording where we didn't record your voice, or here I

Liz 35:13
got, I'm not sure. Well, okay, so just real quick. So I was sort of racking my brains like something he's, he's reacting to something. He's, I know he's allergic to something. I had this, you know, nagging feeling in my head, because he was, you know, had all these gastro issues, and I had read that you could be allergic to the filler if you have asthma and a grass allergy. So I went to the end of saying, I think he might be allergic to his Synthroid. And she, you know, basically looked at me like I had two heads. But she was willing to appease me and try to, you know, go through a compounding pharmacy and then I had the allergy testing done. So I had to tell her that she was right in that, but I was also right because it it turned out that he was allergic to something that we didn't know, and he was that's what was causing a lot of the gastro issues. So what did you figure out he was allergic to soy, which is in everything.

Scott Benner 36:04
So does he just breathe air now through a straw with a piece of cotton over it? Or how does he

Liz 36:09
Yeah, poor guy. I mean, he was already so limited in what he can eat, and at the time, he also had been vegetarian his whole life. He was never crazy about, like, the meat alternatives, but anytime that he would have one, it was soy based, you know, so he was, he was just getting, oh my gosh, yeah, even when he wasn't eating tofu or soy, he always hated tofu. But every once in a while, I'm like, Just eat it, you know, like, you need protein, and then he would eat it. And then, you know, probably for the the days after that, he was, you know, having all sorts of issues. And then, yeah, it was just very hard to narrow down, because there's, it's in, yeah, it's in everything. And his allergist does say that he's okay with having soy Letha sin and soybean oil because they're so highly refined that he didn't think that he was going to that. So we kind of eat those foods cautiously and just watch him. But anything with actual soy like soy sauce or soy protein, or, yeah, he can't have that anymore, and it does seem like it's, it's helping him. Like, yeah, last year we had, we ended up having a colonoscopy and a endoscopy, and because we also thought, well, maybe he's, you know, celiac, or maybe he has guessed, you know, gastroparesis or something. So all these

Scott Benner 37:25
different problems the body is just attacking itself in different places and ways. And it comes out in the real world, you know, the way it comes out, and then it sends you down all these rabbit holes. And it's just, it's, it's crazy, almost, that the doctors don't start with that. Like, I always think it's crazy, the doctor doesn't start with what's wrong with you. Well, let's keep in mind you do have an autoimmune disorder, you know, and the one you have is type one diabetes, but that's an indication that your body is looking at itself and going attack. So, like, why would it not happen? Like, just because they, you know, it manifested in your type one doesn't mean it's not happening in other places, smaller places, joints, fingers, you know, your your stretchy bits, your ligaments, like, that kind of stuff. Like, it could be happening everywhere, like, and it makes sense that it is right, like, so it's just so interesting that we skip over that, and it's, you know, because I don't know if we talked about it in this one or the the ill fated recording, but your son waited nine months to go to a gastro for the gastro to tell him, like, ah, it seems hard to me. Well,

Liz 38:34
it was actually, yeah, it was more than nine months, because I was looking back on my emails, and it was I had been asking to be referred for three years knowing that something was wrong. Yeah. I mean, I feel like one of the things that I wanted to talk about was just, and we've, you know, we've covered it, I guess, but just knowing that it's okay to push your doctors when you know that something is wrong with your kids. Because, had I not taken my daughter in and asked, you know, for the screening for the auto immune stuff. Maybe at this point she would have been diagnosed with depression, be on, you know, be put on depression. That's, you know, unnecessarily or and especially with women having this sort of invisible illness where you look okay on paper with your TSH, but you have a raging auto immune disorder attacking your thyroid. And there's legitimate journal articles out there saying that, yes, you it's a thing, you can be symptomatic and feel this happening despite looking normal on paper, right?

Scott Benner 39:34
Hey, did your daughter suffer with any acne? No, no. Not yet. Okay, well, maybe, like, maybe, like, a tiny, tiny little, but not like, persistent or anything, no. But

Liz 39:44
my second son, who's 15 and a half, he's starting, starting to, okay. Do you have any advice for

Scott Benner 39:52
that? Well, no, I just are. You know, in the last couple of years, Arden's been hit pretty hard, and the only thing that seems to like dull it is. The GLP, okay, so as you're talking, I mean, I'd be remiss to say, like, there's a bottle of low dose Naltrexone in my house that's meant for her that we just have never, like, done anything with.

Liz 40:11
Oh, okay, I wonder if that would help.

Scott Benner 40:15
Yeah, I'm interested, because in the end, it's inflammation, is what I'm thinking. Yeah,

Liz 40:20
right, just last night, when I was sort of gathering my notes and stuff, like going over, you know, I think, like months ago, I sent you an email with, like, links of all these articles and stuff. So I was kind of going over them again. And one of the recommendations, I think it was like, from the American Diabetes Association or something, if you have what, I guess is it's called poly glandular auto immune syndrome, like where you have type one diabetes and Hashimotos if you if you have somebody in your family that has that, what they recommend is routine screening of all your first degree relatives for other autoimmune diseases. And when I went in after finding Hazel. You know, my daughter and husband had that I went in wanting to have my other two kids screened. And they're a pediatrician who I really love, and she's always been great. She was making me feel like I was over the top and overly anxious about even asking that. And she, you know, she was like, why would you, why would you want to do that? Like, there's no reason. Maybe they don't want to know. Or, you know, wait,

