[susandemarco]

#1018295

I have told my story before, but I will give you a short overview. I had RAI in January of this year. In March of this
year, i went HYpo. Since then, I have had my synthroid dose changed three times. As of now I am on 50mcg. for
about three weeks, so I really do not know if this is the right dose. In June my eyes started to become puffy on my
upper lids and under my eyes. I have been seeing an ophthomologist who specializes in gd and seems think that I have
a mild case of TED, as the test that he performed came back pretty good. However, as time passes it seems that
my eyes and face are getting more puffy. Today they are really puffy. By the way, thankfully, I do not have the
protrusion of my eyeballs. It is so frustrating because they cannot tell me when this will start to subside, and I am
beginning to think that my face will never go back to normal. The only thing that he has told me to do so far, is to
put over the counter eyedrops in during the day and to use lacri-lube and keep my head elevated at night when I
go to bed. It is getting to the point that I do not want to leave the house because of the way I look. I have another
appointment with him a week from tomorrow.

I would appreciate information from anyone who has had a similar situation with TED, and what you did and how
it turned out.

Thanks Again,
Susan

[Kimberly]

#1063793

Hello – Hopefully, others will chime in with their experiences; however, the good news is that most patients do *not* experience the worst of the symptoms that can come with TED. And even in the worst cases, there are surgical options that can restore the eye appearance back to normal once the disease has run its course. I have seen some "before" and "after" pictures of patients who have had terrible eye disease, and the results are amazing.

For those who *do* experience the worst of the symptoms, it is a very difficult journey over the course of 2-3 years. But there are members on this board who have been through every stage of the eye disease and can help with advice and encouragement.

I have mild swelling that is mostly masked if I wear glasses instead of contacts. However, if your appearance is really bothering you, you might get some wraparound sunglasses that you can wear both indoors and outdoors. Also, I find that if I have a high-sodium meal the day before, I wake up with *major* swelling in my eyes and face. I have no idea if there is a connection with TED, but I still try to keep the high sodium meals to a minimum!

[susandemarco]

#1063794

Thanks Kimberly for your reply. I really hope that I hear from other people who have already gone through this
problem, to hear how long it actually lasted.

Thank you again.
Susan

[snelsen]

#1063795

hi Susan, I have written a lot on my experience with TED, so maybe if you put my name and TED in the search engine’ box, they will pop up.
Short review. Graves’ MANY decades ago, had thyroidectomy at the very beginning, needed no replacement for years, then began Synthroid, got along fine always for many years. This year, a doc wanted to reduce dose according to labs, and even though labs said hyper, I wasn’t, and even though they continued to say hyper, I became hypo, felt crappy, cold and wanted to be in bed all the time, so we upped my Synthroid to 100mcg a month ago, so all is will in the Graves’ world.

BUT approximately two years ago, I noticed that vision was different, this was followed by three eye exams and three new expensive glasses prescriptions which did not help at all. I finally realized that the changes were several-my eyes watered all the time, but they were also dry, they seemed more noticeable in my head, the sun bothered me A LOT, and most of all, I found that when I looked up, I had double vision. This progressed to same double vision when I looked straight ahead.
WEnt to different eye doc, when I walked in the door, he said, "You have TED, sent me downstairs for an orbital CT, which documented this fact. The eye muscles, especially the inferior (lower) ones were very swollen, big, and this meant that they were fibrosed. This all happening cause I was making antibodies attacking the muscles of my eyes. All of this was bothering me a lot, and the double vision made it harder and harder to work (I was a nurse in a recovery room, and the moniters were way above my head, so when I looked at the moniter, I saw a mishmash of numbers on top of each other.
I stopped working, for this reason. The first eye doc held up two fingers on one hand, five on the other. He said, "Depending on the severity of TED, it will probably last as long as two years, and you may have as many as five surgeries. This takes a long time. There is an active, or hot phase, when the eyes are being damaged and constantly changing, then there is a cold phase, when they get stable with whatever degree of symptoms you are having. He said I should be followed by a neuro-opthmalogist, which is correct, and a pediatric eye doc, too, for ultimately, they are the people who do eye muscle surgery if needed. I just had eye muscle surgery last week-to move the muscles of my eye so I could look straight ahead without seeing double. NOT EVERYONE has this many problems, some do not have double vision at all. It all depends on which eye muscles are attacked, and how much. Some people get very big eyes that stare, and some have surgery to correct that, make more room for the eyes to be back in the head, sometimes for the health of the eye, sometimes for appearance reasons, sometimes because it is necessary to take pressure off the optic nerve (which is caused by all the swelling of the muscles)
It is called an orbital decompression. I had that surgery to relieve pressure on the optic nerve.
I am waiting right now to see the results of the surgery last week, cause there is still some inflammation and swelling, but i know now that there is much improvement.
As I said, I got TED years and years and years after I was hyper. It is not that common to get. It is entirely possible that you will have a "mild" case of TED, without all the issues I had, but it is important to be monitered all the way through this by docs who are familiar with TED.
Well, hope this is not too much information, but you are hearing my experience with TED. I have my post eye appt tomorrow.
Be sure to keep writing, and look at some other posts.
Shirley

