Someone may well have already posted this but it highlights the difficulty in finding the correct dose of levothyroxine after thyroidectomy. It is a tricky problem.
It's a different challenge than starting on a lowish dose and increasing over time with a slowly failing thyroid.
Since the dose needs to be evaluated on symptoms as well as biochemistry then patients need to know what the symptoms of over and under medication are. However, I cannot find a list of suitable symptoms. I can only find lists for hyper or hypo thyroid symptoms and they may not be the same to look for in mild imbalances that might eventually lead to a big imbalance. No wonder it's currently such a muddle and people feel ill for so long after thyroidectomy.
There is precious little support to achieve the right dose afterwards and maintain it going forward. It can be a horrible roller coaster of symptoms.
What do you think would have helped you find the right dose after total or partial thyroidectomy?
I absolutely agree with this. I had a partial thyroidectomy 13 years ago and still had functioning tissue so I felt normal. Two years later I had some slight fatigue and my TSH went up to 5 so the dr recommended levothyroxine. It was so easy starting at 50mcg, then 75mcg, and settling on 88mcg. I never had any symptoms or side effects, however it's after I started to take Levothyroxine that my quality of life started to subtly go down over the following 10 years. In 2017 my FT4 and FT3 levels dropped. I suspect my generic Levo was switched on me at some point because I went from being functional to nearly bedridden. Due to how sensitive I am to even the smallest changes in potency I know that the rest of my thyroid is no longer producing hormone. It's like not having one at all. I've tried to up my levo but I just get terrible pain and symptoms. My FT4 levels always had to be over range to get any benefit from Levo but I can't seem to get my FT4 levels back up without the bad symptoms. It's very different now from when I still had a functioning thyroid.
Very interesting, thank you for replying. Do you know what your FT3 levels were when FT4 was over-range?
Do you think it would be worth trying the newer liquid formula to see if it improves quality of life?
As I understand it, we can't just top up what's missing in thyroid hormone but have to replace the whole thyroid function because once we add levothyroxine. The pituitary gland senses it and reduces the amount of thyroid hormone our own body produces but since I don't fully understand this, being only a fellow patient, I don't know for sure if that's correct. Maybe someone on this forum understands the principle?
My FT3 was around 70-80% on the reference range and FT4 was 113% but I still had hypo symptoms and my TSH was still around 1.3 and above. I'm trying a combo of T4 and T3 currently. As far as liquid levo it is good for those with ingredient sensitivity or absorption issues. The absorption is somewhere around 98-105% whereas pill form is about 80%. I could be off a little on those numbers. We have Tirosint in the US, which I tried, and I can confirm liquid Levo is more potent so if your FT4 levels are already at the top or over range you'll probably want to start on a lower dose.
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