Coexisting Myasthenia (MG) and Thyroid Eye Disease (TED)
 

I have had Graves Disease for over 10 years along with the associated thyroid eye disease (mild involvement). Thyroid has been ablated with RAI 5 yrs ago and later Total thyroidectomy 3yrs ago.

Long story short my Rt eye now has ptosis (worsens as day progresses) and the left one is compensating so the LT lid becomes more retracted the more the Rt one droops. I have never experienced double vision.

I have recently been to a Neurologist and he believes I have MG. Apparently MG & TED can commonly coexist.

He has started me on Mestinon low dose 30mg(half tab) 3 x Daily until he gets the results of Ach Receptor Antibodies test back. He did say it may come back negative and so may need to do an electrical nerve test.

I have noticed slight improvement with mestinon and noticed an increase in energy. I can tell if I am late to take the meds or if I forget to take one then symptoms worsen.

I find it hard sometimes as I quite often get a little more pain behind my ptosis eye and dryness in both not sure sometimes which problem is causing what at times. My ptosis eye closes when I am out in the sun not sure if this happens in MG or if it is from the TED.

Are there many here with both thyroid eye disease and MG ?

Those of you who only have MG and no thyroid eye disease do you experience pain and dryness in your ptosis eye at all?:confused:

Hi there -

I too had Graves. I was treated for 2 years w tapazol. My eyes were outrageously buggy. When I see neuro now for MG it is sometimes mentioned that I have a little residual eye issue from Graves but otherwise it isn't really addressed. I also have insane dry eye which completley went away on the prednisone but now that I am off it is terrible again. I feel like this exacerbates my ptosis.

Hope this helps! Good luck :)

Thanks !
 

That does help. Did you find it hard to get diagnosed with MG? Did your MG come after the Graves or before? Appreciate you insight.:winky:

It's common for MGers to also have an autoimmune thyroid disease (Graves, Hashimotos).

I came down with Graves 18 years ago, after the birth of my daughter. I have been on and off methimazole and PTU ever since, with long periods between flare-ups. I never had any eye involvement.

I had my first noticeable MG symptoms a few months after a flare-up of the Graves, which I treated with methimazole. There seems to be some connection between methimazole and myasthenia gravis flare-ups. Google the two together for a few studies.

Meanwhile, I enjoy telling people that I have Graves disease and myasthenia gravis--it all sounds so, well, grave.

Abby

Abby it sure is a grave situation :)

Pamiezz - I did find it very diff to get the MG dx. My current neuro is fabulous thou. But i did have to see several dr before it was identified.

I was dx w Graves back in 1996 and treated at MGH in Boston. My TSH levels were crazy and I was wasting away in terms of weight. Also had the classic heart palp and, as mentioned, some serious bug eyes. I fought them on obliterating my thyroid (and after 2 years of tapazol my levels went from crazy to normal -- still at v far end of normal but normal). The drs still say they have never seen a Graves reversal prior to my case but it indeed happened to me (which is how I stay positive/hopeful ab MG....anything is poss!). My poor 10 year old niece is now dealing w Graves thou.

MG has had a far greater effect on my life thou (obv for the worse). For me it all started with a very serious cdiff colon infection - everything went way down hill after that....

Let me know if you have other questions. I know the process can be v diff both emotionally as well as physically.