This webinar was recorded on September 11, 2024 as a part of the TED Community Organization’s EDU series hosted by Dr. Layla Lohmann. The TED Community Organization is a 501(c)(3) nonprofit dedicated to education and support of patients, caregivers, medical professionals and individuals who advocate for those who affected by Thyroid Eye Disease.
Host:
Dr. Layla Lohmann, TED Community Foundation
Featured Speaker:
Dr. Alon Kahana, Kahana Oculoplastic Surgery
Living with Thyroid Eye Disease
Living with thyroid eye disease (TED) can be very challenging in many aspects that go far beyond just eye health. In this TED Community Organization EDU series webinar, host Layla Lohmann sits down with our own Dr. Alon Kahana, an internationally renowned orbital surgeon, to explore the complex day-to-day aspects of living of TED patients.
Dr. Kahana brings a refreshing whole-person approach to treating this debilitating autoimmune condition, addressing not just the physical symptoms but also the emotional, interrelation, social and workplace impacts on patients’ lives. From cutting-edge treatments to practical lifestyle guidance, this discussion provides valuable insights for anyone affected by TED, whether they’re patients, caregivers, family, friends, or healthcare providers.
Dr Kahana Addresses These Questions and More
-
Of the physical symptoms associated with TED, which ones do you see as the most disruptive of one’s quality of life and why?
-
Do your patients confide in you about feelings of isolation, depression, and anxiety? If so, how do you counsel them?
-
How would you define self-care and how can we best practice this as TED patients?
-
This is a very innovative time for research into TED. When looking toward the future, what is your hope for TED patients in terms of solutions for this often-devastating autoimmune disease?
About Dr. Alon Kahana and His Practice, Kahana Oculoplastic and Orbital Surgery
- Dr. Kahana is an expert in orbital ophthalmic plastic surgery, specializing in thyroid eye disease
- Clinic serves patients throughout the Midwest and beyond
- Specializes in both adult and pediatric cases, with patients as young as 5 years old
- Ephasize a whole-person approach to treatment
Impact of TED on Quality of Life
- Pain: Patients experience chronic eye discomfort, often described as feeling like having sand in the eyes
- Vision Issues: Can include double vision, especially when looking sideways
- Psychological Impact: Many patients experience isolation, depression, and loss of confidence
- Social Impact: Patients may withdraw from activities due to light sensitivity and appearance concerns
Treatment Approach
- Treats the whole person, not just symptoms
- Advocates for appropriate medication management (especially regarding levothyroxine)
- Works closely with all patient specialists, particularly endocrinologists
- Makes himself highly accessible to patients, including sharing his cell phone number with many
- Provides extensive educational resources through his website
- Patient Care Recommendations:
Diet and Nutrition
- Focus on whole foods
- Suggests moderation with inflammatory foods
- Recommends being cautious with dairy due to potential immune responses
Sleep and Stress Management
- The importance of prioritizing adequate rest and sleep
- Stress can trigger autoimmune responses
- Emphasizes the need for self-care, especially for women who tend put others’ needs above their own
Support Systems
- Patient communities, support groups, and counseling
- Bring someone with you to doctor appointments
- Important to be proactive in medical care
- Patients not be afraid to ask multiple questions of their providers
Future of TED Treatment
- Anti-IGF1 Receptor inhibitors like Tepezza
- Promise in developing treatments that block the initial disease trigger
- Significant investment in TED research due to proven market potential
- Predicts major treatment advances in the next 20-30 years
TED Quality of Life and Self-Care Webinar Transcript
Well, I want to thank you for coming. Welcome to TED Community Organization TED EDU series. My name is Layla Lohmann. I am a dentist, wife, mother, TED patient and host of the TED EDU. Today I’m talking with Dr. Alon Kahana. He is an internationally renowned expert in orbital ophthalmic plastic surgery at Kahana Oculoplastic and Orbital Surgery.
[00:27.0]
This is a destination clinic for patients throughout the Midwest and beyond, offering the latest surgical and non-surgical techniques with a deep understanding in particular of thyroid eye disease. Part of Dr. Kahana’s commitment to excellence is innovation and the opportunity for patients to participate in regular patient-centered forums that help educate and engage patients.
