I have been told I do not have autoimmune encephalitis, after the spinal fluid tap results came back normal, but cryptogen epilepsy (= unknown causes as they cannot find any brain damage).
I was told by the neurologist now responsible for my treatment that a connection between my suppressed TSH (<0.01) and epilepsy cannot be excluded, and therefore it's important that I go back on thyroxine asap to normalise my TSH.
She is not going to let this go, that much is clear.
She also said that she finds it very strange that a GP is responsible for managing my thyroid condition, and that I should see an endocrinologist...
I know, it's my decision and my body and I have a right to refuse and all that, but this is getting on my nerves...I was hoping I'd be diagnosed with autoimmune encephalitis as it's a treatable condition and then I would not have to see the neurologist again, but I will need a specialist for the foreseeable future...I have been put on Lamotrigine which will have to be raised very slowly as there is a very rare, but potentially fatal side effect called Stevens-Johnson syndrom. It's going to take between three to four months just to reach the lowest maintenance dose.
So...if, to make life easier for myself and get the specialist off my back, I decided to go off NDT temporarily to normalise my TSH, what would be the best way to do it? Not take any thyroid medication at all for a week or so? Given the long half-life of T4, that would be acceptable, although I'd probably feel a bit more sluggish once the effects of T3 wore off.
But I have a feeling that, after having had a suppressed TSH for 15 years, it's not going to be that easy...would it speed things up if I first went off all thyroid meds, and then added T4 only after about a week? Or would it be better to go straight from NDT to T4 only? I assume it would take a little longer for the TSH to normalise, but I would be willing to do it just to get specialist off my back. She keeps telling me I need to avoid stress while we find the right treatment for my epilepsy, while adding to it by making a fuss about my TSH. She has never tested my FT3 levels. My FT4 levels are midrange but seem of no interest to her.
If anyone has ever normalised a suppressed TSH, for whatever reason, I'd love to hear about it.
Before switching to NDT, in 2011, I was seeing an open-minded GP who wanted a TSH between 0.05 and 0 in patients with Hashimoto's. The last time I had an in range TSH I was on 150 mcg of Euthyrox.