I have thyroid dysfunction caused by an infusion treatment I did a few years ago. The new endo (I moved) was certain I had graves. He basically ignored me when I told him I had a history of things fluctuating and being positive for all antibodies. When I persisted he played dumb like he couldn’t see my labs that showed this. Then he told me he would do a radioactive iodine uptake test to prove I had graves. Did the test, and I had just started methimazole so there is zero chance it was affecting my numbers. I’m dx’d with graves but then my labs come back as hypothyroid so I immediately stopped the meds and told him so.

He disregarded that and told me to take a half dose. Rinse and repeat, each time I’m telling him I stopped the med and asking him to do something about me being hypo until I hit a tsh of 188 and lose my shit. Only dr I’ve ever fired. New endo actually reviews my history and I spend over a year on levo to get into normal range. But as soon as I get there I go hyper. So, basically for two years I’ve been told that they just need to fine tune the right dose, that my thyroid is dead, blah, blah, blah.

Today she said she thinks I’m one of the rare situations where I have fluctuating thyroid dysfunction. That part is obvious and fine, whatever. I guess good news: my thyroid kinda works when it wants to? So I asked her what we do about it long term because it’s so frustrating to live like this. My hands shake, I overheat, I randomly lose weight, sometimes my arms and legs feel like they’ll give out. The high body temp causes neuro symptoms that I had to start taking meds for because of this.

I’ve been holding onto the goal where I take a pill once a day and everything is fine because that is what they told me would happen if I developed thyroid issues from the treatment. So I wanted to know in the case where that never happens what we do. The answer was: nothing. Just keep doing this indefinitely. 3 month follow ups and constant dose changes in perpetuity.

I know thyroid issues are minor but it’s been such a thorn in my side for so long. I never expected it to be this hard to manage. Neither did the dr. I see endo twice as much or more than neuro. Kinda just want them to rip this stupid gland out and be done with it but she’s not even sure that would fix it because maybe I have celiac. Also, levo didn’t work so I have to take synthroid and it’s expensive to change all the time.

It feels so bleak to have no end in sight. My thyroid has been more difficult to manage than MS by far and the medical gaslighting did not make this any easier.