[Anonymous August 4, 1998 at 2:13 pm Post count: 93172]

#1148353

Lucy, I can’t speak to the drug as I didn’t take that one, but I have had the whole ball of wax with the eye disease. The eye problems are not connected to the hyper or hypo problems. It is a separate entity and runs its own course. You should have an eye exam done by an optho who is familiar with the graves eye disease. This will give you a baseline and the doc can monitor how your eyes are doing. Any change in your vision or noticable change in your appearance should be checked by the optho. Good luck.

[Anonymous August 4, 1998 at 6:05 pm Post count: 93172]

#1050038

Since I have been diagnosed almost 2 years ago,
I have not been in contact with anyone w/graves.
I have lots of questions about tapazole. I would
love to talk with someone who has been on it and
who can fill me in on what I can expect. I’ve had
some hair loss and haven’t heard anything about
liver damage until just recently. How scary. I’m
also curious if at this point in the stage of the
game if I’m more likely or not to develop any more
eye problems. Right now I have a mild stare in
left eye and considerable puffiness. If I stay on
tapazole and ride it out until the “burn out stage”
could things stay the same or get better? I’m
pretty freaked out by the eye changes and could
really use some support.

[Anonymous August 4, 1998 at 7:32 pm Post count: 93172]

#1148354

Just out of curiosity, what have you been doing for your Grave’s over the past 2 years since you were diagnosed?

I was diagnosed in December, and went on Tapazole for 6 months (very low dose). I didn’t experience any major problems, except that the lowest dose was still too strong for me, and I became hypo, and pretty miserable (extremely exhausted, hair loss, etc.) The most depressing part for me was that I immediately gained 20 pounds (in 2 months), and I still haven’t been able to lose it.

When I first started, I felt a little queasy and had headaches. I switched and started taking my pills in the evening, and that made it a little easier for me to deal with (I slept through the headaches and queasiness). I had itchy feet and palms the whole time I was on it, but that problem was completely eliminated by a once a day anti-histimine that I take most of the time anyway. (Whenever I stopped the anti-histimine, the itching came back, but while I was taking it, no problems).

Neither of the 2 doctors I went to ever mentioned liver concerns, nor do I recall reading about them in the detailed information sheet that I got from my pharmacy (doesn’t mean it wasn’t there, I just don’t remember it.)

I completely sympathize about the eye problems — that was a big fear for me, too. But as I’ve been reading more, I realize that even though eye problems are relatively common, bad eye problems are pretty rare. There isn’t really much you can do about it one way or another, so try to keep a positive outlook. A lot of people who post on this bb have bad eye problems, and I definitely feel for them. But remember that people without problems are probably not posting messages, and don’t lose your perspective. It’s pretty unlikely that you’ll experience the types of problems that you read about on the board.

I started experiencing mild double vision in the morning after I started taking the medication. When I went to the ophthomologist, I realized that my eyes had been puffy for quite a while before the diagnosis. However, I do think my eyes bulged out a little bit more after I started the medication. I’ve been off drugs for 2 months now, and I noticed about a month ago that my morning double vision has gone away, and my eyes feel a lot more comfortable. I’ve got an eye doctor appointment in 2 weeks, and I’ll be really interested in finding out if my eyes have gone down since I’ve been off the meds.

[Anonymous September 28, 1998 at 7:12 pm Post count: 93172]

#1148355

I have had Graves’ for about a year, and I recently had to change doctors after my endo left the area. My new endo urged me to consider RAI from the first visit, even though my TSH was rising steadily (if slowly). After a year, it is now up to .69, but he says that this is still too low (all other values are normal), and he scheduled me for a thyroid uptake test this Thursday. I have the feeling that I am going down a one-way street towards having RAI, even though I seem to be improving somewhat. I am now off all medication, too, and, except for a very rare palpitation, my symptoms are gone. One eye is enlarged, and he has held this up as proof that I have the disease, even though the eye disease can proceed independent of the thyroid involvement. My instincts tell me to cancel the uptake appointment or wait and find a more deliberate endocrinologist. Does anyone have any advice?

