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in reply to: What to expect? #1183232

Hi –

I was diagnosed with Graves October 2012. I tried the anti-thyroid medication Methimazole for the last two years, going into remission once, but within two months back to where I began with 0.01 TSH and T3 and T4 at negligible values.

Regarding more permanent treatment options, I was always wary of RAI as I had eye issues. Someone suggested I go to a Neuro-Opthamologist to have this checked out. I finally did and had it confirmed that I have moderate TED (thyroid eye disease). With this in mind, I decided I definitely did not want to do RAI as it can make the eye condition worse, even with the use of steroids.

Last week, I finally had a TT (total thyroidectomy). I am so happy I did! I feel 110% better already. I am told the scar will fade and the bruising is already doing so. More importantly, I already feel like “myself” again.

I wish I had done this over a year ago but my husband and I were moving at the time and I had to begin anew with new doctors, etc.

I’m currently in Texas and I had to see five different Endocrinologists before I finally found one willing to recommend the surgery option instead of RAI. All of the doctors here pushed me toward RAI even though I told them my serious concerns regarding TED and RAI.

With much persistence, I finally found the right doctor, and from what I can see so far, the right surgeon.

This site has been a great resource to me but a few things I would suggest:

1.) Do all the reading you can re: medical studies. Understand your thyroid numbers and exactly what they mean. I found an excellent book, Thyroid for Dummies, that helped me immensely in addition to the multiple websites available. The doctor who wrote it explains all of the different thyroid disorders, treatment options, aftercare, and heavily footnotes his work with medical research.

2.) If you think you have TED – go see a Neuro-Opthamologist as soon as you can. In my case, I ruled out RAI as a treatment option once I confirmed I had TED.

Lastly, I seriously regret not having surgery earlier. I feel like I’ve lost two years of my life. If you feel your doctor isn’t giving you all the information or is pushing you toward one treatment or another, find another doctor.

I wish you all the best!!!

Sincerely,

Vicki

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