[susandemarco]

#1063796

Hi Shirley,
Thank you for all your information. I was diagnosed with GD twenty-one years ago and was on an off PTU. The
first time I was on it for almost two year and went into remission for eight years. Then it came back and took
it again and went into remission for about three years. Each time I took the PTU my remission time was less and
less. I had never had eye issues while using this. Then in January of this year because of the complications that
this medication can cause, I decided to go the RAI route. At first I thought that maybe that is why I am having
these issues with my eyes, however the more I read the posts on this board, I realize that is not the case.

Thanks again for your information. I have an eye doctor appointment next Monday, and I will keep you informed
of my progress. I hope everything works out well with your last surgery. Keep us all informed.

Susan

[susandemarco]

#1063797

I have another question for someone to answer. I know this may sound like silly question, but when do you
know when the "hot phase" is over? I would appreciate it if anyone could answer.
Thanks,
Susan

[snelsen]

#1063798

THAT is a BIG question! I have been asking it for the past 1/2 year, for I did not want the eye muscle surgery done when my eyes were still changing.
Here is my experience. It is worth it to have occasional appointments with a surgeon who will ultimately do strabismus, or eye muscle surgery, if needed. The technician does all the stuff, I made a special effort to have the same person each time. A lot of these measurements can vary from person to person, of who is doing the measurements.
So that is one arm of TED. PLUS if I thought my eyes were changing.

How did I know? I guess I knew they were still changing when I got up one morning, and the double vision was super bad, and at another part of the day, it was either worse or better. I knew when my neck, scalp and shoulder muscles were almost in spasm, because I was tipping my head back until I did not have double vision. Since my inferior muscles were affected, I could always look down, always read and use computer, but looking straight ahead and up made my eyes ache, and it is socially difficult to have a conversation with someone who has four eyes two noses and mouths, so I tilted my head back until I had one image of a person (or a car, or a street sign, you get the picture…)

The neuro-op doc does completely different measurements, ordering visual fields, not by wiggling fingers in four directions, but using a fairly sophisticated and accurate visual field machine. That tells an accurate picture (plus if you say that you think you have a blind spot, or cannot see the color red clearly) of your visual fields, which in turn moniters if you have so much swelling in the orbit that there might be too much pressure on the optic nerve.

I went cRAZY wanting to KNOW definitely, that I was out of the active, or inflammatory stage, for to me it represented moving toward the end of damage to my eyes, and having surgery so they could be improved–meaning moving muscles so I had a chance of looking forward. That is the surgery I had last week.
Ask more questions which i probably have not answered. Generally, "they" say about a year. I did reach a point where the double vision was stressful, and it did not seem to be getting worse, and I decided I must be ready for the surgery. The docs thought I probably was, but "there’s no way to really tell." they say!

Back from my post op appt just now. He asked me if I could look forward more comfortably (I can) and the measurements and I found that I could look up a little bit higher with less discomfort than before the surgery. Said that final result will be @ 4-5 weeks after the surgery, I am at week 2. That he can repeat surgery, move the inferior muscles some more.
I have the operative report, if you will send your postal address in a PM, I am happy to send it to you if you re interested.
Shirley

[Ski]

#1063799

The doctors I’ve heard speak on this have said that judging the end of the "hot phase" is typically done in retrospect ~ it is a good idea to schedule regular appointments (monthly, or every other month) so they can evaluate the extent of any changes that are going on. After there have been a few appointments with no changes in proptosis or double vision, the doctor may feel comfortable declaring the patient is out of the hot phase. There is no objective test they can use, it’s basically observation and their prior experience with other patients.

