Thyroid eye disease?

[Runner95]

I heard you could have thyroid eye disease and be hypothyroid. Does anyone have this? Are the symptoms different than Graves’ disease with thyroid eye disease?

[Buddy195 Administrator]

Hi Runner 95,

I have Graves antibodies but am currently underactive and taking Levothyroxine. My endocrinologist says I’m showing symptoms of mild TED, which was confirmed this week by an ophthalmologist. Interesting that latter said both Graves and Hashimoto can cause similar symptoms. For me one eye slightly larger than other, eye lid lag and retraction and upper eye lid edema. Ophthalmologist advised that it will most likely burn itself out 🤞Hope so!

[Yorkie2019 in reply to Buddy195]

Hi Buddy

I was wondering how you have got on with your mild symptoms of TED? I also have Graves and TED as well. Surgery has been mentioned by the ophthalmologist so trying to find others who have had similar experiences. Thank you

[Buddy195 Administrator in reply to Yorkie2019]

Hello Yorkie2019,

Just checking you have Graves & TED, as I thought (like me)you are hypothyroid. I’ve definitely got Hashimotos & TED, although my Endo still believes I first had Graves (no antibodies tests to confirm this however).

Recently my eyes seem to be more aligned. Before Christmas I had one eye brow noticeably higher than the other & had discomfort to both eyes, with sporadic blurriness. With me, symptoms seem to ebb & flow. Dryness fluctuates, but lutein & zeazanthin (Eye Complex 7- Amazon) seems to help, plus lots of preservative free eye drops. I’m still taking 200mg selenium daily.

My biggest battle is light sensitivity, despite wearing reactive lenses. I can’t drive far at night, as I find the glare from head lights too painful. At work, I have to dim the lights in my classroom and have a large pc screen with reduced glare. Occupational Health have been very supportive. I also got good advice from TEDct (who gave me lots of support in the phone). Have you contacted them?

I’m seeing my Endo next month & he will refer me back to ophthalmologist if needed. As my vision is ok with glasses & my pain not severe, I’ve not needed steroids or surgery to date. I’m currently taking 100mcg Levo, but may trial an addition of T3.

What are your TED symptoms and what treatment have you been offered? How are you feeling?

Best wishes to you 👍😊

[Yorkie2019 in reply to Buddy195]

Hi Buddy, thank you for your reply. I have Graves and my thyroid has been overactive. Sorry from reading back I’ve see you said you were hypo. I’m still learning how the thyroid affects eye with different diseases. I have dryness like you and seems to come and go in bouts with some days being worse than others. I have eye drops on prescription at the moment but possibly will work out cheaper to buy via amazon. I’m on carbmizole and eyes are stable which is a positive. I’ve been offered eyelid surgery and have my next appointment with the ophthalmologist in March

[Runner95 in reply to Buddy195]

Hello, I do not have Graves’ disease. I have Primary Adrenal Insufficiency and Hashimotos hypothyroidism. My eyes are really dry and sore but I haven’t been diagnosed with TED. Per my endocrinologist and eye ophthalmologist, I have been using lacrilube eye ointment nightly to help with this and in the morning when I wake up I use Refresh tears eye drops. This is helping a good amount. What has your Dr told you to do?

[Buddy195 Administrator in reply to Runner95]

Hi there,

We are in the same boat with Hashimotos & eye problems!

I use HycoSan extra drops all the time / Or VisuXL (ophthalmologist recommendation). I took the lutein & zeazanthin advice from another forum member with TED (Ling- look up her posts for more information). I would definitely recommend those ( I buy from Amazon- eye complex 7). Are you taking selenium? I’ve also been trialling black seed oil for eye dryness- lots of people find these help.

My eyes are the most puffy on a morning. Do you suffer from any puffiness? My endocrinologist prescribed a diuretic furosemide which I take when they are very inflamed.

My biggest relief is that my eyes don’t seem different sizes and are much more aligned than they were. One was noticeably larger but this has settled & really hoping it stays that way!

Keep in touch- it’s great to know someone with similar issues!