[Anonymous September 28, 1998 at 8:10 pm Post count: 93172]

#1148356

If you don’t feel comfortable at all with your doctor, you should see about
finding another one. You need to have a good relationship with your doctor
in order to get good health. We just ran into a situation where my hubby
was sent to see a surgeon about his gallbladder. All the doctor would talk
about was my hubby was high risk and would have a heart attack on the table.
He wouldn’t discuss options and didn’t even perform a proper exam. Needless
to say, my hubby called our PCP and we had a referal to a new surgeon. Outcome,
he found a doctor who was willing to discuss all the options, answered all
his questions and decided to wait a bit before operating because he wasn’t
sure taking out the gallbladder would solve the problem. He prescribed a
course to follow for now (poor baby has to go on a diet and start getting
more exercise). As for the high risk, the new doc said no way! Moral of the
story: find a doctor who you are comfortable with.

Jean C

[Anonymous March 25, 1999 at 9:58 am Post count: 93172]

#1148357

Has anyone gone through a hyper stage and find that you can’t figure out how you feel anymore? This is driving me crazy. When I was anxious all the time all I felt was anxiety about everything. Now, I cannot tell if I am excited, anxious, nervous, happy, etc. Everything seems out of whack or I am emotionally unstable. I am afraid of everything. Afraid to go back to work, go out, go to the doctor, etc. Will I get over this emotional confusion?

[Anonymous March 25, 1999 at 10:47 am Post count: 93172]

#1148358

Hi Janie,

In one word…yes, you will get over this emotional
confusion. I went through a period when hyper of realizing
that I didn’t know which “me” I was gonna wake up with in
the morning! I just chalked it up as some more craziness
from this disease and hoped that I would eventually “find
myself” again. Guess what? It worked. One day I realized
that it sure seemed like a long journey, but somewhere,
somehow the “me” I knew before all this started was indeed
back…and she hasn’t left me since. So hang in there…keep
taking a step forward. You will eventually come out “on
the other side” of all this. I wish you the best…

Sheila H.

[Anonymous June 3, 2004 at 12:04 am Post count: 93172]

#1148359

I was just diagnosed and have enjoyed this BB. I have learned a lot reading.

I saw my Doctor 3 weeks ago after my GYN did a blood test and told me to make an appt with doctor because my thyroid was high. He did some more test and a scan and made an appt with an Endo, and about 10 days ago was diagnosed with Graves Disease.

I am not sure how long I have had this, and am not sure if I need to make a decision about what I am going to do now. My eyes have been very dry and get irritated easy for a few years, but my thyroid was fine year and a half ago. Does graves effect your thyroid before your eyes?

I am so stressed out. My job is very stressful, and that does not help. I decide that I am going to go on vacation (2 weeks away) then decide what to do.

I am taking Atenolol now for my heart rate. My pulse is averaging about 90 resting and about 110 doing any activity. I am not sure what it should be. I see my Physician next Tuesday and have lots of questions for him.

Is there anyone that has chose surgery instead of the RAI? I have a foster son who is a year old, and have also heard that RAI could make your eyes buldge out more.

Thanks again for this BB

Good luck to everyone.

[Anonymous June 3, 2004 at 9:58 am Post count: 93172]

#1148360

Welcome to the board. It might be a good ideal for you to pick up a couple of books on Graves Disease. We list several on our home page. Two that are very well written is The Thyorid SourceBook by Sara Rosenthal and the other is Graves Disease in Our Own Words, by Jake George and Nancy Patterson.

Graves Disease can effect your eyes by cause muscle swelling behind them. Also there is Thyroid Eye Disease (TED) that is a separate disease from Graves. Has the doctors said anything about that. The doctors use caution with the RAI and the eyes with a dose of predisone. I for one had RAI and no predisone and my eyes are fine they do not budge. So not everything is a given.

When you get your books you can read about the 3 treatments for Graves and that will help you decide which one is best for you.

Diane B On-Line Facilitator

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