Scott Benner 41:28
tell me that. Start that story at the beginning. Yeah. So

Liz 41:31
what I was saying is, last night, I was going over my my notes, and then I came across this recommendation that if, if you have somebody in your family, what they recommend is that everybody gets screened and even sent to genetic testing. It kind of hammered home that I wasn't, I wasn't that far off base, you know, wanting to get my other kids screened, you know, for Hashimoto,

Scott Benner 41:51
but the doctor just told you, like, why would you want to do that? Yeah, you know, she didn't

Liz 41:55
say the word crazy, but that was like, she's like, you're, you're, you're overly anxious, and she's, like, and rightly so. You've had a lot, you know, you have a kid with a lot of complex medical needs, but basically, chill out. You don't need to, like, look for it everywhere. You know, it was just, I guess,

Scott Benner 42:12
just say, I'm not looking for it. It just, it's here, it's here. I just

Liz 42:16
want to know, you know, like, so I can, yeah, so I can prepare. And maybe, yeah, I think it's good just to follow your instincts and and, you know, I wasn't wrong in thinking that they should be tested, you know, but maybe here in Manitoba, when they they have to come up with a reason, you know, when they're checking off that if they're going to get audited or something, you know, for sending unnecessary tests, I don't know, but

Scott Benner 42:44
it does feel to you like that some of it is about that, is that they just, yeah, I think so yeah, cost and I don't want to get in trouble, like that kind of thing.

Liz 42:55
Yeah. And then also, you know, she was, she was thinking that it would, it would create anxiety, and especially my older son, you know, the younger one probably wouldn't.

Scott Benner 43:04
I'm stunned that they wouldn't think that actually seeing your kids struggle and be sick would also not bring anxiety, didn't I mean, like, I don't understand, like, something's wrong, let's not try to fix it. That'll make you anxious. You don't think that something wrong is making me anxious. Just

Liz 43:23
like, let you know. Let's just sit back and wait for things to get really bad, you know, before we we fix it. And that kind of leads me to another strange thing that that happened with me this summer, and I guess, potentially still happening. I don't know, so I don't know if you remember, on one of your your Facebook Live things, I wrote in I was like, I think I'm getting diabetes. My son and my husband have it. The nurse practitioner, she ran the summer, or I guess in the spring, she ran my insulin hormone, just like she did a bunch of blood tests, right? And it came back as not flagged as low, but it was low enough that she assumed that I ate low carb. So she said, Okay, so you eat low carb, and I'm just like, No, I eat, like, tons of carbs. And she said, Well, you know, since you it could be, could be anything that's causing it, but since you have access to CGM, like, it might just be interesting for you to put one on and see what's happening. So I put one on anytime I've ever done a blood a finger Coke, I've always been in the fours, like, I've never even seen a five point something when I test my sugar, right? And so I put one on, and my average blood sugar was 6.5 and my time in range was, like, 80% in range, instead of, you know, like I assumed I'd be, you know, 96 or 98% in range or something, you know. And I was often in the range, but always on the high end of the range. And every time I would eat, I would, you know, I would go up to every breakfast, I would spike up to, like, 11 or 12. Yeah, and I would come back down, but I would, I would hit, like a 12.5 or, you know, I had a 14 at one point, which, in my head, I'm, like, I have diabetes. Like, this is like, and my brother, who is 55 or something, last Christmas, he was diagnosed with lotta, and he was misdiagnosed as having type two for three years. But anyway, so in my in my head, I'm like, okay, my brother has lotta, so it's clearly on my side of the family, and I have maybe just caught it in the very, very early stages. So my doctor gave me a standing order to go get like, a random glucose but every time, you know I I would go out, I'd see my blood sugar go I'm like, Okay, I'm 12. Okay, I'm gonna get the lab now. And then I would be sitting in the chair, and I'd see my blood sugar go down. So it was like, Yes, I was hitting those numbers, but I wasn't staying up there. And so I never, I never caught a lab value higher than nine, and had just aged out of the trial net like I had done trial net when my son was diagnosed, but like 16 years ago, and I didn't have any antibodies, but I know that you can develop them at any time, and I know that one of the things that can lead to an autoimmune disorder is being super stressed, which I Feel like I've been super stressed the last 16 years. Yeah, excuse me. Sorry, yeah. So this summer, I was like, Okay, this is like, I've just happened to catch it at the very early stages, and I found myself in this sort of limbo land again, because I couldn't my I couldn't get into an endocrinologist without a diagnosis, and I couldn't get the diagnosis without the lab result of the high blood sugar, even though I was going up to 1112 multiple times a day. But just not staying there, I was coming back down. You know, it's not significant, like having a I was mostly hanging in the high sixes and sevens, and it's still in range, but it's not, I was never seeing fours, and I was never seeing steady lines. I was like, up and down and up and down all the time, you know? And I remember, like, you said, you put a sensor on and you couldn't, no matter what you did, you couldn't get over a certain number.

Scott Benner 47:12
Yeah, I had to

Liz 47:14
eat. I think it's probably 10. Like, like, yeah, like, I'm trying to think the translation of the numbers.

