I have been struggling with getting my TSH back to normal for about three years. I did Lemtrada and I was told there was a high chance I'd be hypothyroid after treatment and they explained that I'd just take a pill every morning and get labs every once in awhile, nbd. Lemtrada is treatment for MS so I felt like that decision was easy-- brain > thyroid. About a year and a half after my first infusions I went hyperthyroid. I wasn't very symptomatic and by the time I got seen by endo a few months later my labs were normalizing.

About 6 months after that I went hyper again and this time I was very symptomatic. TSH was undetectable and I went on the meds to control my HR which really just kept me at 150 if I walked instead of 175 . I moved so it took awhile to get into Endo again. I explained that I had a history of my numbers normalizing but because I had done Lemtrada the Endo was DEAD SET on dx'ing me with Graves. Even though I knew from my previous Endo appt that I had all of the antibodies. So he scheduled me for the RAIU test and drew my antibodies again. The RAIU test showed a pattern that indicated graves so I was officially diagnosed and started on methimazole. Antibodies were all positive. I was given instructions on taking it, to let them know when my HR was staying in normal range and what not and to discontinue the med that was controlling my HR.

That was around mid November. I drug my feet a little on taking the methimazole because I was nervous knowing my numbers had returned to baseline in the past. So I started it maybe a week later. By then I was noticing that my HR was trending down and I was taking a smaller dose of the HR medicine. I let the DR know in a portal message that I was seeing signs that I was spontaneously going back to baseline. Because of Lemtrada treatment I get blood draws that check my TSH monthly. So the December draw came and by then I had been on the methimazole maybe a couple of weeks or so. The results showed my TSH was now 18. It went from undetectable to 18 in less than a month. I stopped the methimazole at that point but by January my TSH was a whopping 188! You know whats not great? Being almost completely unable to create body heat in the middle of winter. I have never felt so cold from the inside out. I took a lot of baths.

That was the winter of '21-22 and its been a battle ever since to get back to normal range. My levo dose was up to 150 at one point, which the endo said is a huge dose for someone my size. But we weren't seeing progress or I would backslide if we went to a lower dose. Eventually I was put on synthroid because my numbers fluctuated so much. After about a year I skimmed into the normal range and I was SO HAPPY. By the next month I was in the hyper range again. We lowered the dose a couple of times but I was still hyper. I just moved to 75 and until last month my numbers were finally trending in the right direction again after being hyper for over a year. Last month they were 0.07 but the rest of my labs didn't result due to some type of error with the specimens so I wasn't sure how accurate that number was. This month my TSH is 0.01. Sigh. Here we go again.

I'm just so sick of this. I've been thankfully mostly symptom free even though my numbers have been out of range for 3 years. In the last week I did start noticing some symptoms, like headaches and dizziness, weakness, lack of appetite, difficulty sleeping/feeling tired, etc. Which make sense now that I know my TSH is so low.

I like my Endo a lot but I'm starting to wonder if I need someone who will manage this more aggressively. And if so, what does that actually mean? Its a rare presentation that is difficult to treat. Am I expecting too much? Or should I just get my thyroid removed so I can have the "take a pill a day and get labs every once in awhile" I was promised? How are y'all who deal with oscillating thyroid disease managing it? My Endo just basically said we do what we are currently doing-- appts every 3-6 months, frequent labs and dosage changes forever.