My name is Randi, and I'm here to talk about my journey with Thyroid Eye Disease. It started in March of 2020. I was sitting in the living room with my mother and all of a sudden there was two of her. When I saw that it wasn't getting better, I called my ophthalmologist right away, and my ophthalmologist knew the minute he saw me that it was something serious.
He picked up a hand mirror and he handed it to me, and I held the mirror up to my face and went, “Oh, my God, when did this happen?” Like, I looked like a monster. He said, I think I suspect that your thyroid is involved in this and that you may have Thyroid Eye Disease, but I need to run some tests.
I was actually diagnosed with Thyroid Eye Disease first, and then I was diagnosed with Graves’ disease. Three weeks later, it was explained to me pretty quickly that it's two separate diseases and that although there is some connection between the two, that they had to be treated separately. I didn't allow myself to be photographed or be in a Zoom meeting for over a year.
I couldn't read contracts. When that double vision came on, I couldn't look at my computer screen, doing anything that I would do during a typical real estate day, including driving. Those things were no longer things that I could do. So, my son offered to get his license and come work with me and help me out through that. If it hadn't been for that, I would have had to close my practice down for sure.
My endocrinologist started. They started treating me to try to get my thyroid under control. And my eye doctor told me about TEPEZZA. He had just heard about a new medication that had just been FDA approved. He had his office coordinate with the insurance company. He was the one that had told me about TEPEZZA and said “I think this is something that could really help you.”
And it took some time, but he handled everything. I was approved maybe four months later, and they assigned me a Patient Access Liaison who was able to walk me through the process and also tell me some of what to expect if I was going to go down this path with TEPEZZA, because, you know, it's a huge unknown and you're making medical decisions for yourself and trying to have all the information you can. So she was really helpful in that process. I felt like she was there with me, just kind of holding my hand a little bit.
After the second infusion, like the very next day, the double vision was gone. It was worth everything just for that. It's never it has never come back, ever. The process of your eyes going back into place and all of that simmering down doesn't just happen overnight. I'd say that was closer to my seventh infusion and I'd gone back to my eye doctor again. He was checking me regularly around that point and we looked in that mirror again and I just remember just kind of thinking, “Oh, there you are. I know that girl.” And I knew then, I have one more infusion to go and I will be back to who I was. My symptoms have never come back after the last infusion. Everything just gradually improved over time. I completed all eight infusions and the symptoms have never returned. I know that I will have Thyroid Eye Disease forever, but it's not something that I have to think about and carry around with me every day.
So many things were taken away from me when I first was diagnosed with Thyroid Eye, I just lost so many things and it just feels so good to have those things back. I probably appreciate them now more than I ever did.
Now I'm part of the TED Team, which is a peer-to-peer network of Thyroid Eye Disease patients. The reason that I do tell my story and the reason I do go there is because I know that that story helps other people. And I know when I talk to them and listen to them on the phone, I hear the relief in their voices from being able to just communicate with another person that has the same disease. And I see what that does for them, and that's why I do talk about it.
INDICATION AND IMPORTANT SAFETY INFORMATION
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.
What is the most important information I should know about TEPEZZA?
Infusion reactions can happen during or within 24 hours after your infusion of TEPEZZA. If you have a reaction while receiving TEPEZZA, your doctor or nurse will slow or stop your infusion and treat your reaction. If you have a severe infusion reaction, your doctor may stop your treatment completely.
Tell your doctor or nurse right away if you have any of these symptoms during or after your treatment with TEPEZZA:
- High blood pressure
- Fast heartbeat
- Redness of the face/Feeling hot
- Difficulty breathing
- Muscle pain
If you have inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, TEPEZZA may make your IBD symptoms worse. Symptoms of worsening IBD may include: an increased number of loose stools with stomach pain or cramps, and blood in your stools. After each TEPEZZA infusion, tell your doctor right away if you have worsening IBD symptoms.
TEPEZZA may cause an increase in your blood sugar. Before starting treatment with TEPEZZA, tell your doctor if you are currently being treated for diabetes, know your blood sugar is high, or have been diagnosed with diabetes. It is important for you to take your treatments and follow an appropriate diet for glucose control as prescribed by your doctor.
TEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.
Before receiving TEPEZZA, tell your doctor if you:
- Have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
- Are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.
- Are pregnant or plan to become pregnant. TEPEZZA may harm your unborn baby. Tell your doctor if you become pregnant or suspect you are pregnant during treatment with TEPEZZA.
- Women who are able to become pregnant should use an effective form of birth control (contraception) prior to starting treatment, during treatment and for at least 6 months after the final dose of TEPEZZA.
- Are breastfeeding or plan to breastfeed. It is not known if TEPEZZA passes into your breast milk. Talk to your doctor about the best ways to feed your baby during treatment with TEPEZZA.
- Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.
What are the possible side effects of TEPEZZA?
The most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, dry skin, weight loss, nail problems, and changes in menstruation.
This is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
Please visit TEPEZZA.com for more information.