Scott Benner 47:20
Well, I can, I can get you that hold on a second. But I'd eat three slices of pizza and then, like, eat a box of, like, sugar candy over top of it to get my blood sugar to once over 160 Yeah, which would be, what, like an 8.9 Yeah, yeah. And, I mean, so I haven't done it in a couple of years now, but, I mean, I ate three slices of pea. I was forcing the food down. It was way too much food. So like, Here, give me, here's a whole bunch of fat like that. Slow my digestion way down. And then I forget what the candy was, but it was probably something like bottle caps. Like, I was looking for something that was, like, just sugar, and then I just ate a bunch of that over top of it, like Swedish Fish, like that kind of stuff. That's what I had to do, not having diabetes to get my blood sugar over 160

Liz 48:03
Yeah. And sometimes I would be, you know, I was like, I was out for a hike, and I was I hadn't eaten in, you know, a couple hours, and I would be, like, an 8.9 or something. I'm like, this is this is not right, you know, like, I know something is off. But then I would talk to my doctor, and it's like, well, it's normal, you know, people go, people's blood sugar goes up, you know. And my last a 1c was 5.1 she's like, I can't send you to an endocrinologist with a 5.1 so let's wait until you're due for a new a 1c and then, then we'll, we'll go from there. And meanwhile, this I had started low dose naltrexone, so I don't know, like, I don't know if that played any part in it, if, if that is somehow helping my blood sugars a bit as well. It's, it's very strange. So I went, in September, I went for a new a 1c and my a 1c was 5.1 again. So no change. So I'm like, Okay, well, maybe, maybe my blood sugar has always been doing this, and I haven't known, because I haven't worn a sensor before, which is possible. I've just never, never seen a number over four. And then when I was wearing a sensor, I was hardly, like, hardly ever, for, you know, I if I did dip down, it was like, I would have that reactive hypoglycemia, where I'd have a fast acting carb, and then I would tank, and then I would go back up again, though that, but that was the only time I was into the forest, was after I'd had a fast acting sugar. And then I would, I would drop really fast, I don't know. So I still think something is potentially going on. But then so I stopped. You know, I can't wear my son's sensors all the time, so and my numbers were, they were actually kind of gradually getting better. So I was like, I know. I'm not in any danger of going into DKA. I'll just keep an keep a watch on it. And so the other thing is, only endos can order the type one antibody testing, so a normal doctor or any other person in Manitoba can't. Order that, and I was too old for trial net to test it again, so I felt like I was sort of stuck in this point of like I had to get worse before I could get better. And T seal is not available in Canada yet, but it's on my list of things, like, I'm gonna start making some noise. Like, I've already, I've spoken to the health minister at gift function, like a diabetes function. I was like, we need to start the pro because it's on the pipeline of drugs that are coming to Canada, the T seal. But as it stands now, if nothing changes when that drug is available here, if nobody can order antibodies to know if somebody is in the early stages, nope, that drug is not going to be available for people here. So are

Scott Benner 50:40
you genuinely worried that you have diabetes, or will have diabetes, or do you think you're do you think you're now looking too closely at things like, I don't know,

Liz 50:48
I don't know, like I so again in September, I retested my ANC, and my ANC hadn't changed, but I had also upped my LDN dose as well. So I don't know if I have no idea, I don't know what's going on. I've and I know that Lada, if it is Lata, it could take years, you know, for it would

Scott Benner 51:11
also, I mean, listen, I'm not saying you're not, like, not not seeing ghosts, or you are seeing ghost or whatever. But, I mean, your husband has type one, right? So it would be crazy if you ended up having type

Liz 51:22
one, I know, wouldn't it, yeah, but my brother has it, but your

Scott Benner 51:26
brother has Lata and, yeah, and has, he has his, is his lot of still? Like, is it still Lata? Like, is it still slowly happening? Or do you think he's full blown type one?

Liz 51:35
Oh, well, I think no, he's full blown now, but, like, it was over sort of three years when he he's funny in that he didn't tell anyone it was happening. So when he was when he thought he was type two, for three years, he didn't tell me, which, if he would have told me, I would have been like, go get your antibodies tested.

Scott Benner 51:54
I might have moved him along. Yeah. Also, by the way, I want to say, if you do end up listen with your your brother's situation, your husband's situation. Maybe this is the secret sauce to giving kids, like, a bunch of different autoimmune issues. You know what I mean? Like, yeah, maybe you, you, I hate to say but like, maybe you will end up with type one. Then you'll be able to step back and go, Well, it does make more sense that my kids all have allergies and these different issues and the joint pain. Like, it does make more sense now, because they're getting it from both bloodlines, basically,

Liz 52:24
yeah, yeah, yeah. So as it is now, I'm not, I'm just, it's sort of on the back burner, like I'm, I'm gonna watch out for it. And the other thing is that I did, I lost a lot of weight, you know, and I'm, I'm small to begin with, and, like, over the course of this last year. But it also coincided when I started my ADHD meds, which lowers your appetite a bit. But despite that, I was still, I felt like I was still eating, you know, a normal amount. I didn't pay any attention to my weight loss because I knew I'd also recently stopped migraine medic medication that sort of made me gain weight. So I'd stopped that so I wasn't, it didn't raise any red flags for me that I was losing a little bit of weight. But then when I in the summer, when all those, you know, blood sugar, blood sugars, I it sort of dawned on me that, yeah, I had lost a significant amount of weight since the year before. Yeah, and, you know, I was, you know, I felt like I was peeing more and more thirsty, and

