GDATF Community Conversations: Long-Term Use of Anti-Thyroid Drugs

This program is the second in a new series of GDATF webinars called "Community Conversations", designed to highlight different aspects of the patient experience.

Please note that comments regarding the content of this discussion are welcome, but any personal attacks will be removed.

Thanks to the County of San Diego Community Enhancement Grant Program for providing funding for this webinar and to Horizon Therapeutics and rareLife Solutions for assistance in getting the word out to potential panelists.

[paramountchessclub-chesspa]

Thank you for this podcast. Very helpful to those with the same condition like mine.

[kericummings]

Finally people that understand! Thanks for making this video!

[monw]

Good discussion, but they all seem so new to this, if very well informed!

No mention of block and replace as a dosing method which is what got me stable (following a relapse after a subtotal thyroidectomy in 1994). It isn't hugely popular and I understand why, on the other hand swinging high and low on antithyroid drugs every few months isn't great either.

I'd also comment that landing sufferer into normal range of thyroid hormones when you start ATD without sending them symptomatically hypothyroid is very possible, the trend has been to lower starting dose for the ATD rather than a big bold starting dose, and monitoring with fT3 and fT4 as well as TSH early on, this combination with frequent testing can get those levels into sane levels very quickly with few or no ill effects.

[ddfigueroa]

Thank you for the information. I plan to use long term methimazole as my first line of treatment. As the other panelists stated, my endocrinologists started discussing a thyroidectomy almost immediately upon my diagnosis. I have TED so RAI is not an option for me… and even if it were an option, I would have declined it anyway.

[jwiki]

I am pretty newly diagnosed with Graves as of Oct 2021 with eye involvement. I live in Hawaii and have researched some stuff but wondering if I need to know more. I have watched some of Drs who have/are researching from University of MI and Drs from Cedars in CA. I have been dealing with symptoms since about 2014. There seems to be more info on Hypo rather than Graves and Hyperthyroidism. I am going hypo now and it’s super frustrating!! I am on methimazole but have been slowly reducing dosage due to going into hypothyroidism. I am glad you had this podcast today! I want as much info as possible and wondering if this foundation has more? And oh my gosh I take Biotin and haven’t stopped it for blood draws so now I wonder if my hypo is real?!

[elegant]

Thank you for this presentation. I'm still undergoing testing for 4 mos. All labs say I'm in range. Anti's are elevated and have buldging eye. I want to have my labs in the sweet spot of what they call range. Labs differ from one another. Anyway, I have been on Beta Blockers for years due to hypertension. Wow, I wonder if they caused this development of being hyper t.? Anyway in this presentation were labs taken for liver and kidney function while taking methimazole? Were ther any taken for iodine and selelium levels? Excuse the typos, double vision here. Going for an eye injection with Kenalog this week. Wow! Serious side effects. Am not a candidate for Teppeza.
Cheers from SFV, CA

[krisgehami]

I received radioactive iodine for my Graves’ disease back in 2004 so then went hypothyroidism. But now 2023 my TSH is @ .47, just below the .50 marker. I feel like I should not be this low since I got radioactive iodine. Does anyone have some insight on this.

[jer]

Im not diagnosed yet but my bloods came last Feb and my tsh is 0.01, ft4 is 80 and antibodies is 10.20 (normal shoust be just less than. 1.75). Im afraid this is graves dse. I got a ppointmrnt with endocrinologist on Tuesday, plus my eyes are bulging andhave double and blurred vsiion. Its depressing making me feel I want to kill myself. I dont see my old happy self in the mirror. How will I continue treatment if Im not able to work because of double vision? Im taking carbimazole 30mg 3x daily and atenolol 5mg once daily, prescribed from Emergency department. 😭😭😭😭