I am looking for some general information and to see if anyone has been in a similar situation with varying TSH levels and frequent changes of levothyroxine dose
I had a full thyroidectomy and right side neck dissection back in April 2024, and then RAI in June 2024 and I am in remission. I was initially on 125mg of levothyroxine, around 5 months or so of being on that I was changed to 150mg, it stayed this way until a few months ago. In September 2025 my dose was changed to 125mg after blood test results and then in October my specialist changed it again, this time to 100mg.
It's now December and I have just been seen by my specialist, I have had more bloods taken. I am now changing my thyroxine again this time to 6 days of taking 100mg and 1 day a week of taking 200mg, as the preferred option is for me to be on 110mg a day but thats not an option in the UK.
My TSH is sitting at 2.55, I have been told not to worry there is no sign of the cancer and that they just have to change the meds to get the TSH back to where it should be. I have been booked in for a scan as well in the next few weeks.
I am a bit on edge as I recall being told at the start of this journey my TSH should be below 0.1mg/l and I also have this written in a medical letter from my doctor. It states “At the moment she has a high risk of thyroid cancer, so our aim is to suppress the TSH below 0.1 mg/l.” The letter was sent last year from my doctor after my surgery but not before my RAI so maybe I am reading too much into it; but I was under the impression that it was to always stay at 0.1mg/l.
I am just wondering if anyone else has experienced a lot of change with taking thyroxine and TSH levels varying so much 1.5 years post surgery? It would be great to hear from anyone who was going through anything similar 1.5 years post surgery. I’m trying to stay chill about it but i am overthinking, wondering is this all okay or is there red flags, am I being told not to worry about something that I was told before would be an issue, or am I just spiralling 
it probably doesn’t help that I was told I’d be seen every 6 months but once January comes around I’ll of been seen 4 times in 4 months, which makes me feel a bit more suspicious
