[Ski]

#1064081

If you end up on NO synthroid and you are still getting hyperthyroid lab results, then your doctor may want to discuss another RAI. You would also have the option for either of the other treatment choices at that point. You are NOT likely to be in that position, FYI. If you went hypo once without synthroid, it’s not likely that any remaining tissue is functioning so well that you’d end up hyper again without taking replacement. Another consideration is that the antibody action itself destroys thyroid tissue, so even if some remains active, it is being bombarded and destroyed that way, and everything will probably work together to ensure total ablation, eventually.

I’m glad you have seen an ophthalmologist about your eye symptoms, that’s the right source for info!

[susandemarco]

#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

[Bobbi]

#1064083

Yes, Susan, it happened to me, too. Like you, I had to have my dose of synthroid reduced over time, until eventually I was completely off it …. for about three months. Like you, I was very worried about having to have RAI again. I began calling my thyroid "Arnold" after the Terminator character the actor of that name played, that came out of the truck fire (RAI) skeletal but still lethal. (You can see how long ago it was that I had my RAI.) Anyway, after being completely off synthroid for a short while, we had to start adding it back in, little by little.

It is obviously not optimal to have this happen, but at least your doctor is paying attention, and tending to your needs.

I hope you are feeling totally well again soon.

[susandemarco]

#1018333

I went for bloodwork on Tuesday, and my endo’s nurse just called to tell me that they are reducing it yet again to
50mcgs. I took RAI in January, 2010, went hypo in March, and she put me on 100mcg, then lowered it six weeks later
to 88mcg and then lowered it again because levels were still hyper. I took that dose for about six to eight weeks, and
then she lowered it again to 75. Now today they are lowereing it again to 50mcg. I hope I will not have to have
RAI again. In the interim I have started to have a problem with my eyes. I do not have the bulging, but they are puffy
and red. I have seen an opthamologist who deals with people with GD and he said it should correct itself. I just
have to put rewetting drops in the daytime and at night.
Has this happened to anyone else out there, having to changed the dose so many times.

How do they determine if you have to have RAI again?

Any input on this would be appreciated.

Thanks,
Susan

[susandemarco]

#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

[Bobbi]

#1064085

Eye puffiness can be caused by a lot of different things: allergies or illness or, yes, as a symptom of eye muscle changes. And there are probably other things as well. If the eye muscles are swelling a tad, they do push the eye forward a wee bit, which then makes the soft tissue around the eyes look like it is swelling. The thing is, soft tissue imaging techniques have demonstrated to our doctors that most of us with Graves get "some" eye muscle involvement. In one report I’ve read, the doctor writing it said it could be 100% of us. Now that hasn’t been proven completely, but lots of us do have minor eye muscle changes apparently. And getting "some" changes does not mean that we go on to get horrible eye disease. Most of us do NOT. Even getting moderate symptoms of the eye disease does not mean that it will progress to horrid. It’s a very unpredictable issue, so please (and I know this is very hard) try not to fret. Worry does no good, and it does do some bad (in adding stress, and giving us frown lines). If there’s nothing you can do about something (and in this case, there truly is nothing typically), then the best thing you can do for yourself is what I call "do a Scarlett." Scarlett was the character in Gone With The Wind who preferred to worry about things "tomorrow," which, in essence meant never in her case. I can’t quite pull off the never in situations like this, but I can do a pretty good "tomorrow." I pull my thoughts to something else and keep busy at it. It does help.

[susandemarco]

#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

[snelsen]

#1064087

Hi Susan, it sounds like you have seen both your endo and your eye doc, both of whom are familiar with Graves’ eye issues.
Do you have a further eye appointment? The fact that they used the term "hot phase" can indicate that you may have TED, or thyroid eye disease. Or, it may not. It depends on whether you continue to have eye changes that are bothering you. This is a big subject. Although I do have TED, and have had a lot of experience with the course of TED, which is generally referred to as having a hot phase and a cold phase, I am reluctant to talk much about it until you learn more from your doctors about your eyes. You may just have reddened eyes, and need to use eye drops for a while, and that may be the end of it. Very good idea to keep track of how your eyes are doing. I look forward to more news from you in the future.
Shirley

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