TED: Duration of Hot Phase

[Guest guest]

I thought my version of TED wasn't that bad until I reviewed some photographs

I had developed recently. Depressing. Am I remembering correctly that the

" hot phase " of TED generally runs for 6 months to a year (I hope!)?

In the meantime, I'm going to try to avoid being photographed this holiday

season.

M.

[Guest guest]

Hi ,

Sorry you are not liking what you are seeing in photos. That was the first

time I realized the difference as well. Two Christmases ago, I had the major

" deer in the headlights " look in pictures and have not allowed many to be

taken since.

According to what I have read, the " hot phase " where the disease worsens is

3-6 months and then can be followed by a plateau that can last several years.

I am on the plateau myself. Unfortunately, the disease can remain active

for 5 years, even tho the initial worsening stage is over. I have had some

improvement with the feel of my eyes and the redness is gone, but the

proptosis, diplopia and swelling are the same as they were a year ago and I

am about 2 & 1/2 years into this TED. I recently went thru a hypo period and

the swelling was a little worse as well as the pain in my left eye returning.

Since my thyroid levels are high end normal right now, they feel much

better. So keeping your thyroid levels in check is important.

Treatment for hyperthyoidism can affect your eyes as well. RAI can make it

much worse. Studies show that thyroidectomy doesn't have this effect on TED,

but a member at another group had a thyroidectomy and her TED got much worse

after. Since you are on Tapazole, you are on the treatment of choice since

you also have TED. The ATD's lower the antibodies that attack the thyroid

and the eye tissues.

5% or less of TED patients get it as severly as I have it, so try not to

worry too much! The odds are in your favor! If I can ever help, let me

know!

God bless,

Hashi's, Graves, TED worsened by RAI Sept. 2001

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Hi ,

Sorry you are not liking what you are seeing in photos. That was the first

time I realized the difference as well. Two Christmases ago, I had the major

" deer in the headlights " look in pictures and have not allowed many to be

taken since.

According to what I have read, the " hot phase " where the disease worsens is

3-6 months and then can be followed by a plateau that can last several years.

I am on the plateau myself. Unfortunately, the disease can remain active

for 5 years, even tho the initial worsening stage is over. I have had some

improvement with the feel of my eyes and the redness is gone, but the

proptosis, diplopia and swelling are the same as they were a year ago and I

am about 2 & 1/2 years into this TED. I recently went thru a hypo period and

the swelling was a little worse as well as the pain in my left eye returning.

Since my thyroid levels are high end normal right now, they feel much

better. So keeping your thyroid levels in check is important.

Treatment for hyperthyoidism can affect your eyes as well. RAI can make it

much worse. Studies show that thyroidectomy doesn't have this effect on TED,

but a member at another group had a thyroidectomy and her TED got much worse

after. Since you are on Tapazole, you are on the treatment of choice since

you also have TED. The ATD's lower the antibodies that attack the thyroid

and the eye tissues.

5% or less of TED patients get it as severly as I have it, so try not to

worry too much! The odds are in your favor! If I can ever help, let me

know!

God bless,

Hashi's, Graves, TED worsened by RAI Sept. 2001

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1

[Guest guest]

Hi ,

Sorry you are not liking what you are seeing in photos. That was the first

time I realized the difference as well. Two Christmases ago, I had the major

" deer in the headlights " look in pictures and have not allowed many to be

taken since.

According to what I have read, the " hot phase " where the disease worsens is

3-6 months and then can be followed by a plateau that can last several years.

I am on the plateau myself. Unfortunately, the disease can remain active

for 5 years, even tho the initial worsening stage is over. I have had some

improvement with the feel of my eyes and the redness is gone, but the

proptosis, diplopia and swelling are the same as they were a year ago and I

am about 2 & 1/2 years into this TED. I recently went thru a hypo period and

the swelling was a little worse as well as the pain in my left eye returning.

Since my thyroid levels are high end normal right now, they feel much

better. So keeping your thyroid levels in check is important.

Treatment for hyperthyoidism can affect your eyes as well. RAI can make it

much worse. Studies show that thyroidectomy doesn't have this effect on TED,

but a member at another group had a thyroidectomy and her TED got much worse

after. Since you are on Tapazole, you are on the treatment of choice since

you also have TED. The ATD's lower the antibodies that attack the thyroid

and the eye tissues.

5% or less of TED patients get it as severly as I have it, so try not to

worry too much! The odds are in your favor! If I can ever help, let me

know!

God bless,

Hashi's, Graves, TED worsened by RAI Sept. 2001

http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1