Hi Everyone–


It's been a while since I posted–but I'm in need of a little encouragement. I am 9 days from my TT– and I have been so brave up to this point, but that is starting to falter. I'm frankly terrified. Maybe I watch to much Grey's Anatomy– but all of the could-go-wrongs race through my head constantly. And when you search for post-surgery stories, you get only horror stories. I need to hear from some people who have been through this– I need to know what to expect.

(hx on me– Graves dx in 2009, Graves Orbitalpathy dx 2009, not a candidate for RAI bc of my eyes)

Hi!

Yes, the horror stories had me in tears many, many nights. I had my TT almost 4 months ago and am doing well pretty much. Not 100% pre-Graves lady yet! But, I'm doing way better than when I was hyper, no doubt there! I'm able to take care of my family, homeschool my boys, exercise, and enjoy life again. I still get headaches and have bouts of insomnia, but it's not as bad as it was, so I'll take it with hopes of improvements as time goes on!

I would suggest that you really make sure you have a great surgeon; it will reduce the risks of complications by a lot. I was fortunate to have one of the top 10% in the nation that my mom happened to know and work with in the OR, so I was nervous, but confident going in. I was in the hospital recovery for 4 hours and then sent home, but most surgeons have you stay 24 hours. I had a subcuticular stitch (about 2 3/4 inches long) and 1 suture that was removed a week later. My scar looks pretty good. No drain. My parathyroids and calcium levels are fine, but as a precaution, my surgeon had me take 1000 mg of Tums 4 times a day the 1st week, 3 times a day the 2nd week and twice a day the 3rd week post TT. Tums won't hurt you, so it probably isn't a bad idea. I slept upright for 3 nights in a chair to help with drainage. I only took Advil for pain- no prescription meds or anything. They gave me SSKI (potassium iodine) drops for 7 days before surgery to shrink the thyroid and draw blood away from it to make it easier to operate on. This is not something you should take though for more than 2 weeks as it can make hyperthyroidism much worse.

I would say the first 48 hours were the hardest. Day 6 I felt better. My voice was weak, raspy and tired easily for 3 weeks, but I could breathe, talk and swallow right away. Just be careful with that first sip of water- slowly & with concentration! I almost choked- whoops!

I started SYnthroid on day 2 at 100 mcg- 6 weeks later labs showed a 6.35 TSH, so I was upped to 112 mcg. My TSH got to normal in 2 weeks at .79 and 4 weeks later at .68 with my free T4 in the upper range of normal. I won't lie, the first 3 and 1/2 months of figuring out Sythroid was no picnic. I had symptoms of just feeling off, headaches, insomnia- just not good. Your body's hormone stores can last up to 2 months, but then it's just the Synthroid in there (per my endo's words)- so, your body is trying to make the adjustment. I still get some headaches- but not as much and not too bad- I don't usually need any Tylenol or Advil for them. Insomnia happens- but it's not too bad. It's probably my biggest complaint though. I haven't gained any weight at all. I exercise hard cardio 4 times a week for 30 min. I didn't start that though until about 2 1/2 mo. post TT (and I was in really good shape before getting Graves). I just took 10 min. walks until I would feel “weird” floaty/ spacey, then I'd stop. It was frustrating, but it is a long, slow process to getting better completely- so you have to have A LOT of patience. But, it WILL get better- it's just not quick.

Good luck to you!

I have no regrets with my surgery. It went smoothly. Some weird tingling in legs and feet went away after a few days. I have no scar now. I did not have to worry about radiation effect on my kids.

I went to the surgeon who specializes in this and teaches in-training surgeons, and he was recommended by my endo and the doctor who does pre-surgery physicals. This comforted me greatly.