[00:50.1]
That type of support helps families and caretakers as well as patients. We at the TED Community are particularly interested in Dr. Kahana’s comprehensive approach to treating the whole person and not just the disease. So today we’re going to talk about TED quality of life issues and a role that self-care plays in the TED patients healing journey. Dr. Kahana, welcome.
[01:13.8]
How are you? Thank you very much for the very kind and generous introduction. I’m happy to be here. And, and you’re right. I have done this in different types of crowds with just a few individuals to as many as literally thousands, and everything in between.
[01:36.5]
But usually it’s dozens to hundreds at a time. And then facilitating discussions because the real work happens after you… I might introduce people, bring them together, but just like here in Michigan, there’s now a group, kind of like a club that supports each other.
[01:55.7]
People come together. Sometimes they borrow the reception area in my office on Sunday afternoons to meet. Other times they’ll do something else. They connect on Facebook. This organization is a way for people to connect across the country, now Europe also, which is pretty cool.
[02:14.3]
This is a problem. There is a disease, thyroid eye disease occurs on every continent in every ethnicity. It is significantly affecting women more than men, just like all autoimmune conditions. And it has what we call a bimodal distribution, meaning it’s younger women and then middle aged women.
[02:38.5]
It is uncommon for people over 80 to get it, but I actually have some patients who got it in their 80s and even 90s. Yeah. The male… What’s the youngest? What’s the youngest? Age? Five.
[02:55.3]
Wow. Five years old. Yeah. And so, I… It’s very uncommon to have Graves’ disease in general as a child, but it occurs and we can talk about the rise in autoimmune conditions in general in this country, which is leading the world in the wrong way in autoimmune conditions and how it’s affecting our children in particular.
[03:22.4]
But then thyroid eye disease only occurs in a fraction of the patients who have thyroid Graves’ disease. And those patients, usually at one point or another will be referred to me because I, I do oculoplastic and orbital surgery in general, but I’m one of the few people in the country who also particularly specializes in pediatric oculoplastics, not just thyroid, but congenital ptosis, congenital deformities, trauma cancer, pediatric orbital cancer.
[03:50.6]
And so I do have patients all across the country who have those issues because a lot of people don’t want to take care of kids. But anyway, that just. They don’t want to take care of kids because it’s scary if you get it wrong, it’s a little bit of fear of the unknown. But it’s, it’s…yes.
[04:09.2]
And it’s hard to examine kids. You never really examine kids. The way that you examine kids is you play with them and they don’t know that you’re examining them. You’re playing hide-and-seek. Yesterday I was playing with this two-year-old boy, came with his cars and trucks, and so we were playing with his cars and trucks.
[04:26.5]
And while we’re playing, I’m looking at his eyes, trying to figure out which eye is tracking, which eye is dominant, which eye is using, which eye is not, which eyelid is working, etc. And also you need to take care, deal with, deal with the parents.
[04:41.6]
And I’m a parent of children and you’re a parent of three children. And, and whenever you take care of a child, you’re taking care of the whole family. And just like when you take care of an autoimmune patient, you take care of the whole body.
[04:56.8]
The autoimmune condition might manifest in a knuckle or an eye or gut, but it’s actually everywhere. And you’re just seeing certain symptoms in a particular organ system, but it’s throughout the body. Realize that the immune system is throughout the body.
[05:14.0]
So the autoimmune condition is throughout the body. And I’m a big believer that you have to take care of the full body, not just the, the disease symptoms themselves. We have a new person just joining us. Yes, thank you. Thank you.
[05:31.7]
Well, speaking of the whole body, how do you define quality of life? Specifically with, I know, you know, you deal with all kinds of autoimmune diseases, but specifically with TED, how would you define quality of life as it relates to someone who’s diagnosed with that. Well, so thyroid eye disease affects so many different things.
[05:54.1]
So let’s start talking about the most basic, which is living without pain. Pain. When I blink my eyes, I don’t feel my eyes. I don’t know that I’m blinking my eyes. Someone with either thyroid eye disease or a more aggressive form of dry eye, every time they blink, they know they blink.
[06:16.9]
It’s like someone who has a headache. I don’t feel my head. But people who have chronic headaches feel their head. Exactly. Yeah. Yeah. And it becomes something that you need to deal with every day. Yeah.
