[susandemarco]

in reply to: MORE INFO ON TED #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

[susandemarco]

in reply to: MORE INFO ON TED #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

[susandemarco]

in reply to: MORE INFO ON TED #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]

in reply to: MORE INFO ON TED #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

[susandemarco]

in reply to: endo reducing synthroid again #1064086

Hi Bobbi,
It sounds, but your reply to me, that you have had some eye issues. Did the soft tissues swelling return to your normal
eye, or does it stay swollen. My ophthamologist and my endo said that it had to take its course, (go throught the
hot phase) whatever that means, and then it would get better. My question is , how long is the hot phase, and
when they say get better, do they mean that my eyes will go back to normal.

I realize that I sound redundant, but I would like to hear from someone who has already been through this.

Thank You,
Susan

[susandemarco]

in reply to: endo reducing synthroid again #1064084

Thank you for your reply. My other concern, as I stated before, is my eyes. Could it be because my levels have not
been stabilized since having RAI, that I am having a problem with puffy eyes, and if so when I do get stabilized,
will they return to normal. I am not having a problem with the muscles in my eyes, just puffiness of the lid and
on the bottom of my eye, around my cheekbone. I am wondering if this has ever happened to anyone else and
corrected itself after your levels stabilized.

Thanks again for listening, as no one else realizes how I feel.

Susan

[susandemarco]

in reply to: endo reducing synthroid again #1064082

Thank you for your quick reply. I am really feeling down these days. I feel like since I had RAI, everything is getting
worse instead of better. I have had GD for twentysome years and took PTU on and off during that time until my
remission time was shorter and shorter. I then was told I had to do one of the other remedies. I picked RAI, but
now I sometimes am sorry as I have never had any problem with my eyes until I had the RAI. I sometime feel I should have
had the surgery. To late now. I am sorry to be rambling on, but I am just so distraught with the eye situation. My
whole face looks different, and I am so self conscious.

But thank you again for your reply.
Susan

[susandemarco]

in reply to: PUFFY EYES SIX MONTHS POST RAI #1064755

Hi Bobbi,
Thank for your quick reply. I can always count on the facilitatiors on this board. When you were talking about the
eye muscle pushing on the fat pad of the eye, if that is the case, does it correct itself, or will the doctor give me
medication to reduce the swelling. It appears to me that my face looks different, although my freinds and family
say it is not noticeable. I think they are just trying to be nice, as it is very noticeable to me.

One more question. In my last post I put my bloodwork levels. It seems to me that I am going backwards. Does this
usually happen until you get the right dose to stablize you. Sometimes I feel I should have kept taking the ATD
medication (PTU) and took my chances with the side effects. I did take them on and off for all those years without
any problem, but m y doctor convinced me, that do to my age,(I am 63) my luck could easily run out.

I thought when I took the RAI everything would be ok, once I was put on the correct dose of synthroid. I hope
I do not have any other surpised.

One more thing. I did go to my regular opthamologist, who incidently my endo recommended, and he checked my eye
muscles, not with an MRI or CAT scan, but with the regular machines that eye doctors use in their offices, and he
said my muscles looked fine. But as I said in my previous post, I do have an appointment with an opthamologist in
New York City at Columbia Presbyterian Hosp, who deals with Graves Disease patients.

Thanks again for your quick replies.

Susan
New York City at Columbia Presbyterian Hospital

[susandemarco]

in reply to: EYES WATERING, TEARING ALL THE TIME! #1065028

Hi,
I took RAI on January8th of this year. Everything seemed to be going pretty well. I became hypo the beginning
of March and was put on 100mcgs of synthroid and then my endo reduced it to 88mcg six weeks later. After about
six weeks of being on the 88 I was reduced to 75mcg. Have been on this dose for about five weeks. About
one week into the new dose, my eyeslids began to get puffy. I thought it was because my dose was not high enoug,
but it seems that is not the case. My endo said it might be a form of TED, and that it will most likely straighten itself
out. Has anyone experienced out there ever experienced this, and if so, did it in fact straighten itself out.