Scott Benner 53:21
it sucks that it's all in your head, to be perfectly honest. Like, it just, it's, I mean, you've been looking into people's health for so long, by the way, I've lived through this. I've lived with people going, like, hey, stop looking into our problems. And I'm like, you still have problems. Like, nobody's really gotten to the core of these issues. Like, yeah, do you really just want to, like, go, Okay, I guess this is it, like, this is as good as it gets. And we'll just, I think you need to keep looking. But it's funny. It isn't crazy that you could be on the path to it, and it isn't crazy that you might just be looking too hard. That must be frustrating, I guess is my point. Yeah.

Liz 53:57
I mean, you know when it was happening, I was pretty stressed out about it, but now put a sensor on recently, just to, sort of, just to sort of check in and see what was happening, and my numbers were a lot better, but I was having, I was having more lows, which is straight and again, like, maybe it's the LDN, maybe I was like, maybe there was something that my body was fighting off this summer for a couple months, that was creating, I have no idea, but it's just, I'm going to keep an eye on it. But it was just, I thought it was interesting in that other people in that are living in that experience right now in Manitoba, they are stuck. They would basically have to get to the point where they would go into DKA before they could, you know, like, it's like you have to get you have to get sick before you can get better. And same thing with with Hashimotos in Manitoba, they won't start you unless you get lucky and get a doctor that's willing to treat you earlier. The protocol here is you don't even. Start medication until your TSH reaches 10, and then they put you on meds for the first time. I don't know if, when my son was diagnosed, if that's, if that's what they waited for him to get to I'm not sure. But anyway, yeah, it's, it's, it's weird. But my son, also, he has a diabetes alert dog. Now his dog had been alerting me, and I thought it was just because, you know, she was looking for attention. Or, you know, like, sometimes I would go in at night, if, if I go in to treat a low blood sugar for for him at night, sometimes she will alert me. Instead, I think when he's lying down in bed, she doesn't know, like, where to paw him, and so I just thought she was alerting me about him. But then when I put the sensor on a couple weeks ago and saw that I was dipping down, it was like, well, maybe she really, was truly alerting me, because she's trained to alert anything below, like 4.7 Yeah. So if, if I was, you know, like, even if I was a 4.1 and I was, you know, this last couple weeks, I was, you know, getting down into the high threes. So anyway, I just, I thought that was interesting. And if you

Scott Benner 56:12
end up with type one, you're gonna have the biggest I told you so ever, I mean, it's not gonna, it's not gonna be super satisfying, but, you know, you'll have it. Yeah, I

Liz 56:20
recognize that about myself is like, you know, I do go down these rabbit holes and I hyper focus on medical stuff because I feel like I have to, I have to have all the knowledge for my family, because I know the doctors aren't going to be pulling all the pieces together. And I have great respect for doctors and but I also just know that, like you said, it's not like AI, where it's not an algorithm where, like, if you if you name one more symptom, they're not going to say, Oh, it must be this auto immune disease.

Scott Benner 56:49
You can't put it, you can't put it together. Like, it's too broad, sweeping for, I think, for the generalized human mind to just especially an endo who's doing a bunch of different things, there's no way that thyroids on the top of their list. Like, you know, like, people know, like, we use a doctor that's local here, but she's dug in on this stuff. You know what? I mean? Like, she's spending her days really, like, closely, considering these things, most endos are treating type twos, and you're walking in there going, like, I have a thyroid issue, and they're like, oh, thyroid, let me look at the thing. Then it that it's green on your test. You're okay. I mean, that's really what's happening to you. You know what? I mean, yeah. So, and meanwhile, I was doing a little like looking while you were talking, just now, the observed increase in frequency of Hashimotos can be attributed to combination of different factors. So, yes, it's been increasing over decades. Partly, they think it's improved diagnostic techniques. So you know that they're you know that you have it, that the medical community has become more aware of it. There's also some stuff about iodine intake that could have impacted it, but also environmental toxins like industrial chemicals and pollutants, heavy metals, radiation exposure, hereditary factors, dietary factors, processed food and additives increase consumption of processed food may contribute to inflammation and immune system dysregulation, right? Like there's chronic stress, there's a lot of things that have happened in the last 40 years that impact this inflammation, and I think you're seeing what comes from it now, you know? So, yeah, one

Liz 58:19
thing that I wanted to mention too, which I found super interesting on my deep dive. You know how a lot of doctors are, endos are reluctant to prescribe an addition of t3 medication, and they say, you know, it's, it's so

Scott Benner 58:35
that's not necessary so

Liz 58:36
rare that it would work, right? So I feel, I feel like I discovered, I didn't discover it, but I came across a definitive thing that would, you would be able to tell if, if you would be a candidate for the t3 which it was super interesting to me. I had no idea, you know, I knew that the thyroid is produced in the body, and it, you know, converts and changes and everything. So the genes that are responsible for making your thyroid hormones are called the and I could be saying it wrong, the diabetes genes. And there's, there's three types of them. There's like the Dio one and Dio two, Dio three, and they all have their their mechanisms. But I found out, and again, this might be a link to your your bipolar question that you always ask. So originally, when I came across this, I was like, that's when I wrote that email to you. I was like, I have to tell Scott this. Like, this is the link. This is the missing link. If somebody has a polymorphism or a variant in their diabetes two gene, they are the people that need an addition of a t3 med. Isn't that cool?

