Sorry. I am feeling quite low and more than a little broken. I have Graves. I have been taking PTU. My T4 vs T3 has never been balanced and my Graves is T3 driven. Apparently 30% of people who have Graves’ disease are T3 thyrotoxic dominant/driven.
For 3-4 months I have been titrating my own PTU drug levels because when I take large doses of PTU I don’t feel like me. I lose my spark. When my T3 is just over the range (7.5) range 2.0-6.0 then my T4 just scrapes into the bottom end of the range (12) range 10-24 or T3 in range (3.5) and T4 way under (5) Never being able to find balance with my numbers. But I promised my GP I would take the 150mg of PTU for 6 weeks to suppress my thyroid to prove to endocrinology I could comply with their protocol. A comment made from Endocrinology in June 2021 that came back to me via my GP back to me was “this process is taking too long”.
Today my T4 was 5 range 10-24 and my T3 was 3.5 range 2.0-6.0. TSH <0.001. How do I feel? Physically bed bound for two days and emotionally/psychologically broken. Not wanting to get out of bed. Not wanting to be around people. It takes too much energy.
My GP has advised me that endocrinology admit they have overshot my PTU dose making me temporarily hypothyrodic. It may take a few days or weeks to feel ok again. Endocrinology have advised the GP there will be no block and replace and that I am to find wellness by balancing my T4 with my T3 naturally using only PTU. I have a formal appt with endocrinology next week to discuss their decisions. I live in New Zealand and we don’t do block and replace here. We don’t prescribe T3 either or NDT.
I worry that at next weeks formal endocrinology appt I will be berated for not sticking to their drug protocol and in essence I have wasted months of time. But in my defence it potentially turns out I was right to not take huge doses of 100mg, 125mg and 150mgs daily as advised and by me titrating my dose based on how I feel has been the right thing to do.
So that’s me. I feel defeated and very done😔
Also worth noting. In my notes today at the hospital it said T4 is irrelevant. Good to know we wasted tax payer money testing that today.