Episode 1 | Listen to the Patients

The first episode of the Thyroid Deep Dive podcast focuses on thyroid patients...their stories, their struggles, and their successes.

TRANSCRIPT

Dorothy Zbornak: Dr. Budd?

Dr. Budd: Yes?

Dorothy Zbornak: You probably don’t remember me, but you told me I wasn’t sick. Do you remember? You told me I was just getting old…

Dr. Budd: I’m sorry, I really don’t…

Dorothy Zbornak: Remember…Maybe you’re getting old. That’s a little joke. Well, I tell you, Dr. Budd, I really am sick.

Dr. Budd: Well, I’m sorry about that.

Dorothy Zbornak: I’m glad. At least I know I have something.

Dr. Budd: I’m sure. Well, nice seeing you.

Dorothy Zbornak: Not so fast. There are some things I have to say. There are a lot of things I have to say. Words can’t express what I have to say. Dr. Budd, I came to you sick. Sick and scared. And you dismissed me. You made me feel crazy, like I had made it all up. You dismissed me. You made me feel like a child, a fool, a neurotic who was wasting your precious time. Is that your caring profession? Is that healing? No one deserves that kind of treatment, Dr. Budd. No one. You’d better start listening to your patients. They need to be heard. They need caring. They need compassion. They need attending to. You know someday Dr. Budd, you’re going to be on the other side of the table. And as angry as I am and as angry as I always will be, I still wish you a better doctor than you were to me.

~ Excerpt from Golden Girls episode titled “Sick and Tired,” 1989

MARY SHOMON: Do you want to finally feel and live well with a thyroid condition? Then I want to welcome you to the Thyroid Deep Dive podcast. It’s time to dive in!

I’d like to welcome you to the FIRST episode of my new podcast, the Thyroid Deep Dive. And I also want to congratulate you, because you’re taking one of the most important and essential steps to help you feel and live well with a thyroid condition: you’re educating yourself!

There’s no getting around the reality: for many of us, the healthcare system is broken, and we’re paying more than ever for it. And that’s evident when we look at thyroid care in the U.S. At least 20 million people have diagnosed thyroid conditions, and many of them STILL don’t feel well. And it’s estimated that as many as 20 million MORE people – mostly women -- are walking around with thyroid symptoms who aren’t even diagnosed yet.

Are you wondering WHY? I’ll be looking at these issues in upcoming episodes of the podcast.

Then there are treatments. Sometimes they work perfectly as advertised. And frequently, they leave you still feeling exhausted, depressed and anxious, brain fogged, and gaining weight. You’re struggling. And when you tell your doctors, many of you are told that “it’s in your head,” or “it’s normal at your age,” or “it’s just your hormones, dear,” or my favorite, “you have fork in mouth disease.” Yeah, that’s actually what one doctor told a woman with an undiagnosed thyroid condition who was gaining weight.

The days of a family doctor you see for decades, and unrushed visits to the doctor are gone for most of us. Instead, we get 7-minute speed dates with our doctors, where we rush through all our symptoms and questions, and barely get to discuss treatments or options. The clock is ticking, and the doctor is tapping away on a keyboard, often only half-listening. Big surprise… for many of us, this is NOT working!!!

It’s time to apply some common sense. I mean, really. If your toilet is clogged, you call a plumber. But would you keep calling back the same plumber– much less paying him or her – if every time they claim to have fixed the toilet, it’s STILL clogged, and the plumber can’t even explain why? (Or better yet, the plumber tells you that living with a permanently clogged toilet is your “new normal?”) No, you’d start asking around, you’d do your research, and you’d find a plumber who CAN FINALLY fix it for you!

That is what the Thyroid Deep Dive podcast is all about. Because you can’t ask about options if you don’t even know they exist. You can’t ask about treatments if you’ve never even heard about them. You can’t challenge the status quo if you don’t know what it even IS when it comes to your thyroid care. How can you troubleshoot your medications if you don’t even know what’s in them? How can you ask about tests if you’ve never heard about them, or you don’t understand what your results mean? How can you choose the right kind of practitioner for you if you don’t even know what you need?

How can you feel and live well with a thyroid condition if you don’t even know that it’s possible?

My podcast is all about laying out those possibilities for you. I have my own story – I was diagnosed with Hashimoto’s hypothyroidism in 1995, and it took years of struggling to find the right treatments. I’ve shared my own experiences, as well as the real-life stories of thousands of thyroid patients, in my books and advocacy efforts for almost a quarter century. I’ve also heard from thyroid patients every single day for almost three decades. In person, by email, during coaching and workshops, on the phone, and on social media. I know their stories inside out. I’ve heard from patients whose experiences made my cry, left me enraged, AND, the stories that gave me hope, and made every minute of what I do worthwhile. And every story has made me more committed to my mission: to fast forward you up the learning curve, and get you to the best part of YOUR story, the part where you feel well and live well with your thyroid condition.

Whether you’re new to a thyroid condition, or you’re an old hand, you’re going to take away something new from every episode, ideas and information and advice you can put into immediate use.

So, in this episode, the first episode of the Thyroid Deep Dive, I wanted to put the spotlight on patients. You’ll hear much more from these and other patients in future episodes. But I wanted to start the podcast by giving you some hope that wherever you are, it CAN get better. You CAN feel and live well.

But, here’s the thing. You’re going to have to do some homework, and master your own advocacy skills. I know it doesn’t seem fair. After all, you’re not the doctor, right? But it’s unavoidable. And just like they always recommend that you have a dive buddy, I’m here to help you. Consider me your dive buddy.

This is Episode 1, “Listen to the Patients.”

