[belldandy112]

#1072648

Hi,

I’m sure this is of no consolation, but the two of us are in the same boat. My opthomalogist has tried drop treatment for my eyes, but to minimal avail (hey, at least the drops help out with my allergies). She referred me to a specialist for steroid treatment — there really is no other way for me. My swelling is causing eye strain, and although I am not working, I am interviewing. I know that there is no way I could hold my eyelids up all day long to do desk work. Not to mention, I have had potential employers ask me about my eyes … not a good sign.

I know it’s a daunting prospect, but steroids might be the only way to go. I am personally willing to risk it to get rid of this problem. I took copious steroids for my allergies (hives) in the past and have suffered no side-effects because of steroid use. And I’m sure that I was taking a lot more steroids back then than I am now. My only concern is that I’m a hobbyist boxer, so I have considerable muscle mass (for a woman). I don’t want to end up looking like Sylvester Stallone in "Rocky!" ” title=”Smile” />

If you want to message me, please feel free, and I’ll keep you updated. After months of suffering, I’m ready to do whatever it takes to look normal again. Good luck, and chin up — we’ll beat this! ” title=”Smile” />

[Ski]

#1072649

Unfortunately, Graves’ Opthalmopathy (more commonly known lately as Thyroid Eye Disease, or TED) has its own course, and there’s really not a whole lot we can do to interrupt it. The one thing that may help as you go through this is to incorporate any kind of relaxation techniques that are helpful to you ~ I know it’s the hardest possible time to think of relaxing, because TED makes everyone anxious. There is so much wrapped up in our image of ourselves, in how we see, in how the world sees US, that it’s incredibly frustrating, and I understand that. Still, it’s an autoimmune disease (related to Graves’ thyroid disease, but not the same disease), and when we are stressed, it prompts responses from the immune system, which (in this particular case) "amps up" the autoantibodies that are attacking the tissues behind your eyes. Anything you can do to keep the stress level down will help to minimize the effects of the antibodies.

For the most part, TED takes 2-3 years to "finish." What happens is that we have a period of 12-18 months where the eyes fluctuate often. People who smoke experience the longer period, typically. After the period of frequent fluctuations (what we call the "hot phase"), there is a period of time where things just stay the same. After that, there is typically a short period of time where some improvements occur, and finally the patient enters the "cold phase" where no further changes occur.

During the hot phase, surgery is not a good idea, for several reasons. First, it can stimulate the antibodies and begin another phase of fluctuating. Secondly, you can overcorrect ~ the improvement phase will come later on, and that creates an entirely new set of issues. Finally, it can take away options you may have for correcting everything after the process has finished.

If your swelling is particularly severe, or the optic nerve is in danger of being compressed (once that happens, it’s irreversible and you lose sight), steroids and/or directed radiation (a beam of radiation to the orbit of the eye) are possible treatments to keep the damage at a minimum. Steroids can be used several ways ~ oral ingestion, "pulse" IVs, or injections to the tissues behind the eyes. Steroids and radiation are only effective during the hot phase. You can explore using steroids AND radiation, in order to minimize the use and risks of either. If these things are not successful in keeping the pressure off of your optic nerve, then surgery may be indicated, even during the hot phase, because it will save your sight, but that is only in the most rare of cases.

For the most part, though, patients do not have the very worst symptoms of TED, and they are able to use the "wait and see" method of treatment. I know it’d be nicer to be done with it quickly, but it’s just another lesson in patience for Graves’ patients.

There are several things you can do to be more comfortable. You can raise the head of your bed in order to keep fluids from settling around your eyes as you sleep. You can use "wraparound" sunglasses to minimize the discomfort of wind/sun exposure. Use preservative-free artificial tears often to keep the eyes moist. You may want to explore punctal plugs (these were talked about in a recent post), which help keep tears on the eyes and minimize dryness. Buy a pair of lightly tinted glasses to wear around the office ~ it helps keep down irritation from flourescent lights and forced air, and it also helps to hide your eyes from view. If your eyes do not close all the way while you sleep, you should use either night-time gel products or a mask (or both) because corneal damage is also irreversible and can threaten sight.

