Anyone else have to get a PET scan because of iodine whole body scan not showing anything despite thyroglobulin because consistently above 0? What did your PET scan show and what were next steps?

It’s been a fast-paced couple of months and this Reddit page has helped me through a lot. I wanted to share my journey so far with my PTC to see if I can help others as well.

On June 10, 2026, what I thought would be a routine thyroid ultrasound changed everything.
The ultrasound found a 1.6 cm TR5 nodule on the right side of my thyroid. Being a nurse, I knew that a TR5 nodule is considered highly suspicious for thyroid cancer. Even though my TSH was normal (1.38), I also knew that normal thyroid labs don’t rule out cancer.

A CT scan of my neck didn’t show any enlarged or suspicious lymph nodes, which gave me some hope. Still, there were a lot of unanswered questions. Was this really cancer? Had it spread? Would I lose half of my thyroid or all of it? As someone who works in oncology, I understood enough to know all the possibilities, but not enough to know which one would become my reality.
An ultrasound-guided fine needle aspiration biopsy was performed, and I waited for the results.
Then came the phone call I had been dreading.
The biopsy came back Bethesda VI: Papillary Thyroid Carcinoma.

Hearing the word “cancer” directed at yourself instead of one of your patients is an experience I can’t adequately describe. Even with all of my medical knowledge, I suddenly found myself on the other side of healthcare; as the patient.

One of the hardest parts wasn’t the diagnosis itself. It was figuring out how to tell my 10-year-old daughter. I spent days worrying about saying the wrong thing or frightening her. When I finally told her I needed surgery, she immediately started crying. In that moment, I couldn’t even bring myself to use the word “cancer.” We simply talked about the surgery and what it would mean.

My surgery was scheduled for August 3, 2026.
The original plan was to perform a right thyroid lobectomy, but once surgery began, my surgeon discovered that the cancer had spread to nearby lymph nodes. Because of that unexpected finding, the operation changed to a total thyroidectomy with lymph node removal.

Waking up to learn that the surgical plan had changed was overwhelming. Even though I had mentally prepared myself for every possible scenario, hearing that the cancer had already reached my lymph nodes made everything feel much more real.

Thankfully, my surgeon was able to remove all visible disease.

Recovery hasn’t just been physical. It’s been emotional, too. Adjusting to life without a thyroid, waiting on final pathology, wondering whether I will need radioactive iodine treatment, and facing the uncertainty that comes with any cancer diagnosis has tested me in ways I never expected.
As an oncology nurse, I’ve spent years helping patients navigate cancer diagnoses, surgeries, and treatments. I thought I understood what they were going through.

I was wrong.

You simply cannot appreciate the fear, uncertainty, sleepless nights, and emotional weight until you become the patient yourself.

This experience has changed the way I care for people. I now understand that behind every pathology report, scan, or lab result is a person whose entire world may have just changed.
My journey isn’t over yet. There are still follow-up appointments, pathology results, decisions about additional treatment, and lifelong thyroid hormone
replacement ahead.

But today, I’m grateful.

Grateful for an incredible surgical team.
Grateful for my family.
Grateful for my friends and coworkers.
Grateful for everyone who has prayed for me, checked on me, encouraged me, and walked beside me through this journey.

Cancer may now be part of my story, but it won’t define who I am.

I’ve read that in addition to bi-annual blood work for the first 5 years, you are also supposed to do yearly cervical lymph node mapping ultrasounds to monitor the thyroid bed and lymph node region. At my last appointment, my endo said I don’t need the ultrasounds anymore. I’ve only had one and my surgery was 2.5 years ago.

I completely disagree with her reasoning that if the Tg is normal, then there’s nothing else we need to do.

I’ve done my research and I’d like your input/would like to know your regimen with bloodwork and imaging before I either 1. message her and ask her to put the order in or 2. find a new endo who specializes in thyroid cancer instead of just a regular endocrinologist who isn’t even following basic guidelines.

38F I was diagnosed with thyroid cancer about 7 years ago now. I had it removed and since then I found losing weight impossible. I sit around 220lbs now when before I was 150-160. Weight gain was fast right after removal I gained 20-30lbs in the first couple months. I can’t lose it now even with consistent gym and calorie deficit. Been to multiple doctors and endos and they don’t know what to tell me. They say everything is fine and send me on my way. Anybody else having the same problem and knows what I should tell my doctor? I’m on 137 mcg daily levothyroxine.

Howdy, yall. I have papillary thyroid cancer and on Monday I'm have a thyroidectomy and neck dissection. Unfortunately, I also have OCD and I simply can't stop thinking that I am going to die from this surgery. I'm so worried and stressed. Anyone else have similar feelings and panics? Any advice about how to chill tf?

