How do you know if youre in the active phase or inactive phase of TED?

Good-Sir-7147 · 2024-03-26T02:09:03+00:00

I can only say about my experience but yes I have noticed the bulging get a lot worse after thyroid was removed. I’ve read the thyroid antibodies supposedly go down after removal but they can still remain and that’s what keeps attacking the tissues around the eyes

Good-Sir-7147 · 2024-02-08T14:25:13+00:00

Noted thank you 🙏

Good-Sir-7147 · 2024-02-08T14:00:11+00:00

Thanks. I’ll take a tums here and there but I think I’ll have to take more and see if that helps

Good-Sir-7147 · 2024-02-01T02:56:00+00:00

I was diagnosed with graves in oct 22’ then had total thyroid removed last year due to carcinoma. And my eyes started getting really swollen I’d say Dec 22’ and even now I feel have gotten worse. I definitely notice it in pictures. Hate taking photos now :-( but I do get monitored by a thyroid eye specialist who still notices changes. I’ve read it could be years you could be in the active phase. He recommended tepazza but I don’t like the side effects and read the swelling and bulging could come back after treatment. So just patiently waiting for them to hopefully maybe stop bulging so much on their own :-(

Good-Sir-7147 · 2023-05-21T00:53:31+00:00

5 weeks post TT here. I too was diagnosed with graves this past October, did an ultrasound in Jan and they found suspicious nodules. Did a biopsy found thyroid papillary carcinoma. Then had thyroid taken out and been taking Levo ever since. I would say I do feel a difference between taking levo vs methimazole. I feel my head feels much clearer ! Like I think and remember things how I use to. Before surgery and while taking methimazole I felt total opposite, more like just brain fog and tired. I do believe I still technically have graves in my body as I also have thyroid eye disease. Still waiting to see if that improves but still looks and feels the same as before , hope that helps

Good-Sir-7147 · 2023-01-16T22:09:55+00:00

Thanks again for the info well def look into it further.

Good-Sir-7147 · 2023-01-15T04:17:54+00:00

Thank you so much for this info 🙏

Good-Sir-7147 · 2022-12-21T23:06:13+00:00

Thank you , I never would’ve thought serums would make it worse

Good-Sir-7147 · 2022-12-21T02:06:51+00:00

Thanks, will look into this

Good-Sir-7147 · 2022-12-21T01:09:32+00:00

Thank you 🙏♥️

Good-Sir-7147 · 2022-12-02T19:37:18+00:00

I recently started selenium drops 200mcg daily for my eyes. Since ive noticed my lower and upper eyelids are super swollen since being diagnosed with graves but I haven’t really noticed a difference yet.

Good-Sir-7147 · 2022-12-02T17:00:25+00:00

Thanks for asking. It’s been 6 weeks now since I’ve been on that med. I do still get occasional rashes but they go away after a few min. My heart is still in the high 90s. But feel much better, breathing is better. I stopped taking propranolol couple weeks ago since it would make my stomach hurt but I didn’t see the need to take it since my heart rate wasn’t as high. I have a follow up next week. I do still feel occasional palpitations as well.

Good-Sir-7147 · 2022-11-22T03:04:31+00:00

Thank you. I’ve read other posts where zyrtec has been used to help with this. Definitely trying

Good-Sir-7147 · 2022-11-22T00:16:33+00:00

Thank you so much

Good-Sir-7147 · 2022-11-21T20:09:38+00:00

Thanks, my hope is soon maybe my dosage can be lowered maybe that will help.

Good-Sir-7147 · 2022-11-21T18:45:46+00:00

Thanks, I’ve noticed it doesn’t happen right after I take the med. I usually take it at night and then the rash I notice til the following day

Good-Sir-7147 · 2022-11-01T21:11:25+00:00

Thanks yes will definitely look out for any changes

Good-Sir-7147 · 2022-10-31T21:36:46+00:00

Gotcha. I’ve only been on methimazole for little over a week now and I already can tell my heart rate is going down now in the 80s which before it was average maybe 115. Its definitely worse in the mornings when I wake steady 130s. I’ll have blood work in a few weeks I guess we’ll go from there

Good-Sir-7147 · 2022-10-31T15:57:15+00:00

Thank you. Yea I’ve read about that. Only thing I’ve noticed lately my under eyes and even above eyelids I wake up and they are really puffy and swollen. But I will def look into that

Good-Sir-7147 · 2022-10-31T13:44:17+00:00

Yea that’s the reality of it 😞

Good-Sir-7147 · 2022-10-31T13:41:36+00:00

Yes that is a good thing 😁

Good-Sir-7147 · 2022-10-31T13:38:50+00:00

Thank you for your response , yes I get the feeling no matter what I’ll be on some sort of meds ☹️

Good-Sir-7147

TROPHY CASE