Once you’re confirmed to be in the "cold phase," you and your doctor can evaluate the state of your eyes and decide whether you want to pursue surgical correction. The thing that you’re correcting, at that point, is the scar tissue that remains. Most people are very happy with the results of surgery, if they need it. Some don’t need surgery after all ~ for some, the changes revert almost to normal.

It’s no fun, we’re sorry you’re going through this. But you’ll make it! Hot baths, yoga, whatever you LOVE, whatever nourishes your soul, that’s important for you to do.

[belldandy112]

#1072650

Another question to those who might be reading this thread (and thanks, Ski, to your very thorough post, BTW) …

Has anyone had only eyelid swelling (upper and lower lids) and eye strain — but without compression of the optic nerve, dry eyes, or any kind of noticeable protrusion? I recently had a CT scan, and everything was within normal range. In fact, that I had no visual opth. difficulties during my first "hot" phase made this disease difficult to diagnose. TH levels were quite literally the last thing that were run.

I am just wondering if this is the beginning of bigger problems with my eyes, and if swelling is typically how it first starts?

Melissa
Austin, TX

[Jake_George]

#1072651

In my case swelling started first followed by double vision. Steroids helped a great deal and let my eyes settle down during numerious hot phases.

Most people notice lid retraction first. It is the ever so subtle widening of the white space people can see. A normal eye will have the upper and lower lids touching the iris. With lid retraction we will some some or a lot of white showing above and below the iris. That leads to dry eyes and possible cornia dryness.

Eye drops will help with the dryness a great deal. Remember what you do today will depend on how your eyes feel tomorrow. If you use cold packs and drops today they will feel better tomorrow. So use the cold packs and drops then or the next day you eyes will feel worse. That was the hardest for me to remember. When my eyes felt good I tended not to use the cold packs and drops and the next day the eyes were dry and hurt.

We are only a click away.

[belldandy112]

#1072652

Thanks, Jake. I really want to nip this in the bud.

My general opthomalogist (is that spelled right?) gave me a whole slew of products to test out. I found something called Optivar that is totally wonderful. It’s used for allergy relief, but it works well on these symptoms. It even reduces some of the "puff" on my lower lid, and I think it’s because I am no longer rubbing my eyes in my sleep. Elastat (which most people rave about) only worked "OK" by comparison. Caveat: Optivar tastes really nasty for a very long time as it drains down the throat. Need something to kill your appetite? You’ve found it.

I can hardly wait to see the specialist on Thursday … I am SO looking forward to getting this resolved. I feel fine in all other areas now (even the B-12 problem seems to be in the process of remediating itself), except my eyes are driving me crazy!

Hugs to all —

Melissa
Austin, TX

[gallrg]

#1019581

I am currently in remission from Graves disease. All thryoid levels are back into the normal range. Unfortunately, I’ve developed Graves Opthalmopathy. When this first started I had double vision when I first woke up in the morning, it went away in less than a minute. Now I have double vision off and on all the time. Also swelling constantly (a frozen bag of peas is my best friend ” title=”Smile” /> ), and pressure off and on. I have seen an opthalmogist about it, and have another visit April 3 since my symptoms are increasing. Anyone have suggestions for treatment? Natural or otherwise? I don’t find many treatment options out there other than prednisone or eventually surgery. I’ve given up most of my hobbie, needlework and reading, since they strain my eyes so much.

It’s increasingly difficult to keep working. I suspect the main cause of my problems are stress related to my job, but leaving my job isn’t really an option. My job stress is reducing dramatically and I hope that will translate into remission of the GO. I’d appreciate any suggestions anyone has.

[DianneW]

#1072653

Melissa,

You asked about the spelling of ophthalmologist, so i just spelled it correctly for you. It’s a difficult one and most people spell it wrong, so you’re not alone. I corrected it in the subject line too. It’s that first h (oph) and the l (thal) that people get wrong.

