[susandemarco]

in reply to: EYELID SURGERY POST OP #1062807

Hi Shirley,
I am so happy that your surgery is over, and it seems that you are doing pretty well. Everytime I thought about you
on Tuesday I said a little prayer. Have a great day and keep us informed.
Susan

[susandemarco]

in reply to: TED and high eye pressure #1062924

Hi Diane, the doctor I am going to deals with graves disease patients who have TED. He is located in NYC at the
Harkness Eye Institute in Columbian Presbyterian Hosp. He really seems to know his stuff, however, I do not
think he is neuro-ophthamologist. He does do the visual field tests and all the other tests that go along with
this disease. I do have confidendce in him.

My eyes are also very swollen on the lids and underneath. It makes me sad to hear that you do not think that your
eyes will ever look the same. Did your doctor say that, or that there are procedures that can fix the cosmetic
problem. One of the ladies on this board will be having the procedure to fix the upper lid in about one week.
I am very excited to hear how it turns out. Hopefully, with the Grace of God we will all get back to some normalcy in
our lives. I am a little behind you, so I will follow your progress.

Thank you for all your input. All of the people on this board are very informative. At least you do not feel as though
you are going through this thing alone. Please keep me informed.
Susan

[susandemarco]

in reply to: TED and high eye pressure #1062922

Hi Shirley,
He did say that it was glaucoma, and that is why he gave me the drops. However, I did wonder how he new it
was not related to the TED. I have to go back in two weeks and I am going to ask him how he determined that the
pressure was high due to glaucoma, and not the TED.
Thank you again for all of your insightful information. It is such a pleasure talking to people who understand what
we are going through.

And thank you Diane for your story. It helps us all to get through this ordeal. It will only be one year in June since I
started with this. I guess I still have a ways to go before I get out of this hot phase. Please keep me informed of
your progress with your high eye pressure and coming to and end with TED.
Susan

[susandemarco]

in reply to: TED and high eye pressure #1062920

Hi Diane,
Did your doctor put you on drops to lower your eye pressure. My doctor did laser procedure and now put me on
two different drops. It was 30 in each eye last week and then after being on the drops for one week and after the
laser it went down to 27 in each eye. He said that I have gloucoma. He also told me that it was not related to the
TED. Does your doctor have you on any medication? And did he say the high pressure was due to TED.
Thanks for any information you could give me.
Susan

[susandemarco]

in reply to: TED and high eye pressure #1062917

Hi Shirley,
He has done two visual field tests with a machine. They both came back fine. He doees the color test with a book that
looks like little squares with numbers in different colores. I am going back to him tomorrow morning, and I will ask
him questions. He told me the eye pressure that he tested me for was totally unrelated to TED. I have looked for
a neuro-ophthamologist in my area, but so far I cannot find one.

This whole ordeal is really making me very nervous. I will let you know how I make out tomorrow.

Thanks again,
Susan

[susandemarco]

in reply to: I Choose RAI I-131 #1063436

Hi Shirley,
Thanks for the very explicit answer. My doctor is doing visual field test with a machine. He has done two so far. He
told me the results of the last one was very good. However, as I do not have double vision all the time, sometimes
at night when I am tired and it is only when I watch TV, and then it is mostly when I am trying to read the bottom
of the TV. My next appointment is March 2. We will see what happens then.

While you were going through this, did you drive. I still drive, but I do not feel comfortable going long distances or
places that I am not familiar with.

Susan

[susandemarco]

in reply to: I Choose RAI I-131 #1063434

Hi Shirley and Jules,
As I stated to Shirley in earlier posts, I am seeing an ophthomolgist who deals with Graves Eye Disease. What I want
to ask about is you both mention a neuro-ophthomologist. Until now, i have never heard of one. How do I go about
finding one, and is it really necessary?
Susan

[susandemarco]

in reply to: TED AND PUFFY FACE #1063345

Hi Ski,
No I am not taking prednisone. Maybe it is just because of the puffiness under the eyes, and it appears that
that my cheeks are also swollen. I have no idea. I just cannot wait for this to be over. Everyone says that it
it has to take its course, but I feel that it is never going to be the same.