Scott Benner 59:47
Wait a minute. Seriously, yeah, say that again.

Liz 59:51
Okay, so if you have a polymorphism, a genetic like a genetic mutation of your. Diabetes gene number two, you are the person that likely needs a combination t4, t3, therapy.

Scott Benner 1:00:09
How do we find that out if we have the polymorphism of the blah, blah, blah,

Liz 1:00:13
blah, it's specifically called the E, H, r9, two, a, l, a, dash, D, i, o2, Gene. And there are other Hold on

Scott Benner 1:00:22
a second. Thr, go ahead, boy, hey, listen, you get out. You ever go outside? You ever see the sun?

Liz 1:00:30
Thr, so my husband was gone like a year? No, I know, according, my husband was gone a year. So this is what I would do at night. I would like read medical journal articles.

Scott Benner 1:00:39
Go slow, T H, R, T H, r9,

Liz 1:00:43
two, a, l, a, yeah. Dash, D, I O, 2o, or zero,

Scott Benner 1:00:54
uh, diode, 2e,

Liz 1:00:55
I o2, yeah, the the Dio two, polymorphism, diabetes. I'm

Scott Benner 1:01:02
asking the internet about the test for it, but you got deep, it's

Liz 1:01:05
probably just a genetic, genetic like you would have to go to a geneticist or get your your raw DNA sequencing done, or, or, but if

Scott Benner 1:01:13
you have so, if you have this, you need the t3 Yeah,

Liz 1:01:17
most likely, I think. And so there's this whole, I mean, there's a whole list of things that the people that have this variant have. So I couldn't find any articles that specifically talk about this variant and type one diabetes, but it talked a lot about people with Hashimotos with this variant and that so it causes insulin resistance. So a lot of people with type two diabetes, this is the genetic factor that would cause them to have type two diabetes, obesity, hypertension, osteoarthritis, dementia, like a lot of neurological things, dementia, thyroid, cancer, mild cognitive impairment, bipolar. There it is bipolar disorder. So the people that have this variant, it could be the cause of their bipolar, I guess. And not to say that if you do have this variant, you're going to have all these things,

Scott Benner 1:02:10
sure, sure. But if you have these things, and you go back and find that variant, it's a AHA situation. Yeah,

Liz 1:02:15
there are gestational diabetes. Yeah, it's, I don't know. I just found it super interesting. Yeah,

Scott Benner 1:02:21
no. And you hadn't had sex for a year, so you were interested by almost everything. I don't know if, did we talk about it in the first part where your husband had to go away for a year for work? Yeah,

Liz 1:02:32
I talked about in the first part, he was on sabbatical, so he was gone a lot, and then I felt like that that year, it was like the year of health stuff, falling apart. So my, you know, my daughter and my son's thyroid being totally mismanaged, and then my husband getting diagnosed with Hashimotos. And then he also, he's going for a celiac scope tomorrow, like his celiac antibodies were at the high end of the range, so not, not technically out of range, but they're high enough, and he has Hashimotos and type one. I'm like, Well, yeah, chances are you're gonna You

Scott Benner 1:03:07
guys better get in that bubble that John Travolta had and start eating oxygen. I think that maybe is the only answer for you. But yeah, in the end, though, you just are a family that's kind of riddled with auto immune issues.

Liz 1:03:17
Yeah. So I came across another like, if you're looking for an argument to give to your if, like, if your doctor is reluctant to try t3 another thing that you can you can say is you can say, okay, test my ferritin before you give me the t3 and then give me the t3 and then test my ferritin after. And if your ferritin goes up, that shows that the t3 is is working, because the reason why your ferritin was low is that you you're not having the proper conversion. And really. So, yeah, I thought that was also interesting. That's awesomely Interesting. Yeah, so the quote was measuring serum ferritin before and after t3 therapy may prove useful in the diagnosis of thy rate hormone resistance.

Scott Benner 1:04:04
Can I have all your notes? Are your notes typed in front of you, or are they written on like, I

Liz 1:04:08
scribbled out like, six pages of notes last night, but I can send you the links to all these things, but and then

Scott Benner 1:04:14
please listen to me, yeah, send me all the links and take photographs of your scribbles and send me the photographs, okay, and I'll have, I'll just let chat GPT turn it into text for me so I can look at it. I would love to. Okay,

Liz 1:04:27
you're gonna love this. So in one of the last endo appointments, this was even before I found out his TSH was at 31 luckily, we meet with the educator first. And I really, I love our educator. She's great. She also has type one, and she's so nice.

Scott Benner 1:04:43
She's been in Canada for so long. Everybody, no matter how much they screw you're like, I love these first they're lovely people.

