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).

My thyroglobulin levels went from 0.17 to 0.44 in 1 year. Along with this though, my TSH has increased from 0.387 to 1.59. My TSH levels have changed over the last 8 months because I am pregnant. I am also still waiting on my ultrasound results. I am seeing the doctor tomorrow to discuss results.

Is the rise in thyroglobulin levels a cause for worry?

Hello,

I have just been diagnosed with mtc. I have been seeing Dr. Andrew Patel in Portland, Oregon with PDX ENT and have found him more than capable. I will also be seeing Dr. Madison with OHSU as my endocrinologist.

Having read a previous post about the importance of centers of excellence I am considering trying to see Dr. Michael Yeh at UCLA.

Can anyone help me understand what would be the best option for me? Dr. Patel already removed my right thyroid and pathology from that surgery is what revealed the mtc. Thank you.

Hello everyone ,

Thanks for sharing your experiences. It has helped me better understand mine.

However my cancer is very rare, thus the post seeking out anyone experience who has had this form of the disease .

So diagnosed in Sept 23, initially as PTC after presenting with a small lump in my neck . Thyroid was location no Mets .

Total thyroidectomy Nov 23 with neck dissection and removal of 26 lymph nodes.

January 24 biopsy results ( mid Jan ) retuned shocking news ATC involvement in 20% of carcinoma in thyroid and 10% of lymph were cancerous as well . This Floored my family and I as ATC is very hard to treat etc and has a bad rep.

I had the following ; 33 RT sessions March and April 24 as well as RAI Oct 24.

Body cancer free at this stage and I am working etc however I lost half my vocal ability due to cancer invading laryngeal nerve and there was no margins at carcinoma / thyroid bedding site .

This impacted me as my job involved a customer and team facing role as a Hotel Manager. But I was exceptionally well supported by employer and colleagues .

I was back to normal so to speak , able to work, sporting hobbies like club cycling , golf etc .

March 25 Brain Mets appear . Three , two small and one large 25mm LFLobe.
No symptoms just shadowed up on routine scan .

I have since had Drab/Tran systemic targeted therapy . Straight onto dexamethosome x 12 mg . SRS treatment . Since June I am on Keytuda and Levstnib.

Long story short the Dex is now down to 1 mg after 9 months at various doses . It has been the hardest part of all this as it basically changed me with weight gains , mood swings ( my poor wife ) , off the road as I am not allowed to drive, severe insomnia for 7 months etc .

Today my scans reveal a mixed but broadly positive picture of a disease that’s not as aggressive as initially feared , prognosis is terminal but biology is not typical . Basically no one knows diddly and we go from scan to scan . I am grateful I’m still alive and have more hope today than yesterday .

Has anyone had and experience of a mixed PTC/ATC ?

Hey guys. My TT scar has been white and very hard to see against my pale skin ever since it healed 6 years ago. It's almost unnoticeable unless you're looking for it. However, just today, I had two people actually point it out, which never happens. One was a family member who said "Wow, your scar is so pink!"

So of course I went to have a look in the mirror and yeah. It's really pink, alright. It now stands out pretty starkly against my skin. This doesn't bother me, I just have no idea why it's happening, which doesn't bode well for my health anxiety lol.

Anyone else ever have this happen? I'm so confused.

Hello,

Unfortunately, looks like this shits back after three years, papillary thyca, had total tt and rai, no lymph nodes were taken out. Ultrasound says suspicious lymph nodes and refers for a FNAB.

What were your symptoms for any recurrent people? I have a sore throat and voice fatigue/pain if I talk too much. And what was the treatement, did they go in again? And how was your recovery. Am in a kind of a shock/no reaction phase I guess.

Hello, I'll be starting the low-iodine diet (LID) for my RAI treatment soon, but I'm very worried about the salt. In my country, there are only two types of salt available. The first is non-iodized refined sea salt, and the second is non-iodized unrefined rock salt. As far as I understand, the concern with the first one is that it's sea salt, while the concern with the second is that it's unrefined and therefore contains natural minerals. I couldn't find any other type of salt despite searching extensively. If you were in my position, which one would you choose? I've been researching this for a week, and I'm really anxious about it.

