[paloma]

#1069999

Hey, curious! As to the use of drops and overnight gel, I don’t even have symptoms, but my eye doc said I HAVE to use them daily for the rest of my life. Daunting, huh? You will find lots of posts here about this issue. Search "red burning eyes", or TED. It sounds a lot like what you have going on. I do know that, if you smoke, you had better stop. It doubles your eye problems. You will hear from ski or nancy on Monday. They are very knowledgeable.
As for waiting for an appt with endo, Yeah, I know. I’ve waited two months.
I don’t think that you should be too concerned, if doc says ur ok. HOWEVER-IF YOU FEEL ILL, TRUST YOURSELF. Get another doc, if necessary.
Good luck with everything.

[curious]

#1019196

Hi,
Recently diagnosed with TED by an ophthalmologist who specializes in thyroid disorders (due to dry, red, puffy eyes since Nov/08), but so far blood tests and peri-orbital MRI have all come back "normal", so no confirmed diagnosis of Graves disease. However, have a bunch of other weird symptoms and wonder whether they might be related to Graves, primarily joint pain (mostly fingers and toes) and thinning hair.
Have been trying to read up on both Graves and TED, and have a few questions.

1. When the "cold phase" finally kicks in, do the eyes tend to lubricate themselves again, or will my eyes always be as dry as they are now? Will I have to use lubricating eyedrops for the rest of my life? (currently using preservative-free drops during the day and gel at night)

2. Is the expectation that I’ll develop Graves disease? (as in have TSH, T3, T4 and thyroid antibody levels actually indicate this in blood tests) Could I already have it and it just isn’t showing up in blood tests yet?

Thanks for any help, this has been an incredibly frustrating journey so far! Didn’t get a whole lot of information from the ophthalmologist since he didn’t view my case as serious (i.e. requiring immediate surgery), and my family doctor doesn’t seem particularly knowledgeable on thyroid disease (she’s getting me a referral to an endocrinologist, but it will likely be months before I get an appointment).

[Jake_George]

#1070000

TED, Being Thyroid Eye Disease is a seperate disease from Graves’ disease. But they are really close cousins. It is entirely possible to have the eye disease and not have Graves’ disease. So to answer your question you may never come down with Graves’ disease, just TED.

In most cases once a cold phase has ended, eye lubriccation is usually better. But, the antibodies that attack the eyes seem to have some effect of the tear production as well. You may still produce tears, but they may not be as effective as they were pre-TED.

I hope that helped a bit to answer your question.

[curious]

#1070001

Paloma and Jake,
Thanks so much for your replies. The ophthalmologist had told me that almost 20% of his patients with TED show up as "normal" in their blood tests, but then he also said that most go on to eventually develop thyroid disease. So I guess it’s ‘wait and see’ for now, and hope that the eye symptoms resolve themselves. Have to say that I feel kind of like a time bomb, wondering if every weird sign or symptom is an indication that I’m developing thyroid disease.

Does anyone know what the actual percentages are for people with TED in terms of how many have Graves, how many are hypo, how many are euthyroid, etc? Most of what I’ve read so far associates TED with Graves almost exclusively – in most cases I find that it’s still referred to as Graves’ eye disease, not thyroid eye disease. Wondering what all the different possibilities are in terms of what I’ll most likely develop.

Paloma, That’s a bummer about the eye drops, the preservative-free ones aren’t cheap and I blow through them pretty quickly, pumping them into my eyes all day long! Good luck at the endo.

[Ski]

#1070002

Sometimes, if a doctor writes a prescription for the eye drops/gel, you can pay just your insurance co-pay for them. If that’s less than the cost of the drops/gel, it might be worth pursuing. My understanding is that, in addition to the TED issues, just having an autoimmune disease can mess with the viscosity of your tears. Still, I’m one who had extremely little TED symptoms (but I did have some), and now I’m pretty much free of the drops. I need to use them when things are out of the norm ~ if I’m outdoors for a long time on a hot, windy day, or if it’s late and my eyes are tired ~ but I don’t have to use them as often as I did before. I am even able to wear my soft contact lenses for up to 12 hours before I feel the absolute need to get them out.

Thyroid Eye Disease is certainly most often associated with Graves’ Disease (that’s why many sites still use that name), but it has occurred along with other thyroid conditions, and that’s the reason for the new name. I haven’t heard any statistics on the different conditions and what percentage of patients have this one or that one, but I can tell you for a certain fact that most TED patients do NOT have the worst of the symptoms of TED.

Remember that TED, like Graves’ thyroid disease, is an autoimmune condition. Elevating your stress response creates an adrenaline rush, which triggers a "boost" in your immune system, and that can boost your TED symptoms. Do all you can to become a Zen master and you may find that you experience less of the symptoms. ” title=”Wink” /> We cannot live without stress, but we can learn to react less.

[curious]

#1070003

Thanks Ski, i’ll look into that, would be nice to not pay full price. Interesting that you say you’re now able to wear your contacts for a while – the ophthalmologist said that wearing my contacts was probably the best thing for me since the swelling of my lids causes my lashes to rub my eyes, so the contacts actually provide my eyes with some protection. When I first went to my optometrist in November with irritated eyes, she said my corneas were scratched (she eventually referred me to an ophthalmologist when there was no improvement, who then referred me to another ophthalmologist who specializes in thyroid disorders). I went back another time when my eyes were hurting and the optometrist actually pulled out some of the lashes that were scraping. Anyway, I’ve always worn my contacts from when I wake until when I go to bed, so I’m just keeping that up to avoid scratching up my corneas again.

Wondering if anyone out there developed TED first, well before ever being diagnosed with Graves? As mentioned, I have some other symptoms which lead me to think I’m on my way to developing Graves (or maybe some other thyroid disease) even though nothing shows up in blood tests yet. Would like to hear from anyone else whose first symptoms were TED prior to any Graves diagnosis.

[Ski]

#1070004

I know there were some people here who had TED before Graves’ thyroid disease ~ I hope they chime in and let you know how it went for them. In some ways, it’s a blessing to know that the thyroid disease MIGHT occur. That way you’re aware of what may come, and you’re in the habit of checking for it, so the likelihood is that you won’t be hyperthyroid for a long period of time before you begin to take care of it. That’s where the worst of the damage comes in ~ the period after we’ve gone hyper and before we’re correctly diagnosed and begin treatment.

I’m glad you find your contact lenses comfortable to spend the day in ~ not all TED patients have issues with lashes in their eyes, but it’s a real bonus that you can use your contacts to keep that problem at bay. Many find their contact lenses far too uncomfortable to bear.

The two biggest concerns for TED patients are serious corneal damage and compression of the optic nerve. Optic nerve compression is extremely rare, but the dryness in your eyes caused by the proptosis and the lack of properly moisturizing tears can lead to real problems with scratched corneas & corneal ulcers, and if it gets bad enough it can’t be fixed, so I’m happy you have a comfortable way to avoid that problem.

[paloma]

#1070005

Hi there! I did go to my new endo, it was great! He is wonderful. The best news is that he did a thorough exam and found that my eyes are dry and irritated because we DO live in the desert. (DUH!) The disease just made it a little worse, enough so that I noticed it!
He advised me to use eye drops anyway, why suffer?
I hope you get all the info you need about your eye problems. Get a really good doctor that will take the time to explain EVERYTHING.
AV

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