[06:32.8]
And it impacts your quality of life because it’s one more thing, right? We need to eat, we need to sleep, we need to work, we need to take care of one another. You have family, responsibilities, your friend, all the things that, that you do. And then on top of that, you need to deal with that eye pain. Yeah.
[06:51.1]
And then. Yeah, I was going to say I equate it to… No apologies. I equate to sand or an eyelash in your eye. And I, when I try to emulate what it feels like, I’m like, just imagine like a sand get in your eye. And then you have that all the time.
[07:06.7]
It always feels like you have sand in your eye or you always feel like you have an eyelash in your eyes. So it is not something people commonly realize, like, I do feel my eyes. And that’s a good anecdote with your head and that chronic headache, too, because everyone can relate to that. And it’s the chronicity that’s the problem.
[07:22.9]
If I take my hand and I tap, right, I tap on my, my hand. That’s not painful. But let’s say that I do that for an hour or for a whole day, pretty soon I’m going to have raw skin.
[07:38.7]
And if I do that for a week, it’s going to bleed, right? So it’s the chronicity. People can deal with a headache once in a while or an eyelash scratching or a scratch in their eye, and then it goes away. It gets better.
[07:54.0]
The chronicity of the thyroid eye disease is what really impacts quality of life. So pain is one issue, another is vision, Right? Do you have good vision? Can you see? Can you see single? Or do you have double vision all the time?
[08:09.2]
Or do you have double vision only when you look to the side, but you need to look to the side to drive? Or somebody calls you from the side and you look at them and suddenly… …and in the gaze where you see double oftentimes will cause some pressure pain around because it’s the muscle that’s pulling.
[08:26.3]
And so suddenly you’re kind of afraid to look. So you turn your body and you turn your head, and then people who don’t know are asking, what’s wrong with your neck, what’s wrong with you? Or your eyes are crossing. And we all know that when we talk to one another, we look at each other in the face and in the eye.
[08:46.2]
And people who have strabismus, which is a condition in which the eyes don’t move together, they got a term for that centuries ago that basically is shifty eye. Now think of what the term shifty eye means in a medical term. You’re dishonest, you’re untrustworthy, because you know you’re looking in one way and you’re looking in the other way.
[09:14.8]
So the stigma of that is enormous aside from visual debilitation. The inability to have self fulfillment because you can’t do the things that you love to do. The ability to engage, whether it’s in work or in hobbies or in gatherings, family activities, et cetera, and then just having general confidence.
[09:40.5]
In addition to taking care of thyroid eye disease patients and kids and all of that, they also do cosmetic surgery. And the majority of the time, the main reason for it is the person who’s aging. We all know we age.
[09:57.0]
It’s better to age than not to age. Yeah, that’s right. You’re alive, so, yes. But when you look at yourself in the mirror, you want to see you. And when you look good, you feel good and you feel confident, and the confidence becomes something that you know, consciously or subconsciously, everybody notices.
[10:22.6]
What we consider as charisma oftentimes is a measure of confidence. If you’re confident, you’re going to be charismatic and people are going to want to be around you. And if you’re not confident, then that’s off-putting. And a condition that impacts people’s confidence is really going to impact their quality of life.
[10:44.8]
I think that it’s important for everyone to be aware, right? The first step of agency, where you can take control of what’s happening to you, is to have insight that this is going on.
[11:01.4]
I don’t just have an irritated eye. I have thyroid eye disease, which is a particular kind of irritated eye. And while there are things I can’t change, you know, your age, your gender, et cetera.
[11:19.4]
But, you know, if you live in a low sunshine condition, like here in the northern Midwest, you need to take vitamin D supplementation so that your immune system is healthy. You need to get out of the house and walk around and not just be a couch potato so that your body’s, your blood is flowing and you’re burning calories, et cetera.
[11:40.7]
So there are some things that you take your medication on time. People oftentimes don’t know how to take their thyroid medicine because the endocrinologists are oftentimes really good at prescribing it, but they…sometimes it’s not that… Something is lost in translation with regard to the thyroid hormone medicine.
[12:00.3]
So, for example, levothyroxine, you need to take it on an empty stomach 45 minutes to an hour before you put anything else in your stomach. You can’t take it with anything else because then the absorption is going to be unpredictable. If you miss it, if you miss a blood pressure medicine, you skip it.
