Update on appointment re Low TSH

[FleetRose]

The Endo was very compassionate and understanding, spent a long time with me (35minutes +) going through absolutely everything, listened to all the information I had ( thank you team!) and everything I wanted to ask etc. Initially she suggested lowering my Levothyroxine (no surprise there), but agreed that I could keep it at 50mcg and the Liothyronine at 2 x 5 mcg. She was not prepared to increase it (Levo) but happy that I could experiment with higher Lio/lower Levo or vice versa over time to see which suited me best. I realise that if I decide to increase the Levo without lowering the Lio, I would have to do so without telling her (I have enough tablets)and private test after 6 weeks.

She thought it was only higher doses of steroids that would lower TSH levels (and was apparently used specifically to do so in the past). The plan is a faster taper of steroids which might help.

So all in all not completely negative as I have some room to manoeuvre thanks to my stash of levothyroxine and I did think she might withdraw my Liothyronine prescription completely.

However, she did not think my symptoms were caused by a thyroid issue which I still suspect.

An appointment with a private Rheumatologist tomorrow (I waited a year for the last NHS appointment) and I've learned recently that I have been referred to neurology. And on it goes...

[Batty1]

Im not surprised your having issues being on high dose of steroid's….Your TSH will be low because your on T3 and this probably won’t change much once your off the steroids.

[serenfach]

That is good news - some help at last! I was booked to see a rheumatologist and waited a year, drove 45 miles to the hospital, to find she had retired six months earlier, and there was no one in West Wales. I drove 45 miles back repeating every swear word I knew over and over. Still have not seen one!

Hope the appointments are helpful.