Patient Advocate & ThyroidChange Co-Founder, Denise Roguz shares about her own journey with hypothyroidism and Lyme disease, how to advocate for yourself as a patient, and the future of health information site ThyroidChange.
Marina Tarasova: [00:00:00] Welcome to My Happy Thyroid, your source for all things thyroid health and wellness. My Happy Thyroid is presented by Paloma Health, the first online medical practice focused on living well with hypothyroidism. So thrilled today to have Denise Roguz with us — the founder and operator of Thyroid Change. So welcome, welcome Denise.
Denise Roguz: [00:00:29] Oh, thank you. I appreciate it. Also I wanted to mention, I'm a co-founder of Thyroid Change. I just wanted to mention that Michelle Santonastaso is the other co-founder, but she's no longer, working with Thyroid Change because of COVID and working with her children and she chose to take some time away. So I always want to put that out there because, she's been, so important to the founding of Thyroid Change, too. Thank you for having me, though.
Marina Tarasova: [00:01:00] It's a pleasure. So you are doing sort of your COVID days right now from home outside of Detroit. Is that right?
Denise Roguz: [00:01:07] Yeah, that's right. I'm outside of Detroit, about oh, 20 miles north.
Marina Tarasova: [00:01:13] Cool. And is that where you grew up? Are you from the Midwest originally?
Denise Roguz: [00:01:17] Yes. I did — twice. Growing up, was born in Detroit, grew up in California, then Ohio, and then back to Michigan. And then I did that loop again, in my adult years. So Michigan to Oregon, to Memphis, Tennessee, then back to Detroit. So I'm back in Detroit.
Marina Tarasova: [00:01:35] Back home, if you will. I'm always fascinated to hear about people's stories and how it brought them to where they are today. And I'm just curious, growing up, was any family in the healthcare space. Tell me about your life growing up?
Denise Roguz: [00:01:50] No, no one was in the healthcare scene. I have some cousins who worked in pharma, but that was about it. But no, mother and father were not in healthcare. My dad worked for Chrysler, as everyone's father did, and growing up in the eighties and nineties in Detroit, they worked for automotive.
Marina Tarasova: [00:02:08] What did you want to do when you grew up, if you will?
Denise Roguz: [00:02:12] I think when I was little, I wanted to be a veterinarian. But, other than that, high school years, college, I was geared to, art and design and, teaching art. And then, I ended up getting my Master's in higher education administration and organizational policy.
Marina Tarasova: [00:02:30] I feel like you have a creative background and also an educational background, which makes it a really...
Denise Roguz: [00:02:34] Yeah, yeah. And nonprofit, too. Work for nonprofits.
Marina Tarasova: [00:02:39] It all comes together with some of the work you're doing now.
I also understand, you've had, you had your own journey with becoming diagnosed with a thyroid condition amongst other things, and you had a pretty hard time initially getting your diagnosis. I think it was, you said, over two years and multiple endocrinologists.
Denise Roguz: [00:02:57] Oh, I started exhibiting some symptoms in my teenage years— especially cold intolerance. I was one of the kids in high school that was always bundled up in a sweater and turtleneck and wearing gloves in class, a cold nose, suffered from depression and anxiety. And I constantly went to doctors for other things and always told them I'm so cold all the time.
Why am I freezing? And they always blew it off. And they knew that all of my family members on my mother's side had a thyroid condition, but they never put the two together. But yeah, it took about, I would say maybe 16, 17 years. Yeah. And in three different states, when things got really, troublesome.
Marina Tarasova: [00:03:44] So tell me then about, so you saw doctors, you saw even endocrinologists, right? And then how did you come to get the diagnosis?
Denise Roguz: [00:03:52] I couldn't get out of bed, basically. It was that bad where my symptoms were affecting every part of my life. And, I'd also like to point out too. I didn't know it at the time, but, I was suffering from Lyme disease, as well. And speaking to several doctors, I know that Lyme disease symptoms and thyroid disease symptoms overlap, by 50% of Lyme disease symptoms or more. I remember my Lyme doctor showed me up a chart of how the symptoms overlap and it looked like about 75%. So it's, difficult to know what symptoms were from thyroid and which ones were from Lyme.
At the time, we moved from Michigan to Oregon. So I was out of a job anyways, but I just could not even muster up the energy to job hunt and to focus. It was so bad. I saw doctor after doctor. In those three years, when things got really bad from about 2009 to 2012, I must have saw 20 different doctors.
I think about three or four endocrinologists, a couple of rheumatologists. And so I finally found an integrative doctor in Memphis, Tennessee after reading some of the work of Mary Shomon. I know you're familiar with her and Stop The Thyroid Madness. And he was the one that finally diagnosed me and ran a full thyroid panel. She was the first one who ran a full thyroid panel.
Marina Tarasova: [00:05:31] Do you want to get to the specifics of the numbers? Share what was missed because it wasn't a full thyroid panel.
Denise Roguz: [00:05:37] Prior to that, every doctor, simply tested TSH. I asked one time about antibodies because I know my sister was diagnosed with Hashimoto's. And that physician's assistant mentioned that, if your TSH is normal— which mine was like a two at the time— she said we didn't have to run antibodies. I've now found out that's not true— that you can still have elevated antibodies and by the time I saw that integrative doctor, my free T3 was at the very bottom of the range— pretty much borderline from being well below the range— and the range is pretty broad in itself.
That's free T3 and free T4 was, basically the storage hormone was below the range. Antibodies were elevated.
Marina Tarasova: [00:06:27] Gotcha. So there was your diagnosis and then you were able to start treatment. How did it feel for you? Did it help immediately? Did it take some time to optimize the levels?
