Thank you so much for your response. I have had a recent CT scan of the orbits which found increased orbital fat and mild bilateral exophthalmos. Eye muscles are unaffected. At least at this point. I have yet to find an oculoplastic surgeon who has wanted to help closely manage this as you mentioned. I see a third oculoplastic surgeon tomorrow who has been referred by my endocrinologist. Hoping he is the one who will take my case head on and be a light in this time of darkness. I am familiar with Tepezza and have been told it’s expensive (honestly it’s worth every penny if it helps) and that my case is not severe enough. I have also read/been told about steroids. My main issue is the inflammation and increased orbital fat that is causing my bulging and therefore strabismus/double vision. Hoping doctor tomorrow will prescribe SOMETHING and not turn me away. Now I am experiencing some eye pain.. dull aches along with painful twinges. This started in December so I’m only 4 months in… very scary. I was allergic to methimazole so I am on PTU and my T3 T4 are normal but my TSH is still <0.01. My endocrinologist told me it does take awhile for TSH to respond to medication. May I ask why you said it was difficult to keep thyroid levels stable while on medication?
Thank you again for your responses…
