I will try and keep this brief, just typed the whole story out & our internet dropped and lost the whole lot!!
January 2013 - hubby was finally allowed to go on T3, he had become resistant to T4, was very poorly, in lots of pain, knackered etc etc. Within 48hrs on being on T3 he felt great and was back to his old self again. He was on 2 x 20mg per day.
End of March/April - he was starting to feel rough again, same old symptoms. He had his bloods done and despite our GP asking for his T3 to be tested the lab refused (pct?? funding issues by all accounts) His TSH was 76.8, no wonder he felt ill, gp sent him to hospital, they were as much use as a chocolate tpot, ended up being told by the endo there to mix T3 & T4. Within 2 days he couldn't walk up the stairs without a lot of pain and coming down was on his bum :O( I took the decision to take him off the T4 and up his T3 to 3 x 20mg per day. He improved significantly.
End of June - Bloods tested again, TSH only tested (again gp did ask, and I underlined it several times for the T3 to be tested but they didn't do it) TSH was 2.4 so he was left on the same dosage
End of September - Bloods done again, TSH came back as 17.6 so gp advised him to up the T3 to 20cg 4x per day. However he is not feeling any better at all, if anything he is feeling worse, he is totally pooped the whole time, his joints and muscles ache the whole time, 12hrs sleep Friday and Saturday nights don't give him any respite at all.
We just don't know what to do. I was wondering if taking 40mg twice a day would help rather than spacing it out so much? We don't have a local Endo who specialises in T3 (we are on the Essex/Suffolk border, our T3 guy emigrated earlier in the year)
So I have 2 questions, the one above about doubling the dosage but only twice a day not 4x's and can someone recommend a good Endo local to us (by local I mean within a 2 hour journey time) We will go further if needed, we desperately need to get him sorted and some good advice.
Many thanks for your help