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...
Saw the eye doctor today for further eval of need for OD, especially of right eye, per recommendation of strabismus surgeon. In April, last time I saw this doc, he said he didn't think it was needed, but would continue to observe. In May I saw strabismus eye doc who said disease was "only moderate", but he was concerned about my right eye especially maybe needing OD. He can't do muscle surgery, of course, if OD is needed. Two months later the first eye doc says it's now severe and I do need OD, not just right eye, but both. It's not an emergent situation impacting my optic nerve, but more room is needed for muscle surgery to be effective. Does that sound right? I have had intermittent throbbing, especially my right eye, over the past month, with increased surface pain, no matter how much I lubricate. Steroids have never been suggested. Maybe because it's not an emergency situation he doesn't want to risk the side effects. I'm just trying to take this all in. I'm not too keen on this surgery, but will do it if necessary to get to step 2, muscle surgery.
Next, after making such a big deal about my thyroid being stable. he said he's only worried at this point that I don't become hyper. I've been running low, but WNL. I just have felt rotten with brain fog. I finally feel as if my IQ has risen by about 20 points over the past few weeks (since MD ordered dose decrease as I was at risk of becoming clinically hypo), but eye MD worried I'll become hyper with dose reduction. (This is the dose I became hyper on this spring--I'm a little nervous myself, especially with how quickly I seemed to improve, hopefully the thyroid hormones know when enough is enough and don't rise too high...) Well, that's all well and good, but am I asking too much to feel well, and then be able to fix my eyes, too? The next step is a consult in about 2 weeks with an ENT surgeon that he works with, as the plan is to do this nasally. What sorts of things should I be asking and/or considering? Of course, I have no idea what sort of time frame anyone is talking about, and it's just a consult.
My labs 7/9/14: FT4 0.8 (0.8-1.8)
FT3 2.3 (2.3-4.2)
TSH 0.67 (0.2-4.50) Endo says not necessarily a good thing to see TSH at this point with lowered hormones (Now on MMI 3.75mg/day)
My labs 6/5/14: FT4 0.9 (0.8-1.8)
FT3 2.8 (2.3-4.2)
TSH less than 0.03 (0.2-4.5) (MMI 6.25mg/day)
Thanks in advance,
Christy
Next, after making such a big deal about my thyroid being stable. he said he's only worried at this point that I don't become hyper. I've been running low, but WNL. I just have felt rotten with brain fog. I finally feel as if my IQ has risen by about 20 points over the past few weeks (since MD ordered dose decrease as I was at risk of becoming clinically hypo), but eye MD worried I'll become hyper with dose reduction. (This is the dose I became hyper on this spring--I'm a little nervous myself, especially with how quickly I seemed to improve, hopefully the thyroid hormones know when enough is enough and don't rise too high...) Well, that's all well and good, but am I asking too much to feel well, and then be able to fix my eyes, too? The next step is a consult in about 2 weeks with an ENT surgeon that he works with, as the plan is to do this nasally. What sorts of things should I be asking and/or considering? Of course, I have no idea what sort of time frame anyone is talking about, and it's just a consult.
My labs 7/9/14: FT4 0.8 (0.8-1.8)
FT3 2.3 (2.3-4.2)
TSH 0.67 (0.2-4.50) Endo says not necessarily a good thing to see TSH at this point with lowered hormones (Now on MMI 3.75mg/day)
My labs 6/5/14: FT4 0.9 (0.8-1.8)
FT3 2.8 (2.3-4.2)
TSH less than 0.03 (0.2-4.5) (MMI 6.25mg/day)
Thanks in advance,
Christy
Currently, you are hypo with your FT3/FT4 being low. With these numbers your eyes will suffer. Your meds should be lowered, or eliminated to allow your free's to come up. What are your TSI numbers? It seems as if your doctor is dosing by your TSH which is why they still have you on medication. I went hypo in 2 weeks on 5mg, and had to come off meds to get my FT3/FT4 to rise.
All the best,
Donna
Your doc is dosing your meds by your TSH...however...he reduced your meds...that was the right call. Like most of us here...we have had to take matters into our own hands. I would do this reduction...wait 4 weeks and do labs again...if your FT4 and FT3 has not risen up enough...do another reduction...wait 4 weeks and see what happens. Ignore the TSH...a low TSH does not equal hyper because the antibodies interfere with accurate readings...its the FT4 and FT3 that are the important ones.
I had strabismus surgery...here in Canada they will only do this surgery until your TED has been cold for a year....which means its gone into remission. This surgery is meant to repair any lasting impairments this disease has left behind...Big Hugs...Kathy
But no one thinks (that would be MDs) that my eyes will improve enough to avoid the surgery, even if they were to try steroids. Anyone have experience with this? If steroids won't really help, and I'm not in crisis mode as far as optic nerve compression, then it seems to me that steroids wouldn't really make a difference in the scheme of things, as I've read the effects usually wear off when the drug stops?
Kathy, I'm very encouraged that it's possible to have so much improvement, and hope I have the same once my levels come up. I would really, really love to avoid the OD surgery, but I can hardly wait until the day the strabismus surgery is a go. The constant double vision does wear on a person a bit, especially with not being able to use a prism anymore. By the way, how long did it take for your eye muscles to go down? (And your eyes look great!)