Ophthalmopathy is another word that’s rough to learn to pronounce. When my doctor first told me I had it, I said, "WHAT??" He just laughed. So for anyone who wants a fast lesson in pronouncing it, it’s:

oph-thal-MOP-a-thy (the "h" is silent, so it’s prounounced op-thal-MOP-a-thee)

You asked how you can tell if what you have now is just the beginning of a bigger problem. The answer is that you can’t. There’s no way to tell what will happen from here. I wish there was a better answer than that, but there isn’t. When I first discovered that, I was worried beyond belief, and unfortunately some of my worst nightmares came true, but the way it happened I didn’t have to deal with it all at once, and I had lots of wonderful support, so I was okay.

And chances are for you, the worst has already occurred, since most people don’t ever have a severe case. So I suggest that you take each day as it comes and live as if the worst is behind you. If it happens that you have more to deal with, you can handle it as it occurs.

Best wishes and big hugs,

[gemini52]

#1072654

All,
After 2+ years of eye issues (upper lid retraction; significant upper lid laxity; upper eyelid swelling and discoloration; edema), I have recently been diagnosed with Graves’ ophthalmopathy – TED. This came about as I was exploring options for cosmetic upper and lower eyelid surgery; one of the docs took one look at me, asked me about the upper eyelid retraction which I must have been blind to until that day (!), and then sent me to a specialist because of his concern that I had TED. Interestingly, all thyroid function tests report normal range, as does orbital CT scan. Nevertheless, I accept the diagnosis and will see my ophthalmologist every few months to monitor changes. At this time, I don’t have much evidence of proptosis. According to Wikipedia, I am in Class 2: which includes upper lid retraction and stare, soft tissue involvement (edema).

The TED diagnosis has taken a toll on how I view myself. It is hard to look at myself much less anyone else in the eyes. I seem to be withdrawing from social situations; I also feel very sad. I have decided to buy softly tinted glasses (without correction) to wear with my contact lenses when I have a flare up – which is more often than not anymore.

Lots running through my head but will stop now. I’m new to the forum and am grateful to have a place to go, to feel like there are others who “get it.”

[Kimberly]

#1072655

Hello and welcome! The eye involvement with Graves’ tends to run its own course. It most often appears in conjunction with hyperthyroidism, but can sometimes occur years after treatment…or in people who have not experienced thyroid issues.

The eye disease typically runs a course of 2-3 years where symptoms are changing (called the “active” phase), followed by a period of some improvement, and then a stabilization of symptoms. This stabilization phase is referred to as the “cold” or “inactive” phase, and once you get there, there are surgical options that can help restore both appearance and function.

The appearance changes are definitely stressful, as you can see from reading prior posts on this board. However, as you said, it is helpful to be in a community of others who have “been there, done that”. Hopefully, you will stick around and keep us posted on your progress!

[snelsen]

#1072656

Hello. I have had severe TED, as you can see from the litany of procedures I have had since 2009. And I know I had symptoms in 2008, but then I was raking out beaucoup bucks every three months for new glasses with a new RX. Which did not help at all.

To all of you in this thread for whom it might be helpful, but especially gemini52, I suggest that you use any resource you can to find a good neuro ophthalmologist, make an appointment and then you will know much more about your situation, and how you MIGHT be able to help it a little bit. If you have had these symptoms for a couple years, I hope your situation might mean that you might be moving toward the end of the active phase. (Read Ski’s and Kimberly’s comments a few posts down.) By taking a good history from you, in addition to some other tests, you and the doc may be able to determine if you are still in the active or hot phase, or the inactive or cold phase.

I see that you are established with an eye doc, and are seeing this doc regularly, so it is possible that is enough supervision, if this doc is familiar with Graves’, and the course it takes. Since your orbital CT is normal, or as docs are fond of saying, “unremarkable,” and you do not have double vision issues, you may be one of the lucky ones (even though you are not feeling very lucky right now) who is having a mild case of TED, and maybe you are in the inactive phase. If this were the case, it is very appropriate for you to explore surgical correction for your eyelids. And, it is very common to be photophobic (light sensitive.) I can’t go anywhere without a couple pairs of sun glasses and a visor.
**BUT, when you see a surgeon about your eyelids, be clear that you have TED, for these procedures are not elective cosmetic procedures which you have to pay for yourself, but they are medically indicated procedures, r/t (related to) TED. My insurance, and most people’s insurance, covers them.

