u/redcoatmystery

Anyone know of good group for newly diagnosed TED? This is so stressful. I think we should start one.

Hmm. Thinking I most likely have secondary. If I take t4 I feel really hyper and my thyroid feels a bit swollen. I seem to only tolerate T3 medication.

My TSH wasn’t elevated for a long time and only raised to 3.5 after 5 years - while the entire time my free t4 and free t3 were tanked.

Prescribers didn’t want to treat… and “mess up my thyroid” only going by my normal range TSH.

I’ve been pushing back. But can’t seem to tolerate more than 6-8 mcg. So microdose.

Anyone relate?

Can this condition cause morning swelling, and fry, watery eyes?

Wonder how many symptomatic people who advocate for screening end up not having TED? It seems so unique and frustrating… that you’d think a high percentage eventually get diagnosed. My symptoms started two months ago. After pulling back on thyroid medication for low t3 only. Oddly, I lost my smell for 2 weeks before it happened. And taking a microdose glp1 shot which gives me dry eye. Crazy gritty eyes, swollen in the morning and evening. So so dry. Small shooting, fleeting pain from dryness, watery. Subtle pressure. One eye has looked bigger to me for years, I think I’m asymmetrical by nature. But looks a bit poppy with possible retraction, but ophthalmologist isn’t confident. Because all this could be dry eye, naturally 1 mm larger eye, and lids changing based on swelling severity. She’s like - let’s wait and see how things look in November. Also, if it is TED it’s “too mild to treat.”

But I mean. This is weird and terribly disruptive to attend to my eyes all day. I need to wake up an hour early just to calm them down before people see me. They look horrible in the morning.

Who gets these symptoms and doesn’t have eye disease… and then goes back to normal. Can’t imagine.

Wondering what’s a good inflammation score for this condition. I’m slightly over 3, and wondering if I should push back on ways to reduce?

I have this. Who do I need on my medical team? Auto-immune neg 8 years ago. Think I’ll retest. But what would you say are the FIRST 10 STEPS I should take to map out my medical team? Thank you!!

My rbc, hct and hemo are creeping up! WTH?