Trouble regulating TSH long after thyroid surgery

Posted by binw @binw, Dec 4 3:08pm

I am 11 years out from a successful total thyroidectomy. I feel great, and with no particular fatigue or hyper feeling. Suddenly, my meds dosages are evidently incorrect. For months now, with dosage changes both higher and lower, my tsh is out of whack. Any others with this issue?

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kmlnj | @kmlnj | Dec 5 7:38am

I am glad you are doing well. I don't know if my post is helpful. But for many years I had undiagnosed thyroid cancer (big tumor wrapped around my trachea) and all my blood numbers were normal. Now, 1 year post op. I let my endocrinologist decide if she is concerned with my blood tests. It's all complicated.

3oakley2 | @3oakley2 | Dec 5 11:07am

I had to start using name brand Synthroid because the pharmacy generics were always changing. I get it from a Synthroid mail order pharmacy in FL after a friend in SC told me of the pharmacy. It’s about $50 cheaper every three months than using my insurance for name brand meds. My endo and Moffitt Cancer Center have both used this pharmacy for me.

binw | @binw | Dec 5 1:16pm

In reply to @kmlnj "I am glad you are doing well. I don't know if my post is helpful. But..." + (show)

@kmlnj It is complicated. The problem is that evidently very low tsh can cause additional bone loss, and that's not helpful at my age! Lol

sandy8043 | @sandy8043 | Dec 5 4:05pm

I had my thyroid removed May 2024. After initial ups and downs my levothyroxine dosage was stable.....till it wasn't. Who knows why it stopped working. Now once again I'm good. But I have a friend who is in her 70s who lost her thyroid in her 30s. She has thyroid blood work every 6 weeks because hers goes wonky from time to time. So her dosage is adjusted often she says.

binw | @binw | Dec 5 7:40pm

Thank you for this input. I just had a call from my Doctor's office, and they have changed the dosage yet again. I fear I will eventually just return to the original dosage from many years ago, after having gone through these many changes in the past year. Your friend sounds much like me. 🙁

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