Initial Diagnosis

MARY SHOMON: You may have symptoms for months – or even years – before you get properly diagnosed. And it doesn’t seem to matter even if you’re a health professional. Leona, a registered nurse in Oklahoma, described her experiences:

LEONA: I've been an RN since 1983. And worked in a variety of areas. So, I have pretty extensive experience in nursing and in health care. But in 1993, towards the end of the year, I started having issues with seasonal allergies, which I had never had before. I was at that time in my 40s, and just weird things, yeast infections, allergies, sinus infections, just feeling tired. I would be standing in line at Hobby Lobby or something, and I'd feel like my heart was racing or I was gonna pass out and I thought, “Oh my gosh, am I just gonna pass out amongst all these strangers and nobody's gonna know?” I had not had problems before and I am not a very panicky person. And so that really worried me. But every time I would go to my doctor, he would treat me for the current issue. A one point when I was talking about kind of the panicky feeling, he was talking about antidepressants and utilizing those, and I was like, “No, I am not depressed.” In fact, I was happily married and with kids, and honestly, I was fine. And I was like, “No.” In the summer of 1994, I was at my sister in law’s in New York, and we were eating steak and I choked on a piece of meat. I had been having difficulty swallowing. But I honestly choked and someone there had to do the Heimlich maneuver on me. Thankfully, they knew that and was able to dislodge the piece of steak and that really scared me then. When I got back, I went to my doctor and again, he's talking about antidepressants and stress and I'm like, “No, there's something wrong.” Now in all of this, I don't honestly have any idea why he didn't figure it out. He wasn't a new physician. But my hair was falling out. My eyebrows were nonexistent at that point. And I was gaining weight. And he finally did a thyroid test. And my TSH was really high.

MARY SHOMON: Can you believe that Leona had to have a near-death experience before her doctor was willing to test her thyroid?! There’s another issue, and that’s when you DO get tested. Two things can still go wrong. First, many doctors rely only on the thyroid stimulating hormone – called the TSH test. They don’t measure actual thyroid hormone levels, so they end up missing borderline and subclinical thyroid problems, and autoimmune Hashimoto’s. I’ll go into this much more in future episodes. But second, your TSH test result can fall within the so-called “normal range” – that’s the range that is used by many doctors to identify a thyroid condition. We’ll hear a lot more from long-time patient advocate Leslie Blumenberg later in this episode, but like many patients and some practitioners, Leslie has a really great one-liner that she uses to dismiss the whole idea of “normal.”

LESLIE BLUMENBERG: Well, normal is the setting on the clothes dryer, basically.

"'Normal' is the setting on the clothes dryer..." ~ Leslie Blumenberg, Patient Advocate

MARY SHOMON: So, let’s talk about “normal.” The CDC says that the official measurement for a fever is a temperature of 100.4 degrees or higher. So, if your thermometer says 100.3 degrees, you are technically normal. You don’t have a fever. I don’t know about you, but at 100.3, I am SICK. It’s the same thing with the TSH range. The TSH range runs from around .5 to 5. And when you fall in the upper end of that so-called normal range, many doctors say your thyroid is normal. You can’t see it, but I am making air quotes around the word normal! I have heard so many patients describe TSH levels that technically fall within the normal range, levels of 3.8, 4.2, 4.8, who struggled for months or years with thyroid symptoms…until they were finally diagnosed. Here’s Janice Burnham. She’s a wife, mother of two sons, and a dental assistant in Iowa.

JANICE BURNHAM: I'd happened to read women's magazines, probably Good Housekeeping or one of those, anyway, there was an article about low thyroid and how doctors sometimes miss that, and what the signs and symptoms were and everything. And everything I read pointed to me having that too. So, I was like, “Wow, I found the answer right away!” And so I called my doctor and he said, “You need a blood test,” and the doctor visit and everything. I’d gained some weight and was feeling cold and tired, just sluggish, mentally not doing as well, I was more forgetful than usual. And so I went to my doctor. And he kind of looked at me really skeptically. And he's like, “I don't think you have that, you're too young for that, you know, blah, blah, blah.” And I was 25 or 26 at the time. So, I was on the young side. And I didn't have anybody in my family that had it. And so I really didn't know anything about it. So, he said, “Look, we'll draw some blood and check, but I really don't think you have it.” And then he kind of just tossed it off. So, when I got the blood test back of course, he said, “It's all negative,” and that, no, I don't have it. And I was like, “Wow, I swear I was sure I had this.”

MARY SHOMON: Janice was, thankfully, eventually diagnosed with hypothyroidism. Ohio mom of 4 and medical scheduler Wendy Knight also struggled for years, and saw multiple doctors, before finally getting diagnosed.

WENDY KNIGHT: I found out when I was around 34 or 35, and my twin sister had it 10 years prior to me getting it. I knew, because as soon as I woke up, I was tired, so tired that I would have to lay down for another hour. And I gained like 10 or 20 pounds in a month. I had been talking to my twin sister about it and she said “It’s exactly what happened to me.” I was taking four naps a day, and I went to the doctor. And I was sent for bloodwork, which of course, it was within range, because the range is so wide, it’s from like, .4 or .5 to 5, which is way too much. I tried to get an endocrinologist appointment, and no one would see me because they didn't think I had a reason. I went to three other doctors here in Ohio, I went to one in Michigan, and I went to, I think three, out in Arizona. And they all kept saying that I was within range, and I did not need any medication. So that was over a period of like two and a half to three years. I finally went back to my family physician. And I was crying because I was so frustrated with the whole process. And I told him “My mother has it. My oldest sister has it and my twin sister has it.” And he said, “We are not going to treat the numbers, we're going to treat the symptoms.” So, he put me on the lowest dose. And that worked for a couple of years. And I felt so much better!