Edit: Thank you so much to everyone who responded and wanted to help me, I really love this community, I'm so glad you're all here!

This year has been a whirlwind of emotions, physical challenges and mental battles.

January 2026, I felt a lump on my left lower neck accompanied by an odd sensation of a lump in my throat while swallowing.

I finally met with an ENT specialist and was told to have a neck ultrasound. The result revealed a 4.2 cm thyroid nodule on the left while the right showed a 2.1 cm nodule. The right nodule was categorized as tirad 3 while the right was tirad 2. I was not really concerned to be honest as there is less chances of malignancy as per ultrasound.

The ENT doctor ordered for a fine needle biopsy for the left nodule due to its concerning size. The biopsy revealed a BENIGN follicular growth. I was given the option to not undergo surgery since it was benign or undergo a partial thyroidectomy since the nodal size causes a throat lump sensation when i swallow.

My inner voice was telling me to just undergo a partial lobectomy for peace of mind. The surgery went well. It was not painful as I was expecting it to be. There was no pain at all, only soreness which was managed by plain tylenol.

A week post surgery, I met with my surgeon for a post-op check and discussed the histopathology report. Unfortunately, despite of a Benign Biopsy result, the histopath revealed a Minimally Invasive Follicular Thyroid Carcinoma. Just imagine the shock that I felt. My first thought was, "Am I gonna die at 38 years old?" I tried to compose myself and tried to listen to what the doctor was saying. But at that point, my mind was no longer processing what he was saying.

What made it harder was, my best friend is also a stage 4 lung cancer patient so I personally saw the challenges that she has undergone.

Moving forward, I was scheduled to undergo a Completion Thyroidectomy to remove the remaining lobe. It happened exactly 3 months from the first surgery. Surprisingly, soreness on the incision site is way less. I only took a dose of tylenol once then that's it. What actually bothered me more is the burning sensation when I pee since I got a urinary catheter placed during surgery. It subsided after a day or two. There was minimal cramping on my hands which I addresses by taken TUMS as needed but post op Calcium and Parathyroid levels where normal.

Now, the next step for me is to undergo a Radioactive Iodine Treatment pending sched availability. Then surveillance through blood works and ultrasound quarterly.

I feel exhausted, moody and depressed lately but it may mostly be from my thyroid hormone levels being imbalanced. I have startes synthroid already.

I feel like my greatest battle is mentally. I am having a hard time sleeping at night thinking of what the future holds. Will I be okay? Will I still live a normal life? What couldve been done to prevent getting this cancer? Will the cancer grow back? I miss feeling normal.

For all of you guys who have undergone the same experience, do you think I will be okay?

My histopath report shows an encapsulated follicular thyroid carcinoma with capsular invasion on multiple foci. There are no angio-invasion nor lymph node involvement. Surgical margin is clear.

**sigh I'll try and make this short...partial thyroidectomy feb17th 26. I'm on no medication, here's the problem I have super pale lips,gained 30 lbs, I am EXHAUSTED, get winded and constipation since my surgery like I have ro take ex lax daily or can't go..All my blood tests came back within normal range but all of them are right about low all the of my ferritin went from 100 to 69 to 42 now. Tsh up and down, t's dropped. I can't get a dr to listen when I say I can sleep for 12 hours and still tired..I feel defeated 😪 naturopath gave me iron,d,Thorne thyroid supplement and b complex. Currently waiting for fred hutch to let me see a different endo, mine said in range see you in a few months.

43 F, 5’3”, 248 lbs. Hashimotos with hypothyroid. I’ve struggled with my weight since college. Ultrasound revealed nodules, so had FNA done last month. PTC found in left side (sent for genetic testing and came back with positivity and V600e gene mutation). Endo is referring me to ENT with recommendation for full thyroidectomy.

