[Big_goit July 11, 2020 at 11:49 pm Post count: 11]

#1061014

Greetings! I’m a 17 year old female who was diagnosed with Graves disease last spring (2019). I went on beta blockers and methimazole for a few months to manage my symptoms. I had a total thyroidectomy in August 2019. After 4 grueling days in the hospital (due to calcium defiency after surgery), I finally got to return home and quickly recovered thinking this roller coaster was over. I went on levothyroxine after that. But at a 6 month post-surgery check up at my endocrinologist, they noticed fullness in my neck and ordered an ultrasound that revealed that a large portion of my thyroid had grown back. This came as a shock to my family and I as we didn’t even know this was possible. After talking to the surgeon, he said he made the decision to leave a grain-of-rice-sized piece of thyroid tissue in my neck because it was too close to a nerve that, if disturbed, could have left me paralyzed. Since this discovery, I have gone back on methimazole and beta blockers until I can treat the growth again. At this time, I am leaning towards getting a small dose of RAI to kill the remaining tissue. I would love to hear anyone else’s story about thyroid regrowth if you have experienced that or even your experience with RAI. Does anyone know what percentage of total thyroidectomy patients expereince thyroid regrowth? What makes one patient more likely to experience this than another? And why did this happen so quickly (6 months after surgery)?Thanks!

[KimberlyOnline Facilitator July 15, 2020 at 10:45 am Post count: 4288]

#1185768

Hello and welcome – wow, that has to be incredibly frustrating to go through at 17. Graves’ *can* recur after thyroidectomy or RAI if there is living tissue left behind. This is a case study that appears really similar to your situation – where the surgeon specifically made the decision to leave a tiny amount of tissue behind in order to avoid laryngeal nerve injury.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6988647/

We are fellow patients here, so can’t tell you which choice to make, although hopefully, others who have had a similar experience will chime in. You might also check out our groups on Facebook (search for @GDATF and then click “Join Group” in the top right-hand corner) or on oneGRAVESvoice.com – as those forums tend to be more active than this one.

[Big_goit July 27, 2020 at 6:20 pm Post count: 11]

#1185769

Thanks for your reply, Kimberly! That article was very helpful and does sound a lot like my case, I appreciate that.

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