I started Levo about a year and a half ago at 25mcg. My TSH was hovering around 3.5 I believe, fluctuating up to 4/4.2 at times (as far as it was caught anyway, bloodwork was infrequent).
My TSH went up slightly while on this dose. Several months ago, it rose to 6. My doctor wanted me to wait and retest in 2 months, after which it was basically still 6, and they reluctantly increased my dose to 50mcg.
My latest bloodwork shows my TSH at 4.4. The lowest it’s ever been on meds was around 3.5. I don’t feel any better (I understand that‘s far from a given) but I have felt much worse when I have these increases in TSH, especially when it sat at 6. I’ve lost most of my hair, my skin is dry and cracked, I have trouble with several joints, I’m cold, exhausted. I also have a small pituitary tumor and low estrogen (<25) the latter which my doctor has finally acknowledged may need some action (long story on the former, but on meds). I have low B12 and Vit D which my doctor has asked me to increase supplementation for. Just to give more of the full picture.
My doctor says TSH is great and in range. They only test TSH except for occasional Total T4 and T3 uptake with it. I’ve asked for other labs and was told they don’t make a difference. As long as my TSH is under 4.5 my doctor says everything’s fine, and even when it was 6 they were hesitant to do anything for only a “mild elevation.” My doctor’s opinion is that my symptoms come from some unknown 4th factor and not any of the above 3.
The problem is that I’ve discussed my thyroid/had labs done by my primary, endocrinologist, and a rheumatologist and they’re all TSH-only. I would feel ridiculous just trying another local opinion given this history. But I’m also at a loss of what to do to get better care. Does anyone have a positive experience with visiting a doctor listed through the American Thyroid Association, or some other similar group? I know they’re not endorsements, but hopefully doctors who would do more than the bare minimum? Or a reliable group with patient reviews? Appreciate any suggestions.