MARY SHOMON: Wendy’s story brings up a good point. If you have family members with thyroid disease, you are at a significantly higher risk of having a thyroid condition yourself. She was lucky that her last doctor knew that, and finally took action.

Difficulty Getting Treated and the Medication Merry-Go-Round

MARY SHOMON: Diagnosis is just the start of what can be a difficult journey for many patients. Many of us end up on what I call the treatment merry-go-round, with symptoms that don’t go away – or even get worse – and a constant chase to find the right treatment. Meanwhile, we’re pleading with doctors to run more tests, or change our treatment, and it can sometimes fall on deaf ears.

Ginny Mahar is a busy wife and mom in Montana. She’s also a patient advocate, and cofounder of thyroid lifestyle website ThyroidRefresh.com. Ginny described her first few years as a thyroid patient.

GINNY MAHAR: It was just a TSH test. That was all my doctor tested me for, for four years. And it was TSH testing only. I was put on generic levothyroxine. And I was tired all day, every day, for four years. And I think because I was tired, there's just that cascade of health issues that happens when your body doesn't have the energy it needs. So, I was sick all the time. I had so many issues, Mary. I would get laryngitis for weeks at a time, which is difficult when you're raising a two-year-old and can't speak to them, you know. All kinds of different things I was dealing with, but at my annual checkups where my doctor would retest my TSH and assure me that my TSH was normal, and I was on the right dosage of medication, I would mention, “I just don't feel like myself, I feel like my light is going out, I cannot lose weight to save my life. I'm tired all day every day. Could this possibly have something to do with my thyroid?” And I was assured, “No, because your TSH level is normal. It has nothing to do with that. It's just the aging process. You're just a tired mom.”

MARY SHOMON: Ginny’s story brings up an important issue. It’s far too common for women with undiagnosed thyroid problems to be told that their symptoms are due to aging, or being a busy mom, or being in menopause, or written off as stressed, depressed, or PMSing.

Award-winning documentary filmmaker and advocate Maggie Hadleigh-West depicted her own struggle for thyroid treatment in her documentary Sick to Death . Here’s Maggie describing the ups and downs of her thyroid treatment.

MAGGIE HADLEIGH-WEST: When I first was diagnosed, I was diagnosed with Graves’ disease. I drank radioactive iodine after an enormous amount of research and couldn't find any other alternative. My thyroid died its little death and I became underactive. And I was put on levothyroxine, was the first drug I was on. And truthfully, I felt terrible. I felt terrible, terrible, terrible. But I was confused. I didn't know a lot about thyroid disease then. And I thought that my thyroid had been taken care of, and what I was feeling had to do with something else that was going on. So, for a long time, I thought I had chronic fatigue syndrome…a long, long time. And then years passed of me trying various forms of levothyroxine. And, a couple of times I tried a little bit of Cytomel with the levothyroxine, and then Cytomel by itself, and that didn't work. I still felt terrible. With the T3, I felt very, very keyed up. T4, I always had this kind of feeling of hollowness, like something wasn't quite complete. And then when I was 53 -- I'm 61 now -- I went on natural desiccated thyroid, and on Armour Thyroid, and for the first time in my life, I was like, “Oh my God, this is what regular people feel like.” I was thrilled beyond belief. And symptoms I'd had for years just disappeared. First of all, I was awake, that was a miracle. And then I'd had carpal tunnel in my arms for 15 years at that point; that disappeared basically overnight. I just felt great. And then that sort of started to slide. I didn't stay at that sustained feeling of normalcy. Since that moment, nine years ago, I have gone to more natural desiccated thyroid and then less natural desiccated thyroid and then adding T3 and then coming down in the T3 so I found that it's a constant dosage tweaking. There's never been a year where I could say that, “Wow, my thyroid dosage is perfect.”

MARY SHOMON: Sheena Banks is a wife and mom in Alabama. Sheena was diagnosed as a teenager, but it was just the beginning of her two decades of round and round and up and down thyroid treatment.

SHEENA BANKS: I actually started my thyroid adventures at 15. I started having small symptoms, just little things, terrible headaches here, sore throats there. It really jumped off when I had an episode where my throat was so sore that I could barely swallow. My stepmother took me to the doctor. And that's when he explained that I had an overactive thyroid at the time. And I don't know what they started treating me with, but it just seemed as if the thyroid just grew overnight, and it just completely got out of hand. They sent me to a specialist and they tried different medicines. But I was on seven pills a day. They tried to control it and they couldn't. I ended up having to have a total thyroidectomy at 16. I was placed on Synthroid and you know, me being a young child, I thought the surgery would be the end all. No one told me that I will have to take medicine for the rest of my life. No one told me that. So, when they told me that, I refused to take the medicine, I’m sure it was about a month. I just didn't want to take it because I had been taking pills for a year at that time. They had to really explain to me that this is a matter of life and death. That's when I started taking Synthroid. We ended up switching to levothyroxine, and I’d been on that for years. And I got pregnant in 2015. And about a couple of years after 2015, I started having terrible depression. I was just sad. It was just a lot of things that was going on, but I knew something wasn't right mentally and I just felt that the levothyroxine wasn't working anymore. And I tried to explain that to my doctor, he wrote it off.

MARY SHOMON: One thing that is unique to thyroid patients is how often they have been on SO MANY different thyroid medications: different brands, different generics, synthetic, natural thyroid – all in search of the elusive medication, combination, and dosage that will FINALLY resolve symptoms. Here’s Ellie Rose Lovisetto, a management professional and yoga instructor in the Chicago area.

