[vickirn June 5, 2012 at 7:33 am Post count: 1]

#1059115

Hi, I am new to this forum and I have a question. I have been diagnosed with Graves disease for about 18 months now. Last May the disease started affecting my eyes. Now my left eye is deviated down and toward my nose because of severely enlarged muscles, I do not have the protruding eyes, common with graves disease. My question is, yesterday I went to an ophthalmologist specializing in plastic surgery (referred there by another eye doc who would do my eye muscle surgery) to see if he thought I needed orbital decompression. My thyroid levels are normal at this time, without medications, because my disease has gone into remission per my endocrinologist. This eye surgeon insisted that I have my thyroid removed before he would even touch my eyes because according to him “my thyroid was attacking my eye muscles”. This is a practicing doctor at Bascom Palmer Eye Institute in Miami, Florida, associated with Miami University. Thoughts on this???

[KimberlyOnline Facilitator June 5, 2012 at 10:56 am Post count: 4294]

#1172277

Hello and welcome! I’m a fellow Graves’ patient, not a doctor…but if I was able to maintain normal thyroid levels without meds, I would certainly seek a second (or third) opinion before agreeing to have my thyroid surgically removed!

Thyroid involvement and eye involvement most commonly occur together, but that is *not* always the case. In fact, a presenter at our 2010 conference noted that about 15% of patients get the eye issues first, without having any thyroid problems at all!

The current thinking is that there is a specific protein (the thyroid stimulating hormone receptor) that comes under attack in Graves’ disease. This specific protein is found in cells behind the eyes as well as in the thyroid gland.

It’s generally believed that being either hypER or hypO can make TED worse, but I have not seen any studies showing a benefit to removing the thyroid gland in a patient who currently has normal levels. If your doc has new information on this, I would certainly be interested in taking a look.

[jaqeinquotation June 5, 2012 at 2:20 pm Post count: 131]

#1172278

Hi my name is jaQe and I too am new to this. I was diagnosed in about June of 2011. I have the bulging swollen ugly eyes and they have been this way for the past 6 months. I have double vision and have to wait a few minutes after waking up before I get out of bed. It hurts so much to look up down or side to side without turning my head; things I used to do with ease before. Sometimes my eyes feel like I have rocks in the sockets and other days it feels and looks good enough that I can walk through my apartment building hall way without a hat. I wear glasses now and am looking for a new style that will help to hide/or minimize the attention to my eyes because I absolutely hate them. Some days I feel as if I am starting to learn to live the way my eyes have changed but I’m sure most, if not all will agree that it is more than difficult. If I didn’t have to go outside most days I wouldn’t. I could tolerate more if I knew that the swelling would eventually go down but the doctors/endocrin I speak to says it may go down a little but that it may never be the same. I’m taking Tapozole 15mg a day. Blood work one month ago and levels were getting a bit low. Scheduled for more blood work this month. I pray every day to be in remission. I can’t believe how much my looks have changed. I just can’t believe it. I refuse to take pictures now and I dare not look at the ones I took before graves disease. I was never one to make up. Now I have to learn to do whatever I can to hide the look. Its gross and I don’t mean to sound negative but I’m venting because noone else knows what the hell I’m talking but you guys who share this disease with me. I’m sorry if I upset anyone I just needed to get some of these feelings off my chest.

[gatorgirly June 6, 2012 at 4:28 pm Post count: 326]

#1172279

Hi Jaqe,

While my TED isn’t as severe as yours sounds, I completely understand why you feel ugly and gross. I do, too. I used to consider myself pretty. Since TED, coupled with the moon face, weight gain, and acne I got from the steroids to treat my TED, I hate the way I look. I also avoid having my picture taken as much as possible. I don’t think I look so bad in the mirror but when I see pictures, I disgust myself. I’m not depressed or anything, but I refuse to get back into the dating world until after my orbital decompression. I think it’s totally normal to hide your eyes when they suddenly look so strange after years of normalcy. I wear sunglasses whenever I can and honestly, don’t have nearly as much of a social life as I did before the TED. I never leave the house without mascara because my eyes look scary without it (I have blond eyelashes). Are you under a specialist’s care for your eyes? Looks are one thing, but you shouldn’t have to live in pain. Also, I say “looks” with a grain of salt because even my eye surgeon agrees that it’s not about the aesthetics, but the fact that our eyes are the central point of our faces, and when they change, so does our whole appearance, both inward and outward.

