# Thyroid Eye Disease



## Kaylasly (Nov 14, 2009)

Has anyone here ever had it? Do you have Graves? I have been diagnosed with it. I am not sure if I have Graves or not. It is very painful and has given me a terrible headache and confusion. I feel like I can't think straight amongst the symptoms of my eyes hurting and terrible dryness. Please lete know if anyone has experienced this or know anyone that has. Thanks


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## Andros (Aug 26, 2009)

Kaylasly said:


> Has anyone here ever had it? Do you have Graves? I have been diagnosed with it. I am not sure if I have Graves or not. It is very painful and has given me a terrible headache and confusion. I feel like I can't think straight amongst the symptoms of my eyes hurting and terrible dryness. Please lete know if anyone has experienced this or know anyone that has. Thanks


Yes; of course. My medical history is in my siggie. Graves' is horrible. I almost died from a thyroid storm and my eyes were one of the worst cases ever seen. I lost vision in the left eye. I had to be on prednisone for a year and I had radiation to the eyes (2000 RADS 3 times a week for 6 weeks.), got drug induced Cushing's from the pred and ended up having orbital decompressions to both eyes and a whole bunch of other eye surgery.

Graves' if not properly treated is life-threatening and yes, you can lose your eyesight.

It was horrible; yes indeed. I opted to seek counseling from a psychologist as a result of being totally emotionaly as well as physically traumatized from Graves'.

Best money I ever spent. It was a very wise decision on my part and it helped me to heal my spirit as well as my body.

This is why I am here, this is why I care about people such as you. I "really" do and I don't want to happen to you, what happened to me.


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## Kaylasly (Nov 14, 2009)

Oh my gosh Andros! I did not know that! Supposedly right now my eyes are a mild case, but they sure hurt! It really scares me! I saw a picture of a girl that had the same thing happen as you did. She was so pretty before and then just blew up and her eyes went all crazy. It was horrible! Did that happen to you? Did it start slowly and then get gradually worse? Did you ever get back to your normal look? I am going to be tested for Graves tomorrow. I am just really messed up! I am also in the middle of menopause, so I am sure that is not helping! Thank you Andros for all your help, you are truly an angel!


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## Andros (Aug 26, 2009)

Kaylasly said:


> Oh my gosh Andros! I did not know that! Supposedly right now my eyes are a mild case, but they sure hurt! It really scares me! I saw a picture of a girl that had the same thing happen as you did. She was so pretty before and then just blew up and her eyes went all crazy. It was horrible! Did that happen to you? Did it start slowly and then get gradually worse? Did you ever get back to your normal look? I am going to be tested for Graves tomorrow. I am just really messed up! I am also in the middle of menopause, so I am sure that is not helping! Thank you Andros for all your help, you are truly an angel!


Yep; that is exactly what happened. I can see and my eyes are back in my head. I am grateful for those two things. I would not say I look the same; it took a terrible toll.

Menopause does not help but this happens w/ Graves' and as a matter of fact, menopause often triggers Graves'.


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## Kaylasly (Nov 14, 2009)

Andros, I am so scared! My eyes seem to change by the minute. One minute the right eye is bigger and one minute the left. I have pressure in the forehead above them. Every day I get a headache. How did it happen for you? Do you think this could level out once my medicine is optimized?Also, I have terrible bags and dark circles under them and when I press on them they feel puffy. The right one, which seems to have been bigger is now looking smaller. I am very scared!


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## Andros (Aug 26, 2009)

Kaylasly said:


> Andros, I am so scared! My eyes seem to change by the minute. One minute the right eye is bigger and one minute the left. I have pressure in the forehead above them. Every day I get a headache. How did it happen for you? Do you think this could level out once my medicine is optimized?Also, I have terrible bags and dark circles under them and when I press on them they feel puffy. The right one, which seems to have been bigger is now looking smaller. I am very scared!


You are seeing a Board Certified Ophthalmologist, right?? If not, I recommend it ASAP.

And yes, it is scary. I was scared out of my mind. That is why I say I was traumatized. Indeed, I was.

Sending giant bear hugs,


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## Kaylasly (Nov 14, 2009)

Yes, the doc I am seeing is a thyroid eye specialist. Apparently, people come from all over to see him. He is at UCSD medical center in San Diego. My eyes actually
look a little better but it is the pressure behind them that is driving me crazy. It feels like my head is going to blow up, it also makes me dizzy. It seems like they started to look better after I raised my thyroid dose. Do you think that once my numbers get into a more normal range it will maybe go away? I was reading something on Elaine somebodies web site that the most common form of Ted is when your thyroid numbers are off and when they stabilize in a normal range the symptoms resolve in a few weeks.
I will find out on Monday if I have Graves antibodies. The doc at UCSD suggested that we check TSI. I also had him check TrAb and some other ones. Is that right?


