1. Hi Stephanie, thank you for graciously agreeing to do this interview. I know it can be nerve wracking to relive your history of thyroid eye disease.
o Hi, Dr. Jain. It’s no problem; I hope that detailing my experience with thyroid eye disease can be of help to someone.
2. What were your initial symptoms when you were first diagnosed?
o I noticed something odd with my vision as early as a few months before any actual symptoms began to surface. Whenever I tried to look down, it felt difficult to do so, as if there was some tension in my eyes; I assumed I was just straining my eyes and that I needed to take it easy with my contacts, so I brushed it off. A few months after that, I began waking up with swollen eyelids and I experienced red, dry, and irritated eyes throughout the day. I also noticed that my eyes were bulging and I had this wide-eyed, staring appearance. While trying to combat those symptoms with heated eye masks and eye drops, my symptoms began to worsen in the following weeks until I experienced a plethora of other symptoms: excessive tearing, a gritty feeling in my eyes, a burning sensation and pain, headaches, light sensitivity, and blurry and double vision.
3. Living with chronic illness can be difficult. What are some of the difficulties you faced with the disease?
o Having to get up numerous times a night to reapply the gel ointment that I use to help my dry eyes when sleeping was horrible; on particularly bad nights while my TED was still in its active phase, I would have to get up as many as 6 or 7 times. The burning pain that I would wake up with and that was present for most of the day also took a toll on me. It seemed like no matter what I did, my eyes hurt and I couldn’t do anything to actually stop the pain, just pause it for a small time with the help of either eye drops or cold compresses. The swollen eyelids that I woke up with also made my eyes more sensitive throughout the day, and the blurry vision that the heated eye mask I would use to alleviate said swelling with would remain for hours at a time, which made my days difficult.
4. What toll has this disease taken on your day to day life?
o I experience quite a bit of insecurity due to this disease, to the point where I turn down invitations from friends to hang out or attend special occasions like birthday parties. I just don’t feel that comfortable being out in public often since I feel that the bulging I still experience in one eye and the strabismus I have in my other eye are both prominent enough to be easily noticed. The strabismus I experience, which I developed specifically because of my thyroid eye disease, has incapacitated much of my life. It’s a struggle to do much of anything since I have to constantly tilt my head at a specific angle in order to see a clear, singular image so I don’t have to experience double vision. Overall, my work, school, and personal life have all been negatively impacted because of the limitations that TED have forced on me.
5. Are there things you used to love doing prior to the disease that you can no longer do or no longer enjoy doing?
o I used to love going out to lunch and the movies with my friend, and that’s now something I no longer do both because I still feel insecure and also because I have a hard time driving due to blurry or double vision. I also used to read nearly every day, either for school or just for fun, but that’s become too troublesome to do because of the blurry vision that I still experience and the strabismus that makes it hard to look down. While I never excelled at other hobbies, like baking or crocheting, they were still things I enjoyed doing, but it’s just become too difficult to even attempt.
6. Who/what has been your support network during this journey?
o My family has been really helpful throughout my entire journey with TED. My mom, especially, really understands how negatively this disease impacts my life, so her emotional support has been amazing.
7. I want to shift gears and talk a little bit about the healthcare system and managing thyroid eye disease. A lot of my patients describe how they felt very unheard by healthcare professionals when they first presented with symptoms. Has this been your experience? If so, can you elaborate?
o Yes, I definitely experienced this. When I first started waking up with swollen eyelids and experiencing red, dry, and irritated eyes, I visited my optometrist. While he definitely helped by recommending certain eye drops or ointment that I still use to this day, he ignored other symptoms as they began occurring. I felt like he continually tried diminishing what I was experiencing by saying things like my double vision wasn’t true double vision, so it wasn’t actually happening, and then taking no other steps to find out why I was experiencing such weird vision problems. He said he was aware of how Graves’ disease impacts eyes, but he didn’t seem to know about thyroid eye disease specifically as he never once mentioned it. He commiserated with me over what I was experiencing, but he would just repeatedly say that I would simply have to learn to live with my increasingly worsening symptoms, which felt very disheartening at the time as I was in such constant pain.
8. Is there a specific way you were able to find a specialist that manages thyroid eye disease?
o My optometrist never mentioned referring me to a specialist, so I mentioned my eye problems to my endocrinologist at one appointment just to see how common these problems were in her Graves’ patients. She told me I likely had thyroid eye disease, but maintained that she couldn’t diagnose me or help with my symptoms as she only dealt with thyroid issues, so she told me I would have to see an ophthalmologist and referred me to Dr. Jain. I’m incredibly glad that I asked my endocrinologist about the eye problems I was having as her referral was tremendously helpful; if I wouldn’t have brought it up, I believe that I would still be suffering from pretty severe symptoms.
