Graves. I need to decide between thyroid removal or iodine

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Hello! I have Graves and I want to get pregnant. My doctor says that the safest bet would be removing the thyroid. She is inclined for surgery because with Radioactive iodine it takes longer for the Graves to slow down and the hormones to stabilitize. Can you shar with me your experiences with surgery or RAI? I am scared of both options!

I took PTU for a while but it affected my liver and the hyperthyroidism came back.

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  • Posted

    Hi lauri1638, the advantage of surgery would be that you are not exposed to radioactive radiation. Sometimes treatment with radioactive iodine does not destroy enough of the thyroid and a second treatment course is needed. I am sure you are aware that after treatment with radioactive iodine you should avoid getting pregnant for at least 6 months. 

    After a complete thyroidectomy your thyroid hormone level will depend on your daily dose of thyroxine. It is important to know that even a complete removal of your thyroid does not guarantee that your TSH receptor anti-body level reduces. Moreover, TSH receptor antibodies can cross the placental barrier and can cause neonatal thyrotoxicosis. 

    Before you decide how to proceed you could discuss this with your endocrinologist. 

    I am able to include links to this post but I will attach them to a private message. 


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  • Posted

    Good luck whatever you choose.  I've just had RAI after having Graves for over 10 years and now can't be stabilised.  I wish I'd done something permanent sooner.  

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    • Posted

      Thanks Sue. Can you explain what you mean you can't be stabilized? Are you hypo now and still can't find the right levels? How long ago did you have the treatment? Thanks!!

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    • Posted

      I am extremely sensitive to carbimazole. As soon as they are reduced I'm hyper and if increased hypo. This has been going on for years. I stopped carbimazole 10 days ago and had RAI last Wednesday. I was borderline hypo when I stopped and already hyper again as RAI dies t work immediately. I'm calling my endo tomorrow as I may have to go back on meds while the RAI kicks in. I'm feeling pretty bad but it will get better. I'm quite happy to go permanently hypo. It's easier to treat and doesn't feel so awful.

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