[Bobbi]

#1067141

There are some eye appearance changes that can be due to elevated levels of thyroid hormone. Actually, the main one that I can think of is upper lid retraction. The muscles of the upper eye lid tighten in response to high thyroid levels. This opens the eye wider, and gives the appearance of bulging. (It is not true bulging or protrusion, it just appears that way.) So, if your thyroid levels turn out to be on the high side again, that might be what is going on.

The fact that it is only happening to one eye, however, may be an indication that the eye muscles themselves are changing in shape. In other words, it could be a sign of TED, which is not associated with elevated levels of hormone. For whatever reason, TED changes often affect one eye more than the other. Since doctors can look at the eye muscles rather easily these days, through the soft imaging techniques of ultrasound, MRIs, CATscans, etc., it is now a theory that most, if not all of Graves patients have some degree of TED, so it is not cause for you to panic if that is what your doctor indicates. But it might be a good reason to begin an association with an opthamologist.

[susandemarco]

#1067142

Hi Bobbi,

I am scheduled to have RAI the beginning of January. I have had Graves Disease for the last twenty years, and was on PTU on and off. The first
time I went into remission for about eight years, and the second time for about four or five years, but since then everytime I went on the PTU,
my remissions were shorter and shorter. Now the last time I went off in about one month all the symptons returned and Graves was back.

I have been on PTU for the last several months at a dose of one pill of 50mg, but then started having symptons, and the blood work showed my
levels were high, and could feel that they were. My endo put me on two pills of 50mg each and it put my levels at normal range, but she said
the antibodies were high, and if I should go off the medications all my symptons would return. She recommended that I really should consider
RAI at this point because I have really given the medication a good chance, without good results.

All through the years I have not had any eye issues, and she measured my eyes and said she didn’t think I would after the RAI. However, I am
somewhat concerned after reading some of the posts on this message board.

My other concern is the weight issue. I had asked the doctor, and I also posted the question, and I think you answered me. My endo said, after you
are stablized with normal levels, and are put on synthroid, as long as you watch what you eat and exercise I should not have a problem maintaining
my weight. What about during the time that you are waiting to get to the hypo point, and the time during the process of getting the right dose
of synthroid, if you are careful with your diet will you still have to worry about gaining weight?

I realize that this sounds very vain, but I was always very consious of my weight.

Thank you for any information you can give me.

Susan

[susant]

#1018789

Hello it has been a while,

I have been on Carbamozole for almost a year now and have to getting that old normal me feeling back (YAY). About a month ago though, I started to get that tearing back in my right eye again. In the last couple of week I have noticed that my right eye is enlarged and my left eye has gone back to normal. So now I have a normal eye (can’t remember what it looked like so I hope it is normal) and an enlarged eye. Does anyone know what is happening? given that I have not experienced any eye symptoms for about 9 months. I have a appt with my endo in a week. Would it be worth getting a referral to a opthamologist? It is extremely noticable and I am feeling rather paranoid as it looks like I have had some sort of stroke or something.

Thanks for your support and answers in advance ” title=”Very Happy” />

[Bobbi]

#1067143

Hi, Susan:

I will tell you my experience as a result of RAI. I was so absolutely sure that I was going 1) to gain weight and 2) that my doctor wouldn’t believe it was anything but overeating that I kept a food log. Every bite that went into my mouth was recorded, so that I could prove that I wasn’t over -eating, and was still gaining weight. I also made good and sure that the only calories that went into my body were nutritious ones. I was on a "good" diet. I made sure that I ate at reasonable intervals (including planned snacks — an apple, some cheese, nuts, etc.) I didn’t let anything sweet cross my lips. I had RAI the week before Thanksgiving one year, and went hypo five weeks later. By that point, I had lost about ten pounds. In total, after RAI, I lost 18 pounds before gradually starting to put it back on. (I never did have to show my log to my doctor!) When the pounds started coming back on, I was exercising regularly, and I put on 15 pounds before having to go up a dress size. That pointed out to me that the returning weight was more muscle weight than flab weight.

You may gain some weight after RAI, if that is what you choose as your treatment option. We lose muscle while we are hyperthyroid, and it does tend to come back (as weak muscle) once we are at normal levels of hormone. Muscle weighs more than other body tissues, but it also burns more calories than other tissues, even at rest. So muscle weight is GOOD weight. I have a friend who runs marathons. even though she’s close to 70 years old. She eats like ten horses. She is a size one. Yes, she’s getting lots of exercise, but she also is pretty solid muscle.

I do understand your worries about gaining weight. But the long-term effects for you of excess levels of thyroid hormone are HORRIBLE. Every minute you are hyperthyroid, you lose valuable bone. Every minute you are hyperthyroid, you lose muscle. It is, unfortunately, the "evil you know," and you may be more comfortable with it than the unknown. But you need to do whatever treatment WORKS for you. If the meds are not working — i.e. if they are not controlling your levels of thyroid hormone in the normal zone — you really do need to think long and hard about your doctor’s advice.

[susandemarco]

#1067144

Hi Bobbi,
Thank you for your quick reply. I really do appreciate it.

About the eye involvement. Did you have any problems with your eyes after RAI. I am kind of concerned about it since in all the years that
I have had this disease I never had any problems with my eyes. Like I told you in my previous post my endo does not THINK I will have a
problem, but I am wondering if the RAI causes it, or if some people just get because of their Graves Disease.

If you have any information on this I would appreciate you informing me of this.

Thanks again for all your help.

Susan

[Ski]

#1067145

Hi Susan,

I was just cleaning up my notes from our conference in October, and I saw that most patients exhibit their TED symptoms within 36 months of presenting with thyroid disease. That’s not true 100% of the time, but for the most part that’s what happens. RAI has not been shown to cause TED, but in some patients it can worsen their symptoms, possibly due to increased immune activity in the first few months afterward. If you have not exhibited symptoms to date, RAI should not be a concern in terms of bringing on TED symptoms. You may find some period of gritty-feeling, dry eyes, but it’s extremely uncommon for severe TED to appear this late in the game. You may want to consult with an ophthalmologist who has experience with TED patients ahead of time, as final confirmation of what you’ve heard elsewhere.

[susandemarco]

#1067146

Hi Ski,
Thank you for your reply, I really appreciate all of the facilitators information.

And once again, thank you for replying so quickly.

Susan

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