Thyroidectomy, Papillary Cancer, Thyroglobulin is rising afterward

Posted by rjgee @rjgee, Jun 21 12:55pm

Hi All,

I'm currently 55, not working - no health insurance. My full procedure and all testing is handled overseas.

Had a full body MRI with Prenuvo (New York City) in 2022 which showed a small thyroid nodule, but the radiologist said probably not to worry.

Well, "probably"... I don't like that word. So while in Colombia with my wife, I had followed up with a thyroid ultrasound which came back mildly suspicious, and then with a biospsy which showed Bethesda level 5. March 2023, I had a full Thyroidectomy, including removal of 3 suspicious lymph nodes. Further biopsy on the removed thyroid confirmed papillary cancer. Here's the official writeup from the doctor:

In the basal region of the left thyroid lobe, a predominantly cystic mixed nodule with the presence of calcifications, heterogeneous, without halo, measuring 9.4 x 9 x 10.3 mm, presents abundant peripheral vascularization on color Doppler, histological study is suggested.

Total thyroidectomy + central neck dissection 03-19-2024 (LEFT THYRODEAL NODULE MACROSCOPITALLY INTRATHYRODEAL
No POP hypocalcemia
IONM ok
AP: CPTvC 0.7 cm left, MIE black, N 3/7 with met greater than 4 mm

April 2023: Followed up with 100mCi of Iodine 131

Followup testing (all done at the same lab):
7/21/24 - Thyroglobulin .01
1/21/25 - Thyroglobulin .09
5/21/25 - Thhroglobulin .14

Ok, so my Thyroglobulin is definitelly showing a pattern of increasing. My last appointment with the doctor (overseas), when the number jumped from .01 to .09, and the doctor was like "Don't worry... the number is too small to worry about. We can worry about it if I see a number like 1 or something.". I have my next appointment with thje doctor in a few weeks. Now that the number has jumped again to .14, I have a feeling he is going to say the same thing. My thought, is that if there is any possiblility the cancer is still there, I want to knock it out now and not give it a chance to grow or metastasize. (Note: this doctor is an endocrinologist - he also performed the surgery).

Since I'm not relying on health insurance to approve anything, I can probably push for almost scan or treatment I want.

Wait another 6 months and further establish a pattern?
PET scan with tracer?
Find an oncologist specialist?

NOT looking for medical advice - merely any options I may have missed so that I can discuss this intelligently with the doctor when I have my followup meeting. Thanks!

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

rockon79 | @rockon79 | Jun 21 10:24pm

I had a thyroidectomy for papillary cancer. Biopsy before surgery on 4.1 cm tumor was positive. Since surgery 18 days ago my endocrinologist ordered RAI treatment to "clean up" any residual thyroid cancer cells. My surgeon on the other hand sent my original pathology report to outside experts because of anomalies such as a BRAF E600V mutation, no lymph node involvement (really odd) etc, and declined not only to comment on what my diagnosis might be but cancelled the scheduled RAI treatment. The reason is that this is not a simple cancer to treat as many would have you believe. RAI and other preventative treatments can create serious problems, thus they must be used in a well informed and responsible fashion. Sometimes supervised watchful waiting can be the course of wisdom. Everything depends on the severity of the cancer. The expertise of the doctors is also paramount.

biga282 | @biga282 | Jun 22 7:53am

Wow! Your issue sounds like the exact same as what my 32yr old daughter has and is going through. She’s having surgery next month to remove cancer they missed after her Thyroidectomy. After her iodine scan they said no big issue but she went to Denver for an evaluation and suggested further surgery for cancer removal. Best of luck to you!

rjgee | @rjgee | Oct 10 7:23am

I wanted to follow up on this since I don' t like to leave things unsettled 🙂
While waiting on my appointment, I had a followup reading on Thyroglobulin a few months later and it showed a repeated .14
Apparently, and no one including my doctor thought to mention this, TSH and TG levels are related. My TSH level was too high (not taking enough levothyroxine), and that affects the TG reading. ChatGPT to the resue.
Still tracking... will do another reading next year once my TSH level is better stabalized... but feeling a lot more at ease now. Probably won't reply to this thread again.

deborah1031 | @deborah1031 | Oct 11 8:21am

For me, managing the levo dose to keep the TSH down and TG low has required regular tweaks. 112 has been great for about 6 months and then is too much. 100, 104, and 106 are usually not enough. 108
was my sweet spot for a year but then wasn't enough. Back to 112 which was great at 3 months but TSH was slightly too low at 6 months. My endo now wants me on 6.5 -112s per week, which averages 104. I would like to cut back more slowly and recheck in 3 months to see if 108 will take care of the TSH again. I have also asked to do the TG tests now, since he didn't order them for my last visit (why?) and that had been 5 months. I like having all the data. I also like to lower the dose as slowly as necessary to avoid the sluggishness and mood changes that can come when I am on lower doses. He hasn't responded and it's been a week.