I would appreciate any input anyone might have.

Thanks,
Susan

[susandemarco]

in reply to: So curious about how GD affects eyes. #1065093

Hi,
I would like a reply from either Bobbi or Ski. Thank You. My dosage of synthroid was changed from 88 to 75,
about two weeks ago. About one week after I started taking the new dose my one eye began to tear and then the
lid and under the eye began to become puffy. I’m wondering if this ever happed to anyone else, and if it did, did
it finally go back to normal. Or could it be that this dose is to low. My other eye is fine, and so far I feel fine.
I was wondering if my body just has to get used to the new dose. My eyes are not bulging , and my eyesight is
fine. At my last visit to the endo, which was two weeks ago, she checked my eyes and she said everything was
fine, but had not started the new dose of synthroid.

Thank you,
Susan

[susandemarco]

in reply to: One year from RAI #1065511

Hi ewmb,
Can you please tell me what dose you are on now. And what are your symptoms when you realize that the
dose has to be changed.
Thank you,
Susan

[susandemarco]

in reply to: One year from RAI #1065509

I would like Ski or Bobbi to reply to this,
I had my RAI treatment on Jan.8,2010 and became hypo on Mar. 8,2010. My endo put me on 100mcg of synthroid on that
day. I took it for eight weeks and then felt like I was becoming hyper again. Not as bad as pre RAI, but felt very
tired and sometimes would feel hot. When i went back for bloodwork, sure enough, my dose had to be less. She
put me on 88mcg, and I have been on this dose for about three and one half weeks, and starting to feel the same
way. Very tired. Could it be that this dose is to low or to high. Is it to early to call the endo and go back for blood work?
Or should I just wait until my next appointment, which is not until June 10.

I would appreciate your suggestions.

Thanks
Susan

[susandemarco]

in reply to: 5 months post-RAI…feel good but jittery pulse #1065611

Hi Enough,

I finallly went hypo in March, and my endo put me on 100mcg. of synthroid. By the time my six weeks were up
I felt like I was crawling on the floor, I felt so tired, but in the same token I was very nervous and hot and I
thought I was going back to being hyper. When I went for blood work, and then had my appointment with her
she lowered my dosage to 88mcg. I have been on that dose for about two weeks, and feel better, but I still
get tired by the middle of the day. I was just wondering if that happed to you?

I was so happy when I saw your post, because I have been following in your footsteps, as you were about one
month ahead of me.

Any info you could give me is deeply appreciated.

Susan

[susandemarco]

in reply to: Went hypo..on levoxyl..when does it kick in? #1066735

This is for either Ski or Bobbi,
I will be entering my seventh week on Friday, post RAI, and I have still not have felt hyper or hypo. I actually
feel pretty well. Could it be that I could go into a normal range without going hypo and having to go on
replacement hormone, or could it be that it did not take. I feel fine, so I am hoping that I will go into the normal
range without any other medication. I would appreciate any input that you may have. I have a doctor appointment
in two weeks.

Thanks,
Susan

[susandemarco]

in reply to: Went hypo..on levoxyl..when does it kick in? #1066728

To Ski or Bobby,
Could it be that I am 5 weeks today post RAI and have not felt anything yet. I have not had that dumping feeling
that many of the people on this board talk about. And I still do not feel hypo. My last dr. appointment was two weeks
ago, and at that visit blood work was done and the dr. called to tell me everything was ok. My tsh was 0.11. As I mentioned
before I have no idea was that means. I was told by Ski, I believe, that I should get a paper copy of all my blood work to
see what the normal ranges are. I am not sure I will understand it anyway with all the zeros and decimal points.

At the time of taking the RAI the nuclear doctor said I would feel a little hyper about the third or fourth week, but
I did not.

Could it be that this treatment did not work? I do not feel sick, and at present I am not taking any medication.

Once again, I am very confused about all of this. I am due to go back to my dr. on March 12.

Any information you could give me will be appreciated. By the way my uptake was 71%, and my dose was 10mil.

Thanks,
Susan

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