Is it too soon for thyroidectomy?

[Awong]

I've been diagnosed with Grave's Disease and quite severe thyroid eye disease since May 2018. I was put on meds on a block-and-replace regimen for my Hyperthyroidism. My Endo has recommended a thyroidectomy since my case was severe and believes chances are low that it will go into remission if I stopped meds and also considering I want to try for a baby soon. I am abit spooked by the idea of possibly having a surgery so soon as I have read online that some people have dealt with Grave's or other thyroid issues for many years before removing their thyroids.

Has anybody had a thyroidectomy within 2 yrs of diagnosis like myself and did you try the option of going off meds first before opting surgery?

Would love to hear your stories/advice/opinions

[Lalatoot]

My friend had RAI within 6 months of diagnosis as she was allergic to carbimazole. I had 2 tries at remission over 5 years and neither worked. Neither of us had TED. I think you need to consider this as a big factor. How is it likely to progress under either situation. TED is not controlled by the thyroid.

[hilary77 in reply to Lalatoot]

With regards to TED, I have had a total thyroidectomy, Graves with TED, It only affected one eye I called it my popeye, my eye was light sensitive & bright light actually hurt, double vision, I had to see the specialist at the hospital regularly for check ups. After the operation to remove my thyroid gland, my eye did improve a lot & the pain went away & not as sensitive to light & it nearly looked normal but this last few months my eye has begun to pop again, some light sensitivity & it aches not painful but a nagging ache. I have been a little bemused as I thought at first could it be my thyroid had they not got it all but the surgeon said they had removed it completely so then I wondered if it was eye strain because I do use my iPad a lot & do crosswords in bed to help me sleep. I had been under the impression that once my thyroid was removed my eye would be okay. Your last comment TED is not controlled by the thyroid has got me intrigued. Could to please give me more information, I would be so grateful.

Sorry to jump in on this thread.

Kind Regards

Hilary

[Lalatoot in reply to hilary77]

My understanding is that TED is a result of the graves antibodies not as a result of thyroid hormones. The tissue around the eyes is similar to thyroid tissue so the antibodies affect that as they do similar the similar thyroid tissue. Removing the thyroid stops the graves antibodies affecting the thyroid. But the graves antibodies can still affect the eye tissue.

[Lalatoot in reply to hilary77]

Thyroid Glands Relation to the Eye

Although Graves' disease and Graves' eye disease both stem from the immune system’s attack on healthy tissue, one disease does not directly cause the other. That’s why treatment of the thyroid gland, while important, does not improve the eye disease. The two diseases run their separate courses and do not necessarily occur at the same time.

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