A Paradigm Shift in the Clinical Course of TED

So based on your findings then and your conclusions, I guess we can say that it's misleading to call it an inactive, inactive stage, but more so maybe like an acute and a chronic stage when we're talking about thyroid eye disease? Or is it just one large continuum of, like, relapsing, remitting?

So I think the understanding is still evolving, Amanda, in so many ways, and we are just starting to scratch the surface of this thyroid eye disease pathogenesis.

In fact, I think if you ask me, if, and you could have asked me, "Well, how do you define reactivation and flare-up and regression and some of these other terms that are thrown?" We don't have a lexicon.

We don't have a, a proper way, a formal way of defining any of these things.

But what I can say to you, that I think that Rundell's curve is no longer true.

If you told someone that back in the day, and Rundell was great at what he did, and he observed, and there were only really two patients that he based his entire curve on.

The reality is that we have vastly underestimated the burden of thyroid eye disease, and I, I see this every day in my clinic.

I, I care for patients with very complex disease, and I have cared for them for decades.

But I think that this new information is valuable from the standpoint of helping us inform not just our patients, but ourselves that, you know, you see a patient in front of you with mild thyroid eye disease, and you might say, "Oh, that's just mild.

Use artificial tears and go home." I think that it's important to realize that one in three of those patients may actually have progression over their lifetime.

The study only could go up to eight years, but so that's important to keep in mind.

I think it's important to educate our patients about the importance of what this disease can do and how disfiguring this can be, and that it can completely disrupt both functionally and aesthetically the appearance and the visual function and the quality of life.

But that it really, really, there is a huge clinical burden, and some of these patients, as they are followed over years and they have progressions, end up seeing the doctor over four times a year.

And so I think that this information would be helpful to understand the disease, its progression, to help advance our understanding.

And finally, hopefully, we will at some point have better therapies that can address the pathology at every stage of their disease course.

So a couple follow-up questions.

Let me actually start with this one.

From a surgical standpoint, does that change the way you, especially you doing strabismus surgery, like, when you might time surgery? Because, uh, I guess if we normally waited until we thought they were in an inactive stage, but as it turns out, they could kind of reactivate even years down the line, does that change how we think about doing the traditional, you know, orbital decompression if they need it, then strabismus surgery, then lid surgery? Like, does anything about those decision-making points change?

So again, we have traditionally been taught that you do orbital decompression in the inactive stages of the disease, and same goes for double vision and eyelid procedures.

And one should still make those decisions, except, you know, when someone has compressive optic neuropathy, and then you might do orbital decompression sooner.

But the reality is, you know, now when I, I do these surgeries or the oculoplastics folks do their orbital decompression and eyelids, we always c- inform our patients that despite the surgery, five years down the line, if they have a flare-up or a reactivation, the double vision could come back.

And that has been true in my practice.

You know, the patients go through these flare-ups.

Patients are living longer, but some of these patients with moderate to severe disease can have disease flare-ups, and I think that's where the role of therapeutic intervention in terms of better medical therapies might actually be more useful.

And what we are looking for are therapies that will last longer, will have fewer side effects, and be more effective.