[12:19.8]
If you miss an antibiotic, you skip it. If you miss levothyroxine, you don’t skip it. The next day, you take a double dose. Do you feel like the providers need to be understanding that they need to tell us this? Because how is someone with thyroid eye disease supposed to know when something happens?
[12:39.2]
Because just like you said, typically with other medications, you feel confident in saying like, I’ll skip it, I’ll get it. Fine, I’ll get it another time. So how do you feel like patients should be more confident in asking their doctors questions that they don’t know. So you don’t know what you don’t know.
[12:57.5]
And, and that’s the onus on that is not really on the patient. What I would say is that if a patient can bring a friend or a loved one with them to doctor’s appointments, that will help a lot because it’s very hard for a patient to remember everything that goes on.
[13:13.8]
It’s great to have another person with you. Take notes, tell the doctor. Is it okay if I’m taking notes? Get access to your portal. Most of us now have electronic health records. Our patients are able to log in.
[13:29.2]
So access to your portal so that you can review. You might call afterward and say, hey, there’s something in the my note that’s wrong. Yeah. And it can be fixed. So one time, we’re talking 30 years ago.
[13:49.0]
30. Almost 30 years ago, I got denied for life insurance because my PCP put my weight as 270 instead of 170. It was a typo. But then that put me in a completely different life insurance category. Right?
[14:06.4]
It was just a typo. So it’s. These are things that, where we as patients can have agency. There are things where we can be proactive. But explaining how a medication should be given, that’s in the doctor and in the pharmacist.
[14:25.0]
And by the way, the pharmacist is oftentimes there specifically to answer these kind of questions. If you didn’t have a chance to ask your doctor when you pick up the medicine and the pharmacy assistant asks, do you have any questions for the pharmacist, it’s absolutely fine to say, yes, I do.
[14:44.3]
Yes. But people don’t like to be a burden, and people have their own self story in their head and they just… I mean, we want guidance. So specifically speaking, it’s another topic. But do your patients typically confide in you about isolation or depression or anxiety?
[15:01.7]
Do they do that in your practice? The answer is sometimes, but they ask about it proactively. Okay. So the things that work against it is patients feel shame about their negative feelings about themselves.
[15:21.9]
And women, this is a female preponderance disease. Women beat themselves up. They don’t like to share their doubts and weaknesses, certainly not with a guy. Because it makes you vulnerable. I mean, if you’re a woman and anyone who’s on here realizes, but it’s not a weakness. So. Yeah.
[15:42.2]
And. And for men, it works the same way. It’s different, but a guy, you know, I’m, I’m not gonna ask a question. Doctor might think that I’m depressed or stupid or whatever. Men are particularly bad at connecting with their feelings and their experiences.
[16:00.5]
And so… How do you counsel them? Yeah. I ask, how are you doing? What are your hobbies? You know, here in Michigan, we talk football. We’ll talk outdoors, we’ll talk hiking, we’ll talk, you know, going up north to the lake, boating, etc.
[16:19.6]
Ask them about things that they might be engaged in. They’ll say, well, you know, ever since this started, I’m not really leaving the house. Well, that’s a warning sign. Yeah. Right? And why is that? Well, I’m in pain all the time, or I’m just… I don’t want people to see me this way.
[16:36.6]
I’m wearing dark glasses all the time because my… I’m light sensitive. I can’t go to the lake. I can’t be on the boat. It’s sunny, and I’m light sensitive. And so that’s… There is not a fix for that. Right?
[16:52.9]
The feeling. The first step is to validate it. Yeah. You have, you know, you have good reasons to be unhappy and having pain and, and feeling uncomfortable to be out and about, but there are things that we can do to help the underlying issues so that hopefully you can resume doing the things that you love to do.
[17:17.9]
And by the way, I am confident that we can make things better. I am confident that we can make things better. And if we partner, if I’m going to make recommendations, we’re going to figure out what would work for you. If your endocrinologist is not hearing what you’re telling them, I’m going to call them and we’ll figure out.
[17:39.9]
Maybe the levothyroxine is not working. Maybe we need T3, maybe we need a combination. Maybe the TSH of 3 is within normal range, but it doesn’t work for your symptoms. Right. You don’t treat a number. If a person feeling sluggish and the sleeping is sleeping too much or the sleeping is not consistent, the energy is not there, maybe a TSH of 3.5 is not right for you.