Do write again with more questions. You are perfectly normal to feel that way about your eyes. welcome to the club. I’m so glad you do not have double vision issues on top of your proptosis. That is great, and even better news if you and your docs can decide if you have reached the inactive phase.
Shirley
And, welcome to this site, it is wonderful.

[tau]

#1072657

Hi,
I am Brazilian and I’ve found this forum today.
My father was diagnosed with Graves ophthalmopathy 13 years ago.
He has never had changes in thyroid hormones, they are always at normal level.
His eyes passed by an active phase for 3 years and, after that , they stabilized with a huge proptosis.

Unfortunately, last year, on July, the eyes became active again leading to an increase of the proptosis, which caused chemosis.
He started a treatment with metilprednisolona (steroid) and underwent surgery on right eye (most injured), which improved his condition.
But 3 weeks ago the treatment with the steroid ended, and the disease is still active: his eyes get worse every day.
He can’t use more steroids, otherwise it will attack others organs.
Are there other therapies?

[Kimberly]

#1072658

Welcome – and thanks for being a great advocate for your dad. I’m sorry to hear that he is going through this.

Unfortunately, there aren’t a lot of good options for the active phase of TED. Steroid use is only a temporary fix, and it does come with risks.

The following web site has some good info; look on the right-hand side under “What is TED”, and you will find some info on the treatment options that are available.

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

http://thyroideyedisease.org/

Wishing you and your family all the best.

[gatorgirly]

#1072659

Melissa and others:

Ask your endocrinologist and neuro-ophthalmologist about selenium. It helped my TED a great deal after I completed a brutal round of steroids. It is found in Brazil nuts (which are high in fat) or can be taken via supplement. My endocrinologist knew the Italian researchers who conducted the most recent study of selenium’s affect on TED, and he and my neuro-ophthalmologist fully supported me using it. I started with 200mcg a day, and am now down to 50mcg per day and have not needed steroids since I finished them in October.

My moderate TED developed in July 2011, and I am already told I could be a candidate for surgery in the next few months. I see my neuro-ophthalmologist at the end of April and will know more then but I haven’t had pain, pressure or double vision since before the steroids. July 2011-now: I know this is much shorter than the normal “hot phase” so I wonder if the selenium helped speed the process along…? Don’t take anything without informing your specialists (and your PCP, if you see one) about all your medications and conditions, but selenium is found in many foods anyway. It’s just the extra “oomph” my eyes got from the supplements that seemed to make the difference.

[gemini52]

#1072660

Thank you to those of you participating in this forum; I already consider you friends.

True to her word, my ophthalmologist put in a referral for me to see an endocrinologist. That appointment is scheduled for May 17th. In the last 2 years, I have used steroid bursts twice and found relief – but not lasting relief – from the upper and lower eyelid swelling. I will talk with the endo about this, as well as use of selenium – primarily to assist the lower eyelid/orbital area swelling. Also want to say to snelson, that, yes, the wording on my orbital CT scan was “unremarkable” vice “normal.” Ditto to whomever gave the thumbs up to frozen peas!

To belldandy112 (et al). I have the upper and lower lid swelling (primarily lower right eye at this time) but limited eye strain. I have no compression of the optic nerve, dry eyes, nor noticeable protrusion. Thyroid function is normal and CT scan “unremarkable.” I do have retracted upper eyelids which make my brows/brow bones seem especially noticeable. My eyelashes have all but disappeared.

It’s quite maddening. More thanks to all of you.

[phuffman39]

#1072661

I guess this might be a dumb question…but once your have TED and go through cycle of hot phase down to inactive, can you get it again?

[Author]

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