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Saw optht yesterday – making following notes here if no one minds:
- (Took 1 and a half hours to be seen. That sucked. Near the end, I even announced to the waiting room “THIS IS WHY WE ARE CALLED PAITENTS”. I must have been pretty restless to do that. Got a few laughs though.)
- Eye surface appears OK (had expressed concern after lower plugs put in/rubbing etc)
- He was aware of Cyclosporine drop from Moorfields – he indicated the carrier was very irritating and wouldn’t be suitable
- He did offer to obtain some Restasis when he goes to the US later this year though
- I asked for upper plugs. Got put in (0.7mm) – had great difficulty putting left one in (which really sucked for the 4 minutes or so he had to try to insert it)
- He noticed something on my lower right lid again (a ridge), and thought I’d been rubbing. I don’t think I have – must follow up on this next time.
- Nurse initially came out with incaniculcar plugs. He indicated these “could get them sued” as they’d caused lots of problems/infections etc.
- Indicated I’d been diagnosed with hypothyroidism. Expressed significant surprise at my TSH result (30) – VERY high (I think this is the highest he’d ever seen)
- He said I should have an anti Thyroid antibody test done. I said I’d already had this done (he asked who had prompted this test and I indicated I had off my own back – I think that made me look like I knew a little about the subject and that I was proactive). No reference range but he agreed my result titre: 1/102400 would be off any range.
- At the point, he said I had Thyroid Eye Disease. I asked if that was more associated with hyper rather than hypo, but he said it can happen with both (and euthryoid). He said presence of anti Thyroid antibodies shows this.
- He said that TED was the same as Graves. I need to confirm this.
- I asked what the diagnostic criteria for diagnosing me with this was. He said he hadn’t diagnosed me with it as such but that it was indicated.
- This seemed to tie in with the extra ocular muscle aching I sometimes get.
- Don’t smoke (I don’t), do I have discolouration of shins (no).
- Oral steroid possible future treatment.
- MRI of orbits not really needed at this stage
- Prescribed Interferon 3 times per day (I do not have stomach ulcers).
- I indicated I was having test for Sjorgen’s done (he confirmed Ro and La needed and I indicated that was being tested).
- Looked at colour test book with both eyes individually – all OK on that front (guess this is to check optic nerve not compressed)
- He tested lid lag signs (unclear what the result was for that)
- He measured my eye width and signs of proptosis (after I mentioned proptosis to him). I think it was OK at 13 each eye.
So far really surprised how wet my eyes are with 4 plugs. Still unsure how much it will help as still have soreness and discomfort – I guess I need time for everything to settle down to really know. If I really do have TED, then my discomfort/problems may not be fixed even if I’m not so dry. Plus I’m concerned about any potential cesspool effect.
NEXT TIME
Restasis in USA?
Do I have lid lag sign?
Right lower lid ridge?
Perhaps try to get anti Thyroid antibody done again, either for comparison or result with reference range
Maybe try to get MRI done?
Recheck proptosis against baseline.
Check IOP which wasn’t done this time.
- (Took 1 and a half hours to be seen. That sucked. Near the end, I even announced to the waiting room “THIS IS WHY WE ARE CALLED PAITENTS”. I must have been pretty restless to do that. Got a few laughs though.)
- Eye surface appears OK (had expressed concern after lower plugs put in/rubbing etc)
- He was aware of Cyclosporine drop from Moorfields – he indicated the carrier was very irritating and wouldn’t be suitable
- He did offer to obtain some Restasis when he goes to the US later this year though
- I asked for upper plugs. Got put in (0.7mm) – had great difficulty putting left one in (which really sucked for the 4 minutes or so he had to try to insert it)
- He noticed something on my lower right lid again (a ridge), and thought I’d been rubbing. I don’t think I have – must follow up on this next time.
- Nurse initially came out with incaniculcar plugs. He indicated these “could get them sued” as they’d caused lots of problems/infections etc.
- Indicated I’d been diagnosed with hypothyroidism. Expressed significant surprise at my TSH result (30) – VERY high (I think this is the highest he’d ever seen)
- He said I should have an anti Thyroid antibody test done. I said I’d already had this done (he asked who had prompted this test and I indicated I had off my own back – I think that made me look like I knew a little about the subject and that I was proactive). No reference range but he agreed my result titre: 1/102400 would be off any range.
- At the point, he said I had Thyroid Eye Disease. I asked if that was more associated with hyper rather than hypo, but he said it can happen with both (and euthryoid). He said presence of anti Thyroid antibodies shows this.
- He said that TED was the same as Graves. I need to confirm this.
- I asked what the diagnostic criteria for diagnosing me with this was. He said he hadn’t diagnosed me with it as such but that it was indicated.
- This seemed to tie in with the extra ocular muscle aching I sometimes get.
- Don’t smoke (I don’t), do I have discolouration of shins (no).
- Oral steroid possible future treatment.
- MRI of orbits not really needed at this stage
- Prescribed Interferon 3 times per day (I do not have stomach ulcers).
- I indicated I was having test for Sjorgen’s done (he confirmed Ro and La needed and I indicated that was being tested).
- Looked at colour test book with both eyes individually – all OK on that front (guess this is to check optic nerve not compressed)
- He tested lid lag signs (unclear what the result was for that)
- He measured my eye width and signs of proptosis (after I mentioned proptosis to him). I think it was OK at 13 each eye.
So far really surprised how wet my eyes are with 4 plugs. Still unsure how much it will help as still have soreness and discomfort – I guess I need time for everything to settle down to really know. If I really do have TED, then my discomfort/problems may not be fixed even if I’m not so dry. Plus I’m concerned about any potential cesspool effect.
NEXT TIME
Restasis in USA?
Do I have lid lag sign?
Right lower lid ridge?
Perhaps try to get anti Thyroid antibody done again, either for comparison or result with reference range
Maybe try to get MRI done?
Recheck proptosis against baseline.
Check IOP which wasn’t done this time.
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