[18:10.4]
You don’t treat the number. You need to treat the person. You need to ask them about what’s going on with them. And oftentimes patients are not feeling empowered to have that conversation with their endocrinologist. But I am and I will.
[18:27.1]
And whereas 25 years ago, my endocrinology colleagues thought that I was kind of a pain. What is this eye doctor doing questioning what’s going on with this endocrine condition? They now know me for decades and they know my research, they know my work in the area.
[18:46.4]
Next week we are doing a big event for physicians targeting especially endocrinologists and eye specialists in the Detroit area. And I have an endocrinologist and an endocrine surgeon working with me. And we’re inviting everybody to dinner and we’re going to talk shop at the high level.
[19:06.3]
At the high level. And just about six weeks ago, I had a patient from another healthcare system who had had radioactive iodine. Her thyroid hormone levels were fluctuating terribly and she had pretty high antibody titers.
[19:28.2]
To me, that means that she has residual thyroid. We can test for that. So you do a thyroid uptake scan. But caveat. Normally with a thyroid uptake scan, you stop the levothyroxine because you want the thyroid gland to be needy of of all the iodine tracer that is going to show the uptake.
[19:51.7]
But if you do that, TSH will go up and the eye disease can get worse. And so you do the radioactive uptake scan of the thyroid without taking them off of the levothyroxine. And so she went to her nuclear medicine.
[20:08.0]
The endocrinologist I told her this. She went to the nuclear medicine doc and he said, no, no, no, we need to take them off the levothyroxine because that’s the textbook. So then they challenged me and I said, okay, I’m going to connect you with the nuclear medicine specialist who’s the head of the program in Cleveland with whom I did the research on this 15 years ago.
[20:28.3]
And she convinced him that yes, indeed, for thyroid eye disease patients, specifically for that subpopulation, the traditional standard protocols do not apply because you’re going to end up worsening their eye disease. And all you need to do is there thyroid, residual thyroid, and if there is, then that takes you in a different direction.
[20:47.4]
You need to treat that. So there’s a lot of things that can happen on our end as physicians and finding a specialist who spends literally most of their waking hours thinking about this disease. There are not many of us. Right. But there are some of us that do this all the time.
[21:05.7]
And we can be and are advocates for our patients. So it sounds like you as a provider are very confident in thyroid eye disease. What is something a TED patient can do in their own journey of healing that they can participate in?
[21:23.5]
Because as a provider, you’re giving us all this knowledge and not all of our providers are like you. So everyone typically on this webinar are TED patients trying to figure out how to be that confident person to either have the conversations with you, like you, like you, who you are, and will be probably told several times, that’s not the right way.
[21:46.4]
So now that we have you as a resource, I will definitely plug you in the tedcommunity.org so that we can send them over to your research. But specifically for those TED patients, what can they do to participate in that journey, whether it’s through healing and self care or being a confident patient to their providers?
[22:05.3]
Well, this kind of a community, like what you and Christine are leading, I think is step one, finding other people who have gone through the journey. And it’s amazing to me how many of my patients, once they get through, say, you know, if you have anyone who wants to, wants help, wants to run things by me, I’d love to help.
[22:29.2]
So that’s very heartwarming to see how committed people who have gone through this multi-year process of trying to regain their life, are then willing to give back to the community in terms of sharing their experience. So I think that’s step number one.
[22:45.6]
Two, the people like me who are really passionate about this disease typically make ourselves very accessible. I mean, my patients here in Michigan, they have my cell phone number. The parents of the kids who come from all over the country, they have my cell phone number.
[23:01.5]
They’ll text me from New Jersey or from Atlanta, hey, blah, blah, blah, happened, what do you think? Or whatever. It’s easy to send me an email. You go on my website, it’s info@drkahana.com. It comes to my practice manager and it gets routed to me.
[23:19.9]
My website is essentially a textbook on thyroid eye disease. There is pages and pages of information about thyroid eye disease, but there’s also videos. I even did orbital decompression surgeries on a cadaver with camera, a high definition recording with professional audio, everything.
[23:45.7]
And Christine, could you, could you mute that person, please? So there’s. Because it’s a cadaver, you think disgusting, but it means that there’s no blood so you could actually see what’s going on. I also have videos where I’m doing it in real patients where there is blood, but in a cadaver there’s no blood.