[susandemarco]

#1063800

If proptosis is the bulging of the eyes, I do not have that. I have the swollen eyelids and also under my eyes by my
cheek bone. Have you or anyone else had this and again do your eyes go back to normal when it is over. I know
I sound like I am repeating myself, but I am not sure that I am explaining myself correctly, as I really do not know
the right terminology for these symptoms. Please have patience with my posts. I do not have double vision yet,
but I do not know how long you have to have this thing before it starts. I am going to my ophthomologist on
Monday, and I will ask him all of these questions, but it is nice to hear it from someone who has already gone through
it and is over it.
Thank you Ski for your information, and I am wondering if you had any of these symptom, and if so, how long did they
last?
Susan

[Bobbi]

#1063801

At one point, my eyes got so swollen that the skin turned purplish mauve. At the time, GD/RAI was considered the culprit, and eventually the swelling went away, but I later developed other symptoms of the eye disease. So I thought the problem was related to TED. But twice since then I have had the huge swelling. These other times, allergies were diagnosed, and I was given a short Rx for prednisone to get the swelling under control. The last time this happened, two docs decided I was having an allergic reaction to a cat….

My point. Don’t be too quick to blame the eye disease. It might well be that something else is going on, which you could be ignoring by blaming the eye disease.

But, going back to your comment about not wanting to go out due to how you look. I hope you can get through those feelings and get back into the world. It will reduce your stress levels to have outside activities, and meetings with friends, etc. The time of the hot phase is way, WAY too long to hide yourself away. I do know how you are feeling. When my eyes first turned mauve, I looked like a battered wife. I went to a local department store’s cosmetic section and asked the ladies there for "industrial strength" make-up. (It absolutely helps to have a sense of humor when you’re going through this.) They helped a bit. I think, in retrospect, I would have been better off going to an actor , because I needed more than a little help. Now their stuff is definitely "industrial strength!" Anyway, I’m not being glib when I say I hope you can work through your feelings of self-consciousness soon. I know it’s hard. I also know that it’s necessary for our emotional health. And one of the lessons I took away from my Graves experience was that how I look is not who I am, nor does it reflect my worth. But it was a hard lesson all the way around.

[susandemarco]

#1063802

Hi Bobbi,
Thanks for your reply, and yes my upper lids are pinkish purple. My endo did give me an RX for prednisone, but
I am petrified to take it. She left the decision up to me and when I call my ophthomologist, he said he would
not take it. Well, I guess I am in for the long haul. I have not heard anyone on this board tell me that they went
back to looking the same as they did before. Oh Well.

Susan

[Ski]

#1063803

I didn’t have many of the TED symptoms, but I did have the swelling of the eyelids ~ it was the first symptom that sent me to a doctor to start figuring things out, as a matter of fact. It largely subsided once my thyroid hormone levels got better. I did end up having some slight proptosis, nothing spectacular, but my eyes looked different for a while. My eyes HAVE gone back to the way they originally were, for the most part. MANY patients have that experience. We might not see many of them here, since they don’t perceive any lingering problem.

[susandemarco]

#1063804

Thank you Ski for your very optimistic reply. Hopefully I will have the same outcome.
Susan

[acacchione]

#1063805

I too had RAI recently in August and am now having the same problem (a lot of swelling of face and around eyes.) I took prednisone for a couple weeks after the RAI to prevent TED symptoms (as prescribed by my optho.) Just in the last week my face and eyes are really puffy. Not TED symptoms I was having before RAI, but puffy. From what I’ve found after researching on the net and from talking with my endo, I’m now pretty hypOthyroid because the RAI is really working and swelling of face and around eyes is common when hypOthyroid. This could be your issue. Your RAI is working and you may be starting to become hypOthyroid now. I would call your endo and tell him/her. You probably need to have your bloodwork done to see if your medication needs to be adjusted. She gave me a diuretic too (which I have yet to take.) I will probably start on that tomorrow. I’m definately retaining water. Just something to think about.

[Bobbi]

#1063806

I just reread one of your posts, Susan, and realize that I missed one of your questions. Ski addressed it, but I would like to add my bit to it, too.

The most important thing for you to keep in mind is that getting "some" symptoms of the eye disease does not mean that you will get all of them, or that your eye issues will become serious. I got the soft tissue swelling, and I went on to develop double vision, with only a slight bulging (protopsis) of the eyes. When the hot phase was over, these symptoms went away. I may still have a wee bit of the soft tissue swelling, but the only time I get double vision is when I am very tired, and I have no noticeable protopsis….(if that’s the correct spelling). So yes, the symptoms remit once the hot phase is over. How much they remit depends upon how much damage is done to the eye muscles during the hot phase. I was told at one point that I undoubtedly had "permanent" damage — not something you want to hear. But whatever that damage might be, it is hardly noticeable any longer.

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