Denise Roguz: [00:06:39] It did take a long time because, at that time, I didn't realize that I had Lyme disease, in which active infections can affect how your body converts free T4 to free T3. And also, elevated reverse T3 issues were an issue for me. So shortly after that hypothyroid diagnosis, I did get the diagnosis of Lyme and then things made sense why I wasn't responding as well as I should to the natural desiccated thyroid that he put me on.
I felt some initial benefit at first. And then it stagnated. And then I felt like I got worse, as I was treating Lyme, too, but I would say it wasn't until the last two years that I felt more optimal. It's still a moving target for me because I am still treating Lyme.
So the thyroid levels is going to go up and down a little bit, but we're at a point now where I'm on —I've had some issues with natural desiccated thyroid over the last couple of years— so we decided to go through a compounding pharmacy and get super pure, rice filler, T3 and T4, which I have a lot more T3 in me right now than I would with natural desiccated thyroid. So that seems to be keeping me optimal.
Marina Tarasova: [00:07:52] Great. I'm glad you found something that's working well for you after a very rocky journey. So after you went through all that, tell me about what propelled compelled you to join with Michelle and start Thyroid Change and how you went about it.
Because a lot of people would go through that struggle and would maybe talk to friends and family about it and just move on with their lives. But you took it upon yourself to actually create something that would educate other people, make sure they're not in the same position , starting petitions, working with doctors, working with advocacy groups. So tell me what, what do you think was the spark in you that said, This can't be the way that it is?
Denise Roguz: [00:08:32] I was so bed bound and sick and she was too. I think we, we had nothing else to lose. We never set out thinking, Oh, we're going to create this international movement. It just happened by accident. It started with the petition. She wrote the petition. I saw her on a thyroid Facebook group and, it was really well-written and I reached out to her, we modified the petition, we tweaked it. We sent it out to about 50 mandating medical organizations worldwide. We started posting it on different international Facebook groups for thyroid or endocrinology groups.
And suddenly we were having people following us, doctors reaching out to us. We had some celebrities reaching out to us, so we were like, okay, we need to house this somewhere. And we ended up creating a simple website through Weebly and, then it just snowballed from there. Our main way as we were building it, and we realized we had something there, we realized that we needed an army for change instead of select people doing their own thing here and there.
Strength is in the numbers. Strength is in the research. Strength is in the doctor's clinical experience and what they're experiencing, too. So we tried to combine all of that into something called Thyroid Change for the diagnosis and treatment of thyroid disease.
Marina Tarasova: [00:10:05] That's amazing. And you met Michelle in one of the thyroid Facebook communities?
Denise Roguz: [00:10:10] Yeah. One of the thyroid Facebook groups.
Marina Tarasova: [00:10:14] They're very powerful. I love that. I love to hear that. They're powerful communities and people really support each other in them. And there is, there is a gap in access to care. There's a lot of wait lists to see endocrinologists across the country, not every doctor is on board with the latest science, people are really taking it upon themselves to educate themselves and they are really powerful groups. That's really lovely to see you guys found each other and we're able to do such amazing things together. So congrats on that!
What would you like people that take away? From all your work, what are some of the takeaways that you have that you want people to know who are listening, who might be struggling with symptoms, and who haven't been able to find the thing that works well for them or the doctor that works best for them?
Denise Roguz: [00:10:55] Yes, sadly, it really has come down to you really have to be your own health advocate, in our current medical climate and state of healthcare right now. In my own experience too, I haven't been able to trust all of my doctors over the years. And I think so many patients and in our current culture and climate is that we take our doctor's word for it and that's it.
And quite honestly, I feel like the medical system has failed me twice in a major way once with thyroid disease and with Lyme. Lyme has been really difficult to get the care that I need. I guess the takeaway that I found is 1) to be your own advocate and 2) try to find, those integrative or functional medicine doctors, because I'll tell you right now— and I know regular general practitioners have worked fantastic for other people— but for me in my whole health experience and journey, which has turned my life around in a complete 180, I have found the best care with integrative and functional medicine hands down. I would not have gotten better if it wasn't for that type of model.
Marina Tarasova: [00:12:07] Yeah, thank you for sharing. There's a lot of improvement, I think, to the regular, everyday healthcare system that needs to be done. So thanks for all the work you're doing and thank you for sharing that. I'd love to know what initiatives do you have planned for the future of Thyroid Change? So what people can look forward to with your organization?
Denise Roguz: [00:12:24] Oh, thanks. Right now Thyroid Change is mostly a volunteer effort for me. And I'm hoping to change that, only because I want to reach a larger audience. But I do need funding for that in order to take it where I want it to go. We are international but there are so many pockets of the world that we're not reaching.
And we see them occasionally come up through the website— someone's reaching out from Pakistan, but they were like, I found your website because of some English person. We're just not reaching that audience What I'm working on right now, through a couple of key stakeholders that have generously donated, I'm working on a new website, so there will be, a new doctor database.
It's easily searchable, more resources like you guys there at Paloma Health—which I think you're doing a fantastic job doing with connecting patients with doctors who get it and having the accessibility of full thyroid labs, which I think is fantastic—we'll also have a product resource page.
That's what I'm working on right now.
Marina Tarasova: [00:13:28] Yeah. A lot of people are going to find you through their phones, so that'll be exciting. And if people want to follow Thyroid Change, how can they follow them and you, Denise? Where's the best place to find you?
Denise Roguz: [00:13:40] Oh, our website is thyroid change dot org. We are also active on Facebook, Instagram, and Twitter. So you can just use the handle @thyroidchange for each of those. And that's where you'll find us.
Marina Tarasova: [00:13:55] All right. Terrific. And thank you so much for joining us today, and we will look forward to speaking with you soon, Denise.
Denise Roguz: [00:14:03] Absolutely. Thanks so much for having me.