# Thyroid EYE disease???



## charliehorse (Oct 29, 2011)

My fight with this dang thyroid continues. It was first found in september 2011 and still is not medicated. i was .006 september and .07 in late october. i switched endos bc i lost confidence in mine when she wrote me off as being crazy and saying my symptoms shouldn't be as bad as i was making them to be. she also FAILED to notice i was allergic to a class of drugs that she was giving me 3times daily..which did make me flip out. i changed endos and i found a wonderful doc that is 2 hours away. i saw her on 12/29/11 and she was incredible! i had my labs drawn 2x in 3 weeks in december and the first was 4.33 and the second was 4.5 or something like that. so my thyriod is doing funny stuff. still not sure what its doing she said she couldn't medicate me..even though she didn't like my levels that high. she said my lab didn't show any signs of autoimmune issues other than the antithyroglobulin levels being over 600. so here i am, late february and still suffering horrible insomnia, dry eyes, anxiety, irritability, tachycardia (which even the beta blockers couldnt control), stomach issues and joint pains. my neck in the front now hurts daily. 
i just left the eye doctor bc i cant stand these dry eyes anymore and he told me that i have thryoid eye disease which is an autoimmune disease. he gave me 2 eye scripts and said 2 try them for 2 months..and told me to try other things. so i wonder, WHAT THE HECK IS WRONG WITH MY THRYOID???lol..why was it last hypo (or atleast in december 2x) and it was before that hyper? the thyroid uptake was modestly increased and the entire thyroid was affected....no particular hot spots to indicate thyroiditis. I DON'T KNOW WHAT TO DO...


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## lainey (Aug 26, 2010)

Thyroid eye disease is caused by TSI--thyroid stimulating immunoglobin. Were you ever tested for this? Many times doctors will only test for this if your levels are hyper (low TSH) but will test for thyroid peroxidase and thyroglobin antibodies.

You should not have any of these antibodies whereas sometimes the other 2 will occur in the normal population. They are likely also behind your rising and falling thyroid levels, and your increased uptake on the RAIU.

You need to revisit the endo with your diagnosis from the ophthalmologist and ask for further testing.


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## charliehorse (Oct 29, 2011)

thanks lainey! i had my levels tested on 10-17-11 and thyrotropin receptor ab was .51, tsi was 35, tpo was 7, antithyroglobulin was 654, tsh was .07, free t4 was .83, free t3 was 2.8. that was the 1 and only time the antibodies were checked. i left the endo a message about what the eye doctor said. my eyes have been like this for years but worse in the last year. both endos ive seen say they arent worried about my anitbodies and that nothing shows graves or hashimotos as far as the lab work. i just know that i have all these symtpoms of an autoimmune disease and so far have had no treatment for anything. i know it might take sometime bc they are confused about what its doing. i am too.


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## lainey (Aug 26, 2010)

They often don't know how to treat you when you have all of the antibodies and swinging levels. There is a folder here for people in that situation--technically it is thyrotoxicosis. The antibodies alternately block and stimulate the thyroid, resulting in big changes in your levels depending on which one happens to be dominant at the moment.

Doctors often discount the presence of TSI if it is not over the range. TED is a diagnostic criterion for Graves disease. Treating your eyes will be difficult if your thyroid itself is not under control.

Treating a patient with all of the antibodies is very complicated, as they often quickly become hyper on thyroid replacement meds, and may not have their levels swing low enough to warrant anti thyroid medication. Ablating the thyroid allows the patient to stabilize on thyroid replacement medication, but this is usually not done unless the levels make it necessarily by swinging clearly hyperthyroid.

Not all endos work well with thyroid patients, and they also may not have good experience with TED. The eye disease can be unpredictable and have some serious consequences, so I would suggest you start looking for a doctor who has good experience guiding patients through this.


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## charliehorse (Oct 29, 2011)

thanks lainey. when i looked up the TED and saw all the graves symptoms it was amazing that i had nearly everyone of them..except bulging eyes and reddish skin on the feet. i left a message with my endo to discuss what the eye doctor said and that it is a complication of graves.


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## lainey (Aug 26, 2010)

Keep us posted. Hopefully you will get a positive response from the doc.