Liz 1:04:48
Yeah, well, the educator is, you know, she's great. She's great. So I, I completely vented to her, you know? I said, when we were told about his thyroid, we were told it wasn't a big. You. And, you know, I didn't do my research, and since then, I've learned all the stuff that should have been told to us. And I know that, you know, maybe part of it is they're they're not wanting to overwhelm the type one parents, because they know that such a big thing that they, you know, it's like minute to minute, but the thyroid is huge, and I didn't realize I should have put it together, because it's the same doctor, it's the same clinic that we see for his thyroid, that we see for his diabetes. But I in my mind, they were completely separate, and I never connected them. But then I find these research articles, and I actually just posted the links of them. The other day, somebody was asking about them on the Facebook group, like, if they were connected, they are so closely connected that if one is out of range and mismanaged, it directly affects the other. So for instance, if you have high blood sugars rampant, high blood sugars all the time, it's going to affect your thyroid function, and vice versa. If your thyroid is not being medicated properly, it's going to make your blood sugar harder to control, and it's like this, you get stuck in this vicious cycle. I feel like it's important enough that you feel like there should be information sessions, you know, it would also be a way to, you know, for the type one parents to connect with other parents. It's it can be a very isolating, lonely disease when you know your friends and family, they try to understand that you don't, you don't really know, unless you go through it yourself too, right? So I can see how it would be extra work for them. But when you get diagnosed with diabetes, there's, you know, you go through training, and you go, you you get, sometimes a binder sent home with you, you know, like you it's like stuff that you have to know. And I feel like there's stuff with maybe not as much, but stuff that you should know with thyroid that we weren't told, and I had to find out. And I, when I said that to the endocrinologist, I said, I feel like I had to do my own research. And she said, Well, you don't have to do your own research.

Scott Benner 1:06:58
Did you say, Well, I was waiting on you, and it wasn't happening,

Liz 1:07:01
you know, like, for instance. So I don't know. Maybe you know this, maybe you don't. But did you know that if you go for your thyroid test on like, morning fasting, your TSH is going to be significantly higher than if you go, like, two hours after eating, like post pan, friend or I can't say that. You know

Scott Benner 1:07:22
what I mean. Post, oh, Jenny and I went over this pro post, real, prandial, all right. Well, figured out. So I

Liz 1:07:31
have an article that says, like 75% of the patients in this study were reclassified when they tested them with a morning fasting test versus the afternoon test when they had already eaten. Like, that's significant. So that means that people could be getting the wrong they could be getting the wrong dose or not getting a dose change when they they need one. No, for sure, because, you know, they're like, Oh, your your number's fine. You're like, in range. It could look optimal when it's out of range. And so 75% of the people in the study were reclassified as subclinical. Because that's

Scott Benner 1:08:08
a significant number, by the way, it yeah, very significant. So just listen to Scott medicate the symptoms there. I'm taking all the thinking out of it for you, if you have thyroid symptoms, and did medicate the symptoms till the symptoms are gone. Yeah,

Liz 1:08:23
and maybe your doctors are looking at the time that you did your blood like the timestamp on when you did your blood test. But maybe they're not. Probably not. I feel like it's important for people to be aware either do it one way or the other, but stick with that, you know, or just always do your thyroid test with morning fasting. I want

Scott Benner 1:08:42
to tell you, Liz, I'm I'm going to turn this episode around very quickly, and it's the first time. I'm going to send it to art and tell her like, I'm not going to pay for college if you don't listen

Liz 1:08:52
to this. Oh, and the other thing did you know about biotin? Like, before you do your your thyroid tests, depending on, I guess, like different labs would use different assays or whatever, but it's really important to stop your supplements that contain biotin before you do your, like, a couple days before you do your thyroid test, because that can also falsely lower the lab value. Like, it's not going to affect your actual TSH level, but on the lab it will show up as lower than it is. And also eating, like, if you're eating a bunch of foods, like, if your diet is, like, rich in biotin, like eggs and pork and like, you can do an easy Google search of like, biotin rich foods. And so ideally, you would stop eating those a couple days before your test, and stop your supplements that contain biotin, because you don't want to have anything that's going to skew your results, especially if, if you know you're super symptomatic, and you're hoping that your doctor is going to increase your dose. When you go in there, and you've had a bunch of bio 10 and your your number looks a lot lower than it is, they're they're not going to change your dose.

Scott Benner 1:09:58
You are a font of information.

Liz 1:09:59
Yeah, look at you right. Why did I have to do my own research? Scott, I don't know,

Scott Benner 1:10:04
but at least you did it. This is awesome. Seriously, you should put together a little like a bullet. Listen, you don't have the outlet for this, but if you put a bulleted list together of the things that you figured out, I would absolutely like put them out for people to look at.

Liz 1:10:18
Yeah, I'll do that. I'll do that for sure. 1,000,000% Yeah, I don't know. I just, I feel like there is lots of valuable information that should have been presented. No, for sure.