Ski, I read on one of your posts that you had a mild case of TED, but I do not remember how long you said that it
lasted. Did you have the puffy lids and under eye bags. My lids are also red sometimes. They are more red some
days than others. I have no idea with this.

Thanks,
Susan

[susandemarco]

in reply to: Questions about Ted #1063690

Hi Elf,
I do not have the grittiness, or the sensitivity to the sunlight. I do have some tearing somtime, but not constantly.
However, the eye specialist that I go to, did in fact, diagnose it as TED. Hopefully, it is not as severe as some.
I just had bloodwork done on Wednesday, and the nurse called to tell me that it was ok this time, and that I
should stay on the same dose of synthroid, which is 50mcg. I will see and talk to my endo on Tuesday to see if she
has any other inofrmation. Hopefully, my eyes will not get any worse, only better in the future.

Thank you for your reply, it really made me feel a little more optimistic.

Susan

[susandemarco]

in reply to: Questions about Ted #1063688

Hi Ely,
I do have TED, but I do not have the protrusion of the eyeballs. I have significant swelling or "puffiness" of the upper
and lower lids and actually my cheekbone and cheeks also seem puffy. I have had this since July of this year. How
did you know that your hot phase was over, and why did you wait so long to have the surgery to fix your puffy
lids. My both doctors told me that my eyes would most probably go back to normal on there own. You also said
your hot phase lasted only one year, but it seems that it took more than that for you to complete everything. I
realize, that everyone is different, but I just cannot make heads nor tails out of this whole disease. My endo and I
are still trying to get my levels back to normal. I am presently on 50mcgs. of synthroid and going for my next blood
work on Wednesday. I still do not think that it is going to be perfect , because as soon as I overdue something I
get tired, and sometimes when I wake up in the morning, for a second, I feel very hot, and then when that passes I

feel cold. Who knows.
Thank you for any information you may offer to me.

Susan

[susandemarco]

in reply to: Questions about Ted #1063685

Hi Ely,
I have a few questions for you. Did you have TED before you took the RAI? You said your active stage of
TED lasted one year although you said you had Od surgery and your eyelids fixed four or five years later.
I started with TED in late June early JUly and am currently going through it. My upper lids and and under my
eyes are very puffy or swollen. You say that will not go away. Both my endo and my ophthomologist say that it
will return to normal, however, they cannot tell me how long this will be. They say it could last around two years.
I am also wondering why you had to wait so long after your hot phase had subsided.

I am so sorry for asking so many questions, but this whole thing has me very confused and upset, and I am trying
to make some sense out this. So far my ophthomologist has not suggested that I need any surgery at all. I just
have to use lubricating drops.

Thanks for any insight you can put on this whole thing for me.

Susan

[susandemarco]

in reply to: MORE INFO ON TED #1063808

Hi Bobbie,
How long did your "hot phase" last, and after how long during that time did you star to develop double vision?

Susan

[susandemarco]

in reply to: MORE INFO ON TED #1063807

Hi,
I had RAI in January and became hypo in March of this year. My endo started me on synthroid then, and had to
reduce my dosage about three times. My eye problem started when she reduced it from 88mcg to 75, because my
bloodwork showed that I was still hyper. I too thought that it was because my dose was to low and I was starting to
go hypo again, but that was not the case. Since then she has reduced my dose again to 50mcg. Hopefully, this
will be the magic number. I am hoping once I am stablized everything will fall into place. Tomorrow morning I
have another appointment with my ophthomologist. I hope he will give me some answers.

Thank you for your post, and I hope everything goes well for you.

[susandemarco]

in reply to: MORE INFO ON TED #1063804

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

[susandemarco]

in reply to: MORE INFO ON TED #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

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