My new bloodwork, need advice please 🙏

[T808]

My new TSH blood work. Need advice (also refuses to test FT3)

TSH w/FT4 Reflex 1.03 (0.270-4.20)

This was after the Doctor reduced my levothyroxine from 137mcgs to 100mcgs. After a week I felt so bad (dry lungs, out of breath) I bumped it up to 112.5mcgs without telling him by splitting extra pills into 1/8s. So this bloodwork is on 6 weeks of 112.5. I still feel hypo though with constipation, dry skin, slight edema, low energy, dry hair, high cortisol, sleep issues. Would bumping it up another 12.5mcgs (125mcgs total) benefit me? What would you guys do? Or alternate 112.5 and 125 on opposite days first? I will be going to get private blood tests so I can actually see my ft3 until I can see the endo in 2 months. Any advice appreciated. Thank you 😊

[pennyannie]

Hey there again :

It is totally pointless running just a TSH blood test.

You have had RAI thyroid ablation and your HPT axis, the Hypothalamus / Pituitary / Thyroid on which the TSH relies is now broken as you haven't a thyroid as it's been disabled by having had RAI 20 odd years ago.

[T808 in reply to pennyannie]

Exactly how I feel pennyannie , I felt better within a few days when I bumped it up from 100 to 112.5mcgs. Breathlessness mostly went away. I still have some hypo symptoms even though the doctor thinks it's great with a tsh of 1.03 I didn't tell them yet I had manually adjusted my dose to 112.5 for 6 weeks before the bloodtest. I've begged and begged this doctor to help me. He has been wrong every single time he changed my dose. Originally put me on 175mcgs when I showed hyper symptoms on 150mcgs. Lost 35lbs in a month. Only when I went to the ER with my hair falling out and a RHR of 130 did he listen a bit. Originally before the ER he just said to stay on 175 for 6 weeks. I probably would have lost 50lbs by then. Then felt hypo at 100 and couldn't breath but he refused to order labs until 6 weeks. I know 6 weeks in the norm but with drastic dosage changes like that and bad symptoms there should be some give in the rules. That's why I manually went to 112.5 and felt better but not perfect.

Good news though, I was able to switch Doctors! New appointment Monday. And then I'll come clean about my manual dosage change. Endo is still 2 months off though. Hopefully this Doctor is better than the Thick skulled man I've been seeing. I specifically asked to be switched to a female Doctor. They seem to be more empathic and want to get to the bottom of things. Connect with the patient more etc