25F with Graves’ ophthalmopathy/TED — last IV steroid session and still no improvement. Is there still hope for my eyes?
TED photos monthly update:
[You may check what my eyes/face looked life pre-graves to now](https://drive.google.com/file/d/1wDBXad1uLKVGgGaFWKeDMzBqICAlLf0B/view?usp=drivesdk)
I’ve posted here before asking about IV steroids and how they might affect me, but I’m back because I’m honestly feeling quite disheartened and could really use some insight from people who have gone through something similar.
For some context, I’m 25F from the Philippines. I was diagnosed with Graves’ disease in September 2025. It initially started with muscle weakness, tremors, significant weight loss, and eye twitching. Eventually, my eyes became noticeably asymmetrical, I developed proptosis, and I started experiencing double vision.
My thyroid levels are currently stable/euthyroid since December 2025, but unfortunately, my eye disease has remained active and has become the part of Graves’ that has affected my life the most.
I recently found a new orbit/oculoplastics specialist who recommended an aggressive course of weekly IV methylprednisolone for **6 weeks**:
**Weeks 1–3: 1 g IV steroids**
**Weeks 4–6: 500 mg IV steroids**
**I also had an intraorbital steroid injection**
I started keeping a Google Sheet to track my symptoms, eye measurements, double vision, and treatment progress because I really wanted to see whether things were improving over time. If anyone is interested in seeing my timeline and tracking, I’ve kept the spreadsheet here:
I eventually stopped tracking after my 2nd IV steroids because I kept feeling distressed with how I feel like I only kept writing worsening observations and not improvements.
Unfortunately, things have not gone the way I hoped.
After my intraorbital steroid injection, my left eyelid eventually became droopy, and my previously intermittent double vision became constant. It was incredibly disheartening because the diplopia has become quite disabling and has affected my ability to function normally.
I’m now on my last IV steroid session, but I still have constant double vision. My eyes also appear more asymmetrical to me, and I don’t feel that the IV steroids or the orbital injection have made a meaningful improvement in my eyes.
I was initially hoping that controlling the inflammation would at least give me some improvement or stabilization, but at this point I’m scared that I’m running out of options.
One of the hardest parts is that I’m from the Philippines, where Tepezza (teprotumumab) isn’t really an option for me, so I’m trying to understand what other possibilities might exist.
I know everyone’s TED journey is different, I’m mainly hoping to hear from people who have been in a similar situation and find hope that I can get my eyes back.
- Has anyone had little or no improvement from IV steroids, but improved later during the inactive phase of TED?
- Has anyone experienced worsening or persistent diplopia during the active phase and eventually had significant improvement during the inactive phase?
- What treatments did you pursue after steroids didn’t work?
- For those who couldn’t access Tepezza, what alternatives were available to you?
- After orbital decompression, strabismus surgery, eyelid surgery, radiation, immunosuppressants, or other treatments did your eyes really got back to normal?
- Most importantly, is there still hope for meaningful improvement when you’re already this far into the disease?
I know that some of the changes from TED can eventually be addressed surgically once the disease becomes inactive, but right now I’m struggling with the uncertainty. I miss my old eyes, and I miss being able to function without constantly thinking about my vision.
If you’ve been through something similar, I would genuinely appreciate hearing your experience, even if your journey took months or years. I could really use some hope right now.
Thank you. ❤️