ELLIE ROSE LOVISETTO: Throughout my thyroid-lacking life, I have been on Synthroid, levothyroxine, of every shape, color, brand known to man. I've often had two different brands at the same time. I have so many bottles of them -- every size and shape and color -- that I could make a mosaic with all of them. I repeatedly get told, “Take this one. Take that one. You're high, you're low. You're fine. Continue.”

MARY SHOMON: Ryan Litchfield is a thyroid and health advocate and he blogs about health advocacy at ryansvoice.blog. Ryan has ridden the thyroid merry-go-round for several years.

RYAN LITCHFIELD: Back in around June of 2015, I was basically diagnosed with Graves’ disease, and for a couple of years, they tried me on antithyroid medication. I ended up making the decision to have my whole thyroid surgically removed. I had a total thyroidectomy and after the total thyroidectomy, they ended up starting me on the levothyroxine, the 175 micrograms, and this was the generic.

I've had to have my thyroid medication consistently adjusted. I've been on the generic levothyroxine for a couple of years, since the thyroidectomy. So, there will be times where I'd be hypothyroid, and then there'll be times where I'd be hyperthyroid. I would have days where either I'm losing weight or I'm gaining weight, or I'm experiencing a lot of fatigue or then I'm getting really anxious and depressed. Kind of like a yoyo, kind of like going through those peaks and valleys and having some of the sleep problems. And I also had some trouble with attention and concentration at times. And it definitely interfered with work. There would be days where I would get so emotional that people would be questioning, why am I getting so emotional and, it's because of my thyroid condition. And there'd be times where I'd have to go to the doctor and say, "You know, listen, I don't feel right, can this get checked?"

Just recently, I met with my endocrinologist, and she saw the levels and the results from being on the generic levothyroxine for a couple of years. And, she definitely agreed with me that something wasn't right with being on the generic levothyroxine.

MARY SHOMON: As Ryan described, the unresolved fatigue is one complaint that comes up again and again. Ellen Smiley is a New York-based cancer, COVID and thyroid survivor who had a similar experience:

ELLEN SMILEY: It got to the point where I would be sitting in a meeting at work, and my boss would be poking me, because I’d fallen asleep sitting in the meeting at the table. It really was a terrible situation.

MARY SHOMON: Brain fog and fatigue affecting our work lives is a common problem. Here’s Wendy Knight again.

WENDY KNIGHT: I was having a lot of issues starting to happen again. And I again talked to my twin sister, and she said she has issues with the fillers in generic medication. So, they switched me to Synthroid, actual Synthroid, instead of a generic. And again, that worked for a couple years. And then they started increasing, because my numbers were again going bad. And it wasn't that long with Synthroid, maybe a year or two. And then they started increasing my Synthroid. And then it just seemed like nothing was helping. This is my biggest issue, is my head is constantly in the fog where I can't think straight. I feel like I'm always, almost, for lack of a better example, I feel like I'm high, like I can't focus, ever. I cannot get enough sleep. It's so embarrassing. I fall asleep at work. And I see patients all day long. So it's embarrassing when that happens. And my coworkers can see me dozing off. And it's horrible, it's a horrible feeling. And then I can't sleep at night. And I know that this is why, because I know how my body's reacting. There’re so many things that it affects in me.

"You're Crazy!?"

MARY SHOMON: One aspect of thyroid conditions is that, for the most part, they’re invisible. Fatigue, depression, anxiety, brain fog – these are common symptoms, yet they’re symptoms you can’t really see, and they certainly don’t show up on a blood test. This is perhaps one of the most enraging parts of thyroid disease, but far too many of us end up being called “crazy” or we’re told we are suffering from mental health problems. Donna Schillinger is a mother of two adult children, and a hairstylist in the St. Louis area.

DONNA SCHILLINGER: I did take matters into my own hands. You see doctors, they ask you questions, they key the information into their laptop, iPad. And I'm sure then it comes out what's best prescribed for that patient. You know, I can't do this. They aren't listening to me. I don't think you can truly understand until you've gone through it. Even my husband was living with me for the last nine months, said, “What do you expect to get out of this? And I said, “No one understands.” And my girlfriend's the same thing. Looking at you, making you feel like you're crazy and you're making this up. They don't understand until you actually go through it. No one can.

MARY SHOMON: It's not just friends and family, it’s far too often the medical professionals, who just don’t get it, as thyroid advocate Leslie Blumenberg explains:

LESLIE BLUMENBERG: When you live a life of barely being able to get up in the morning, you have a totally different perspective on life. And that's the problem for so many patients, is they feel like they're in this well, like the old madhouses where they used to put women when they had problems. You're in this well, where nobody gets it. The doctor doesn't get it. The nurse doesn't get it.

MARY SHOMON: Sometimes, it’s obvious that the doctors don’t get it. Marg Sledziewski is an assistant university instructor in communications, a mom of 2, and grandmother to 6. Marg’s doctors were changing her dose almost weekly it seemed.

