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...
And I'm exhausted from all the trouble I had getting registered and set up. LOL My e-mail program didn't want to work with the newest update, so there was a time there when I thought I might not make it in here due to needing to verify my address, then the computer froze up when I tried to add an avatar. Good grief.
Being new, I added stuff about me to my profile like a good girl, added a photo of my beautiful eye, complete with a bit of info about my TED.. but not it's asking I add tons more to this group membership. Tell you what.. I'll get to that later. ;)
Linda !
Surprise, surprise. I figured if your here and a regular poster, this must be an okay group.
Dairytech,
Well done. I remember when you were first diagnosed and appeared over at Elaine's site asking questions. Bet you didn't know others were cheering you on from the side lines.
Short intro for this thread:
I'm in the count down for my ninth year in remission, after 3 1/2 years on PTU, an following that up with 2 years on a low dose of replacement hormone to help give my thyroid a bit of a rest, and prevent hypo ...while any remaining blocking/binding antibodies had time to drop.
My own personal version of the standard block and replace therapy (BRT).... but without the initial ATD and replacement hormone at the same time. Back then the BRT was done with very high doses, and at that time I didn't think that was right for me.
Being new, I added stuff about me to my profile like a good girl, added a photo of my beautiful eye, complete with a bit of info about my TED.. but not it's asking I add tons more to this group membership. Tell you what.. I'll get to that later. ;)
Linda !
Surprise, surprise. I figured if your here and a regular poster, this must be an okay group.
Dairytech,
Well done. I remember when you were first diagnosed and appeared over at Elaine's site asking questions. Bet you didn't know others were cheering you on from the side lines.
Short intro for this thread:
I'm in the count down for my ninth year in remission, after 3 1/2 years on PTU, an following that up with 2 years on a low dose of replacement hormone to help give my thyroid a bit of a rest, and prevent hypo ...while any remaining blocking/binding antibodies had time to drop.
My own personal version of the standard block and replace therapy (BRT).... but without the initial ATD and replacement hormone at the same time. Back then the BRT was done with very high doses, and at that time I didn't think that was right for me.
{{{hugs}}} :-)
I'm so glad your the first o notice me here. I had checked this group out long ago when Dairytech first set it up and was so happy to see another spot get going. Later I noticed you and knew they had a great poster. so.. no need for me. Unfortunately most of us long timers in remission forget to check back as much as we really should.
But, being the " PTU Queen" as Jody used to call me, it really seemed you could use a little help. Not sure why, but I've managed to get that old angry to see such a good patient being mismanaged feeling going here today.
Gosh.. I just remembered. Not sure if you remember, since I didn't post a lot there, but the first time we met was back on the old ithyroid yahoo list. Boy.. that was a while ago. So many Graves' friends me have met, and still see around since then. Pretty amazing really.
Your sure a valuable asset here. :)
I am now using on the LDN (Low Dose Naltrexone) to help with the multiple autoimmune diseases that I have. I'd like to see all the antibodies going down to zero.
I believe my issues are much more complicated and a lot to work with compared to yours even though I do the similar things as you did to achieve remission. That includes diet and such to reduce the antibodies.
More later.
{{{hugs}}} :-)
That is awesome that you have sustained remission for 9 years!! Awesome! Thanks for bringing us your story, it brings hope for those of us trying to get to remission once again!
I am so excited to hear about your long remission! I am in remission right now and have been off of all thyroid meds for the last 18 months. I had to alter my diet to keep my thyroid eye disease under control, and it seems to have reversed itself. Do you eat any special diet or are you able to just eat whatever?
Thanks for posting! You know, at first, I was so discouraged when I was diagnosed with Graves' because all I ever heard was that remission was absolutely impossible for all Graves' patients, if I did achieve it, it would we fleeting at best so I was stupid to hope for it, irresponsible to even think about trying for it and should just suck, suck, suck down RAI immediately unless I was suicidal. I kept getting this image in my mind whenever my endo would talk about my thyroid like it was this incredibly dangerous ticking bomb that was going to explode and take out the whole town, lol!
I'm doing fine so far. It seems like my "diseased thyroid" has healed up somehow. Maybe I'm just weird.
Thanks so much!
Hannah
It's getting late here and I want to reply to so many nice welcome greetings, but first I'm going to check in, where I left off with the newest Pam.
Catch all of you a bit later.
(((hugs)))