Anyone else had thyroid tissue regrowth after a total thyroidectomy?

Hi @ameliajones, was the growth non-cancerous? Did you have to have further treatment? How are you doing today?

In 2016 I had a complete thyroidectomy. By 2018, both lobes of my thyroid had grown back.

First, I am a 52-year-young survivor of papillary ca of thyroid. Despite a total thyroidectomy in 7-72, some thyroid tissue has regrowth. But according to ultrasound, nothing malignant, so far. I'm grateful that my surgeon opted to do such a radical surgery, despite the after-effects of years of depression, anxiety, need to eat within a 6-8-hour fast period, periodic need to monitor dosage of Synthroid which changes during the aging process, as does the need to head off osteoporosis & bone breakage as a petite woman without a thyroid gland. Why am I grateful for such a radical surgery that took me 2 years to recover from just the initial after-effects in my late 20's? The total thyroidectomy taught me how to take care of myself on 3 fronts: physical, emotional, spiritual. The pain & suffering I experienced motivated me to stand up and speak up to medical practitioners who were more interested in their bottom line than in my health care. Exercise, nutrition, & self-advocacy became tools of health care that I practice daily to maintain wellness. Meditation, prayer, & support groups for family members of chronically ill patients have taught me how to be there for myself when others are not. I do not give away my trust to people, places, or overprescribed medications as I used to in my youth & middle age. That surgeon removed the source of cancer in my body, 52 years ago. That was a big loss & big gain at the same time. Without the pain & suffering that followed, I would not have changed from a victim to a victor, from a doormat to an abusive 1st husband to the tiger I am now who is learning how to be kinder & gentler with everyone, especially myself. Hope this helps you with the overall big picture of post thyroid surgery. My biggest accomplishment to date: Learning how to accept reality, advocate in partnership with trustworthy m.d.'s for holistic wellness, and pay my life experience forward to others in need. Welcome to the club of thyroid surgery survivors & thrives. Know that you too can heal yourself from cancer & many other chronic or life-long illnesses simply by taking care of yourself BEFORE you sacrifice your health, sanity, life itself for others who are out for themselves not you. If I am not for myself, who is for me? If I am only for myself, what am I? If I do not take action now, when will I ever take action? Hugs & healthy, happy New Year! Trudy

Hi @khd003, I thought I'd check in. What did you learn at your ultrasound? Crossing my fingers that you don't need follow-up surgery. How are you doing?

I’m having a very similar situation… I had a total thyroidectomy back in ‘99. My thyroid has grown back but not normal. It looks deformed and has grown back strangely. Unfortunately the nodules seem to be growing (per recent CT scan of my chest for another condition). I’m going for an ultrasound tomorrow. Hopefully I won’t need another surgery! 🙏

I felt the same! When they first called (after a MRI) to tell me that I needed to follow up with my endocrinologist about a “mass on my thyroid” - I told them but I don’t have a thyroid! I couldn’t believe it had grown back. Felt like something from a sci-fi movie…and of course it had to grow back with multiple nodules again. 😣

Hi! I’m just now seeing your post … can I ask how you are doing now? Did you end up needing another surgery? Praying that all is well! 🙏

I just changed the filter from “oldest to newest” to “newest to oldest” and found a lot more recent posts and comments! I will read through now and see if I can find some more answers… It seems like this is not so uncommon! One doctor told me that they probably didn’t get all the tissue with my original surgery. It was also thankfully not cancer, so I didn’t need any other treatment at that time - other then getting on the correct form of hormone replacement. 🙏

Hi - it looks like most of these posts are from a few years ago. I hope you all are doing better!

I had a total thyroidectomy back in 1999… this was due to having a “toxic multi-nodular goiter”. I had multiple nodules… they did a biopsy and it was suspicious for cancer. I was also having symptoms of hyperthyroidism. ..so they removed my thyroid but I didn’t have any other treatment.

I found out in 2017 (after having an MRI of my head for headaches) that my thyroid had grown back! And once again had nodules. Apparently it didn’t grow back all the way and my nodules were small and like “swiss cheese”… so my doctor wasn’t worried about it. I was also dealing with other health problems includes Primary Adrenal Insufficiency.

Well now I just got the results back from a CT scan of my chest - and one of my thyroid nodules has grown to 3.2 cm. I’m going in for an ultrasound tomorrow… apparently that will provide a more accurate picture. I’m just wondering what happened to the people who had their thyroid grow back … did you end up needing surgery again? Or possibly the radiation treatment?

Any feedback is much appreciated!

Thank you!

Karen

Hi Colleen, Since my re-occurrence/radiation in 2014 (initial diagnosis and thyroidectomy was 2010); my schedule for follow up is an annual visit with the endocrine doctor with routine panel of related bloodwork. It typically includes a sonogram as well, since I have also survived six (6) other cancers - all have some kind of atypical character, so an abundance of caution is the rule now.