MARG SLEDZIEWSKI: Well, this endocrinologist said that I needed to increase my dose. And I was put on 94 micrograms a week, which is basically the hundreds and 88s so many times a week. And I was told to alternate my dose. And then I was told to take 100 a day. Well, after seven days of 100 a day, I woke up, my eyes swollen so bad, I could barely see and my hands shaking. I thought I was going to die, basically. And I said to her, ”There is something really bad going on here.” She said, “No, no, you're fine. You're fine. Your labs…” and I said, “You explain to me what the labs mean.” I was having CBCs, thyroid levels, everything done, every four weeks for seven years. And then I said to her one day, “I feel like somebody's got a vacuum to my body and they're just sucking my life away. I have no energy whatsoever. I am so tired.” They told me it was all depressive illness and put me on antidepressant. I curled up in a ball and I couldn't move. So, I went to my GP and I said, “I've had enough.” And the endocrinologist got angry and started screaming at me on the phone, saying that if I didn't do what I was told, I was going to die. And I said, “Well, I guess I'm going to die then. Because right now I'm not living.”

MARY SHOMON: Tara Flotta is a mother of three, studying for a master’s in public health. She found out the hard way that even after surgery to remove her thyroid, some doctors still have no idea how profoundly the lack of this essential gland is and how it can affect you.

TARA FLOTTA: About a week or 10 days after my surgery, I was at home. I was feeling faint, weak, frail, had some heart palpitations, I was home alone with my two-year-old son. I felt uncomfortable being home alone. And I knew on the discharge papers, it said, if you have any of these symptoms, call the surgeon. And I had an appointment on the books with an endocrinologist, but I was considered a new patient to the practice. So, when I called saying “I don't feel well,” they said, “Well, you're still considered a new patient, so we can’t advise you, you need to go to the surgeon.” So, I called the surgeon, and I will share with you what he said, because I know this is part of what we're all trying to accomplish here with thyroid advocacy. And when he picked up the phone, he said to me, “Is this attention-seeking behavior, or is something actually wrong?”

MARY SHOMON: Let that sink in. The surgeon took out an essential gland, and when his patient said she was not feeling well, asked her if it was “attention-seeking behavior.” Sometimes, to be honest, I wonder why some of these folks actually went into medicine in the first place!

Educate Yourself

MARY SHOMON: So, what’s the solution? Step one is educate yourself. As I said earlier, if you are not informed about treatments, medication options, tests, different approaches, and different doctors, you can’t ask about them or choose them. Every single patient I’ve ever spoken to who advocates for their own thyroid care said that it starts with knowledge. Here’s advocate Leslie Blumenberg:

LESLIE BLUMENBERG: This is your life. You're trying to get back to being a productive person. In fact, you might be productive now, but hey, maybe when you're not hypothyroid anymore, you'd be really productive. Not only will you get your life back, but you get your body back. In other words, nothing aches all day long, and you can use your muscles. But your brain…it's our most important asset. And when I was severely hypothyroid, one day, I literally was writing something and I pondered how to spell “the.” Is it T-H-A? Is it T-H-E-E? I literally could not figure it out. I graduated third in my class in college. I should know how to spell things. Couldn't do anything, couldn't think. I’d literally doze off in front of the screen. I am so amazed always by how a small amount of knowledge about something that pertains personally to you can make all the difference in the world. Maybe we’re on information overload, but I love it personally.

MARY SHOMON: Tara Flotta put it starkly when she asked an important question: if you don’t educate yourself, what IS the alternative?

TARA FLOTTA: My hope was emboldened by my knowledge. So, the more I read your newsletters, your books, Dr. Blanchard's books…the more I educated myself and read stories about other people who had gone years, decades, hypothyroid but ultimately found a treatment that worked. I was able to just make the connection in my brain that that will happen for me too at some point, I don't know when, but at some point, it will. Finding something in your brain that helps you feel motivated and hopeful, so that you're not bogged down by the day to day and you give up. And really, to me, what was the alternative? I had a quality of life at some point prior to that surgery. So, if I didn't advocate and continue to try to find a doctor who was willing to work with me, the alternative was, I was going to accept that lower level of functioning forever? I couldn't live with that. I don't think anybody deserves to live with that.

MARY SHOMON: Whether you have a file cabinet or computer files, or a notebook, research and keeping track of information is crucial. Leona is not the only patient I’ve spoken with who carries around a big binder full of thyroid information.

LEONA: Over the years, I just thought I'm never I'm just never going to be back to the pre-thyroid me and, honestly, that depressed me more than anything That even with medication, because that's what they say, “Oh, well, we're giving you thyroid medicine and your numbers are coming down and you know, blah, blah, blah.” But I never felt better. And somewhere in all of that, actually, I started looking for information. I think it was having your blogs and your websites and your emails and stuff, but that was honestly the turning point for me because you were talking about adding Cytomel, and you were talking to all different kinds of physicians. And so I was getting a lot of information from you.

I had a two-inch binder with all kinds of articles that I had printed out. Read what you can. Don't just take no for an answer. Find a physician that will partner with you. And if the standard treatment isn't working and getting you back to where you were, then look for other answers. I still think that all the information that you have provided is integral to every new person. I just think do your own research. I think you have to keep looking. You have to keep asking questions. Be your own best advocate.

MARY SHOMON: There are many books, articles, websites, webinars, newsletters, educational programs, and experts out there who will help you learn everything you need to know about your thyroid condition. You’ll find some of my favorites listed in my show notes and at the website. But there’s one resource I especially recommend. Please go and watch Maggie Hadleigh-West’s film, Sick to Death. I was honored to be interviewed for this documentary, and served as a consultant for the film. Maggie is not only a talented filmmaker, but she’s a passionate advocate, and Sick to Death is eye-opening…it’s a must-watch for anyone struggling with thyroid diagnosis and treatment.