[24:04.8]
And it’s actually meant for surgeons because I have people from all over the world coming to observe how I do orbital decompression surgery so that they can learn and take it back to their home countries in Eastern Europe, in Brazil, in the Middle East, wherever it might be, in Germany.
[24:23.0]
There are not that many orbital surgeons in the world who actually know how to do this because it’s at the intersection of orbital and neurosurgical surgeries. So I made the video, but it turns out that my video is viewed not just by surgeons, but also by patients who are thinking, maybe I’ll have a decompression.
[24:42.1]
Well, what? That kind of sounds scary. And it is in those, maybe a lot scary. So it’s reassuring for them to actually. It’s empowering to know exactly what’s going on. It sounds like your website is great for both the professional aspect, but also the patient aspect.
[25:01.5]
And you focus a lot on health and wellness. Is there something specific that you could discuss about either nutrition… I’m going to take it from super science to practical about like exercise and nutrition.
[25:17.3]
And I’m talking don’t tell me to work out seven days a week. Nobody’s got time for that. That’s a perceived lack of time. However, in your professional opinion, somebody living with thyroid eye disease, what’s the minimum amount of stuff we need to be doing in order to get our disease under control?
[25:36.7]
Ah, well, diet and exercise, right. All of us, irrespective of what our health situation is, would benefit from diet and exercise. But let’s first of all look at diet. Our eating habits in general in this country are not good.
[25:57.9]
Even when we make home cooked meals, oftentimes we are using preserve this and preserve that. Realize that what you put into your body is really, really important because you, your gut, your immune, your, your intestinal system evolutionarily predates your central nervous system by hundreds of millions of years.
[26:23.3]
Your gut has its own nervous system. It has its own immune system, and it drives the rest of it. So if you put things in your body that cause the immune system to react, then the rest of your body will react.
[26:41.0]
And, and you probably know that there are some foods that you eat that, boy, you love it, but then it makes you feel not so good. It makes you feel sluggish, or… It tastes so good. It tastes so good. Realize that the people who make that food are counting on you coming back for that food.
[26:59.7]
And food science, they learn to manipulate the food, just like in Las Vegas. They learn to manipulate the lights and sounds to get you back to put another quarter in the slot machine. It’s the, that excitement that they build up in Las Vegas.
[27:16.9]
It’s the same thing with your kids and video games. The video games are designed to get your kids hooked. The food is designed to get us hooked. So the first question that I think people should ask is, would my great grandmother recognize this piece of food?
[27:35.1]
If the answer is most likely, you’re in the clear. If the answer is no, or maybe, then you need to ask yourself, do I really want to eat this?
[27:50.6]
Are you suggesting, though, that if you, you know, the whole food science, if it’s going to cause inflammation with somebody with an autoimmune disease, it will make your condition worse? Or is it again, everything in moderation?
[28:07.4]
The dentist in me is everything in moderation. You know, the oral cavity, but, you know, specifically with TED, I, you know, this already ruins a lot of social things and a lot of, you know, emotional to not enjoy ice cream because of insert whatever excuse it’s going to cause it to be worse.
[28:23.8]
Like, what’s a, what’s a reasonable thing that you can still enjoy the food that you want but be nutritious at the same time? Well, if you get one scoop and not three, if there is a dairy free option, consider getting that once in a while.
[28:40.6]
And let me explain. Cow milk has proteins that are very similar to the proteins in our body. When you eat that, usually it passes through your body just fine.
[28:55.7]
But every once in a while, your gut’s immune system will react to the Cow protein, okay, not a big deal. It’s a cow protein. But because it’s similar to our own protein, there is some cross reactivity.
[29:12.5]
And so if for whatever reason, something triggers that particular antibody producing B cell to start producing that particular antibody again, it might see a protein in your joint, in your orbit, in your gut and attack it because it thinks that it’s the cow protein.
[29:33.0]
It’s just *inaudible* to the cow protein. And so you want to minimize those situations where you’re introducing food into your system that will trigger a potential response. And it’s not food allergies.
[29:49.5]
We’re not talking about histamine release and all of that. We’re talking about true autoimmunity and cell mediated immunity. And I do think that moderation is key. So when, when you. To induce activity by the immune system.
