I went for my follow-up to the opthalmologist after being referred in October by the optician who was concerned about the sudden deterioration in my right eye.
A quick recap:
I did ask my GP last time I saw him, (You know, the time when I admitted I was on T3) if he had received a letter from the opthalmlogist, and he said No, but then he looked at his best pal the computer screen and said "Oh, yes, there it is, but I never read it".
Gee, thanks, doc.
Then I said, I have been having trouble with my eyes, being very dry and hurting, the optician had confirmed my right eye had got MUCH worse than the left, and I had suspected that my Graves' had flared up again.
"Graves'? How can Graves come back, you have no thyroid."
I said, I had Graves from the age of 13 and it caused my overactive thyroid, and I was concerned the antibodies have increased, and are attacking my eyes. He told me: "What antibodies are you talking about? Graves' is just an old-fashioned name for an overactive thyroid"
I said 'Thyroid Stimulating Antibodies. TSI, which cause an overactive thyroid and also Eye disease"
Doctor: "Rubbish! If you are having trouble with your eyes, it's because you are taking T3, that's what's causing the problem. You're overdosing yourself and it is affecting your eyes"
ME: "So, why did Mr ***** test me for antibodies?"
Doctor: "I don't know. Does HE know you are on T3?"
ME: "Yes, he knows I am taking Liothyronine, in fact he said some people do better on it."
Well, I had a few questions to ask when I saw Mr ***** today.
First, can taking T3 cause Thyroid Eye Disease? "Definitely not! Looking at your history, it was a strong possibility it was going to happen."
Second, Do I have Graves' antibodies in my blood? "Oh, yes, they are definitely raised. That's the reason that your whole system is messed up despite taking thyroid medication. You need to ignore the TSH and go by how you feel."
So, dear Doctor, I have been right all along. TSH is utterly useless when you have Graves'. And I DO have Graves', despite your simplistic view of the thyroid.
I now have eye drops to use three times a day to ease the dryness and the pain.
Oh, and he said that there is new evidence that Selenium can prevent further deterioration in my eyes, but unfortunately the GP will refuse to prescribe it and I will have to buy it myself.
So what's new, pussycat?