MAGGIE HADLEIGH-WEST: So people can find my film at Sick2death.com. There's a direct link to Vimeo. It's also on Gaia. So wherever you see Gaia films, Sick to Death is there. You know, it's funny, the thing that kicked me in the gut was the suffering, because I thought for a long time that it was just me, that I was having this very isolated, alienated, sick experience all on my own. And when I realized that there were millions and millions of people just like me, that was catastrophic, and also the thing that compelled me to make the film. Because if it had just been me, that would have been no big deal. I just used myself as a vehicle to get to what was really going on everywhere. So that was the first thing was the suffering, and then the anger. You know, there's so many people that are angry, because they feel that they have not been able to reach their full potential, because they don't feel good. They haven't been able to live the kind of lives that they wanted to live, because of how they felt or how it impacted their ability to have children, or just the energy to be in a relationship or not being able to make the distinction between what’s me and what is a hormone imbalance. I know for myself, I thought that a lot of the symptoms I had were personality traits. I thought my having a high level of anxiety was just a part of who I was until I got on the right thyroid hormone and then I was like, “Oh my God, the anxiety was just gone”. It wasn’t me. That kind of thing can be very difficult or, people who have a child and then are diagnosed with postpartum when really their thyroid hormone has been thrown completely out of whack. And there was a fix that was right in front of them that they weren't able to access for years and years and years. Those are the things that really, really struck me. And then of course, coming to understand that the governing medical bodies are, of course, not on our side. They are there for their shareholders. That includes the medical bodies and the insurance companies. They don't really care about the wellbeing of humanity. They don't really care about the human potential that is being squelched. And that is across the board with illnesses. To me, that is so criminal and karmically wrong.

Finding a Doctor

MARY SHOMON: If educating yourself is job one, I’d say that equally important is finding a doctor or health care provider who truly partners with you for your thyroid care. Unfortunately, it’s sometimes easier said than done, as Ellie Rose Lovisetto describes:

ELLIE ROSE LOVISETTO: I have over the years been encouraged reading numerous articles on thyroid disease, to go and look for someone that actually is up to date, current with the goings on in the medical field for thyroid patients. And I've seen men, I've seen women, I've seen DOs, I've seen MDs, I've seen endos. And I get to a point where I tell them, “I still don't feel right. I feel puffy. I'm tired. I'm either hot or cold. My skin is dry and itchy.” I have had many, many different doctors tell me, “Well, we'll just run a TSH test and you'll be fine.” And I always go back to my follow-up appointments with these people, dreading the “You’ll be fine” or “You are fine. You know, there's no problems there, you’re fine..” It's an ongoing challenge to find someone that will actually believe you and not refer you to a psychiatrist or a psychologist, because you're so frustrated. I’m 5’2”, I’m 208 pounds, and I could drink water and eat boiled chicken for a year and not lose 5 pounds. So, something is definitely up in the world of the lack of having a thyroid.”

MARY SHOMON: It's not always easy to find the right doctor for your thyroid care. But don’t overlook one great resource that’s right there: your friends and family. Ask around, as Sheena Banks did.

SHEENA BANKS: After the doctor wrote me off, I literally felt so defeated. There was a coworker of mine, we would always talk about our thyroid issues because she also suffers from thyroid issues. I just decided to just tell her everything, just everything that I was dealing with, and she said “Listen, you need to switch doctors.” She recommended her doctor and I made the call immediately. I made the call right away and that was the best decision I ever made. And I spoke with my doctor and her nurse practitioner. I was literally able to have a conversation with them. I felt as though I was talking to my friends. They wanted to listen to me.

MARY SHOMON: In your search for the right medical care, don’t be afraid to doctor hop, or turn to new telemedicine options, as Leona reminds us:

LEONA: Honestly, you have reiterated over and over again about sticking out our necks and sticking up for yourself. And finding a physician. You know, nobody likes to doctor hop, that’s the other thing, because then you kind of get labeled and whatnot. You know what, thankfully my physician decided he's just going to put up with me. I would continue to go with him. It's kind of like, you know, if you've ever gone for professional counseling, and you decide you don't really like the counselor, you don't really want to quit, you're giving them the benefit of the doubt as long as you can. Because you don't want to switch, you don't want to start over. But in this instance, it's just so important to get back on track and I didn't think I ever would, honestly. I think it's honestly from you repeatedly saying, and the top docs, that's the other thing I think that started me in that direction. I thought, “Well is there somebody near me that I could go see?” I would have even traveled probably a couple of hours to see someone. And now, you can do telemedicine. That's the other thing. I feel like today's patients, it's entirely possible to do telemedicine.

MARY SHOMON: I brought up the example of a plumber earlier, and I want to remind you again here. If a plumber can’t fix your clogged toilet, what do you do? You cut that plumber loose, and you find one who CAN fix that toilet, right? It’s the same for doctors. Here’s Jeny Mills, a wife, mom, and actress in the Midwest:

JENY MILLS: I think you know it's time to cut a doctor loose when you don't feel like you're being listened to. And when you feel like you almost have to be too much of your own advocate. It's always important to be your own advocate, to know your own health, to know what does and doesn't work for you. And as much as people say don't do it, to go to Dr. Google and look up information, look up things for yourself.

MARY SHOMON: Maggie Hadleigh-West also emphasizes how important it is to find a doctor who truly listens.

MAGGIE HADLEIGH-WEST: I cut a doctor loose when they stop listening to me. When they start treating me as if I am just every other patient, then it's time for me to go. If they are listening to me, and integrating what I'm saying into whatever the protocol is, that's when I stay. And I've been working with the same doctor now for a few years. She happens to be a woman, and she is not brilliant. But what she is, is consistent, kind, she listens, and she tries to help me work through things. That is paramount. It's not all on them, it's also on us. I bring things to my doctor, as well as expecting her to bring things to me.

