So my “sweet spot” was a bit of a moving target, but I usually felt mostly OK. If you are having wild swings and just aren’t feeling well, looking into surgery or RAI would be an option. However, it’s definitely important to understand the risks before making a decision that you can’t take back!

Hang in there! I’m closing in on the two year mark myself, and am also very sensitive to changes in the hormone levels. It sure doesn’t take much change, even within the normal range, to feel kind of yucky. (To be honest, I’m not exactly sure what “normal” feels like anymore.) I seem to feel especially bad with low normal. Bad, bad brain fog. It took a while for my endo to come to the conclusion that it was thyroid related since the levels were technically “normal”. Anyway, while I still feel up and down, I’m encouraged that I’ve actually kept the same dosing for two months with relatively stable labs. My endo is pleasantly surprised. (My GP shared that the endo doesn’t think this thing will “burn out” and I’ll eventually need TT. We’ll see. As Kimberly says, there’s no “do over” with a TT.)
So yep, it’s a journey, for sure. I’m trying to remember that I’m gaining knowledge and perspective (very helpful with my nursing practice). I think that even after two years I have quite a ways to go with this patience thing that Graves demands.

I also have been on ATDs for over 2 years,with constant dose fluctuation, but I finally seem to have hit a sweet spot a few weeks ago. I may even start reducing the dose in 1,5 months.
I still feel very tired, though, my endo says it could be because my FT4 and TSH havbe been all over the place for such a long time, it may take time for my body to get back to normal. But she will check my cortisol levels on our next appointment.
So hang on in there!

Virginia

Thanks for checking back in on this thread – we seem to have been on a similar ATD pathway. Over the past several months, Doctor and I have slowly been reducing my doses of Tapazole (from 30mg weekly a year ago, to 12.5mg weekly, starting today). I have found that small dose reductions, and allowing several weeks between labs for the dose change to “settle”, has been working best for me. What has been happening is that with each reduction, my TSH first goes down, and then creeps back up on my second blood draw after the reduction. So, we reduce again. Hoping to be Tapazole-free at some point, since I slip a little to the hypo side of things every other draw (still within normal ranges, though). Between slipping a little hypo “for me”, and a known side effect of Tapazole, I hope to get to ditch the joint/muscle pain – my only “complaint” these days:)!

My doctor predicts (and he sees this often in his practice) that I will likely be taken off Tapazole eventually and monitored; then he thinks I’ll likely slip hypo and go on Synthroid – and another search for a Goldilocks dose will begin

A step at a time, with lots of patience in between – and as a wise facilitator here puts it – “Don’t give up”! Thanks again for your post, and all the best to you, too!

flora

I’ve been on mmi for 2.5 years. I’ve been on 2.5 mg for the past year and was doing well at that dose, but in September, my Endo felt I could go 2.5 mg every other day. Unfortunately, that change seemed to rock the boat and trigger some symptoms, so I went back to 2.5 mg every day. I’ll just try to reduce again at a later time. Does anyone see a benefit in splitting daily dose…does it matter?

Nice thread and very informative…let’s keep each other posted with updates.

James