[khinsch]

#1060363

Hi!! I am 40 years old and was diagnosed with Graves’ disease in Jan 2013. I had a TT in March 2013. Everything was going very well until August 2013, when I noticed that my one eye was excessively teary and looked much bigger than the other eye. I went to a specialist at the Mayo Clinic after several trials with steriods that did nothing! I was diagnosed with Graves’ Opthalmopathy and was told that this is a self-resolving disease and I will need to wait it out for 2-3 years!! What? Well, I am now about 6 months in to this horrible disease and am pretty much at my wits end! I look at myself in the mirror and am horrified at my appearance! My eyes (both of them are now affected) bulge out so badly, I look like a freak show!! I used to be so pretty before my eye problem! Here is my question, is there anything that can treat my bulging eyes? Does this really go away? Will my eyes go back to the way they were? I am not sure the doctors understand what this does to a person’s self-esteem. I would LOVE to hear any suggestions that you may have to offer, I am willing to try just about anything in order to look and feel better! Thank you for your time!

[snelsen]

#1182196

WEll, there is a lot to read about varied experience on the forum, and the website itself.
For starters, I think it is imperative that you see a neuro-ophthalmogist, get a good exam as a baseline, so changes can be documented. Not sure which doctor you saw, but you need one who is very familiar with TED, and does the appropriate tests to monitor your vision. AND is empathic and understanding. They DO exist!
TED does have a progression, the active and then passive or inactive phase.
In the active phase, eyes are changing all the time. Surgical procedures are not recommended in the active phase, for the procedures are based on eye measurements.

HOWEVER, there is one exception, which is why you should have continuing care and observation. If the eye muscles get so big that they are pressing on your optic nerve, that is an emergent situation, for which and orbital decompression IS done in the active phase, for the optic nerve could be permanently damaged, resulting in permanent blindness.

Generally, steroids do help, but not always. As you may have learned, they have their pros and cons. Generally they are a temporary measure to relieve pressure on the optic nerve (called optic neuropathy.)

I’m running out the door right now, but will try to write more later today or tomorrow. You will find this site very helpful and valuable and supportive!
Shirley (Midwesterner from Iowa who lives in Seattle!_

[sunshineH20]

#1182197

Hi khinsch,
So sorry for what this is doing to you. I do not know much about TED, but I do have double vision and I also know about the self esteem, I just had all my teeth removed, and am having a hard time adjusting to dentures. My daughter thinks I look like a turtle. I was just diagnosed at the beginning of Feb. I had been suffering for 7 years. It has affected every part of my body. It truly sucks to have it.
But as you will learn from a lot of people here, things do get better. We all feel for you and what you are going through. We are here because we do know what it’s like. Hope this give you a little comfort.

[Kimberly]

#1182198

Hello and welcome! Shirley is a great resource on all things TED, and I see that she has already chimed in. The eye involvement with Graves’ typically goes through different phases. The period where symptoms are getting worse is referred to the “hot” or “active” phase. Once the “hot” phase is over, there is usually some improvement in symptoms…and then things eventually level out and stop changing. (This is referred to as the “cold” phase). If you reach the “cold” phase and still are having issues, there are surgical procedures that can be done to fix the bulging. (Or as Shirley noted, if the TED is affecting your vision, emergency surgery can be done right away.) The reason for the long waiting period is that doctors are reluctant to do one surgery, and then have to go in and do *another* surgery because the eyes have changed again. In the meantime, this forum is a great resource for support, and you might also be interested in visiting the GDATF’s YouTube channel, as there are quite a few videos posted on all different aspects of TED:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/user/GravesAndThyroid/videos

Wishing you all the best!

[khinsch]

#1182199

Thank you for the responses. Just knowing that there are other people in the world with the same issues is comforting. Also, I did not know about the hot/active phase and the cold phase. OR that surgery was an option in the future, so thanks for the great information.
I go back to see the specialist at Mayo next month and I am hoping for some news that I have pregressed to the cold stage! One last question, the Mayo Clinic is conducting a research study on Graves’ Opthalmopathy and I am wondering if I should join the study? Have any of you guys been in a research study regarding this disease?
Thanks and have a great day! And if you are in my neck of the woods, stay warm!

[Kimberly]

#1182200

Hello – The GDATF has actually been spreading the word on a current TED study. I do know that Mayo is participating in this one, although I don’t know if it’s the same study that your doc mentioned to you.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://graveseyediseasestudy.com/

I don’t recall off the top of my head if we have posters here who have participated in prior research studies, but hopefully, you will get some other responses.

I would actually be interested in the study in the link above, but one of the criteria is that the diagnosis of TED has to have taken place within the last few months, and my issues have been ongoing for several years.

If you decide to participate, please keep us posted!

[snelsen]

#1182201

Hi, I suggest you do a bit of reading before your appointment. Here’s a pretty good article:

http://www.patient.co.uk/doctor/thyroid-eye-disease

in the ideal world, your doc should take some time and explain the pathway of TED, some helpful things to do to be more comfortable. But judging from your first visit, it seems that sure did not happen at that time.

