[LBKT]

#1019087

I’ve recently been diagnosed hyperthyroid. I’d never heard of any of this before and am just learning about it all. My eyes are bulging. My vision is blurring. I’m 42 and am not having any more children. I have a 17 year old son. I want to do everything I can to try to avoid having to take thyroid hormone replacement the rest of my life. I want my eyes to go back to normal. I chose treatment of 10mg Methimazole once a day for 15 months instead of radioiodine or surgery. I don’t want to give up hope that I’ll be one of the lucky one’s that goes into remission. My Endocrinologist said my thyroid uptake scan shows there’s no sign of cancer causing the hyperthyroidism and that it would be very expensive to test to know for sure if I have Grave’s Disease or not, and since treatment is the same either way, it’s not really necessary. I have reasonably good medical insurance. I’m interested in knowing one way or the other, Grave’s Disease, or not. Do you agree with my Endocrinologist that it really isn’t necessary that I be tested for Grave’s Disease now that I’ve already been diagnosed hyperthyroid?

[Rfayley]

#1069107

Hi LBKT. I was just diagnosed with Graves Disease last week and still have quite a bit to learn, but from what I understand, bloodwork would measure the amount of thyroid hormones & a thyroid uptake would be able to determine/confirm if it is Graves Disease. A high uptake of radioactive iodine indicates Graves’ disease. I believe mine was 74%. Since you have good medical insurance- keep pushing the doctors. Good Luck!

Gayle

[ewmb]

#1069108

Hi,
Sounds like you may have thyroid eye disease, TED. There are lots of people on this board who have that and can tell you about that. If you’ve had an uptake test then your endocrinologist may be talking about having the antibody test for Graves. Your uptake can be a diagnostic tool for Graves. Did you have a scan as well? That would show a picture of the thyroid and the fill in pattern can be another diagnostic indicator for Graves. Having radioactive iodine can make your TED worse so that may not be your best option for treatment. You can take antithryoid medications or surgery is another option. There are other things that can cause hyperthyroidism so I wanted to know if mine was Graves or something else. Good luck with your medication. It works for a lot of people. I was in remission for about a year and then it all came back. I chose RAI as I didn’t have any eye involvement and had it about three months ago.

ewmb

[Kimberly]

#1069109

Hello – Personally, I would get the additional testing done to confirm a diagnosis. You will probably want to see an ophthalmologist for the eye issues, and my guess is that you would get more appropriate treatment with a definitive diagnosis of Graves.

Your eye involvement would *seem* to indicate Graves, but I would want to know for sure.

Also, you mentioned a 15-month timetable for the ATDs…hopefully, you will be getting blood work done every few weeks to ensure that your dosage is correct. Many people find that their levels fall quickly on ATDs, and the dose need to be reduced to keep them out of hypO territory.

Good luck!

[runlacie]

#1069110

What additional testing do they mean? The antibody blood test? That should be relatively inexpensive and if it is positive you would know for sure, but you can have Graves’ and still have a neg antibody result (I think around 90% Graves’ have positive ab’s). You say you have had the uptake scan- I’d think that would be more expensive than the antibody test. But if you had the scan and it showed an increased uptake and your gland looked like it took up the iodine equally throughout (homogeneous and uniform is what mine says) PLUS you have the eye involvement, that should be enough for a diagnosis. But not sure why they wouldn’t just go ahead with the antibody test anyways?

[LBKT]

#1069111

Hi Rfayley, thank you for your reply. I have had both a blood test and the thyroid uptake scan but the doctor still said ‘testing to be sure it was Grave’s would be expensive and wouldn’t change treatment’. I think she did say my uptake was 0.2. Does that mean 20%? Is that too low for Grave’s? Thank you for the encouragement. Yes, I think I’ll push for a definitive test.

[LBKT]

#1069112

Hi ewmb, thank you for your reply. Am I understanding right that TED is a separate condition from the bulging eyes of Grave’s? I have had the thyroid uptake scan so I guess the endocrinologist means the antibody test. Is the antibody test a blood test? Some other scan? Something else? I think the uptake fill in pattern showed the whole thyroid. Regardless if the bulging eyes of Grave’s and TED are separate conditions, either way the eyes are made worse by radioactive iodine, right? The anti-thyroid medicine is my first choice. I don’t think I’d be comfortable with the radioactive iodine anyway if I can avoid it. If surgery ends up being something I need to consider, I’ve been told that in addition to the concern of damaging the voice because of a nerve near or in the thyroid, one needs to be careful with the ‘para’thyroid. I don’t know what the ‘para’thyroid is or what it does. Can the thyroid be removed without damaging the ‘para’thyroid and still stop the hyperthyroidism? Did the RAI also deactivate your ‘para’thyroid? I hope all is going well for you since the RAI. Thanks again.

[ewmb]

#1069113

I don’t know a lot about the TED. I think the bulging is a part of that. Others can answer that definitely. The antibody test is a blood test. I never showed any antibodies for either graves or hasimotos. My dad has graves my mom hashimotos. My endo says that it’s not unusual to have no antibodies show up as the test isn’t as sensitive as it should be. I think the RAI isn’t good for eyes. I asked my husband about the predisone before RAI for those with eye problems. He is a pharmacologist and works with radioactivity. He said that the predisone would have no effect on protecting the eyes from radioactivity but there might be a reason he doesn’t know for other protections.

Your parathyroid glands are not affected by the RAI as far as I know. You can look on webmd and find articles about the parathyroid glands.

There are others here who have had the surgery who would be able to tell you about the risks there.
Keep on asking questions, education helps you feel more in control.

ewmb

[Author]

Posts