Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
This is another first-hand account from a person with TED. (From GravesOphtalmopathyTEDsupport Yahoo group):
Hi Dee,
To determine when you are "in remission" (the cold phase) of TED is really not that difficult. There is one blood test that will show your level of Graves/TED activity. The TSI (thyroid stimulating immunoglobin). This should be tested only once every 6 months
until you get in remission.
For the TSI, most doctors don't even understand it. But it is really quite simple. The test result for "normal" range is 0-130, so the test result needs to be below 130.
Secondly, it needs to stay below 130 for at least 6 months. So when you get a reading below 130, the TSI should then again be tested
every 2 months....for a total of 3 or 4 tests in a row, with result always less than 130.
On top of this, your eyes when in remission should not vary quite as much. There will always be minor changes some days...but at
the point when eyes are constantly changing, a person is NOT in remission.
I was diagnosed Graves & TED in January, 2001. I was advised that there were 3 choices, and that I could choose RAI, anti-thyroid drugs,
or surgery/thyroidectomy. I chose taking the anti-thyroid drugs.
Anyway, it took me until about the middle of 2006 before I got to where my TSI reading went below 130. (It was at 125...just in the
normal ranges). Anyway, I had it checked 4 times in a row...each one of those time 2 months apart...and it was always below that
130 mark. Also, my eyes felt like they were not changing that much anymore on a daily basis.
Oh...I had major bulging/proptosis, severe double vision, plus red looking inflammed and very dry eyes all of the time, and my eyelids would not close all the way.
When I went into remission, they improved 90%. I still get dry eye on occasion, and so I use sterile eye drops & at night Genteal eye gel.
In April 2007, I had the first eye surgery....orbital decompression,
which made more room for my eyes and the bulging look went away. October 2007, I had Strabismus to correct the double vision. January of 2008, I had the first of 2 lower eyelid surgeries. After that, 3 surgeries so far on my upper eyelids. I will still
need 3 to 4 more surgeries. The difficult part is that each one of these requires a good deal of healing time in between the surgical procedures....3 to 6 months between eacy.
So here it is almost 2 years before starting surgeries, and I still have 3 to 4 to go. But the worst is well behind me. My eyes mostly appear to look pretty good. I do have some lid retraction on one lower eye, and one upper eyelid that came down too far. Plus I will need some Blethroplasty to remove the excess
skin and fatty tissue above my eyes & below one of my eyes. The other eyes, there is not any excess skin or fatty tissue.
So I suggest that you get a TSI test. And let us know what the test score result is. Again 0-130 is "normal range". Anything higher is indication you are still in the active, hot phase.
Some people are only in the hot phase a couple of years...and others (like me) are in it 6 years. I know two people who have been in the hot phase for 10 and 15 years (but they are rare exceptions.)
When getting the TSI, you might as well also get a TPO test to check if you have Hashimotos also.
As for Prednisone, I am a strong believer that it should NEVER be used except for extreme crisis situations or for up to 6 days
after certain eye surgeries. Almost everyone I know who was placed on Prednisone for 1 month, 2 months, 6 months, etc., they really got "no lasting help". And Prednisone has some
very nasty and severe effects on the body. Including drying the bones out, depleting the body of calcium, causing a lot of weight gain, and even worst things that I won't go into
here. When a doctor gives it "for a short course, to see if it will help".....it is almost always "only short term relief" and
when it is stopped, any benefit has gone away. (Others believe differently).
Take care & all the best,
Ron
Hi Dee,
To determine when you are "in remission" (the cold phase) of TED is really not that difficult. There is one blood test that will show your level of Graves/TED activity. The TSI (thyroid stimulating immunoglobin). This should be tested only once every 6 months
until you get in remission.
For the TSI, most doctors don't even understand it. But it is really quite simple. The test result for "normal" range is 0-130, so the test result needs to be below 130.
Secondly, it needs to stay below 130 for at least 6 months. So when you get a reading below 130, the TSI should then again be tested
every 2 months....for a total of 3 or 4 tests in a row, with result always less than 130.
On top of this, your eyes when in remission should not vary quite as much. There will always be minor changes some days...but at
the point when eyes are constantly changing, a person is NOT in remission.
I was diagnosed Graves & TED in January, 2001. I was advised that there were 3 choices, and that I could choose RAI, anti-thyroid drugs,
or surgery/thyroidectomy. I chose taking the anti-thyroid drugs.
Anyway, it took me until about the middle of 2006 before I got to where my TSI reading went below 130. (It was at 125...just in the
normal ranges). Anyway, I had it checked 4 times in a row...each one of those time 2 months apart...and it was always below that
130 mark. Also, my eyes felt like they were not changing that much anymore on a daily basis.
Oh...I had major bulging/proptosis, severe double vision, plus red looking inflammed and very dry eyes all of the time, and my eyelids would not close all the way.
When I went into remission, they improved 90%. I still get dry eye on occasion, and so I use sterile eye drops & at night Genteal eye gel.
In April 2007, I had the first eye surgery....orbital decompression,
which made more room for my eyes and the bulging look went away. October 2007, I had Strabismus to correct the double vision. January of 2008, I had the first of 2 lower eyelid surgeries. After that, 3 surgeries so far on my upper eyelids. I will still
need 3 to 4 more surgeries. The difficult part is that each one of these requires a good deal of healing time in between the surgical procedures....3 to 6 months between eacy.
So here it is almost 2 years before starting surgeries, and I still have 3 to 4 to go. But the worst is well behind me. My eyes mostly appear to look pretty good. I do have some lid retraction on one lower eye, and one upper eyelid that came down too far. Plus I will need some Blethroplasty to remove the excess
skin and fatty tissue above my eyes & below one of my eyes. The other eyes, there is not any excess skin or fatty tissue.
So I suggest that you get a TSI test. And let us know what the test score result is. Again 0-130 is "normal range". Anything higher is indication you are still in the active, hot phase.
Some people are only in the hot phase a couple of years...and others (like me) are in it 6 years. I know two people who have been in the hot phase for 10 and 15 years (but they are rare exceptions.)
When getting the TSI, you might as well also get a TPO test to check if you have Hashimotos also.
As for Prednisone, I am a strong believer that it should NEVER be used except for extreme crisis situations or for up to 6 days
after certain eye surgeries. Almost everyone I know who was placed on Prednisone for 1 month, 2 months, 6 months, etc., they really got "no lasting help". And Prednisone has some
very nasty and severe effects on the body. Including drying the bones out, depleting the body of calcium, causing a lot of weight gain, and even worst things that I won't go into
here. When a doctor gives it "for a short course, to see if it will help".....it is almost always "only short term relief" and
when it is stopped, any benefit has gone away. (Others believe differently).
Take care & all the best,
Ron
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I do feel aquirmy re-posting posts from other sites, but if it's informative I will post here.
TSI is generally thought of as a remission indicator. Yes, it would be nice to know where you are antibodies-wise.