TED is NOT a self resolving disease, as he said.
And, though I am not a doctor, I am puzzled why steroids were prescribed for you. Unless, of course you had documented signs that may have indicated optic neuropathy. Yes, steroids are used, but not indiscriminately. Sometimes, they can be given for a bit of relief from the utter discomfort that is associated with severe TED. But steroids are very big guns, and should not be used lightly, that is for sure.

It really bothers me that you were told to sit it out for 2-3 years There are a ton of questions you will have, an there are measures to do to be more comfortable.
1. Non preservative eye drops
2. Sun glasses if you are light sensitive, also called photophobic, same thing.
3. If you eye/eyes do not close at night, you should tape them closed. I have found the BEST TAPE in the whole world is Mepitac. I hope this is not an issue for you.

YOu should also have been told that there are MANY things that can be done to help you with appearance, double vision and general comfort, when you get to the inactive, or cold phase. This gives much hope, it sure did for me.
Especially with double vision, which had a lot of.

YOu can

Your endocrinologist should be nice, understanding, knowledgeable and supportive. You deserve it. Many of them are all about diabetes, and not that interested in tEd, and some really don’t know much about it, except the page in Cecil’s medicine they read many years ago.

I am simply trying to say that with an endo, especially, sometimes you have to go to more than one to get the right fit for you. Grave’s is HARD, and TED is as hard or harder to deal with. So the eye doc needs to be sympathetic as well as knowledgeable.

YOU WILL get better, you may need surgery, and you have also been in the active phase for a while, so i imagine you will stabilize pretty soon!

I would ask a lot of questions about the study, and ask to have all the material, and take it home and read it. Ask for the cons as well as the pros. I am not against studies, but good to really know and understand what is planned and what they hope to find out. Basically, it is a better treatment of TED symptoms, I believe, from what I read. Ask if you still are a candidate since you have already had steroids several times. Just a thought.

Seattle was 56 degrees today! Ha. Iowa City was 7!
Shirley

[De]

#1182202

khinsch
Khinskch
Hi,
Are you referring to the mayo clinic in Minnesota ?
I am a patient there and return annually to see my Endo doctor. When I was there last summer I was having eye symptoms and was referred to ophthalmology department. I was told my symptoms were not thyroid related and diagnosed with bilateral cataracts. Cataract Surgery done June, 2013 and September,2013. October, 2013 started with eyes tearing, eyelids swelling, distorted vision on upward and sideways gaze. Put on steroid eye drops and again when I asked if this could be my thyroid I was told NO. Not satisfied with this doctor I went to a new doctor, same thing except changed eye drops to lotomax($150.00 per 5cc). Symptoms continuing but getting worse with fuzzy vision, tearing etc so we flew to Minneapolis on January 1, 2014 and I was seen at the thyroid eye clinic and put on high dose of prednisone and scheduled for emergency decompression surgery on January 24, because of optic nerve involvement. Needed more extensive decompression surgery on both eyes on February 7. It has been a very rough road but I feel if I had not been at the right place at the right time I would have lost my vision in my left eye. I am still not out of the woods and tapering off prednisone . You need to find the right doctors. At the thyroid rye clinic there is a team of doctors working together. I am switching to the University of Minnesota from mayo to an Endo doctor who specializes in graves. My Endo at mayo is into diabetes more than thyroid . It is still hard for me to believe that everything I have been through in the last few months is because of a little gland called the thyroid .

[snelsen]

#1182203

Hi De,
I am so very sorry of your rough experience. I encourage everyone to go to an ophthalmologist who KNOWS TED very well, and much preferable to find a neuro-opthalmologist. I am so sorry for this hell you have been through.

There is no excuse for “missing” optic neuropathy. The tests are simple to do, along with your changing vision. i cannot imagine THREE decompressions! One took care of my optic neuropathy, and I refused to have any more. I’ve had enough other crap, as you can see from my history.

Many ends are “into” diabetes. If anyone can possibly do it, they should find an endo who “Gets” Graves, and has plenty of compassion for this devilish autoimmune disease.

gotta say, thought that TED was more life changing in a bad way, than Graves’
Shirley

[De]

#1182204

Thanks Shirley
The swelling and progression was so rapid they feared my vision was in jeopardy . Yes, the doctors said this should have been easy to diagnose, my ophthalmologist plastic surgeon said he can diagnose someone in a grocery store. The U of M doctors just shook their heads. I passed the ishihara color test and two days later flunked it and ct scan showed so much swelling that I really didn’t have much choice. I hate the prednisone and hope I am able to get off it soon, the side effects are awful.
You definitely know what I am going through and I look forward to your posts.
DE

[gatorgirly]

#1182205

Shirley, just a note. I had no optic neuropathy but was prescribed oral prednisone which provided immediate relief for the pain and reduced the swelling enough that I could close my eyes. Of course, I still needed surgery but they helped a LOT with the severity of my TED. The side effects (weight gain, stretch marks, acne, moon face) were miserable but the relief I got was worth it. Barely, but worth it.

[Author]

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