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## Kaylasly (Nov 14, 2009)

The other weird thing is that my eyes look different from
minute to minute, now I am obsessed with looking at them in the mirror. It is so weird! Did that happen to you?


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## Andros (Aug 26, 2009)

Kaylasly said:


> Yes, the doc I am seeing is a thyroid eye specialist. Apparently, people come from all over to see him. He is at UCSD medical center in San Diego. My eyes actually
> look a little better but it is the pressure behind them that is driving me crazy. It feels like my head is going to blow up, it also makes me dizzy. It seems like they started to look better after I raised my thyroid dose. Do you think that once my numbers get into a more normal range it will maybe go away? I was reading something on Elaine somebodies web site that the most common form of Ted is when your thyroid numbers are off and when they stabilize in a normal range the symptoms resolve in a few weeks.
> I will find out on Monday if I have Graves antibodies. The doc at UCSD suggested that we check TSI. I also had him check TrAb and some other ones. Is that right?


Oh, Trab is excellent!! Whoohoo!! Goody! Almost all patients with Graves'/Hyperthyroid have Trab. There is a correlation between TRAB and degree of thyrotoxicosis.
http://www.endocrine-abstracts.org/ea/0013/ea0013p81.htm

It sounds like you are in wonderful hands here. I am glad you shared w/ us where you are going, that puts my mind at ease.

Elaine Moore. Yes. She is brilliant.


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## Kaylasly (Nov 14, 2009)

I am the one that suggested trAb. I have been doing alot of research. My gp is wonderful and will test me for whatever I ask him to do. Problem is be doesn't know much about thyroid. I also had him test me for all the things that were on one of your links. The endo doesn't really have time for me. He also doesn't think anything is wrong. So, on Elaines web site it does say there. Are two different forms
of Ted, the first one is most common and that is the one that clears up when t3 and t4 are brought into normal range. The other is Autoimmune attack and could take up to 5 years to go away. Is this true? I am hoping it is the first. Also, did you get alot of pressure in your head from TED? And did your eyes look different minute by minute? I know I sound obsessed, but this has really messed up my life!


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## Andros (Aug 26, 2009)

Kaylasly said:


> I am the one that suggested trAb. I have been doing alot of research. My gp is wonderful and will test me for whatever I ask him to do. Problem is be doesn't know much about thyroid. I also had him test me for all the things that were on one of your links. The endo doesn't really have time for me. He also doesn't think anything is wrong. So, on Elaines web site it does say there. Are two different forms
> of Ted, the first one is most common and that is the one that clears up when t3 and t4 are brought into normal range. The other is Autoimmune attack and could take up to 5 years to go away. Is this true? I am hoping it is the first. Also, did you get alot of pressure in your head from TED? And did your eyes look different minute by minute? I know I sound obsessed, but this has really messed up my life!


Oh, yes...................the pressure was so severe in the orbits, I felt like my head was going to explode and yes, the eyes did seem to get better, then worse. This is called the rebound effect.

I hope and pray that yours is the first explanation also. Only gett you to the euthyroid state and time will tell.

And yes; it messes up your life. Big time!

Good for you; I am glad you are researching stuff. You go, girl!


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## Kaylasly (Nov 14, 2009)

It feels better when I lay down, was it the same for you? I get real
dizzy. Yes, my eyes look better but the pressure feels
worse. When they did the pressure on my eyes it was 13% in one and 14% in the other. Does that have anything to do with it? How long did this last for you?


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## Andros (Aug 26, 2009)

Kaylasly said:


> It feels better when I lay down, was it the same for you? I get real
> dizzy. Yes, my eyes look better but the pressure feels
> worse. When they did the pressure on my eyes it was 13% in one and 14% in the other. Does that have anything to do with it? How long did this last for you?


I had it for a long time; a very long time. For a couple of years. As mentioned, I was disregarded by the doctors as having anything medically wrong with me.

It was very very painful and very very scary.


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## Kaylasly (Nov 14, 2009)

Also, doc gave me steroid drops to put in my eyes, I have been afraid to use them, will this help with the pressure?


