Hello all,
I’m hoping to hear from others dealing with Graves’ who underwent a total thyroidectomy (TT) while also managing thyroid eye disease (TED).
My surgery is coming up, and I’m already dealing with eye issues, specifically enlarged muscles. I’d love to know from those who have been through this:
* Did your eyes get better, worse, or stay about the same after the procedure?
* If things got worse, was it a short-term flare or permanent?
* When did you first notice a change?
* Did anyone see improvements much later down the road?
I understand everyone’s journey varies, but your stories would be very helpful. Thanks a lot! 
I was diagnosed with Graves’ in 2021, and TED symptoms hit in July 2025 (gritty feeling, eye pressure, and intense migraines that reached my jaw and cheeks; I needed gel for dry eyes at night). Even though it was labeled “mild” proptosis, the pain was unbearable. I was on a constant cycle of Advil, Tylenol, and ice packs for months.
Having just finished nursing school, I was terrified I wouldn’t be able to work. My doctors suggested a TT as a final option to avoid long-term steroids, hoping the inflammation might drop once the thyroid was gone, though there were no promises. Otherwise, I’d have to wait for decompression surgery.
Had the TT in October. Within two days, the migraines were totally gone. I haven’t had that pressure or a headache since. It feels like a miracle; I wish I’d done it sooner. My energy is back, and I don’t feel like I’m struggling through sludge anymore. I started my full-time job in November, just a month later. I feel like myself again. Highly recommended.
My eye issues started getting better right after the operation. Actually, they began to calm down once methimazole got my levels stable about a month before the surgery. A week after the TT, I noticed they looked and felt better, even though I was sick with a cold. Now, five weeks later, I’d say I’m 50% improved. My optometrist, who saw me in September and then again in December, was shocked by the progress. She was going to prescribe tear inserts but decided I didn’t need them anymore. She mentioned I might still get minor flares when I’m sick, but they should be shorter and easier to handle without the thyroid driving the inflammation.
Be cautious about assuming your eyes will definitely improve, as that isn’t always the case. After my 2019 TT, my eyes seemed okay for a bit, but eventually, I developed double vision even though the bulging didn’t look worse. I ended up getting orbital decompression last January, and it was a game-changer. My vision returned to normal instantly, and my eyes look almost like they did before Graves’ (just waiting on a minor lid procedure). The reality is that TED can follow its own path regardless of whether your thyroid is still there.
I’ll share a different perspective: my TED actually progressed from very mild to quite severe about two months after my thyroidectomy.
I had RAI back in 2018 for Graves’. In September 2025, I was diagnosed with mild TED and double vision. Prednisone helped for three weeks, but the inflammation returned once I stopped. I don’t have pain or bulging, just eye pressure and terrible double vision. Prisms didn’t help even after several adjustments, so I use frosted tape on my glasses to block the double image. My doctor at UCLA mentioned a special contact lens for single vision. I’m wondering if these symptoms might progress further later on?
I actually posted a detailed account of my journey on my profile last month if you want to take a look! 
Just wondering, did anyone here try Tepezza prior to having their thyroid removed?