Hi, everyone. I have had Graves disease for 16 years. I've been in and out of remission on PTU and methimazole. My relapses have been getting steadily milder and further apart. I think I'm having another relapse, and normally I'd take methimazole for a few months. But I now have myasthenia gravis as well. I've had it for three years. It seems to me that all the treatments available for the Graves are bad for the MG--but untreated Graves is also bad for MG.
Methimazole and PTU seem to have an immunomodulatory effect that really sets off MG. General anesthesia is really dangerous for people with MG, so I don't want to risk a thyroidectomy. And I'm worried that if I have the RAI, it might damage my vision (MG causes double vision as well). Also, I'm on a large dose of immunosuppressant drugs (azathioprine/Imuran) for the MG, so the idea of radiation makes me nervous--I think I'm more susceptible to cancer.
Does anyone have any ideas--any suggestions about some other treatment I might look into? I really feel like I'm up the creek here. My endo knows nothing about MG, and my neuro knows nothing about Graves.
To anyone who happens to be reading this, I'd like to mention that thyroid problems and myasthenia gravis often come together, though MG is much rarer. Anyone with fluctuating muscle weakness, especially droopy eyelids, should not just put it down to one more crazy thyroid symptom, but should see a neurologist!
The following user gives a hug of support to Stellatum: Davidl1978 (01-06-2013)
I'm sorry to hear about all the trouble you're going through. I'm currently going through thyroid issues of my own, and my wife suffers from MG, so i know all about your worries.
My wife (at 33 years old) had her thymous removed about a year ago, and it was the best thing she decided to do. Her symptoms are muscle fatigue in her arms and eye muscles, if she's not on top of her medicine. Yes, you are correct. If someone with MG has to have surgery you need to have plasmapheresis to clean you're blood of any antibodies. She has had one surgery since her thymectmy and did awesome. She is very lucky to have such a wonderful MG doctor and knowledgable surgical team. She makes sure her surgeon and anaesthesiologist are knowledgable of MG well before surgery. She's a tough lady! I couldn't be any more proud of her!
As for your concerns, there is a National MG website, Google it to see if you can find a specialist near you. You can also find a support group near you that should give you names of the specialists that can serve you better.
I really feel for you. I know from my own thyroid issues that some days are better than others, but having MG with it must really be concerning. I hope my two cents can point you to a new direction.
Ask any questions you may have. I be happy to share my wife's experiences with you.
Last edited by Davidl1978; 01-06-2013 at 06:35 PM.
The Following User Says Thank You to Davidl1978 For This Useful Post: Stellatum (01-06-2013)