At long last, I've been to St Paul's eye hospital in Liverpool for my TED appointment. I saw a lovely doctor - Dr Lloyd, she was so much better than my endo at understanding hypothyroidism.
She confirmed that I do have TED, although my symptoms have started to subside a little and I thought she would say it was in my head! She was lovely, she explained that as I've had symptoms for 18 months, I'm probably in the final stages of the disease as it tends to "burn out" after 18 months to 2 years. She did all the usual eye checks and said she could see the difference in my eyes.
She said my endo had said I was under-active and that I had gone over-active (I haven't), I have a pituitary issue which means that it isn't producing TSH which his colleague diagnosed and he has conveniently ignored. I explained this and she gently said, you can have TED when you're under-active too! Which I already knew but my endo didn't.
I saw a specialist (registrar) in Wigan last summer when in the full throes of TED and was dismissed with "everything will settle down when you're on the right thyroid dose" meaning, you're over-medicated.
Anyway, I digress. Today's specialist did all the usual eye checks and that as my vision is OK, said that she will see me again in 3-4 months to see how the disease is progressing.
She suggested selenium, which I'm already taking (a NHS specialist suggested selenium)! I told her I'm already on it and that I also take Omega 7 for it too which has helped with the runny, red and gritty eyes. I've also started wearing distance specs for driving and have had these with transition lenses too as I'm extremely light-sensitive and struggle with night driving - she said all these symptoms are typical TED. She said that I was doing all the right things!
She also said that almost everyone has no further symptoms once the "burn out" phase is over and is hopeful that this will happen to me. However, if this does not happen there are possible surgical interventions or medical interventions. Since my eye bulging is reducing (I no longer feel my eyelashes brushing against my spectacles) there is no action at the moment as my eyes are still in the TED ""active" stage.
I have a "lazy" left eyelid and my right eye is still bulging slightly (but is much better than it was) she said sometimes the eyes do not return to normal and that if I want them to, they could do a minor procedure to even my eyes up when the "active" phase is over. She's confident my eyes are OK, but said she might scan them at my next appointment just to be sure.
I have to say, that apart from Dr Peatfield, this is the first doctor that I have felt has actually understood hypothyroidism. I had already heavily researched TED whilst waiting for this appointment and this lovely doctor just repeated everything that I had learned. I now live in hope that there are some doctors in the NHS that do understand hypothyroidism.
If you are in the North West and suffering from TED, ask for a referral to St Pauls!