I hope you achieve remission, too. But do know that your eyes will get better eventually, and TED doesn’t follow the same timeline that Graves does.

[snelsen June 6, 2012 at 6:05 pm Post count: 1909]

#1172280

To jageinquotation and vickrn,

I am writing to address the best way for you to get good care if you are diagnosed with TED, thyroid eye disease.

A small introduction. TED has two phases. An active, or “Hot” phase, which lasts around 9 months to 18 months. After that, there is the inactive, or “cold” phase. All surgical correction is generally done in the cold phase, with the exception of optic neuropathy, which is pressure on the optic nerve. If that happens in the active phase, blindness can result, so and OD most be done to relieve pressure on the optic nerve.

It also can be mild, moderate or severe. I looked at about 20 articles before I began to write this post, and the following one is the one I think is the most helpful for someone who is just beginning to learn about their TED. I was going to write all it myself, but the post would be too long.
This is pretty good.
http://www.bopss.org/page.php?edi_id=534

In summary, there are three degrees of the severity of TED. Mild, moderate and severe.
From what I have learned from having TED many, many decades after i had Graves, it is critical for you both to go to doctors who are ophthalmologist to manage this very long, and very frustrating and painful disease, depending on the degree that you have. TED can occur anytime, with any degree of involvement. You can see from all the stuff that I have listed at the end of my post that it has been hellish for me, and I had severe TED. My active phase lasted almost a year. But I did have to have emergency surgery for optic neuropathy in the active phase, for I was losing vision.

In my TED experience:
Endocrinologists do not manage TED.
Oculoplastic surgeons do not manage either Graves’ or TED.

After TED has run its’ active phase, surgeries can be done to help double , vision (strabismus surgery, usually done by a pediatric eye surgeon) proptosis, or bulging eyes (done by oculofacial surgeons who are familiar with TED, and do orbital decompressions, OD for short. They also do eyelid surgery, for our retracted upper and lower eyelids.

Vickirn, I really cannot imagine your oculoplastic eye surgeon telling you to have a thyroidectomy. That sounds very very strange. Can you get a 2nd opinion of this? It isn’t even their field. Maybe it is not his field SO MUCH, that he does not realize that people can have TED with or without Graves’. Of course, most TED does occur to patients who have had GRaves’. I have been dealing with TED for almost 3 years now.
My endocrinologist manages my Graves’ and thyroid supplement. But certainly not TED. My eye docs managed TED, varied eye surgeons did the surgeries, but other than ordering antibodies at the very beginning of TED (which really does not contribute all to the treatment of tED) I never had lab work.

Of course it makes perfect sense to be euthryoid, not hyper and hypo, for that is the goal of treatment of Graves’.
There still is a lot of confusion of the pathophysiology of TED. At this time, most scholarly articles conclude with the statement that much more research needs to be done regarding the proteins that antibodies may attack, and also the treatment. Some researchers hypothesize that the antibodies may be the same for Graves’ and TED, but the proteins may be different. We really don’t know and they don’t either.

1. It is essential that you go to an eye doctor that is familiar with TED. My strong suggestion is that you see a neuro opthalmologist, and continue to be followed by this doc over the course of the active phase of the disease.
2. Two important points to remember, is that corrective surgery of any kind needs to be done in the INACTIVE, or cold phase. Except for optic neuropathy. The doc mentioned in #1 is the doc who tests for this.
3. Sometimes, in the active phase, you can see the strabismus surgeon, who may want to try prisms for your double vision. I know they have helped others, but they did not help me. They will give you temporary ones to put on your glasses (after testing your double vision) to see if they help.

