Ducky said...
Hey BlackWidow - first off, welcome to healing well! Great to have you.. I was reading what you wrote and OMG, we sound the same! I am 33 years old.. I have/had Grave's.. TED.. Psoriasis.. Psoriatic Arthritis and Spondylitis.. I was diagnosed with Graves May 1998, I had a total thyroidectomy Sep 1998, and have been on Synthroid ever since (however my levels are still of and the docs think I now have Cushings) Anyways- I also have TED, and have had 3 surgeries on my eyelids to try and "fix" the damage done. However, they still don't look like they used to. I am contemplating having Orbital Decompression to possibly "fix it" for good... I was diagnosed with Psoriasis in 1998 as well.. and diagnosed with Psoriatic Arthritis and Spondylitis Mar 2005. I am on Enbrel, and it has helped my PsA and Spondylitis TREMENDOUSLY, but since I have had my thyroid removed, I don't know if it would have helped me or not.. hhmm... let me look some stuff up and I will get back with you.. Again, welcome to the site!
Duck
Thank you for the welcome.
As I think about this more, I suppose it could also have a possibly slight effect on RAI hypothyroid or Euthyroid from surgery or meds - if the theory holds at all, there may be a slight increase in the TSH level. Graves doesn't go away because the thyroid is nuked/removed - the Auto-immune factor is still in play.
Before I left to see my dermo today I caught a quick glance at a post on another board, person was concerned about weight gain and enbrel - posted a TSH level of 4.60 pre enbrel and 7.78 6 months after starting it. God - I can barely manage anything above -.05 I can't even wrap my brain around trying to function up in those ranges. The first time I was 'treated' for GD I started taking meds in July, by September I'd gained 80lbs. I know I'm at least -.5 now - doctors is going to have a fit on the next blood panel. I can usually tell where I am before the needle pricks the skin, I've been in and out of 'remission' so many times. I don't know if the 'new guidelines' have creeped up to Canada yet with a range of .3 to 3. I feel like I am spinning my wheels sometimes, if I let them treat me to what thier numbers discribe as Euthyroid - I gain weight like crazy - which increases the strain on my joint, which I can barely manage now, I feel like crap, tired.. no not just tired boardering on lethargic, I get sick all the time, the broncitis always comes back when I'm Euthyroid. -.05 is the only level I have ever felt comfort at. I don't balloon up and am as close to 'normal' as I ever want to feel. My Endo is bound and determined to nuke my thyroid, says the weight gain isn't the meds however, he know, I know he's full of it.
The only time I gain that type of weight is when he's got me on meds and is trying to get my range above 0. I am bound and determined he isn't nuking it. We haven't spoken in well over a year. My GP is afraid to script tapazole - however - he's just going to have to suck it up and do it. :)
I had undiagnosed but symptomatic Graves from about 12-30 ... that IS 'normal' for me. I don't like 'every' aspect of being hyper - however it beats out anything I ever experienced being med induced hypo then euthyroid. I do think about the heart strain, however that can be managed with beta-blockers. At least that's what I tell myself ;)
Enbrel has, in some cases, improved TED. They won't commit to comment on the possible effects on Graves itself because they haven't done research into it.
I can't help but wonder - did you have fairly stable levels after surgery, before starting enbrel. You mention the levels are off at the moment?
Post Edited (blackwidow) : 5/10/2007 11:24:07 AM (GMT-6)