Scott Benner 1:10:32
Listen, I have a I have a dream where eventually we can, like, go into people's I always have this, like, dream of like, can you imagine if you took a very smart entity and let it just watch the Facebook group and come up with ideas about, like, what are the questions people have? What are the answers to those questions? What are complaints people have? What end up being the answers to those questions, like, that kind of stuff. So you could just these communities are awesome, right? But it's still sort of, I ask a question, I get my answer, I go away. I hopefully I'm better off. And now my question, my answer, disappear. They go off into the ether, right? Which is what keeps it's also important, by the way, because it keeps the group functioning, and, like, you know, current so that new people can come in, it is actually really important. But, you know, I just, I look forward to the day when, like, I, you know, I think I said this in the first interview that nobody's gonna hear. But I just, I look forward to the day where we're all just talking to our computer and making sure that it knows everything about us, so that it can say, Well, have you considered this? Because it can actually keep all this stuff straight, you know, like, you're keeping it straight in your head as best you can, and you're doing an awesome job. And still it's, it's still storyteller ish when you're telling it, like, oh, then this happened, I forgot to mention this, oh, biotin. Like, you know what I mean? Like, what I want is, hey, computer, I'm going to get my blood draw two days from now, or, you know, two weeks from now, for my thyroid. What are the things I'm supposed to be doing? Well, stop taking your multivitamin, you know, don't eat eggs this week. Like, blah, blah, blah, because you're having symptoms, and we don't want the doctor to see a false number. We want your medication to get adjusted correctly. Okay, great, right? You know, the

Liz 1:12:16
other thing that I had no idea, and again, this was just like when I was going over my notes last night on an article that I had read, but I missed this, this tab of it, so they're saying so people with type one that have hypothyroidism, so they have a lower absorption of glucose, like their body has, like, a lower ability To absorb glucose, and so there's also, like, lower hepatic glucose uptake, lower post absorptive glycemia. That's

Scott Benner 1:12:49
now you're just making stuff up, but I know I'm

Liz 1:12:50
just making words up, and you need a lower insulin dose in diabetic patients, and then you need to raise your insulin dose after you start replacement therapy? I never knew that. I didn't, you know, I always thought like, why are my husband and son, like so prone to hypoglycemic events? You know, I'm thinking it's because I'm bad at managing diabetes. Well, maybe it's because he has Hashimotos and his body doesn't absorb glucose as much as he should. Or maybe when he has a an increase in his his Synthroid, I need to his ratios a little bit because maybe now he can have a little bit more insulin. I never thought of the correlation between the two diseases, but it makes so much sense that they're so closely related. Yeah,

Scott Benner 1:13:39
and in fairness, even, you know, for me, like, if you've listened to the Pro Tip series, at some point in there, you'll hear either I or Jenny say that a, you know, an ill, managed thyroid issue is going to impact your insulin use. But we don't go into deep, like, you know, like deep conversation about it. But it's absolutely true, you know. And not a thing again, that people think about, I think,

Liz 1:14:01
yeah, it's interesting, yeah? I just, yeah, I thought that was it is. I thought that was very interesting. And especially about the, you know, like, so that's, like, your the hepatic glucose uptake. That's what I assume they're talking about, like, the the glycogen stores,

Scott Benner 1:14:16
right? Yeah, well, I mean, we need to get someone on this. It's not you, by the way, like, You're doing a great job, but like, why isn't somebody digging into this and making this information that's easily digestible, that's shareable, that, you know, everyone shouldn't have to get to the point where they're like, oh my god, I think I'm gonna die. I gotta figure something out for myself. Like, that's, that's, you mentioned it earlier, but it's what, it's exactly what up like, You got to this point, probably because you love all the people that this stuff is happening to, you had a bunch of time on your hands, and you were like, you know, like, I gotta figure out what's happening to these people. But for most people, they're just gonna struggle through their lives. And like you said, struggling can look like a lot of things. Could just be like a what comes off looking like a bad attitude, right? Or brain. Bog, or I'm tired all the time, and how that impacts your life and what you don't do, or, or, how about, like, you know, Gastro issues. Like, oh, I'd like to go to the city and see a play, but I What if I can't find a bathroom? Like, like, you know, I mean, like, all the different things that happen to the point where, you know, their families, though, that'll go generations telling stories to each other, like, Oh, we've just got a weak stomach, you know? Or, you know, like, I heard a one one family say all the time, it's so coarse, but like, they're like, this person, like, came into this family, right? And one day just said, you guys talk about a lot, but when you look at the family, there's a lot of auto immune through them. Like, wouldn't it be cool if they didn't have to talk about a lot? Like, you know what? I mean, like, like, Wouldn't it be cool if your daughter didn't need to go to, like, you know, take two days off to recover from a day of activity. And if there was an answer, if it and, Jesus what? If it was low dose naltrexone, or, you know, what, if it was getting the thyroid balanced out better. Like, like, these, yeah, things that look like, I think these things that people spend their lives thinking, well, this is just my lot in life, like, I wonder if they couldn't be helped,

Liz 1:16:07
yeah, or, you know, it didn't. It didn't turn out that way for my son. But somebody else could be allergic to their their synth, right? Or their level of fillers, you know, because they also are allergic to grass, and they can't have, you know, and they should maybe just try another thyroid Med, exactly.