The big reason surgery cannot be done in the active phase, is that all these surgeries depend on constant measurements, so the surgeons know how to correct all these things, double vision, bulging eyes, retracted eyelids. , During the active phase, measurements, and your eyes, are constantly changing.

I had it all, and it has been very very difficult. Extreme sensitivity to light, dry eyes, eyes that won’t close at night cause of proptosis and retracted eyelids, double vision that made me crazy, optic neuropathy, painful to move eyes, blah blah and blah.

I am sorry you both have the diagnosis of TED. Treat the symptoms with drops and lubricant, and have continuing care from eye docs who understand TED very well. My main guy was the neuro-opthalmologist.

As you know, I am “just” another patient. But I sure remember how I felt at the beginning of TED.
Shirley

[jaqeinquotation June 9, 2012 at 8:39 am Post count: 131]

#1172281

Thank you so very much snelson for taking the time to reply to my post. I will follow up with my doctor and post any updates soon!

[jaqeinquotation June 11, 2012 at 1:03 pm Post count: 131]

#1172282

Hi again,

Just wanted to post a bit of an update. I went to see my family doctor today and requested to be referred to an ophthalmologist. I told him that my eyes have never been measured and that I want to talk about other options that may be available.
He pretty much told me that “they don’t really measure eyes at this stage”, that my eyes will Never go back to normal and that an ophthalmologist won’t be of much help. I fired back (in a nice tone) that I am aware that my eyes may never go back to “normal” as I know them but that I strongly believe that the swelling will go down eventually; I’ll have to live with the “tired” look and learn to apply concealer. He said that he would refer me just to reassure me but that the main objective is to basically normalize the blood levels by controlling the hormones with treatment.

He was clear that surgery or iodine treatment is not likely to make a difference in the appearance of my eyes and that reconstructive surgery may help. My thing is this, we didn’t discuss the crazy double vision or the pain I feel when I look around without moving my head. He wouldn’t or couldn’t tell me if my eyes was mild, moderate or severe and stated that the level of severity is to be referred to the TSH levels. For example Hyper or Storm; storm obviously being severe.

I believe that an ophthalmologist will be able to give me a bit more insight. I need a specialist to observe and diagnose if I need to have emergency surgery due to this double vision I feel is getting worse. I must admit that the hardest part of dealing with this disease is not knowing if and when it will ever end.

Question:

If or when I have the reconstructive surgery, once the puffiness is gone will there be excessive skin left?

Ooh Lord I look forward to the inactive phase.

[KimberlyOnline Facilitator June 11, 2012 at 1:59 pm Post count: 4294]

#1172283

jaqeinquotation wrote:

If or when I have the reconstructive surgery, once the puffiness is gone will there be excessive skin left?

Hello – I don’t know for sure, but I’ve seen many “before” and “after” photos of patients with TED, and the excess skin has not been an issue in any of these photos.

Yes, definitely stand your ground and make sure you get that referral to an experienced ophthalmologist. You deserve the best care!

[Kells1 June 12, 2012 at 1:43 am Post count: 33]

#1172284

Apparently the excess skin shrinks to fit in time so there isnt usually a need to remove it. I am so glad you stood your ground with your doctor, you have double vision and thats something that needs careful monitoring along with the TED. I dont have double vision, mainly blurry and now some cloudy vision and i was given an appointment in july. I hope all goes well for you and that your questions are answered fully so you are reassured with this specialist.

[Bobbi June 12, 2012 at 4:42 am Post count: 1324]

#1172285

I live part time in the same area as Vickirn, and while I did not go to Bascom Palmer, I, too was referred to an oculoplastic surgeon during my “hot phase”. It may be more common here than other places, Shirley.

