[pam00]

#1060396

Hi was wondering if anyone with graves disease has had a total thyroidectomy? Never heard of graves disease until I was diagnosed in 2012. I has a thyoidectomy in December last year.

Pam

[LaurelM]

#1182388

Hi Pam,
I had a TT in August last year. I has taken awhile to get my replacement dose clse to where it should be but I think we are close and in the last month I have been feeling a sense of wellness. Everyone’s journey will be indivualized but there are several posters who have had a TT in the last year. When you Re logged in you can use the search function and read more stories. A few posters have been very through in their posts about their experiences.

Keep us posted on your recovery journey!
Laurel

[Ellen_B]

#1182389

Hi Pam
You will probably get better information from the posters who have gone through the experience of having a thyroidectomy. I myself have not had a thyroidectomy but I have known personally very well many others who have had a total thyroidectomy and who did very well.
I have known a few cases that had only a partial removal but had difficulty getting regulated on their thyroid hormone. Surgeons leave some thyroid tissue in in order to make it easy to keep some of the parathyroids but also to prevent injury to the nerves that pass from the thyroid to the voice box as well. On the one hand if all the thyroid tissue were removed it might be hard to prevent parathyroid and vocal cord injuries. On the other hand any extra thyroid hormone that is left behind will continue more than likely to produce thyroid hormone and could make the process of getting regulated more difficult.
I wish you the best in homing in on the perfect dose so that you can feel good again soon.
Ellen

[miltomeal]

#1182390

Yes!!! Best decision i have made in a long time. I first tried RAI in 2011 and could not get balanced on replacement meds for over 2 years. Had TT last October and for the first time since Graves reared its head, i have been on the same dose of meds for 3 months and I am feeling better that i have in years. This is much quicker than i thought this would take.

I went with RAI first because i had heard good stories about the success – my mom, but it didn’t work for me.

best wishes

[snelsen]

#1182391

This can be confirmed by other sources, but I am pretty darn sure that only total thyroidectomies are the standard of care at this time. Not because it is easier to avoid the parathyroids. Not al all.

I really emphatically disagree with the statement in an earlier post today, that stated “On the one hand if all the thyroid tissue were removed it might be hard to prevent parathyroid and vocal cord injuries.”
I think this is incorrect.

The standard of care for thyroidectomies is a TT, or total thyroidectomy. Docs have found this is the best way to predictably manage thyroid replacement.

And the reason for removing the entire gland is to reliably manage the replacement of thyroid hormone.

Leaving a little bit of the gland proved to have an outcome of having no idea of the predictability of future hormone production, making an already complex treatment plan of thyroid replacement, even more challenging for docs and patients. To my knowledge, this was discontinued in the late 1960’s or early 1970’s. But it doesn’t really matter.

The big point is that TT is a very safe surgical procedure when done by a skilled surgeon who does thyroidectomies.

A good topic to discuss with a surgeon.
Shirley

[Ellen_B]

#1182392

Hi all,
It is great to see all this interest in the total thyroidectomy.

I agree with Snelsen’s statement that the reason for total thyroidectomy is to make the regulation easier.

What I was trying to say is even with a total thyroidectomy I believe a little tiny bit of tissue is left around the nerves to prevent vocal cord injury. However we should get the information on this topic from a surgeon –not me.

Thanks for making the reason for a total thyroidectomy clearer.

Ellen

[Kimberly]

#1182393

This is a good resource from the American Association of Endocrine Surgeons:

(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://endocrinediseases.org/thyroid/surgery_types.shtml

Total thyroidectomy is the preferred approach with Graves’, but as this piece notes, the surgeon might choose to leave small amounts of tissue behind in order to protect the surrounding structures.

[christine1014]

#1182394

Hi Pam00!

I had a TT on November 12th, 2013 and it has been, by far, the best decision I made to manage GD. After being Diagnosed September 21, 2011, I had been beaten down by the ups and downs of trying to manage my levels while taking ATD’S. My Endo. is amazing, and really let me take my time deciding what course of treatment would work for me, giving consideration that “I was totally against have a TT during the two years of yo-yoing on the ATD’S”. Finally, when my resting heart rate never went under 120…yes, sadly that’s not a typo 120, even with betta-blockers…it would actually wake me while I was sleeping… and the muscle weakness and joint pain that would come and go depending on the amount of methimazole I was taking, and evidence that my constant tachycardia was doing damage to my heart, my Endo. said that I could, of course get a second opinion, but it was time to take another course of action knowing I wasn’t going to go into remission. Within three days! of having my surgery my heart rate was down to 82! I finally felt like I was off the hamster wheel of exhaustion. : ) I still have eye issues, and days that I am fatigued, but compared to where I was is like night and day.
Also, with no disrespect to Shirley, I agree entirely with Ellen. I live in a suburb of Phila, and out of the three surgeons, from three different Hospitals, two in the suburbs and one in Philadelphia, only the one from Philadelphia “Always” does a TT with Graves Disease patients. Even though it is the recommended procedure for Graves Patients, a TT that is, the other Dr. wanted to do a partial for the exact reasons Ellen said. Not so much for the vocals, even though beyond important, but because you only need one out of the 4 parathyroid glands to maintain calcium levels and prevent future health issues. So like Shirley mentioned, getting a highly experienced surgeon seems key, because the surgeon that I did choose, the one in Philadelphia, had total confidence that he would be able to move the parathyroid glands safely into a muscle/muscles in addition, creating….hopefully, fewer issues in finding the correct level of thyroid replacement by only receiving synthetic by having a TT.
Pam I hope this helps. Like Kimberly, and all the great people who help run this amazing sight always say, “each case is individual”, but I wouldn’t go back to where I was before my TT for a million dollars. Nothing is perfect, but I got my life back. As you can tell, I highly recommend TT for GD with a experienced surgeon, and supportive Endo. which I was lucky enough to have both.

~Christine

I will leave you with one of my favorite sayings. I will have to look up who said it again because I have been saying it for decades. : )

“Serenity is coping…..coping well….and rising to they occasion”.

[sarawebberdurnell]

#1182395

Hi I was diagnosed with both Graves and Hashimoto’s diseases in October 2013. It is fairly rare to have both antibodies and I was having massive difficulties with drug treatment (couldn’t find the right dose that would work) and symptoms. I had both hypo and hyper symptoms. I was not a candidate for RAI treatment as my uptake level was so low, I would have required a dose of RAI that was much higher than my endo was comfortable with. She wanted me to keep trying the drug treatments, but I was feeling so awful, I couldn’t take it anymore. She referred me to an excellent surgeon, who explained everything to me and after reviewing my records and talking to me, recommended a TT asap. He said I could have waited, but knew I would feel tons better after surgery. Boy was he right!! Within a week almost all my symptoms had resolved and I was back to work within 2 weeks after surgery.

I have only had my blood checked 6 weeks post op and it was in the normal range. I see my endo again in a month and I’m fairly positive I am slightly hypo, but what I am dealing with doesn’t even compare to before surgery. I posted all my pre and post op stuff on this site, so feel free to browse through them if it helps at all.

Surgery was the best decision I have ever made. My surgeon told me that he found a goiter, which hadn’t shown up on previous tests. He also didn’t even mention a partial thyroidectomy. He checked my parathyroids when he was doing surgery and found them to be very healthy, so he left those, which is usually the case in TT, unless there are other issues, i.e. cancer or the such.

Please feel free to ask me anything if I can be of anymore help. Best wishes.

Sara

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