Thanks for answering me, Abby.
I think it may be a combo of the MG symptoms and elevated thyroid levels. I did have more tests than TSH, but they only gave me the TSH results and I don't remember what they were, but sounded OK to me. I was surprised because I was feeling so hyper thyroid and just knew that was what the problem was.
Again, I don't know if it is just a fluke, as I am pretty flukey, but I did not take my thyroid meds yesterday or today, and I felt improved yesterday, and just a little twitchy, and today so far have had no twitches or weakness at all. In fact I have been outside doing things I have been unable to do for a while now. I am coming back in to rest and stay hydrated.
I am actually trying to provoke a little weakness so I can see if it is the meds making me twitch.
I could just be experiencing a good MG day. It is so hard to figure out when you have overlapping conditions.
I appreciate your input and will post later how this experiment comes out.
I am hoping, too, that they at least let me try the mestinon to see if it makes a difference.
I looked at my tongue just now and it does twitch a little when I try to hold it still. Don't know if that is how it always does or not, since I have never checked it for twitches before.
Thanks,
Linda
Quote:
Originally Posted by Stellatum
Hi. I think it's worth having your thyroid checked again. Do you know what tests they ran last time? I ask because there's a lag in the TSH. A TSH test will tell you what your thyroid was like a couple of weeks ago, not what it's doing the day you have the test. If the ran a T4 and a T3, or best of all a free T4, then those tell you what your thyroid's doing now.
Try this: go to the mirror and stick out your tongue (that should get your day off to a good start, too). Do you see a tremor? A hyperthyroid tremor can be subtle, but you can always see it in the tongue. When I'm hyperthyroid (I have Graves, in and out of remission) I twitch like you're describing (like the about-to-cry thing). Also, check your fingernails: is there dirt trapped in them that's hard to wash out? Hyperthyroidism makes the nails grow fast and they separate early from the nailbed. But I've only noticed that in myself when I was pretty severely hyper for a long time.
Hyperthyroidism can cause muscle weakness, especially if you've had it long enough to actually lose muscle mass. But the weakness you describe sure sounds like MG to me, for whatever that's worth, especially the neck weakness and the sagging face. It's common enough to have negative blood tests for MG--plenty of us here tested negative (and some tested positive later). If you were diagnosed by nerve tests, I wouldn't doubt that.
There is a condition called thyrotoxic periodic paralysis (most common in Asian men) which causes episodes of weakness in people whose levels of thyroid hormone are too high. If you find out you are indeed hyperthyroid, and if you get the numbers under control and then all the symptoms disappear, that would be worth considering in retrospect. It's really rare.
I find that coffee helps my MG symptoms a lot. I hope they will try you on Mestinon, which is a drug that helps symptoms. It's very short-acting (it works for about four hours at a time). It's considered very safe, and many neuros will give it to a patient even if it's not established that the patient has MG, just to see if it helps.
I hope you and your doctors figure all of this out soon!
Abby
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