Has anyone else struggled to balance levothyroxine for underactive thyroid?

[Thedistancebetweenus]

I’m really struggling with underactive thyroid. I’ve been taking 25mg of levothyroxine since dec 24, when my TSH was 5.7. In April 26 it was 12.2 and my dose was increased to 50mg, but after 3 months TSH was 14.6. GP has now increased dose to 100mg.
Have others been in a similar position? I feel like it is having a huge impact on my energy levels and metabolism, but that the dose was perhaps too low. I keep reading about people really struggling with TSH of 6 and don’t know if mine is off the scale high or if this is where everyone is while medication is balanced.

Yes your tsh is high… for me to feel normal my tsh needs to be under 2. When I was disagnosed it was over 50 so the scale is pretty big. For ref, I weight 67 kg and take 100 to achieve this… 25mcg sounds super low to me but I guess they need to slowly up the dose. Hope you get your levels in the right place soon.

You need to take it religiously at the same time every day, before eating, no tea (or coffee?). Get tested every 3 months and see if the tablets make a difference

I've had hypothyroidism for years. I started at 50mcg thyroxine and it's gradually increased over the years. I currently take 150 mcg and that keeps my TSH at around 3.5. My gp tried reducing it to 125 mcg but I felt awful and my TSH went up so they increased the dose back to 150mcg.

My last TSH was 61, I’m on 250mcg of Levothyroxine and got to admit it’s never ever helped me. I never feel ‘well’. I’m sick of it. I’m under endo but they’re useless, just want 8 weekly bloods only to ring and say it’s awol again.

So sorry you feel like that, I’m honestly exhausted constantly, I sympathise. Xxx

I'm not currently on levothyroxine but may very well have to be in future (had half my thyroid removed to treat hyperthyroidism and there's always a chance it could pack in). Starting dose is recommended to be your weight in kilos multiplied by 1.6 and then rounded to the nearest 25mg.

Do you know what your T3 and T4 have been doing - those are the hormone levels that more directly influence how you feel, as I understand it TSH is more of a signal. And have you been tested for autoimmune conditions like Hashimoto's?

Levo in general is meant to get you to normal thyroid function. It's bad for your heart long term for your TSH to consistently be raised & definitely not the goal of treatment!

I've had similar numbers to you and 75mcg seems to be my dose for now. Glad I didn't get put on 100mcg as at my last check I'd gone from a TSH of 6 to less than 1! I'd almost gone into hyper. 25mcg wouldn't do much, but I'm surprised 50mcg didn't bring your TSH down at all. Most people do seem to end up on a dose of 100mcg or more though.

I didn't feel any different at any of the different TSH levels from 0.14 to 11. Maybe very slight increase in energy now I'm optimal but nothing amazing. I've even put ON weight when I needed to lose it! It varies such a lot-one person might feel terrible at 6 another might be fine. It can take a while to find your optimal dose. Good luck!