[30:08.1]
For example, if you’re giving a vaccine, you don’t introduce a little bit. A vaccine is based on giving a lot, giving a second agent that triggers the immune system.
[30:23.8]
Usually it’s something like LPS, if you’re doing it in the lab, a phospholipid, but something that will trigger the immune system and then you repeat it again a month later or three months later or six months later, and then you repeat it again. The point of it is excess, repetitive exposure.
[30:43.0]
That’s what you want to avoid with things that are not your caveman type of situation, where we have literally a million years of evolution…more… …more to digest it, things that are more… Our body is not yet evolved to deal with it.
[31:03.3]
And so that’s an issue. Also, if you gain weight. Above us, our fat in our body is extremely endocrinologically active. And so think of it as another gland and you’re making that gland bigger and bigger and bigger and that impacts all the other glands. Yep.
[31:23.0]
So that’s about 10 minutes. Okay. Diet. We have 10 minutes left. Sleep and sleep and stress. Can we talk about sleep and stress? Please. You’re a busy career woman and the mother of three.
[31:38.9]
Mother of two. But yes, I feel like my husband is one. So you’re okay. David is also one. That’s right. And do you have a pet? I do not. Okay. If you do, that’s another child, right? Correct. So.
[31:55.7]
And I would say that in particular this is true for many women I know is that all their responsibilities come ahead of themselves. Typically. Yeah. Very service oriented in their nature and in their upbringing and the way that we socialize girls and all of that.
[32:12.7]
And so if you don’t make yourself a priority, it adds tremendous amount of stress, because then you’re trying to do all these different things. And stress drives stress hormones and adrenaline.
[32:28.6]
And we know that stress hormones drive autoimmune activities. Right. It’s a trigger. So basically, if you’re not sleeping, you get more stressed, it triggers your condition to feel worse. Correct? Correct. Okay.
[32:44.4]
And your condition actually does get worse. You can actually measure inflammatory markers. But not… …you can’t do that… I mean, you can do that, but we can’t measure inflammatory markers on a regular basis. So if you were going to talk sleep and stress on a practical level, I’m going to bring it back down one more time.
[33:05.1]
What does someone who lives with a chronic health condition, specifically, TED, in our case, what’s a reasonable amount of time? Like you would say, you would recommend X amount of sleep. And if you can feel yourself being stressed, my opinion is remove yourself from the situation, but in your professional opinion, what is a… …what, what do we need to be focusing on with sleep and exercise too. .
[33:28.4]
Well, it’s not an issue of the amount of sleep. Everybody’s a little different. Okay. If you’re exhausted all the time, you’re not getting enough sleep. If you need to drink 3, 4 cups of coffee just to get through the day, you’re not getting enough sleep. If you find yourself quick to anger, you’re probably not getting enough sleep. True.
[33:46.6]
So self-care. Realize that if you don’t take care of yourself, you can’t really take care of anybody else. The truism is that your health is more important than anything else. And you might say, no, no, my children are more important. Well, no, because if you don’t have your health, then your children won’t have a mom. Yeah.
[34:04.5]
You can’t take care of them. I get it. Right. And so you need to actually tell that to yourself. There was a…many years ago, Saturday Night Live had Stuart Smalley skits where this guy looked himself in the mirror and said, I’m good enough, I’m smart enough, and gosh darn it, people like me. Self-help.
[34:24.5]
And he was making fun of that whole thing, but actually, gosh darn it, that’s true. You tell yourself, you know, I am good, I am successful, I am doing well, I am liked, I have friends, I have a career… I am enjoying a novel, I am enjoying talking with.
[34:43.1]
I know I call my mom every Sunday or whatever it might be. Give yourself credit. Yeah. And that positive feeling releases endorphins that generate more positive feeling.
[34:58.8]
Whereas if you have negative feelings that generates more negative feelings. Now here’s a truism. A negative feeling is five times more powerful in your brain than a positive feeling. That is the consequence of evolution in our fight or flight response.
[35:16.6]
And so whenever you have a negative feeling, you need to realize that you need to think of five positive things just to balance it. Not to exceed it, just to balance it. And if you’re someone who wallows, you know, just goes in your mind… It’s self-limiting.
[35:36.6]
Your self-limiting talks outweigh your empowerment. So you have to do five times as much positivity to reach that success. So basically I have a few minutes left. I just have one more question, but you’re basically saying our mind does have to take it. I think one of the issues with someone who deals with thyroid eye disease and I’ve spoken to many of my colleagues in the thyroid space is we have so much destructive like our pain, our head.
