[Bobbi]

#1062659

Well, you’ve truly been given a lot to ponder, haven’t you! I am assuming that the "Graves" disease you are talking about is the one that has to do with the eyes. (You mentioned double vision.) If, on the other hand, you are also hyperthyroid, I would recommend that you get a second opinion about the wisdom of waiting three months for treatment. I’ll explain. The eye disease typically is not treated. So waiting isn’t likely to be an issue. The types of interventions available to treat the eye disease have significant negative side effects, so unless it is necessary to prevent blindness, we usually are given no treatments. OUr doctors monitor the progression of the disease, and only intervene if necessary. The eye disease typically runs a course of "hot phase" followed by a remission that typically lasts a long, long time. During the hot phase we get the soft tissue bulging, the double vision, the protrusion. Those symptoms typically abate somewhat once the hot phase is over. How much they abate depends upon how severely the eye muscles were impacted. In my own case, for example, I went from doubling of vision to no double vision unless I am very, very tired — with no treatment, just observation.

But, if you are hyperthyroid, it can be dangerous to wait UNLESS the treatment they give you for the myasthenia gravis suppresses your immune system. If it does that, then you might have a remitting of all the symptoms of the Graves (including the eye issues). There may be drug interactions that the doctors are worried about with treating both at the same time, but being hyperthyroid is not a condition that should be allowed to continue for any length of time. Being hyperthyroid causes muscle loss (we do get weak simply because of the excess thyroid hormone) and can adversely impact the heart. So, if you are hyperthyroid, in addition to having thyroid eye disease (TED) issues, double check about why the hyperthyroid treatment needs to be put off.

[ConnieJo]

#1062660

Thanks for the advice Bobbi. I am hyperthyroid. I am waiting for my referral for a second opinion. All the treatments for both diseases sound scary…the more research I do – the more overwhelmed I become! Im trying to stay strong….but catch myself often loosing hope to be ‘normal’ once again.

[snelsen]

#1062661

Hi Connie Jo,
Of COURSE you are overwhelmed! I am not sure if you will find someone on the board with that particular combo, but you might try writing myasthenia gravis in the search engine, see if anyone pops up. You can also search the archived posts.

I agree with Bobbi’s thoughts about not waiting so long to treat your hyperthyroid symptoms. It is a very good idea to get a 2nd opinion, and when that permission is granted, I suggest that when you call to make the appointment, be sure to tell them you have been diagnosed with Graves, you are hyper now, and have not begun treatment. That is enough information for the voice on the other end of the telephone, for they are usually not medically trained at all. But I suggest you ask for the "first available new patient appointment" (their jargon.)

Another advantage of treating your hyperthyroid state, is that everything will seem more manageable and less overwhelming to you when you re less hyper. At least that sure was my experience being hyper. EVERYTHING was overwhelming, I was snappy, irritable, anxious, hot, crazy hungry, with a racing heart. Not fun.
I know that your endo and neurologist need to consult with each other.
Meanwhile, it seems that you have done some research on both MG and GD. I am glad you found this website, it’s a good one.
A very good reference for MG is the NIH site, http://www.ninds.nih.gov/disorders/myas … gravis.htm

I had a couple good friends with MG who have had it for over four decades. Now I have not kept in contact with them, but there MIGHT be a good supportive website for MG. Check around.

Regarding Graves’, really, it is manageable, albeit darn frustrating sometimes, for it takes a while to get back to the normal you. But we all are doing it, and in varying stages of the process. Look forward to hearing from you again.
Shirley, another Graves’ person!

[ConnieJo]

#1018091

Hello – I am newly diagnosed (Feb 2nd) with Graves disease – and also with Myasthenia Gravis. Has anyone out there been down this road? My Primary doc and the neurologist who diagnosed the Myasthenia made a decision to offer me treatment for the Myasthenia first and treat the Graves ‘in about 3 months’. I have constant double vision and chronic muscle weakness (due to the MG) I am feeling scared and confused about what to do. I’m hoping to find someone who has already undergone treatment for one or both autoimmune disorders that will share that experience. Thanks

[Kimberly]

#1062662

ConnieJo – I would echo everyone else’s sentiments that you *do* need to get treatment for your hyperthyroidism. Remember, the squeaky wheel gets the grease! ” title=”Very Happy” />

I know a lady who has both Graves’ and Myasthenia Gravis, and she said that I could pass on her contact info to you. Please check your private messages for her e-mail address.

Take care — and keep us posted!

[ConnieJo]

#1062663

Thanks so much to you all for the advice and direction for resources! ” title=”Very Happy” />

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