Has anyone been diagnosed with Isolated TSH deficiency?
I've just seen my Endo for the first time since I had my MRI on the pituitary and some other blood tests taken. Pituitary didn't show anything up and my cortisol was raised, so going to have a 24hr urine test just to see. IGF-1 came back ok along with blood glucose and cholesterol as well.
Endo feels that my symptoms point towards Chronic Fatigue and M.E however although my pituitary MRI came back as fine, he thinks the pituitary is not releasing enough TSH, resulting in my Free T4 staying low/low normal of the range.
I'm on Sertraline and apparently that is being used to help with fatigue, he's suggested I up my Levothyroxine from 50mcg to 75mcg. He thinks in cases like this those two lots of medication used together are a great combination. I asked about T3 however he doesn't think I have a conversion problem just the fact the pituitary isn't releasing enough TSH to raise my free T4.
He never gave a name to this but when I got back I've had a read up and there's a secondary condition called Isolated TSH deficiency, which is supposed to be quite rare, with only 60 patients diagnosed/reported since the 60's and can have it from birth.
I'm 33 now and I've never felt what you would call well and nobody has ever got to the bottom of it. Just hoping that this might be it.
I think what has helped me that has helped him is having print outs of my blood results from a number of years, it shows trends appearing which you wouldn't see from a 1 off blood test. So anyone reading this and struggling for a diagnosis, the more results you have the more they have to go on. My GP had only sent the Endo a few results, luckily I had printouts of a few years worth which I took to show him.