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EndocrineWeb Community Advice

I had RAIU in 1999 after (apparently) many years of undiagnosed hyperthyroidism (which my doctors said was pretty much as high as they'd ever seen). Thyroid function thereafter plummeted and I was utterly miserable with debilitating muscle spasms, massive hair loss, 15 lb weight gain despite eating under 600 calories a day, and failing asleep at my desk and while driving. It took my docs at least year to get me normalized after gradually adjusting the dose upward and then downward before I finally landed at levothyroxine 150 mcg. That dosage is where I've been for almost 18 years.

Meanwhile, in 2002, I was dx with TED in both eyes and had an orbital decompression and muscle surgery on the more severely affected eye. Fast forward to 2013, I was dx with breast cancer and started Tamoxifen, which I still take. I also underwent a bilateral salpingo oophorectomy and hysterectomy. Fast forward again, and I moved to another state and therefore lost my wonderful doctors. Several months ago, I was dx with beginnings of osteoporosis in one limb, which my prior onco told me would likely develop as a result of surgical and medication induced menopause.

Here's the problem. I now have a PC doc who doesn't like my undetectable TSH despite my normal T4 (he hasn't run any other lab) and despite the fact my TSH has been below lab norms or undetectable in almost every test I've had since 2000. Moreover, I have no clinical signs of overactive thyroid (i.e. no rapid heartbeat etc.). I believe my early osteoporosis is tied to 5 years on Tamoxifen and 4 years without ovaries. With this hx and solely based on the TSH, my PC now wants to reduce my dosage to 137 mcg, which is what I was on when experiencing the miserable symptoms described above. Because he is refusing to continue my present dosage, I asked for a referral to an endocrinologist (despite having a PPO, apparently in non-patient-oriented Michigan, specialists won't see patients without referrals). The endocrinologist "declined" to see me, apparently because she feels the PC can manage my meds.

Because it is so stinking difficult to get into either a PC or specialist in Northern Michigan (lower peninsula), I feel I must get involved directly in my care. Can someone help me determine what additional labs should be done to see if I am actually hyperthyroid and/or whether a reduction in medication is indicated given the totality of circumstances (and why)? Also, can someone explain what else can effect TSH that does not translate to a dx of acquired hyperthyroidism due to overmedication?

Thank you so much,

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