[36:04.0]
You know, I don’t like going outside. And so in your opinion, do you recommend… …in my opinion I recommend the art therapy, but just kind of going to talk about your feelings so that you can get it out of your body instead of in your brain. Is that something you tend to recommend? Absolutely.
[36:20.0]
I mean we have sometimes these kind of sessions in my own practice with my patients. But therapy is amazing, but it’s expensive and it’s hard to get a therapist who can deal with somatic conditions. I actually, when I, I have sessions for education, I’ve been, for years I struggled to find a, a psychologist or a psychiatrist who has any interest in thyroid eye disease patients.
[36:45.3]
They don’t. Because you can’t prescribe a pill. Yeah, that’s right. And so this is again bringing, coming back to this kind of an organization. You need to have your people. You need to have your friends and family and be careful of relying on your spouse. Yep.
[37:04.5]
The spouse typically can be there to say, you know, there’s nothing wrong with you, honey, you look great. I don’t know what you’re talking about. And that’s not at all what you need or yeah, we’re going to solve this problem. We’re going to do this, we’re going to do that, we’re going to do this. No, that’s not again, not what you need.
[37:22.5]
The empowerment comes from sharing, understanding, connecting with your feelings and then moving forward. Not rejecting them, but building on them and moving in a positive direction. And that’s something that you do with yourself. And I would say that while it impacts women more than men, women are particularly better at doing that.
[37:48.0]
Whereas as men will really close up, but men have a wife who is much better at connecting with them and supporting them. Typically. Typically. I have five minutes left. I have one question on there from somebody on the webinar, but I also have one more for you.
[38:05.2]
When looking toward the future for thyroid eye disease in terms of solutions, and there’s very innovative research out there, what are some things that you are excited about specifically for thyroid eye disease in the innovation space? Great question.
[38:21.6]
So there’s a lot of attention now to the Anti-IGF1 Receptor inhibitors. I use them. I’m very optimistic that they can help people deal with the disease better. We now know a lot more about side effects.
[38:37.0]
We know more about flare ups and recidivism from them, even if you have a good response. But that’s not the solution. We need to block the trigger. Treating symptoms after they’ve already occurred. After your eyes are bulging, you have the double vision, your eyelids are retracted, you’re in pain, et cetera.
[38:54.4]
Yes, it reduces it, but it doesn’t get you back to how it was before the disease. The way to deal with it is to block the trigger that started the disease in the first place. And because this is an autoimmune condition, the solution is going to be some kind of an immune modulator, something that will block the disease process at the very, very beginning.
[39:16.9]
And there’s actually tremendous investment now because Tepezza proved that even though this is an orphan disease, money can be made. Companies love making money, right? Everybody likes making money.
[39:32.4]
Everybody likes making money. So if you show companies, biotech companies that they can make money in cancer, they’ll invest in cancer. If they think that they can make money in dementia care, they’ll invest in dementia care. If you show them that you can make money treating thyroid eye disease, they’ll invest in that.
[39:50.7]
And they are now investing in that. And there’s venture capital money and there’s biotech money and some of the smartest people in biology and computational sciences, et cetera, are going into our field. And so I believe that in the next 20 to 30 years you’ll see a revolution.
[40:07.4]
Now you might hear 20 to 30 years, that’s a very, very long time. Well, the research on IGF1 receptor inhibition for thyroid eye disease started about 30 years ago, right? Only four years ago was it brought to market. That’s just how long it takes.
[40:26.6]
But I am very optimistic that we’ll figure ways to either block or reduce the trigger so that you’ll never get to the severity of the disease that many of us need to deal with. No, I completely understand. Been living with it for 27 years, so I’m excited about all things coming up.
[40:44.9]
But I want to thank you for your time spending with us, Dr. Kahana, and for all the great work that you’ve done on behalf of everyone living with thyroid eye disease. I look forward to researching your website, but for anybody who is Interested, please visit TEDcommunity.org and learn more about the TED Community Organization and participate in our robust list of services that are all free. And if Dr. Kahana has about five, 10 minutes, we’re going to stop the webinar reporting and we will go do a little bit of Q and A.