MARY SHOMON: How do you know you’ve found the right doctor for you? I agree with Tara Flotta, when she described how a doctor will make you feel from the moment you start talking with him or her.

TARA FLOTTA: When you are in front of a doctor, and you are explaining your symptoms and your story, when you get the feeling from them, where you do not have to convince them of the validity of your symptoms, that starts to tell you that that doctor is actually listening and interested in helping you. And I've had that experience. You know I started going into doctor's offices prepared, I'd be in the shower, and I would be practicing what I was going to say. And sometimes I had my husband come with me because I thought, “well, if there's a man sitting with me, they'll listen to me more closely.” And I tried all these different strategies. And then ultimately, when I finally sat in front of someone like Dr. Blanchard or Dr. Lee…It was so refreshing when they just expressed empathy and understanding. And when you don't have to convince them that there's a problem that needs treatment, then that's the right type of doctor to start working with. On the other hand, when you're feeling dismissed, condescended, gaslit, you know when it's happening because you feel shut down, and you feel intimidated to continue speaking, and you feel the fool for trying to tell them that you have symptoms that, maybe they don't really exist, maybe they are in your head and you start questioning yourself. Then that is not the right physician for you because that will never be a functioning, productive relationship.

MARY SHOMON: Are you sensing a theme here? Good doctors listen. It’s as simple as that. Good doctors listen. And, they give you the benefit of the doubt. If you have to work at convincing a doctor that you genuinely don’t feel well, it’s time to move on.

Advocating for Yourself

MARY SHOMON: So, you’ve educated yourself, and you’ve found – or you’re actively looking for – a great health care provider. What’s next? Well, this is where advocacy comes in. Back in the 90s, I launched my thyroid newsletter, and I named it “Sticking Out Our Necks.” Sure, the neck thing is a play on words and all, but it was also a description of what it takes to feel and live well with thyroid disease. In most cases, you are going to have to stick out your neck, AND stick up for yourself, to get the thyroid care you need and deserve. You’ve heard many examples of patients advocating for themselves already in this episode. Here, Jeny Mills explains it well.

JENY MILLS: I wish someone had told me just how much you have to be your own advocate. Because, when it happened to me, I was kind of shocked that I had to be the one to go in and say, “No, no, this isn't right.” And that I had to keep track of my blood reports. I printed them out, I had a binder full of my blood reports, so that I could get my newest one, and I could look back over them. And notice, “Hey, wait a minute, that went up, or that went down,” and do a little bit of my own research and say, “Okay, well, it's fine that it did that,” or “Wait a minute, it shouldn't really be doing that if my things are optimally balanced here. Maybe I should ask my doctor about that.” And I kind of had to make a pest of myself and ask a lot of questions. And, sometimes my doctor was like, “Yeah, no, that's fine. Don't worry about it.” And sometimes they said, “Hmm, well, we'll keep an eye on that.” That's true, it shouldn't really be doing that. We'll check again in a month.” And I don't know if I would have gotten that result, had I not been a pest and asking all these questions. But it really kind of shocked me how much I had to do that. And you have to do it less when you have a really good doctor. And they are out there. They're hard to find, but they are out there. And if you have the ability to, if your insurance allows you, if you go to a doctor, and you really don't feel listened to, or you ask questions, and you feel like you're bothering them, they probably aren't the right doctor for you. And keep looking. And it's okay to doctor shop, it's perfectly okay. Because you need to find that doctor that you feel comfortable with. You need to find that doctor that you feel doesn't care that you ask all sorts of questions and recognizes the fact that you're taking an interest in your own health. And you're taking an interest in understanding how your issue and your medications all work together. And realizing that you're going to be the first person to know when something's not right. It's not going to be your doctor. And it may not even be your blood report. You're gonna feel it. And it may be slow, it may be slight, but you’ve got to take note of how you're feeling and bring that up to your doctor. And don't be afraid to voice everything that you're feeling and things that you're noticing. Because it may just be the key to finding what's going to work the best for you.

MARY SHOMON: Another thing to remember: Advocacy doesn’t have a finish date. It’s something you need to do consistently when you have a chronic health condition, as Sheena Banks explains:

SHEENA BANKS: I would say to advocate for yourself, that's what I would say. Because you know how you feel. Don't let a doctor tell you how you feel or “You should feel this way.” You know, how you feel. You've lived in your body for however long you've been here. You know when something different is happening, and, and you stand up for yourself, Because I didn’t. I really didn’t at first. I felt defeated until I spoke with someone and she helped bring that out of me. But this is what I'm saying to you: advocate for yourself. If you know something is not right or something is different, talk to someone and if your doctor is not listening, find a doctor who will listen. There are doctors out there who will listen to you. And if you have to go to from doctor to doctor until you find the one who will listen to you, that's what you have to do. Even though I've been doing this for years, I still have to go back for adjustments. And I don't know everything, so I still have to advocate for myself when I go and I have to be firm and say, “Hey, no, this is this is different. I know this is different.” And you have to really stand on that. Don't just accept someone saying, “No, everything is normal. You should be fine. This is what you need to do here.” You can maybe try those things, but if you know something is different within you, advocate for yourself.

MARY SHOMON: It’s not only important to understand your condition, and advocate for yourself, but you need to know yourself. Ryan Litchfield explains it so well.

RYAN LITCHFIELD: It really comes down to knowing yourself. You've got to know your body. You've got to know what are you thinking, what are you feeling, what’s going on, do you feel off? It’s basically you're your own advocate. You're going to know when you're tired, you're going to know when you you're anxious or depressed. Knowing when you might not have the concentration or the attention. You just know when you're off. If I were to put key emphasis on that one really critical thing, it would definitely be knowing yourself.

