[Gravesmom61519]

in reply to: New TED diagnosis #1185884

Yes i was diagnosed with Graves’ disease last year and I have been on PTU for over 6 months now and I’ve responded quite well to it aside from some side effects but my levels are all almost in normal range. I switched endocrinologists and my new one who I like a lot better talked to me more about possibility of surgery especially now with TED involved. I’m actually waiting to find out if I’m approved to start Tepezza infusions. My eyes have not gotten “worse” in a couple months but I’m still very early on in disease. If things start to go downhill fast then my doctor wants to take my thyroid out. I’m hoping I get approved for Tepezza and can start treatment ASAP!
Sorry to hear your eyes did not go back to normal.. I have a lot of tearing, sensitivity to bright lights, increased orbital fat & swelling, moderate double vision & mild bulging.

[Gravesmom61519]

in reply to: New TED diagnosis #1185888

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…

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