TED - first appointment?

[Dovedale]

Hello, I have Graves Disease and my Endo has now referred me to an eye consultant to the hospital with TED. Anyone been down this route - what sort of thing will happen at the appointment and any thoughts re what treatment might be? Also, should I take someone with me - thinking in case they put drops etc in that means I can't safely drive home. Any insights really welcome as scared here...

[Fruitandnutcase]

I see no one has replied yet but there are lots of people out there who have or have had TED so I’m sure someone will come along soon. You could also put TED into the search box and I’m sure it will throw up older pists.

If you are a smoker stop ASAP. Smoking is very bad for TED. In the meantime although I didn’t have full TED my eyes were affected - blurred vision, achy muscles, a weird sort of vertical double vision when I looked at lettering. I found constantly putting in dry eye drops made a huge difference. I used preservative free eye drops, your optician will suggest what to use. I also had a microwaveable heat bag who’s felt good although squeezing a face cloth out under hot water felt just as good for me - the effect just didn’t last as long.

Well done you for even thinking about needing someone to drive you home - I’m impressed! You could always call the eye dept up and ask whether you will have drops and need someone to drive you

Just found this

healthunlocked.com/search/p...

[Dovedale in reply to Fruitandnutcase]

Thank you for your feedback - that is helpful

[Buddy195 Administrator]

Hi Dovetale,

I also have a recent diagnosis of TED.

Yes, you will need a driver to your appointment with the ophthalmologist, as your vision will be blurry after the dilation test. I had a scan of the back of my eye to check the health of the optic nerve. I also had colour vision and double vision checks. Measurements are taken of eye alignment and any protrusion.

Are you experiencing any double vision, blurred vision or pain? Have your eyes changed in appearance?

Do post all your questions in the forum and you will be supported by other members. Ling and others have provided such useful advice, support and reassurance for me and although I’m only at the beginning of my Thyroid and TED journey, I’m willing to share my experiences if this helps.

I’ve found wearing reactolite glasses at all times really helps with light sensitivity and I take 200mg selenium daily (Endo recommendation). The ophthalmologist recommended high quality drops- I currently use VisuXL twice a day and HycoSan Extra as needed in between. Ling suggested I take Lutein and zeaxanthin- I’ve been supplementing for the past 2 weeks with ‘Time Eye Complex 7’ and my eyes are not so severely dry, so would also recommend this.

I did join TED UK for further information, but although they have detailed explanations of medical procedures, their publications on do not appear to be as up to date as Thyroid UK, so I’ve learned more from this forum about the condition.

Remember this forum is here to help you, so always ask questions and post any test results (with ranges).

[Dovedale in reply to Buddy195]

Thank you Buddy, that is really helpful. All the best with your health

[Buddy195 Administrator in reply to Dovedale]

Apologies for mis spellings and getting your name wrong Dovedale....at least I can blame it on the TED! 🤣

[SusanKidd]

Hi,

I was diagnosed with thyroid eye disease very soon after a diagnosis of autoimmune hyperthyrotoxicosis.

I had been developing proptosis which is a bulging out of the eyeball. This restricts the field of vision - looking up/down, and looking left/right

My eyes were also dry and gritty and always looking "red". One of the other symptoms was having episodes of seeing dazzling halos of light which could last for up to 40 minutes and temporarily interfered with overall vision. Another symptom was feeling as if my eyes were on stalks and "stuck".

I was referred to an eye hospital had to which first did a basic eye test followed by various field tests and a colour test. Then the consultant was seen who did a dilation test which means a small amount of anaesthetic is applied. There is a puffer test to measure the eye pressure, The consultant then talks about the results and what to do next.

I was prescribed "dry eye" drops to take whenever I needed them (several times a day), to take eye pressure tablets (to stop glaucoma happening), to take the supplement selenium, and most important - to stop smoking. Also advised to ALWAYS wear sunglasses when sunny.

Because I was newly diagnosed and just started with carbimazole for the hyper symptoms, I was lastly told I would be monitored every 3 to 6 months.

That monitoring is still going on over 10 years later although it is yearly now. If you see the consultant and have the dilation test then you cannot drive, so will need someone to help you home. I did have a very serious episode where my eyes were so bad I was sent for weekly transfusions of prednisolone for 3 months. My hyperthyrotoxicosis changed to hypo shortly after and my eyes have improved. The best change I made was stopping smoking. I'm still on eye pressure drops, dry eye drops and selenium.

It may sound like a long journey but do not get worried or anxious. Things can improve with positive steps being taken and that first step is going to the eye hospital.

[Dovedale in reply to SusanKidd]

Thank you so much SusanKidd - that is really helpful information. I do hope you recover fully soon