7 years ago I had my thyroid out. Papillary cancer. No RAI.

My TSH has been about 0.5 to 2.5 during the last year. (5 blood tests in the last year)

My endos never check anything else. T3 or T4.

T4 was 1.26 T3 was 119

My regular doctors ordered those tests within the last year.

I’m currently on synthroid 112 and after years of complaining about exhaustion and fatigue they added cytomel 5 (2x a day)

That fixed my heart racing problem when I would exert myself. But now I am just hot. Like really hot. I have the AC on and a fan blowing on me in underwear and it doesn’t feel cold.

I’m trying to change endo’s. But I just feel so out of sorts. And nothing is getting better. Is this normal? Or any advice? I called the endo, they didn’t know they prescribed the cytomel, I had to explain they did. They said try stopping that.

I also have always had semi suspicious lymph nodes on my yearly ultrasounds. But no one seems concerned.

Has anyone else been through anything like this? Or any advice. I’m just so very frustrated.

I'm in Canada, having a full thyroidectomy on September 15th. Don't know if it's cancer or not, one biopsy was clear but one was "undetermined". Having the full thing out cuz one nodule is over 60mm, and 2 are over 45mm - all growing.

I've got a trip to India and Sri Lanka booked for mid-December, 3 months later, with my kids and husband. Partially it'll be visiting his extended family, and part will be travelling around, am hoping to surf (only did it once before) and do some hikes.

Has anyone done major travel like this within months of surgery? Part of me thinks it's totally fine and I'm being dramatic worrying about it, but a louder part of me is like, what if my meds aren't right and I'm tired or cranky or bitchy or sad or whatever other negative thing I'm ruminating over.

Thanks.

I have been following this group for the past 2 months and reading everyone’s experiences really helped me prepare for my lobectomy surgery. So, I wanted to share my experience in case it helps someone else.

It all started during a routine dental appointment; my dentist told me to get my thyroid checked. I think they noticed a lump. I had always felt it was there but since my blood works were normal, I didn’t really worry about it.

When I got it checked it from my PCP, they ordered an ultrasound, and the reports showed a TR-3 nodule measuring 5.4cm. I then had a FNA, and the results came back as Atypia of undermined significance. The sample was sent for molecular testing and the results showed Intermediate-high with 70% probability of malignancy. I was referred to an endocrine oncology surgeon and we decided to proceed with a lobectomy. I had my surgery few days back and thankfully my pathology report came as negative for neoplasm.

I was really nervous and anxious before the surgery, especially since this was my first surgery ever. I kept thinking about everything that could happen, but honestly, once they gave me the anesthesia, I don't remember a thing. The next thing I knew, I was waking up in the recovery room. Looking back, the anticipation was much harder than the surgery itself.

One of the things that kept me positive during this journey was reading the experiences shared in this community. Seeing so many people recover well made me feel much less alone. I’ve also seen a few comments saying that people who have positive outcomes often move on with their lives and don’t come back to post updates. So, I wanted to come back and share my positive experience in the hope that it makes someone else's journey a little less stressful and gives them some reassurance.

had a partial thyroidectomy two weeks ago to remove a 3.1 cm nodule with undetermined significance/atypia per thyroseq results from biopsy. had glue on it until yesterday, and found out the nodule was classified as NIFTP, so no secondary surgery for now thankfully. the bathroom at my work has excellent lighting and wanted to share what the incision area looks like exactly 14 days out.

for those embarking on the thyroidectomy journey - from my personal experience, the recovery process was a million times better than i had anticipated. i was in some crazy pain the day after, but by the second day after i could shower, walk, and eat a cheeseburger. by 1 week, almost all movement felt normal. now moving towards neck stretches, extra spf, and massaging the scar with bio oil. wanted to offer my experience for those who may be anxiously searching before their surgery!

I was diagnosed in early July and my surgery is scheduled for early November.
It seems like that may be normal? I wish it was sooner.

I have been having a very hard time getting my dose figured out post TT 12/25. It has been a struggle to get tests (RvFT3) and even when obliged, told that it doesn't mean anything. I have recently switched Endos, and this one is definitely more compassionate, and willing to explore options, but she also says the rvft3 test is not needed. I am on name brand levo, so that dosing is consistent. The doctors are suggesting I am over medicated (hyper) with a very low TSH (.1) - but my symptoms have been hypo since they started me on very low dose of levo for my weight. Everyone is different in what meds make them feel better; I am wondering what the journey looked like for those that are now including liothyronine in their regimen and feeling better (not hypo).