Success!

MARY SHOMON: What does success look like, as a thyroid patient? To me, success means that you’re generally feeling and living well, and if you don’t, you are on a clear path to get there, with the right support. You understand your condition, your tests, and your treatment. You have productive partnerships with your health care providers, and they listen to you and work with you. You’ve found – or are working on finding -- the right dose of the right medication – whatever medication that may be – to best resolve your symptoms, safely. You stay up to date, and advocate for yourself. And you never give up hope.

It took time, but here’s Wendy’s Knight’s success story. Her doctor had recommended that she try Tirosint, and after the prices came down, and she was able to afford it, she decided to try it.

WENDY KNIGHT: My primary care tried to get me to switch to Tirosint. And I thought, “Okay, I'm just doing it, I have to do this and try it.” So about two weeks in, I called my doctor and I said, “It's not working.” And he said, “Just please stick with it. Give it a chance, give it more than two weeks.” And within two more weeks, it was the clearest. I can't even tell you the last time I felt like the brain fog was completely gone. And I wasn't tired. When I got home, I went for four to seven mile walks every day, I had so much energy, I felt normal, for lack of a better word, I felt normal. And I hadn't felt that in 15 years.”

MARY SHOMON: Ellen Smiley made a switch from Cytomel – synthetic T3 – to Armour natural desiccated thyroid:

ELLEN SMILEY: Then I took myself off Cytomel, and I still had some of my Armour tablets left in the prescription bottle. So, I went back onto the Armour, using what I had left. And I would say that it was between 36 and 48 hours, I felt a dramatic difference in the way I felt. I mean, just everything started to feel like it was functioning normally again, and it began to feel like I wasn't going to die. Which I had been feeling previously.

MARY SHOMON: Sometimes, success comes from changing just one thing, as Leslie Blumenberg explains:

LESLIE BLUMENBERG: My story of being an advocate and an educator starts about 25 years ago, about the time you started your first forum. I was looking up all sorts of things. Ben gave me his secondhand computer. And I looked at him, I said, “What in the world am I going to do with this machine?” And this many years later, I am still doing it. I searched. I kept seeing these little things. In the meantime, I was in perimenopause. Nobody was helping with anything. So, I saw all this stuff about soy. And so, for two years, I made myself sicker and sicker and sicker, eating soy, thinking I was doing this wonderful thing for myself. Until 1999, it was spring 1999 when I saw your article, “The Dangers of Soy for Thyroid Patients.” I read that article and threw it all in the trash. Within a month, my TSH went from the top of the range to the bottom, and my T4 went from the bottom of the range to the top. My doctor couldn't believe what happened. She thought I lost all that weight because maybe I had cancer or something. She couldn't believe how my whole self, my whole personality, changed.

MARY SHOMON: So, Leslie cut out soy, and that one change made all the difference for her. Janice Burnham too made one change that had a dramatic impact.

JANICE BURNHAM: So the other thing that I've found out in the 90s and this was a big game changer for me. I started taking the Synthroid at night. And I've probably been doing that for about 20 years and I really, really feel much better taking it at night and I would never go back to taking it in the morning.

MARY SHOMON: Ginny Mahar struggled with unresolved symptoms after years of treatment, but once she got on track, the good news is, success came pretty quickly:

GINNY MAHAR: You want to trust what your doctor tells you. And it was this is the standard of care as we know. But I hit rock bottom after four years and kind of took the reins and started doing my own research and realized, “Oh, my gosh, I need a complete thyroid panel. And I think I need a new doctor.” And so that really changed things for me. So that was about five years ago. And when I made that decision to take the reins, get a new doctor, get the complete thyroid panel, look at optimizing my medication, look at changing my lifestyle, look at really addressing this issue, it was really just a matter of months before I had my life and energy back, which was absolutely life changing for me, after four years of being feeling horrible.

MARY SHOMON: In the end, success requires not just education but faith – and hope -- as Tara Flotta explains.

TARA FLOTTA: You have to have a little bit of faith and willingness to try something new. Sometimes it feels like you’re jumping off a diving board with blinders on. But I thought, “Well, I can't sustain this way of living. So, I'll try it.” And it took a few months, but it worked. So finally, after eight years, we finally found a medication combination and a dose that works for me consistently. And I've been on the same dose and medication for 13 months for the first time, since my surgery in 2011.

I always held out hope. And the hope is what I feel got me and gets people through the day to day frustration, because if you viscerally believe that at some point, you will find your answer, your medication, your combination of medications that are actually therapeutic and bring you your quality of life back. If you have that hope and belief, then you will have the fortitude to keep going until you reach that point.

MARY SHOMON: I’m here to tell you that you WILL find your answers. You WILL find the treatment that will bring back your quality of life. You WILL feel well and live well with your thyroid condition. But you need to take the dive – the dive into education, empowerment, and advocacy, like today’s guests.

Speaking of my guests, I want to thank these passionate, committed patients who spoke to me for this episode. Each one of them, in her or his own way, is a hero, out there fighting the good fight to live and feel well. I’m so grateful that they generously shared their time and experiences to help us all.

I hope you join me as we continue to explore thyroid disease. You can subscribe to the Thyroid Deep Dive podcast – you’ll find it at your favorite podcast apps and platforms, and at the website, www.thyroiddeepdive.com. More information, a complete transcript of this episode, and helpful resources and links, are all available at the website, thyroiddeepdive.com.

This is Mary Shomon, and I want to thank you for listening to the Thyroid Deep Dive. Today, and every day, may you feel well and live well.