9. Aside from staying compliant with your medications, what else would you encourage other thyroid eye disease patients to do?
o I’d encourage others to be thorough when looking up or meeting with doctors, such as by researching specialties, finding the correct specialists to visit, and getting second opinions if necessary. I would also say that there are many tips that people share online to help alleviate pain and swelling. Sleeping with your head elevated and fans off help alleviate swelling, and heated eye masks were personally very helpful to me when trying to reduce my swelling. Cold compresses also help with the burning sensation and discomfort I experience, especially when my eye drops don’t help as much. I’d also recommend investing in good sunglasses, especially if they’re prescription, because they can help significantly with light sensitivity.
10. What lifestyle changes, if any, have you made to incorporate taking care of your physical and mental health more since your diagnosis?
o My sleeping habits were never the best, as I used to stay awake late into the night doing schoolwork or reading, but I’ve had to do my best to ensure I actually get enough sleep since being diagnosed with TED. Not enough sleep always seems to leave my eyes more sensitive and prone to discomfort or pain throughout the day. It’s easy to enter a melancholic mindset when first being diagnosed or even just living with this disease because it’s easy to feel abnormal and like you may never go back to how you were prior to TED. I’ve found that it helps to surround myself in a positive environment or going online to see how others with this disease are continuing to live their lives. It makes me feel more optimistic and like I shouldn’t hide myself away in frustration or embarrassment.
11. I know you received 8 infusions of Tepezza for thyroid eye disease. How did you make the decision to receive Tepezza treatment?
o For me, making the decision to try Tepezza was a rather easy one. I didn’t want to go down any surgical routes, so I made sure to look up any literature on Tepezza that I could find, like research articles, as well as anecdotal stories people shared online about their own experiences with Tepezza. A lot of people seemed to have major improvements with their bulging, double vision, and other symptoms, like redness or irritation; since I was experiencing quite a few TED symptoms and I was eager to improve anything I possible could, I really wanted to try Tepezza. I was hoping that I wouldn’t experience too many negative side effects, but I personally was fine with any potential side effect as long as there was even a possibility that my eyes would improve at all.
12. What was your experience like receiving the treatment? Any side affects? Anything you wish you would have known before you started or want to share with future patients who may also opt for the same treatment?
o Overall, my experience with Tepezza was great and the infusion process itself consistently went very smoothly. However, I definitely did experience side effects, ranging from minor ones like headaches and a mild allergic reaction, which went away with Tylenol and Benadryl, respectively, to other stronger ones, such as fatigue and muscle cramps/spasms. It’s easy to find a lot of stories online in which people share their negative experiences with Tepezza, and I completely understand why they would want to air out their grievances and warn others about their experience. But I really want to urge anyone considering Tepezza to just keep an open mind when reading such stories. For every negative experience, there’s a positive one. For me, Tepezza was amazing, and it really helped me with many, if not all, of my symptoms. I also understand that since it’s a relatively recent medicine, some might be hesitant to try it, but it wouldn’t be available for people to receive if it wasn’t safe or beneficial.
13. Is there any wisdom or words of encouragement you would want to pass along to a fellow patient who has thyroid eye disease?
o It’s understandable how upsetting receiving a diagnosis of thyroid eye disease is, and how helpless people can feel when learning how to live with this new sense of normal, but I think it’s important for one’s mental health to remember that there’s still hope to be held. There’s more measures to combat TED now than there were decades ago, and hopefully in the future there’ll be even more strategies. Also, feeling insecure about how thyroid eye disease alters your physical appearance is to be expected, and I definitely still feel that way, but realistically, some people may not even notice, or if they do, they typically won’t stare or ask insensitive questions.
14. Thank you so much for sharing this with me and so many others who will benefit from your knowledge and experience. Is there anything else you would like to add?
o Of course, it was my pleasure. I hope that something I said or shared is able to help someone in some way. I’d like to just mention once more that I think it’s really important for patients to do the proper research and find a doctor that attentively listens to their problems and helps to find and offer proper solutions. People with TED don’t have to just sit and silently suffer with this disease, unlike what some may say or think; it’s important to feel comfortable enough to ask questions or seek second opinions.