r/ThyroidEyeDisease

▲ 62 r/ThyroidEyeDisease+1 crossposts

I wanted to share something that helped me when I had Graves’ thyroid eye disease because I don’t hear it discussed nearly as much as medication.

I got diagnosed with Graves Disease in 2011 and TED shortly thereafter. I wanted to share something that helped me when I had Graves’ thyroid eye disease because I don’t hear it discussed nearly as much as medication.

When my eyes started changing, my doctor had me take 200 micrograms (mcg) of selenium per day for about four to six months. My eyes eventually retracted back toward normal, and I personally had a very good outcome. Zero recurrence.

Years later, I learned that my doctor wasn’t just recommending some random supplement. Selenium has actually been studied in people with mild, active thyroid eye disease, and clinical guidelines recognize it as an option for certain patients.

That does NOT mean selenium will treat every case of TED or that anyone should substitute it for medication their doctor recommends. Moderate or severe TED can require steroids, biologic medications, surgery, or other treatment. Selenium can also be harmful if you take too much.

But if you have early or mild thyroid eye disease, it may be worth asking your endocrinologist or ophthalmologist if selenium is appropriate for your type and severity TED.

Also, the dose is in micrograms, not milligrams. I took 200 mcg/day.

I’m sharing this because I was surprised to learn how many people with TED have never even been told that selenium is an evidence-based option for some cases. My experience obviously isn’t proof that it will work for someone else, but it may be a conversation worth having with your doctor.

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u/Rich_Cap_2462 — 14 days ago
▲ 7 r/ThyroidEyeDisease+1 crossposts

Eyelids don’t close fully; Kaiser refuses to medicate/expedite

I saw two different ophthalmologist and let them know that my eyes are super swollen, and most importantly, my eyes don’t close all the way.
Im nearly blind in the morning, squinting due to photosensitivity and tearing for 1-2 hours upon waking.

Two opthalmologists refused to medicate me, told me to use eye drops, while my eye condition gets worse. I was told I was at the borderline of inactive/active thyroid eye disease before they choose to medicate and the ophthalmologist felt uncomfortable giving me medication. Instead I was referred me to a occuloplastic doctor for which there is months long waitlist.

I brought a complaint up to Kaiser‘s member services and member services director did not deem this an emergency to expedite an appointment. So I am left to suffer for months before an appointment with someone who might help.

I’m suffering a lot and I’m concerned that my cornea is or my eyes can get damaged from drying out and not being closed all the way especially overnight.

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u/mtvoltaire — 13 days ago

Endo and orbit specialist saying different things

Hello! I've been dealing with thyroid eye disease since January of this year and I'm currently 8 months pregnant so I haven't been able to do any interventions aside from selenium, eye drops and gel, and elevating my head while sleeping.

I don't have bulging eyes, but I have puffy eyelids and eyebags as well as worsening double vision. My thyroid levels are stable w/ low TRab numbers (3-4).

The orbit specialist I've been seeing says that I need to wait 6 months to one year of inactivity after birth before we start any steroids. However, all endos I've talked to have said that I can just take oral high dose steroids for the swelling as soon as I give birth.

Just confused at the conflicting advice and wanted to ask if anyone with similar symptoms has seen good results from high dose oral steroids? I'm leaning towards endo advice since I really want intervention as soon as possible since I'm really struggling with the eye swelling and my vision.

For addtl context, tepezza is not available where I am. Our only options are oral and IV steroids, steroid injections to the eye, and surgery.

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u/carlycat23 — 12 days ago