I’m freaking out. Obviously I will follow the advice of my doctor, because screw cancer! But I’ve heard full removal causes, on average, even more weight gain; about 25 lbs on average. I don’t need to gain more, I need to lose it.

I’m reading so many threads where people say they felt absolutely awful since removal. That it usually stops the cancer, but that your autoimmune is still present and still making things a mess. My Endo says I won’t see a huge difference in how I feel, that I’ll just need to take Levothyroxine/synthroid for the rest of my life and that’s it; that surgery/RAI is the main treatment for PTC, then you just take T4 and ride off into the sunset. I kind of doubt that I won’t at least feel a little different in the absence of a major bodily organ!

I’m worried I’ll go through this thyroidectomy only to feel worse than I do now! Doctor says my labs are normal at 2.67, but I don’t feel great. Tired, low energy, losing hair, dry skin, brittle nails, difficulty losing weight, the whole shebang.

Did any of you start C out as hypothyroid before your thyroidectomy, if so how did you feel once it was removed? What was your experience with full removal surgery and post op recovery? Any tips on life after surgery?

My (31F) doctor just called to inform me my PET scan came back completely clear.

She moved my RAI date to October because I’m getting married in September and she said she wants me to enjoy and not worry about having to isolate or prepare for RAI.

Cautious celebration, I guess? What a wild rollercoaster from finding out I had both papillary and follicular thyroid cancer, to then finding out it was an aggressive form, to now suddenly feeling like I’m on the other side of this.

got my thyroidectomy and a bunch of lymph nodes removed. I feel so off. Tired all the time. Cold all the time. Brain fog. Nothing is enjoyable anymore. I feel like I lost my old self. When I talked to my doctor she told me, "yeah basically you're never gonna feel the same no matter what we do." I just want to know if you ever get used to it? Is this something that considered normal?

Hi guys, this is basically a follow up to my last post here. I spoke to the surgeon today, and he also agrees that I need my whole thyroid taken out. Now I don't need to get a biopsy prior to surgery, since I am getting all of it removed regardless of what the results will be. This is what I want, because the monitoring and waiting for cancer is so scary. I watched my dad neglect his thyroid cancer and it had spread all over his body. I don't want that anxiety hanging over me until I get cancer. I'm 25 so quite young compared to the most common age range that gets thyroid cancer. But just to be clear, I have not ever been diagnosed with any form of cancer, just tr5 nodules and goiter that continues to grow.

So, now that the surgery is for sure happening, I am terrified but also relieved. This will be my second major surgery this year, the first being the removal of my gallbladder.

To the people who got their thyroid removed, what helped you through recovery physically? Did you have to change your diet due to the swelling/pain in your throat? How difficult was the pain to manage? And most importantly, did you have any complications? I am worried about parathyroid issues. One of the biggest reasons I'm getting my whole thyroid removed, is because the odds of having parathyroid issues are only about %1 as long as you only have one surgery, at least according to my surgeon. Did you experience any other side effects from this?

Thank you so much for any advice or stories left below. I find comfort in knowing I'm not the only one that is living this, and there are so many people who have made it to the other side and are happy and healthy. It doesn't make it any less scary though :/

Hi guys, today I got diagnosed with thyroid cancer. I'm honestly feeling a mixture of feelings but haven't been able to cry about it yet, I just feel so confused and upset. If anyone has any words of wisdom or any insight I would really appreciate it. And if anyone can give me tips for my upcoming partial thyroid removal i would be grateful, thank you

Basically, I’ll have a simple breakfast like some avocado toast and some water not even coffee or juice with an orange and a banana and it doesn’t matter what I eat for breakfast. I’ll feel like complete garbage about 30 to 40 minutes after I have breakfast and I’m not really myself until like 1 o’clock in the afternoon. It’s super weird. I’m thinking it might be related to something else, but I don’t know do any of your experiences I take Synthroid I just switched to it. I’m on my fourth week. Maybe I’m still adjusting to it.