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Thyroid Eye Disease (TED) is a progressive autoimmune condition, frequently associated with thyroid disorders. It can cause tissue expansion behind the eyes, leading to proptosis as well as inflammation. It can affect how patients feel, see themselves, and navigate daily life.1,2
Even patients who have had their thyroid gland completely removed can suffer from TED6-8
TED requires its own treatment plan9-11
In one retrospective, observational study12,*
*The medical records of 46 patients (92 eyes) treated for TED at the Institute of Eye Diseases of Russian Academy of Medical Sciences were reviewed.
Proptosis4,17
Eyelid retraction4,17
Redness, swelling, and excessive tearing4,17
Soft tissue changes around eyes4,17
Diplopia4,17
Blurry vision4,17
Itchy eyes16
Dryness and grittiness4,17
Pressure/Pain behind the eye4,17
Photophobia4
Color vision loss18
TED is a progressive autoimmune disease, often associated with proptosis, bulging of the eyes. However, TED patients experience a wide range of signs and symptoms that can all have a significant impact. But it’s not just about the clinical effect on the eyes. So as clinicians, we often focus on aspects of TED we can see. However, it’s crucial that we also ask our patients how TED is impacting their emotional well-being.
—Michael Valitutto, Endocrinologist
(compensated for his time)
TSH, thyroid-stimulating hormone.
Patients with TED often show symptoms of dry eye disease19
DRY EYE DISEASE (DED): Affects lacrimal glands and ocular surface causing insufficient lubrication to aqueous tear-film layer20
Helpful for establishing a baseline and monitoring change
See what is happening behind the eye to help confirm a TED diagnosis
Healthy Eye and Orbital Tissue
All images used with permission.
Increased Tissue Volume in TED
All images used with permission.
Green arrows point to a coronal view of the extraocular muscles (white areas). Extraocular muscle volume increase in patients with TED.
CT, computed tomography; IR, inferior rectus; LR, lateral rectus; MR, medial rectus; MRI, magnetic resonance imaging; SO, superior oblique; SR, superior rectus.
Impact from TED can start before observable symptoms appear
In a Japanese study* and within a subgroup of 17 patients diagnosed with Graves’ disease, 71% of patients showed extraocular muscle enlargement on MRI before visible signs of TED appeared.21
*The study included 44 patients of whom 17 had untreated Graves’ disease with no clinical signs or symptoms of TED; 11 had TED; and 16 had no Graves' disease or current ophthalmopathies.
You can see a patient who’s flaring up currently, or you could see somebody who’s had that appearance for many, many years with no acute change in their symptoms or signs. Intervention makes a difference in both groups of patients
— Dr Barry Schecter, Cornea and Cataract Surgeon
(compensated for his time)
Because of my double vision, I would make a conscious decision to not drive. I had to depend on friends to take me to the grocery store, the dentist, even the doctors
—Janet, real patient with TED
(compensated for her time)
In one survey of patients with low disease activity, long-duration TED (N=100)22,*:
(n=70/100)
(n=85/100)
(n=71/100)
(n=77/100)
*100 patients identified as currently experiencing low disease activity/inactive TED by a healthcare professional completed an online survey in January 2020.
Kim, a patient suffering from Thyroid Eye Disease, describes her initial symptoms and her journey to ultimately getting diagnosed with the disease.
Kim was compensated for her time. The opinions expressed are her own.
I’m Kim, and this is my journey with Thyroid Eye Disease. When I was 17, I started to get really tired, and my mom was worried about me, so she took me to the doctor to have me checked for Mono. And the doctor did the blood work and said, you do not have Mono. I think it’s just growing pains and kind of just sent me on my way.
And then I went to college where I was recruited to play volleyball and run track. When I went to the volleyball camp before the season, the coach called me into the office and she looked at me and she said, “You play like you’re sick, I’m cutting you.” And I was devastated. So, I went to a doctor on campus and he basically told me I was a hypochondriac.
My uncle is an ophthalmologist and he looked at me and said, ” Oh my gosh, you are so sick.” My uncle got me into an endocrinologist, and he said, “You have Graves’ disease, and you need treatments immediately.”
So, I started radiation treatments. Once that was stabilized, my eye symptoms started to get worse. And my uncle at that time said, “You have Thyroid Eye Disease and it is independent from your Grave’s disease.” I had the tightness in my eyes. The bulging. And they kept getting worse and worse as time was going on. My eyelids wouldn’t close. So, they got me into an ocular plastic surgeon and I had my first Levator surgery. That took care of the major symptoms.
