[scanders]

#1060397

Last Friday my endo suggested that I consider a thyroidectomy as my thyroid levels aren’t stable yet. She does not want to consider RAI because of the eye disease (nor do I, for that reason.) She said we can try the MMI for another 6 months, but if still on a roller coaster, we might have to consider this, which would, of course, be my decision. It’s been about 6 months so far with ATDs.

So I’m curious, how/why did you choose TT? Did you try other treatments, and if so, for how long? I want to feel better, but I don’t want to rush into anything, either. From an endo perspective, I guess it’s easier to dose replacement than ATD. So over these next several months, as we see what happens with my levels, I’m going to ponder her suggestion, but wonder what sorts of things I should think about if I have to decide? And are you happy with your decision?

Thanks,

Christy

[snelsen]

#1182397

Be sure to read AzGravesGuy’s latest post of today!

I am an “instant gratification” person if I have a choice.

I chose TT cause I wanted the damn thing GONE! As it really was,
back then” I am quite old!) they did subtotal thyroidectomies, the theory was to leave a tiny bit of gland to excrete a tiny bit of hormone.) So in my case, they did leave that tiny bit, which eventually just stopped “being.”

Methimazole was not an option for me, not sure why, perhaps it did not exist. RAI was quite new then, but still, I am familiar with health care, found a good surgeon, and the whole thing was a breeze. At some point, I began taking Synthroid, and it has been seamless for me, other than a bump or two in road pertaining to my other health problems.

I thought Graves’ was hell, but 50 years later, I developed TED, which was worse for me because of the severity of all stuff. But today I can read, drive, see and…..as everyone says about every darn thing,
“it’s all good!”

But it is a personal preference thing, if you read on this forum, you will find that some people had reasons, some did not. Occasionally removal of the thyroid is needed for other reasons. It is an easy procedure to recover from.
Not one person who has known my incision was there, can find it!
Shirley

[De]

#1182398

My Endo at mayo said rai was the way to go so that is what I did. My mother and brother both received rai treatment without complications so I went for it. I am now dealing with severe TED and am so miserable. Had orbital decompression surgery twice since January and am now on 12 weeks of solu medrol IV infusion (once weekly). They said more surgery but I’m putting it off for the time being. Hate steroid side effects , round face, headaches, weight gain, you name it I have it. Finally off oral prednisone, big triumphant for me. Shirley has been a great source of information and has helped me tremendously.
If I had elected thyroidectomy vs RAI would I have avoided TED. I find a graves patient needs to educate themselves , I wish I hadn’t been so ignorant about Thyroid disease.
Hey Shirley it’s 70 degrees today, heat wave in Minneapolis. Still snow on the ground. Bet you miss it. HA

[scanders]

#1182399

Thanks for your input, Shirley and De! And I did have a chance to read AZGravesGuy’s post. It does help to hear people’s perspectives. I’m curious, too, if there’s a connection with TED and TT. What happens to the antibodies with TT? Are they just gone? I can’t quite figure out if they’re attached to the thyroid so they would just be gone, or if they’re still out there and could still attack the eye muscles. The effect on TED, if there is one, is something I’m pretty curious about as I ponder this.

[SueAndHerZoo]

#1182400

Hi there.
I had a TT last July and haven’t regretted it for a single moment. I actually had to push my endo to refer me to a surgeon… he was pushing for RAI or continuing to chase a consistent level using ATD’s. I was sick of the rollercoaster so met with the surgeon, was more convinced than ever that I wanted my thyroid out, and had it done as soon as she had an opening.

I was on ATD’s for a few years, then had a remission, then when the Graves came back to life it was all over the place. It’s much easier for me to find my “sweet spot” with meds now that I don’t have a thyroid confusing the issue.

Good luck with your decision, and read, read, and read some more!
Sue

[Kimberly]

#1182401

scanders wrote:

What happens to the antibodies with TT? Are they just gone?

There is a lot that isn’t completely understood with regard to antibodies. The one published study that I’m aware of showed that there is a similar antibody reduction for both TT and anti-thyroid drugs:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.eje-online.org/content/158/1/69.full.pdf

[sarawebberdurnell]

#1182402

I had a TT in Feb and if you are interested, I posted both pre and post op, so please check them out.

It is a personal decision and I was nervous to jump into a TT, especially since I had 2 hernias repaired in July and that is was threw my Graves into hyperdrive. Looking back, I wouldn’t trade my decision for anything. All of my symptoms were gone almost immediately. It was like someone flipped a switch. I am still struggling with a face rash/acne, and have started getting tired this past week, so I think I may be on the hypo side a bit. My weight loss isn’t going fantastically, but I’m not gaining any and I have the energy to work out, so I’m not really complaining (and losing 4 pounds in month is better than nothing).

I hope you can find the information you are looking for and are able to make an informed decision that will be right for you. Best wishes.

Sara

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