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## Kaylasly (Nov 14, 2009)

How did you get through this? I feel like I am going crazy. You said your eyes were better then got worse? What were the time periods on that? They got better for a short period of time? I am sorry for all the questions but it seems as though this is not real common. Nobody really knows about it.


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## Andros (Aug 26, 2009)

Kaylasly said:


> Also, doc gave me steroid drops to put in my eyes, I have been afraid to use them, will this help with the pressure?


Well; yes..............................by all means do what the ophthalmologist has told you to do. This relieves the pressure in the orbits.


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## Kaylasly (Nov 14, 2009)

Did you use the steroids? I am scared to use them. What do they do? Can they make it worse?


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## Andros (Aug 26, 2009)

Kaylasly said:


> Did you use the steroids? I am scared to use them. What do they do? Can they make it worse?


Yes; I used the steroid drops and they made my eyes better. They decrease the interoccular swelling within the orbits.

All I know is that they helped my eyes; they did not make them worse.


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## Kaylasly (Nov 14, 2009)

Andros, my eye is starting to look better. I raised my dosage of thyroid and thought it was too high so I ended up cutting the 30 mg in half. So instead of 120 I am taking 105.
I definately feel better. The only thing that is concerning is I still have pressure above the eyes and the muscles feel stained. I haven't gone out in the light yet, it seems to aggrivate it. Also, they are dry. Today I did not wake up with a headache. Does it sound like it is getting better?


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## Andros (Aug 26, 2009)

Kaylasly said:


> Andros, my eye is starting to look better. I raised my dosage of thyroid and thought it was too high so I ended up cutting the 30 mg in half. So instead of 120 I am taking 105.
> I definately feel better. The only thing that is concerning is I still have pressure above the eyes and the muscles feel stained. I haven't gone out in the light yet, it seems to aggrivate it. Also, they are dry. Today I did not wake up with a headache. Does it sound like it is getting better?


No.................it does nt sound like it is getting better. Especially if you have photophobia, the headache and the pressure.

Have you used the steroid drops the ophthalmologist Rx'd for you? I hope so.

Once again, if you have Graves', you need to talk to a doctor for I don't believe you should be on thyroxine replacement. I am not a doctor as you well know so we need some professional help here for you.


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## Kaylasly (Nov 14, 2009)

I still don't have test results back yet. I am not sure I understand, if I have Graves, why would my numbers be so low? When I was on lower doses of thyroid I was really hypo. If I go off it all together I will probably die. I am
so confused! My eyes do look better, I still have pressure but not
as bad, I am sensitive to bright light and today I saw blurry a little
bit when I looked far away in a store with bright lights. It is almost like my eyes are straining. The other weird thing is when I close my eyes and feel them
when they move under my eyelid they twitch really bad. They are still dry and burning right now.
This is so hard! I haven't used the eyedrops because I was seeing improvement and also read that after you finish them the symptoms can come back with a venegance. I know you can only take them for so long. The drops he gave me are called Fluorometholone 0.1%.


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## Andros (Aug 26, 2009)

Kaylasly said:


> I still don't have test results back yet. I am not sure I understand, if I have Graves, why would my numbers be so low? When I was on lower doses of thyroid I was really hypo. If I go off it all together I will probably die. I am
> so confused! My eyes do look better, I still have pressure but not
> as bad, I am sensitive to bright light and today I saw blurry a little
> bit when I looked far away in a store with bright lights. It is almost like my eyes are straining. The other weird thing is when I close my eyes and feel them
> ...


Well; I wish your test results would come in and I know you do too!

Those are the same drops I used.

And yes, if in the interim, the antibodies don't quit attacking the orbits and you finish the drops, it will come back with a venegance. Well; hang tough and use your own judgement. You are the owner of your body and no one knows it better than you do; that is for sure.


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## Thyroidmommy (Mar 25, 2011)

How are your eye problems?

I have hashimotos but my levels are good my free's are in top range and most of my symptoms have subsided. But the worst one is still bothering me my eyes...This has been going on for a long long time.

I don't have buldging eyes but I feel pressure behind my eyes the only way I can explain it is a migrane with out the headache but usually turns into a headache and half the time migranes. Sometimes blurry/dizzy feeling. It is horrible during the day and I don't like to drive at night because the lights bother me. But for the most part I feel ok at night. My vision has gotten horrible over the years..I am 29..I can't see the guide on the tv from the couch!

This is messing with my life! I feel like I cannot function normally because of it..

No insurance either... So just wondering how you have done with your problems and if they are similar to mine?


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