I got graves when I was a child and also TED. TED lasted for 4 years and today I have really big eyes (24 mm). I'm still on medication (Thycapzol og Eltroxin), but my levels has been fine for over 20 years now.
But now I am thinking of having a child myself, but really scared if TED can come back especially after birth, where graves flares up? I really do not want bigger eyes, then I rather adopt a child...
So will there be a risk for my eyes/TED during/after pregancy after so many years (I have a pretty big goiter and know I also have to switch to PTU)? Some doctors says no, and some says yes, but is the risk for TED small and how small???? 1-2% or 5-10% or?
If Graves' flares after pregnancy, the eyes could worsen. The management of Graves' during pregnancy is also somewhat complicated -- some may sugges definitive therapy such as thyroid surgery or I-131 then once stable, go for pregnancy. With large goiter and years of needing anti-thyroid medication, definitive treatment should be considered anyway. With eye history, would opt for surgery over I-131 (which can aggravate eyes) but you should discuss all these options with both your endocrinologist and ophthalmologist.
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