My Personal Concerns with the Recurrence of TED

I am in the inactive phase of thyroid eye disease (TED), also called the "quiescent stage." This word alone gives me a feeling of repose and tranquility. I think many of us would agree, we seldom had that feeling during the active phase. Now there are days I don't even think about my eyes anymore.

After 6 years of my eyes dictating my days, I am happy and relieved and thankful. But I admit; I do worry about the recurrence of thyroid eye disease. The positive side of me shakes her head and instructs me to stop worrying and just enjoy the "tranquility." Yet the "what ifs" keep sneaking into my thoughts.

What if thyroid eye disease attacks again?

What if it distorts my eyes again after all of this time and all of the surgeries? Could I really manage this again? In an effort to put these intrusive thoughts at rest, I started researching the odds of TED going active again and how to avoid it. I found that researching is a strong word for a topic that has not been widely studied. (Are we really the pioneers of this disease?!)

Doing research on the research

An older study provides some comfort

I did find one study called "Recurrent Thyroid Eye Disease" that helped lessen my anxiety. This study was published by the National Institute of Health and was done in the years 2006 through 2012. Rather old, but I will take what I can get.¹

The purpose of the study was to define the incidence of recurrence of inflammatory signs (active phase) after a stable inactive phase of at least 6 months and up to more than 10 years. Orbital imaging was done on 415 patients, which determined that 65 patients were active again. These 65 patients had symptoms of active thyroid eye disease, along with changes to the eyes seen in past photos and current photos.¹

I found it reassuring that the percentage of recurrence in this study is only 15.7 percent, but then I wondered why some would have a recurrence and not others. I wanted to know how to stay in the "not others" category.¹

My interpretation of the findings

Further into the study, I read that the recurrence rate was higher in patients who had been smokers during their first episode of thyroid eye disease compared with nonsmokers. Also interesting is that 18 patients had identifiable events that may have triggered disease recurrence.¹

My conclusion of this study is simply that, although uncommon, recurrence of thyroid eye disease does not appear to be as rare as previously believed.¹

Overall, I have found some relief after reading this study. I feel, statistically speaking, the chance of recurrence is slim, and this helps to alleviate my anxious "what if" thoughts.

What stands out to me is that the recurrence rate was higher among patients who had been smokers during their first episode as opposed to nonsmokers. Being a nonsmoker, my chance of recurrence is less.

Eighteen patients had identifiable events that may have triggered disease recurrence. How do you interpret that? My interpretation is that extremely stressful life events, such as death, sudden loss of large sums of money, vehicle accidents, and other health problems, such as heart attacks, could be what trigger symptoms.

We all encounter unforeseen life events and handle them differently. I personally know that I need to brush up on self-care to better handle stressful events. I tend to be an over-thinker, which prompted this research...and I still wasn't satisfied, which led me to a more recent study.

A more encouraging and more modern study

The next study I looked into was from 2022, and I found it in Endocrine Today by Michael Monostra. I think you will all agree with me that the outcome of this study was far more encouraging.²

It was a study of over 5,000 adults with TED who have been treated with Tepezza and need a second treatment of the infusions because of recurrence. Remember, when the first study was done, Tepezza treatment was not even on the horizon.²

Although this second study will be ongoing, it shows that since the treatment of Tepezza, the percentage of recurrence has gone from 15.7 percent as in the first study, to only 4.9 percent.²

Being an overthinker has served me well in this instance. I see my risk now at a mere 4.9 percent. I also find it encouraging that there are ongoing studies and hope for other treatments in the future. I feel like thyroid eye disease is becoming more understood.

Have you experienced recurrence of thyroid eye disease?

I would value some input from community members who have actually been in that small percentage of recurrence. It must feel so defeating. Can you share your experience, and have you been able to put your finger on the cause, such as a triggering life event?

Those of you who have had the Tepezza infusions, does the information from the second study give you any reassurance?

My last question is, have any of your TED Specialists given you more insight on this subject?

There is always so much we can learn from each other.