# My eyes are weepy



## livewell (Sep 1, 2015)

I've recently been diagnosed with Graves, and it is affecting my eyes. It started with pressure behind my eyes one morning about 7 weeks ago, and I was in bed for 5 days, nauseous and really fatigued, heart racing and pumping and very weak. My hyperthyroid symptoms are much better now, my weight is stabilizing after a 15 lb loss, but my eyes remain puffy and with pressure, a bit achy.

My eyes are weepy right now because I've just come from the ophthalmologist to get a report of the CT I had yesterday. Before he even said hello, he said that I have massive pressure in the muscles around my eyes, and my eyes are not responding by coming out, so I am in danger of losing my vision. He wants to do a partial orbital compression surgery on one eye at a time, cutting away some of the bone on the inner part of my eye to relieve the pressure. First I need to get my thyroid more stabilized, and I just started taking methimazole a few days ago, and must 5 ml once a day.

Now I'm really concerned, and scared. Am I in danger of suddenly losing my vision before he can do the surgery, or would it happen gradually? Has anybody been through this before and can give me any reassurance? I'm going back to see him in 2 weeks (at first he said a month then changed his mind).

Thanks in advance for any insight and advice!

My most recent labs:

T3: 4.75 (1.81-4.06)

T4: 1.92 (.82-1.77)

TSH: .016 (.450-4.5)

TSI: 383% (0-139)


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## Andros (Aug 26, 2009)

Yes; some have very small orbits (frontal) which forces the swelling to be inverted. Sadly, you must have this surgery to relieve the pressure.

You have a good ophthalmologist it sounds like.

God bless; keeping you in thought and prayer.


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## livewell (Sep 1, 2015)

Thank you Andros. From what I read it's called compressive orbital neuropathy, and if I start to have trouble seeing color I need to hightail it in. And here I thought it was a good thing that my eyes weren't protruding. Since I'm only 7 weeks in, I'm guessing I may need to have this more than once?


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## Lovlkn (Dec 20, 2009)

In theory - your eyes should calm down once your thyroid levels reduce while taking the methimazole


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## livewell (Sep 1, 2015)

I so hope you are right Lovlkn! I've heard that, and I've also heard that they are just two separate things, and that my eyes will do what they will do no matter what. I just hope things will hold steady at least until I get back to the ophthalmologist.


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## Scanders (Sep 9, 2015)

I have had severe TED and have had bilateral orbital decompression, and strabismus surgery to correct severe double vision. Lovlkn is right that in theory your eyes should calm down when your thyroid levels have stabilized. In the meantime, your eye doctor will be monitoring closely for changes that could threaten your sight, and will know when/if you need the surgery. They also could consider high dose steroids or orbital radiation to help with the swelling and symptoms. The symptoms usually return once the steroid is stopped, but it often can give symptom relief during this acute phase, and buy a little time before surgery. I was given glaucoma drops, too, to try to decrease my eye pressure.

And while I know the two diseases run separate courses in theory, I have to think that sometimes there may be some correlation. I've had an uptick in eye symptoms lately, after having stable thyroid hormone levels for a few months and my eyes feeling pretty well. A few weeks later I had my thyroid labs run, and they are slightly abnormal. Makes me wonder if it's a connection, or coincidence. Time will tell. (Maybe it's not the hormone levels themselves, but the resulting hormone levels from the activity of the antibodies?) I have to admit, I hate how much gray area there is around TED and Graves disease. (Sorry if I wasn't much help after all.)


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## Andros (Aug 26, 2009)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1772387/

Your ophthalmologist may wish to try you on a Pred Pak and also consider Kenalog injections. Radiation as well.

I feel for you, I really do.

Hugs,


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## livewell (Sep 1, 2015)

Scanders, I'm sorry that you've struggled with this. I appreciate your perspective. My eye issues and thyroid symptoms started on the same day, both with a bang! My thyroid symptoms have gotten increasingly better since then, even though I've only been on Methimazole for a week. I hate the gray area too, as it puts so many questions in my mind. My ophthalmologist said to me "the only thing I can predict about this is it's unpredictability". That was not encouraging.

Andros, thank you for the link. It's good to know there are options. I just wish there were better ones! It seems that steroids or radiation leading to surgery is it.

It's leading me to really want to dive into what precipitated this. When things settle down a bit I may see a naturopath to find out if something in my body chemistry can be improved. Gluten overload? Bad gut health? Vitamin deficiency? There has to be something. I continue to hope for the best outcome.

I wish you both the best of health and many blessings.


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## livewell (Sep 1, 2015)

Hi all, I just wanted to give an update.

I decided to get a second opinion for my eyes. I'm so glad I did! He said "first of all, get off the pred eye drops, it will cause more inflammation". By looking at my CT, he felt that I was nowhere near needing to rush into surgery, and that while I do have a good amount of pressure and inflammation, he would just watch me closely. Unlike doctor #1, he talked to me like I was human, explained things, answered all my questions. And so, he is my new doctor. No more weepy eyes, just hope!

My thyroid is feeling back to normal, I feel great! I've been on 5mg's of Methimazole a day for about a month now, labs tomorrow. Even my eyes are feeling somewhat better.

Diet changes...in addition to going gluten free and taking selenium, I started drinking a super nutritious drink called {edit} few weeks ago. It's all natural and it's main ingredient is moringa olifera, which contains tons of natural anti-inflammatories in addition to antioxidants and lots of vitamins and omegas. It's pricey, but I feel so much better!

I wish you all the best!


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## Scanders (Sep 9, 2015)

livewell,

So glad to hear you got the second opinion and some good news! And that your thyroid and eyes are feeling better in general!


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## ThyroidMan (Dec 26, 2015)

Wow glad to hear that lol. {edit}, is that in any grocory store? I do believe all auto immune diseases are related to the foods we eat! I did gluten free and it helped a ton! But I also ate a ton adn ton of peanut butter. Peanut butter is GF, yeah but it also contains a lot of Omega 6 fats. If omega 6's are out of ratio to omega 3's then it will increase inflamation. I just wanted to throw that out there. I found out about this, stopped eating too much peanut butter adn started to take fish oil . . . inflamation gone! Its crazy.

I posted this in my other thread. I have been gluten free for a few months for the most part. My eyes were feeling fine, so I decided to see how my body would react to gluten. I ate a ton of christmas cookies and within an hour or so my eyes swelled up a little, the next day my eyes felt like I had sand when I woke up! It's very real, diet is huge here. Pretty sure its not just gluten though, everyone is different. But gluten seems to be a thing for everyone with food sensitivities.

Also I take tumeric supplements. It helped the inflamation as well!


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## livewell (Sep 1, 2015)

ThyroidMan, so sorry I never answered you! I spent so much time researching and on this board when I was sick, then I recovered and haven't really looked back! I truly did recover, and after just about 6 months of dealing with Graves and eye issues, my doctor is saying remission and I feel great! He said that a TSI of almost 400 is really hard to come back from, but I've had no symptoms for months. So to answer your question, no it is not found in a grocery store, it's a direct marketing product (I usually stay away from these), but I felt desperate, and there are so many nutrients in it, omegas, anti-inflammatories, antioxidants, etc. it just seemed to whip my body back into shape! Either that or it's a miracle... or both.

Sorry, I didn't realize I wasn't allowed to use the product name. I guess perhaps you can PM me for the name if you're interested in trying it? I'm just so thankful, and I'm thankful for you all giving me support when I needed it.


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