I have been dealing with thyroid issues after doing a treatment that is known to cause thyroid dysfunction in a high number of people. I went hyperthyroid with an undetectable tsh and was very symptomatic almost two years ago. After several months of figuring things out, my tsh skyrocketed in less than a month from undetectable to 188. I was finally put on Levo about 1.5 years ago. It took a few dose increases and about a year to get my tsh in normal range. I started at 75 and was most recently at 125. According to my endo this is a large dose for someone my size (5’3” 130lbs).

Because it took so long to normalize and because I needed such a high dose I was tested for celiac. However she told me if it came back negative it was still possible I had celiac. If it was strongly positive then we could assume absorption was why I required a high dose. The test was negative.

About 3 months ago I went hyperthyroid again. My endo is trying me on synthroid now to eliminate variables to see why I can’t get stable on the meds. She also suggested repeating the celiac blood test and floated the idea of a biopsy, just to cover all the bases. I assumed after hitting a tsh of 188 that my thyroid was dead, but now I’m wondering if there is a small amount of residual function (not enough function to go off meds but enough to mess up my tsh every once in awhile). My endo said it’s possible and eliminating variables would help us prove this.

Does anyone here have any suggestions for other tests to try or other medications I can look into? The synthroid is $$ so I’m really hoping I don’t have to stay on it. I feel frustrated that the thing they told me was super easy to manage if it happened to me has been a two year ongoing saga. I’m tired of my hair falling out, the drs appts, the weight fluctuations, my liver function and cholesterol numbers out of range (what is this doing to my heart and arteries?!), the constant blood draws, adding another possible thing to the “why do I feel like shit” algorithm, etc. for this supposedly easy to manage thing.