I have had a journey with my thyroid. I was hyper twice, the second time with very scary symptoms. The first episode my numbers returned to normal. The second time I told my new endo I had a history of this but he ignored me. My numbers started to trend upwards. I stopped taking the beta blockers that were previously keeping my hr (barely) under control because my hr was now normal. I told him that. He did a thyroid scan, was convinced I had graves, put me on methimazole. My tsh came back just a couple of weeks later at 18. I went from undetectable to 18 in about a month. I stopped the methimazole and told him. He said I should keep taking it. I did not.

Next labs showed my numbers somewhere in the 75 range. Told me to half my methimazole dose. Told him again I wasn’t taking it. Asked for levo, he ignored me. Next labs my tsh is 188. I have an absolute fit, call the office and request an appt with literally anyone but him. He schedules a same day appt to argue with me that he was providing me reasonable treatment and finally agreed to give me levo. I fire him anyways because his ego caused me several months of suffering and frustration.

That was just about a year ago. I hit normal range once about a month ago. I backed off of my high dose because I was afraid of being hyper again. I get monthly labs so I tried an older prescription I had of 100mcg. My tsh shot up immediately to 18. My endo started me at 75, which she said is an average dose for someone my size (5’3” 125lbs). She’s upped it multiple times and I’m now on 8-125mcg pills per week. I take two on Sundays. She tested me for celiac because she said it’s unusual to need that large of a dose. The test was normal so I still don’t know why I take so much. Does anyone else deal with this?

I take a very small dose of adderall (5mg) with the levo and often wait several hours before eating. I drink coffee with a non dairy creamer in the morning which she said is fine. I can’t wait to take the adderall because it’s time release so it has to be taken as early as possible or it messes with my sleep. I take the adderall only on work days. Any thoughts? Are there other meds I can try? Is it possible I do have celiac after all? Other things I should consider?