I could drive during the day, but nighttime no, everything, all the lights were double. You just kind of learn to live with those symptoms and move on because you think there’s nothing you can do anymore. So, I thought this is just how it was going to be. You just aren’t comfortable anymore with yourself in your own skin and everything bothers you.
It got to a point where I didn’t want to be out in public because people would look at me and I knew they were looking at my eyes.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease, or TED, no matter if you've had TED for months or years. TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain. Please see additional Important Safety Information included in this video and the Full Prescribing Information provided on TEPEZZA.com.
After 25 years and four surgeries, my optometrist recommended that I see an oculoplastic surgeon, and the new oculoplastic surgeon said, “Hey, there’s this new medicine out called TEPEZZA. I think before we do any more surgeries on you, you should try it.” I had told her I saw the commercials, and I said I didn’t think it was an option for me because I thought I had to be in that bad phase with all those bad symptoms I had before. And she said, “No, I’m pretty sure this is going to be it.”
When I went for my first infusion, I was very anxious. Then after the second treatment, I got used to everything. And then after the fourth treatment, I noticed the bulging had decreased. It was exciting to, to see that. The most significant difference was infusions five through eight. The tightness was gone. When I was done, my eye bulging, decreased three millimeters in each eye, which is a significant difference.
To see myself now, after this treatment, it’s been uplifting because I don’t think about my eyes every day anymore. I can go about my day being confident and people aren’t asking me about my eyes. When my son got married, I actually couldn’t wait to see the pictures. And you see a picture. You don’t see eyes. It’s been an amazing experience. If I can help somebody who was in the same stage as I was and thinks they can’t do this, they should make sure they ask their doctor, “is this an option for me?” Because I didn’t think it was and it’s been incredible.
Talk to your doctor to see if TEPEZZA might be right for you.
Thyroid Eye Disease kind of put me into a shell. I didn’t want to do things with people and I didn’t want my picture taken.
– Kim E., real patient with TED
(compensated for her time)
WARNINGS AND PRECAUTIONS
Infusion Reactions: TEPEZZA may cause infusion reactions. Infusion reactions have been reported in approximately 4% of patients treated with TEPEZZA. Reported infusion reactions have usually been mild or moderate in severity. Signs and symptoms may include transient increases in blood pressure, feeling hot, tachycardia, dyspnea, headache, and muscular pain. Infusion reactions may occur during an infusion or within 1.5 hours after an infusion. In patients who experience an infusion reaction, consideration should be given to premedicating with an antihistamine, antipyretic, or corticosteroid and/or administering all subsequent infusions at a slower infusion rate.
Inflammatory Bowel Disease: TEPEZZA may cause an exacerbation of inflammatory bowel disease (IBD). IBD has been reported in some patients without a prior diagnosis of IBD. Monitor patients for signs and symptoms of IBD. If IBD exacerbation is suspected, discontinue use of TEPEZZA.
Hyperglycemia: Increased blood glucose or hyperglycemia may occur in patients treated with TEPEZZA. In clinical trials, 10% of patients (two-thirds of whom had preexisting diabetes or impaired glucose tolerance) experienced hyperglycemia. Hyperglycemic events should be controlled with medications for glycemic control, if necessary. Assess patients for elevated blood glucose and symptoms of hyperglycemia prior to infusion and continue to monitor while on treatment with TEPEZZA. Ensure patients with hyperglycemia or preexisting diabetes are under appropriate glycemic control before and while receiving TEPEZZA.
Hearing Impairment Including Hearing Loss: TEPEZZA may cause severe hearing impairment including hearing loss, which in some cases may be permanent. Assess patients’ hearing before, during, and after treatment with TEPEZZA and consider the benefit-risk of treatment with patients.
ADVERSE REACTIONS
The most common adverse reactions (incidence ≥5% and greater than placebo) are muscle spasm, nausea, alopecia, diarrhea, fatigue, hyperglycemia, hearing impairment, dysgeusia, headache, dry skin, ear discomfort, weight decreased, nail disorders, and menstrual disorders.
INDICATION
TEPEZZA is indicated for the treatment of Thyroid Eye Disease regardless of Thyroid Eye Disease activity or duration.
Please see Full Prescribing Information for more information.
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