[Ski]

#1075619

Hi Jane,

Typically, if ATDs are going to trigger a remission, it takes them much longer than a month and a half.

The Graves’ antibodies attack and ultimately cause the thyroid to fail prematurely in all Graves’ patients. It’s possible that you have been suffering so long that your thyroid is completely dead already, but that is a pretty long shot. It’s more likely that you’re seeing a fluctuating in your antibodies, which throws everything out of whack. Unfortunately, we don’t have any information on WHY the antibodies fluctuate, but they go up & down, and that can make your symptoms accelerate and disappear randomly. Stay in close touch with the doctor. I’m glad you have a standing order for lab tests, that can head off all kinds of trouble.

Of course you don’t want to start replacement thyroid hormone until it is determined that you absolutely need it, so the "wait and see" for now makes sense. If you are hypothyroid for a significant period of time, then taking synthroid would not make you hyper again, taking the right amount would make you normal (rather than hypo). Finding the right amount for any of our thyroid meds is tricky, so take on patience as your best friend.

[JaneQ]

#1020009

Hi again,
I couldn’t find anything in the archives or new postings about "Remission" after taking tapazol. I was only on 10mg tapazol for a month and a half and I am now HYPOthyroid. My endo said it is a wait and see process now. Doing RAI won’t matter as I am hypo. I may stay hypo for weeks, months, or years. I have standing orders to get my labs if I start with any of the Hyperthyroid symtoms again so that is a good thing.I may need RAI down the road of life but for now I do not. I will be put on syntroid at some point if my thyroid stays hypo for sometime.

Has this happened to anyone else?

I know that graves’ is a very tricky, but, if I am on syntroid won’t I just go hyper? Has graves’ killed my thyroid?

My endo said there is 10% of graves’ patients that this happens to ( graves’ kills the thyroid ) He said It could have started from a great stressor in my life set this off and that is why it came on quick and 3 months later I am hypo. WOW. Graves’ is a rollercoaster ride! But I will always be on guard. I will always be hopefull.
Thanks again,

JaneQ

[ohio_mom]

#1075620

Jane Q, Just wanted you to know that there are others out there that are hoping for long term remission. My Graves was activated due to the stress of the death of my husband. I am currently on 2.5 ml of Tapazol every other day and had started out at 10 like you. I do not allow my self to react to stress the same way I did back then. Good luck to you and let us know of your progress. Claudia

[James]

#1075621

JaneQ

It’s interesting that you haven’t found any postings of “Remission” after taking Tapazole. That topic had come up a number of times over the years from individuals who for whatever valid personal reason, choose to stick with ATD therapy in conjunction with their Doctors supervision of course. As Ohio mom has stated, there are a number of people who are “hoping for long term remission”. There are a number of us who over the years have enjoyed a sustained (long term) remissions (I am such a person). Did it come overnight? NO. Were there some bumps along the way . . YES. Does it require discipline . . Yes again. Achieving remission is a combination of a lot of those things and in is often driven by a lot of self determination. Can we go WITHOUT one of the three approved treatment modalities . . . Definitely NOT.

As for the part about 10% of patients where “Graves kills their thyroid’. The way it was explained to me is that it doesn’t happen overnight. On a micro scale, over time, the thyroid can slow down as a result of the onslaught on the thyroid gland by the suspect Graves antibodies. The aging process alone often times is enough to “kill” or cause the Thyroid to “peter out” (for lack of a better term). One of my aging parents for example is now on thyroid supplement as a result of aging NOT Graves.

Lots to learn for sure. Between your Doctor; blood test results and your personal experiences, you will develop the ability to know when things are running amok, and you will be in a better position to understand what is going on in your body, and what you have to do about it.

Take care,

James

[JaneQ]

#1075622

Short Lived remission, 11/5/08 I went back to Lab. Hyper again. Heart racing @ 138 results on free T-3 ,TSH and T-4 were all wacko. I am schedualed for RIA on 12/5/08. I hope all goes well as it should… seems very safe…most uninvasive …I am Happy to get on with the treatment of graves. Unfortunately some people wait years to get where I am. I has been less than four months from diagnosis to date.I hope that will shed light to others as to how unique this disease really is. I don’t want to be Hypothyroid, I have been around 100 lbs most my adult life. I have told my endo to please watch me closely, What will I do If I gain ALOT (20-50lbs) He said not to worry, I have a good matabolisium? HELLO Hyper-thyroid? I am 43 I have a self image of me. I hope that they can calibrate the corrrect amount of RIA to keep me stable for some time and the synthoid too.

On the "Graves Rollercoaster of life" Heck I didn’t have to pay for parking at this amusement park thats good.

Let me say this:
Life is what it is… Have fun with YOUR life…No matter what comes of it.. Laugh at yourself and realize we are all created equal …what happens, happens for a reason,that is fate,karma or gods will and we should use it to better ourselves and those around us. I hope we all learn from our Disease in one way or another. Blessings to all … LIVE ON

JaneQ

[Bobbi]

#1075623

One point for future reference: when I was going through the process ten years ago, remission was defined as being able to go off the medication and sustain normal levels of thyroid hormone for one year. Now, obviously, this is an arbitrary definition, but the point is that the antithyroid drugs do have the potential to make us hypothyroid and simply regaining normal levels of hormone, or even going hypothyroid temporarily,while on the medications does not mean that there has been a remission.

The same balancing act has to go on with the antithyroid meds that many of us have later with the replacement hormone: we have to find the "right" dose — the Goldilocks dose. While you still have a complete, and diseased, thyroid that balancing act can be even more difficult. Antibody levels rise and fall for no well-understood reason, so adjustments are often required more frequently than one would like.

I do wish you well. Some folks do indeed get remissions that last a few years, and since that is your wish, I hope you succeed.
Bobbi — Online Facilitator

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