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## Andros (Aug 26, 2009)

charliehorse said:


> My fight with this dang thyroid continues. It was first found in september 2011 and still is not medicated. i was .006 september and .07 in late october. i switched endos bc i lost confidence in mine when she wrote me off as being crazy and saying my symptoms shouldn't be as bad as i was making them to be. she also FAILED to notice i was allergic to a class of drugs that she was giving me 3times daily..which did make me flip out. i changed endos and i found a wonderful doc that is 2 hours away. i saw her on 12/29/11 and she was incredible! i had my labs drawn 2x in 3 weeks in december and the first was 4.33 and the second was 4.5 or something like that. so my thyriod is doing funny stuff. still not sure what its doing she said she couldn't medicate me..even though she didn't like my levels that high. she said my lab didn't show any signs of autoimmune issues other than the antithyroglobulin levels being over 600. so here i am, late february and still suffering horrible insomnia, dry eyes, anxiety, irritability, tachycardia (which even the beta blockers couldnt control), stomach issues and joint pains. my neck in the front now hurts daily.
> i just left the eye doctor bc i cant stand these dry eyes anymore and he told me that i have thryoid eye disease which is an autoimmune disease. he gave me 2 eye scripts and said 2 try them for 2 months..and told me to try other things. so i wonder, WHAT THE HECK IS WRONG WITH MY THRYOID???lol..why was it last hypo (or atleast in december 2x) and it was before that hyper? the thyroid uptake was modestly increased and the entire thyroid was affected....no particular hot spots to indicate thyroiditis. I DON'T KNOW WHAT TO DO...


With thyroglobulin that high, cancer needs to be considered. Also, Ophthalmologist is the one that turned me on to my most wonderful doctor. He said, "I can't treat your eyes if we can't find someone to get the thyroid under control."

So, ask your Ophthalmologist for a referral.

The tests below are "highly" recommended.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/


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## bcoceo85 (Mar 14, 2011)

Im on Synthroid for Thyroid disease. I had my thyroid removed last April. Im still having a hard time gettin my meds adjusted to level out my thyroid. Ive been having issues with my eyes also. They are not bulgin or anything like that. I have pale yellow streaks across my eyes. Most times they dont effect me, but there are times when my vision is blurred and the sun really hurts my eyes. Ive been to the eye doc and he treated me with drops for allergies and then determined it had to be tied to the thyroid issue. They said that once my levels get evened out that this should clear up. I sure hope so


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## Andros (Aug 26, 2009)

bcoceo85 said:


> Im on Synthroid for Thyroid disease. I had my thyroid removed last April. Im still having a hard time gettin my meds adjusted to level out my thyroid. Ive been having issues with my eyes also. They are not bulgin or anything like that. I have pale yellow streaks across my eyes. Most times they dont effect me, but there are times when my vision is blurred and the sun really hurts my eyes. Ive been to the eye doc and he treated me with drops for allergies and then determined it had to be tied to the thyroid issue. They said that once my levels get evened out that this should clear up. I sure hope so


It depends on the frontal orbital boney structure as to whether the globes of the eyes press forward (anterior.) If that is small, the globes will take the path of least resistance which would be posterior. This can be a very not so good thing.

If you have not seen a Board Certified Ophthalmologist; I strongly recommend that you do so. There is much to be done to stave off permanent damage to your eyes.


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## bcoceo85 (Mar 14, 2011)

Is it common to have the yellow lines across the eyes with thyroid issues?


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## Andros (Aug 26, 2009)

bcoceo85 said:


> Is it common to have the yellow lines across the eyes with thyroid issues?


It could be swollen sclera or orbital fat. Not sure what you mean about lines. Hepatitis could be a consideration i.e. jaundice.

Grave's patients often have a high level of Carotene as well for the body is rendered unable to process it. (Vitamin A)

Don't know if you have Grave's or not but I do believe the Carotene applies to hypo and hyper.

Have you seen an Ophthalmologist?


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## cmaxwell1 (Feb 24, 2012)

can someone please explain how this eye disease feels? ive had one eye feeling uncomfortable for years, i just feel like I have less feeling in it, it feels slightly bulgy and gets dry. Although my Tsh levels are always within range I do have a large mass on my right lobe and wondered if it could affect it


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## Andros (Aug 26, 2009)

cmaxwell1 said:


> can someone please explain how this eye disease feels? ive had one eye feeling uncomfortable for years, i just feel like I have less feeling in it, it feels slightly bulgy and gets dry. Although my Tsh levels are always within range I do have a large mass on my right lobe and wondered if it could affect it


It does sound like you would benefit from a visit to a Board Certified Ophthalmologist. It is good to get a "baseline" at the very least of it so any movement or change of the globes can be duly noted.

Our eyes are precious.


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