The red flag for me is the suggestion of removing the thyroid before having surgery because the “thyroid” was attacking the eye muscles. If you encounter this same opinion elsewhere, please politely ask the doctor for evidence — i.e. documented studies in high quality peer-reviewed medical journals. I seriously doubt they will be able to supply you with it. And if he/she is unable to provide evidence, I would suggest consulting with another doctor.

[Bobbi June 12, 2012 at 4:42 am Post count: 1324]

#1172286

I live part time in the same area as Vickirn, and while I did not go to Bascom Palmer, I, too was referred to an oculoplastic surgeon during my “hot phase”. It may be more common here than other places, Shirley.

The red flag for me is the suggestion of removing the thyroid before having surgery because the “thyroid” was attacking the eye muscles. If you encounter this same opinion elsewhere, please politely ask the doctor for evidence — i.e. documented studies in high quality peer-reviewed medical journals. I seriously doubt they will be able to supply you with it.

[snelsen June 12, 2012 at 8:29 am Post count: 1909]

#1172287

I second the suggestion from Bobbi regarding the doctor who suggested that you ask for evidence based, academic studies from respected journals, that support his statement of removing the throid because it was attacking the eye muscles.
Bobbi, for my own interest and that of others who are beginning with, or have TED, my question is, in your personal experience, did the oculofacial surgeon
do all the visual field testing for signs of optic neuropathy? There are several finite tests for that specific problem. The Humphrey Visual Field machine is the current one used, along with looking at pages of colored dots, to identify the numbers, plus a couple others. My oculofacial surgeon was in my life to plan and do surgery. I was referred to him for an emergency orbital decompression AFTER optic neuropathy was diagnosed by the neuro opthalamologist. When I first had TED diagnosed, it was emphasized to me that I definitely needed to be followed by a neuro/eye doc. Maybe other eye docs do these tests. but the reason I was referred at the beginning of TED, is because the initial eye doc told me that only the neuro/eye docs did them.
Perhaps this is not correct in all instances.
Shirley

[gatorgirly June 12, 2012 at 8:49 am Post count: 326]

#1172288

Shirley,

When living in Fort Myers, Florida, a neuro-opthamologist did all of the testing, including the visual field test about every 12 weeks. Now that I live in western Massachusetts, there are no neuro-opthamologists around here. My oculofacial surgeon actually does the visual field test in his office (well, he doesn’t do it – the machine does) as well as taking all sorts of measurements that my neuro-opthamologist in Florida did. I think this is common in areas without a trained neuro-opthamologist. My surgeon is renowned in OD surgery and all the local endocrinologists refer their patients with TED to him.

[Kells1 June 12, 2012 at 9:14 am Post count: 33]

#1172289

gatorgirly wrote:

Shirley,

When living in Fort Myers, Florida, a neuro-opthamologist did all of the testing, including the visual field test about every 12 weeks. Now that I live in western Massachusetts, there are no neuro-opthamologists around here. My oculofacial surgeon actually does the visual field test in his office (well, he doesn’t do it – the machine does) as well as taking all sorts of measurements that my neuro-opthamologist in Florida did. I think this is common in areas without a trained neuro-opthamologist. My surgeon is renowned in OD surgery and all the local endocrinologists refer their patients with TED to him.

I agree with Gg, as far as I am aware, here in the UK the occuloplastic surgeon will do the relevant tests and even my local eye hospital told my doctor to send me to the surgeon as he also specialises in TED. Maybe its also part of a cost saving initiative here. And yes, my surgeon is also deemed the best in his field of work.

[snelsen June 12, 2012 at 9:45 am Post count: 1909]

#1172290

I am happy to hear this information! I certainly was open to knowing more!
Yes, you are so right, different parts of this countries, and different countries, have their own parameters for practice.
My main motivation is for everyone to know that optic neuropathy CAN happen, as it did for me. So good to have visual field testing by someone who is familiar with the whole tED world
Shirley

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