Scott Benner 1:16:23
And also, like, Listen, if you don't make yourself crazy or kill yourself, you might still figure out what's wrong with your son. Because it doesn't sound to me like you're gonna stop, yeah,

Liz 1:16:32
and I feel like, you know, he's been, he's been collecting, he's been collecting allergies his whole life. And I don't think I feel like I just can't sit back and relax. And you talk about that whiteboard you have in your office, I feel like I have a whiteboard in my brain, and I'm always making notes of things that are happening with him and what else could potentially like. I can't remember what it Yeah,

Scott Benner 1:16:55
seriously, take time for yourself. But I think it's I think it's great. It shows an immense amount of concern and thought and love, and I'm sure he'll appreciate it one day if he doesn't. Now I but I want to, we're a little long here, so I'm going to end by telling you that I really appreciate all the effort you put into all this. Thank you. No, no, I'm no one else is interested. I'm, I'm supremely interested in this,

Liz 1:17:18
and I knew you would be interested in the bipolar connection, because I was like, Oh, I have to tell Scott about that. No,

Scott Benner 1:17:24
all of that I'm interested in. And again, this was said in the previous recording that nobody's going to hear. But I shared with you that I take a fair amount of crap from people with type one who don't have other issues, who are like, you know, this guy talks about thyroid too much. And I'm like, I mean, and you brought up back when I said that, you said, what was the number? How many in 10 people with type one also have thyroid issues? Yeah,

Liz 1:17:49
17 to 30% of people with type one have autoimmune thyroid,

Scott Benner 1:17:53
right? So that's worth talking about in a group of people who have type one

Liz 1:17:58
for the diogene polymorphism. Morphism that also is quite common in like the general population. So it said that it occurs in 12 to 36% of the population. So that's huge as well. So it's not a wild question to ask your your Endo, you know, like, if your insurance is going to cover genetic testing, or, if you want to, you know, pay for the sequencing yourself. Like, I feel like it's worth it to know, you know, if, if you're one of those people that you know this is, this is like a real reason that I need. I need an additional three

Scott Benner 1:18:35
and one day, and probably not in our lifetime. But who knows them? AI's going quickly, but like, you're just basically talking about biohacking. You're talking about getting, getting your personal settings correct, you know, with chemicals and etc. I don't know, we all grew up with like, a, like, a, I don't know, an uncle who was a dick or something like that. Like, imagine if he wasn't, like, you know what I mean, like, imagine if your uncle wasn't a dick. What if his ferritin was low because his blah, blah, blah didn't uptake t3 but like, you know what I mean? Like, that's unfair for him to live his life that way. And I don't know, like, I know that's difficult. It's harder. It's, you know, it's easier said than done to figure these things out, but at least if people know to look for them, and doctors don't stand in their way when they're looking for them, insurance doesn't stand in their way. Like, maybe you get to go live the life you're supposed to live instead of the water. And, you know, like,

Liz 1:19:22
especially with people with with bipolar, like this one article was saying it, it speculates that bipolar disorder is a form of cerebral hypothyroidism. This one article was they were had great success with giving people with bipolar, it was like, actually a high dose of levothyroxine, and that was helping these people, like putting these people in remission from their bipolar. Because one theory is that people with bipolar, it's because they can't convert the the free t4 to t3, yeah. So. And we have, we have a friend that is, is going through that like, you know, he has, he thinks he has bipolar and, and it breaks my heart, you know, like looking at all this information, you know, and there's so much stigma with mental illness and, but maybe bipolar is not a mental maybe it shouldn't be classified as a mental illness. It should be classified as a, you know, like you, like an autoimmune disease. And there's, if there's just something like not converting in someone or, you know, they're it's an inflammation thing, you know? And it's,

Scott Benner 1:20:31
I, I'm with you. I, I'm telling you right now. I don't know much, you know what I mean, like, and you could look at my, my educational background, and say, I don't know why we're listening to this guy, but I've just had 1000s of conversations with people, and I don't know it was a few years ago, I was like, Why does everyone with type one? When I asked them about other autoimmune diseases, why does so many of them get to an uncle with bipolar? That just can't be a coincidence,

Liz 1:20:55
right? Yeah, so what I what I think is the link is, I don't think it's the type one bipolar link. I think it's the people that have maybe undiagnosed Hashimotos and maybe this variant, yeah, you know, it's like, it's the hush, it's the it's the thyroid connection, rather than the type one, like, type one is connected to thyroid, and thyroid is connected to bipolar, maybe. So I think everybody, yeah, everybody should get their auto like, their antibodies tested. Yep,

Scott Benner 1:21:22
I appreciate this very much. It's a high likelihood that you'll be back on the podcast one day, but let me thank you, as if I'm never going to talk to you again. I really do appreciate

Liz 1:21:31
this. Thanks. Thank you so much. Scott.

Scott Benner 1:21:33
No, sir, will you please send me all the links and your notes and everything. Would you do

Liz 1:21:37
that? Yeah, yeah, I apologize in advance for my scribbles. No, I'm telling you, you have

Scott Benner 1:21:41
no idea. You drop an AI and you say, transcribe this, and it just writes it out. It's awesome. I don't know what you people aren't doing out there, but it just works so well for some things. It, by the way, it doesn't work well for other things. But when you find what it works well for, pretty awesome. Let me let you go. Hold on one second.

Liz 1:21:58
Okay. Thanks so much, Scott.

Scott Benner 1:22:06
Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice, box or call 888-721-1514, my thanks to us, med for sponsoring this episode and for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all of the sponsors. Today's episode of The Juicebox Podcast is sponsored by the Eversense 365 you can experience the Eversense 365 CGM system for as low as $199 for a full year visit ever since cgm.com/juice box for more details and eligibility, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698 in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrongwayrecording.com. You.

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