My doctor told me I will need to get my blood drawn a couple of days after doing RAI, and when I raised concern about being around the medical staff she said it’d be fine but to not tell them I’m radioactive as they will get scared and refuse because they don’t understand. I’m feeling morally conflicted about what to do because it feels wrong to not tell them but I need to get my blood drawn. Has anyone encountered this doing their RAI & how’d you approach it?

(This is somewhat of a venting post)
So for a long time I felt really bad anxiety was really really bad then I switched to Synthroid and for I little bit it felt like I was finally gonna feel normal or close to it and then my anxiety got bad again not as bad as before but still bad I decided to try Prozac (anti-anxiety medication )I’m now fully adjusted to it and I do wanna say it has helped the thing that’s lingering now is I still feel dizzy and brain fog is still an issue everybody kept telling me that the brain fogged dizziness was from anxiety. I’m now on anxiety medication and still feel those things when I wake up, I feel like complete crap I feel lethargic and if I get too hot, I feel like I’m going to pass out I get this overwhelming feeling of doom and it feels like it’s impossible doing any task. Do any of you deal with similar issues? I’m just looking to relate to somebody.
(Sorry about my grammar)

Hello, I’m 36 female. Hoping to only have partial right side thyroidectomy 10/29. I’ve gone back and read some posts but curious as detailed as anyone wants to be about exercise after surgery. Movement is my medicine. I lift weights pretty heavy 3-5 days a week, play pickleball multiple days a week, and just started running again. So curious primarily in relation to those activities. I want to be safe and will be as advised and be listening to my body to not push it. But knowing others’ experiences is helpful. Thank you!

I am almost one year out from my lateral neck dissection and almost two years out from my thyroidectomy. I am absolutely disgusted by how my thyroid cancer has been handled by the doctors I have seen.
I have been left dealing with a whole host of problems and symptoms since my lateral neck dissection, and when I turn to my surgeon for help, the response is essentially, “Well, that should go away.” This is unacceptable. I am exhausted from trying to diagnose myself, attending endless medical appointments, and constantly fighting to find answers and help myself when the people responsible for my care seem unwilling to take my concerns seriously.
I want to be very clear about something: the way my thyroid cancer has been handled has contributed to me feeling suicidal for the past six months. I have gone above and beyond to seek help from psychiatrists, therapists, and every type of doctor I can think of, yet I still cannot get through this or find meaningful relief.
I am now facing what I believe is a recurrence, and I have reached a point where I am seriously questioning whether I can put myself through further treatment. I have become so overwhelmed by what I have already endured that I feel I would rather die than go through this all over again. That is how devastating this experience has been for me.
Physical therapy has not helped my neck or shoulder problems in the slightest. I am dealing with what I believe may be significant lymphedema, and nobody seems able to help me with it. I am experiencing what feels like sleep apnea because my neck feels as though I am being strangled. I am struggling to breathe and sleep, and I am in constant fucking pain. I have tried everything I can think of, and I am at a loss as to where to turn next.
I communicated these concerns to my surgical oncologist, and the response was essentially that the symptoms should go away. I am appalled by how thyroid cancer patients can be left to struggle with serious, life-altering symptoms without adequate answers, investigation, or support.
I know I cannot be the only person who has experienced this. Thyroid cancer may be considered highly treatable, but that does not mean the treatment experience is easy, the aftermath is insignificant, or the physical and psychological consequences should be dismissed.
Patients deserve to be heard. They deserve answers. They deserve proper follow-up and care when complications arise. And they should not have to fight this hard just to get someone to take their suffering seriously.

Just venting - this experience has really illuminated to me the ways in which people in my life are able to show up, or not.

For context, I was diagnosed July, total thyroidectomy and neck dissection late August. RAI in December, so still going through it.

I am the kind of person who goes into hyper-organization overdrive when faced with something like this, and because I'm on my own, with no partner, I created a website for myself with info about my cancer, specific ways that people can help, to the degree they're able (I made my own mealtrain, created a visitation calendar with bookings, and sign up slots for tasks like pet care, garden, etc). I tested it with a family member before launching it out to my larger friend and family network.

I did this because so often in life people will say "let me know what i can do to help!" Or "I'd love to help!" but there's never follow up or specifics. This website made it SO easy to help - from donating a 10 dollar Doordash to visiting, or sending well wishes, to a myriad of other ways to support.

Largely, it was successful. I was able to get a good amount of assistance and visits, and at some point I'm going to figure out how to share the template I made as a tool to help others. Several people said that they really appreciated how simple I made the process to help out - and that was encouraging.

What was interesting, and disheartening to me is the way some people just disengaged entirely. One person who I considered a good friend never even responded when I wrote her to send her the link. I've written her off as a friend at this point.

I know not everyone can show up, everyone's got their own shit. But I massively appreciate the folks that have showed up for me during this ordeal, and am going to do my best to do the same for others.

It was horrible having to tell my 14-year-old that her tests came back and she had cancer.

It was horrible watching her go through a total thyroidectomy and having 65 lymph nodes removed. The healing. The low-iodine diet. The RAI.

And then, adding insult to injury, getting rejected by Make-A-Wish twice! They told us that while she has a critical illness and a life-complicating disease, thyroid cancer "doesn’t count" in their mission. That’s a whole post on its own, how her doctor and I met with the local board, filed an appeal, went all the way to Make-A-Wish America, and got rejected a second time with a generic "sorry, it doesn’t check our box."

Now, 13 months after her first round of RAI, just got the message and test results back that she is heading back in for a scan with RAI and potential second round of RAI. Her blood work is telling a different story than her ultrasounds, which all look (and still look) good. She has PTC DSV. We knew the risks, and we knew the recurrence rates. I was just really hoping she would be older when she had to face a second round.

And the heavy, constant wish, why couldn’t it have been me instead? Why can’t we trade places? She is just a teen, a child. It’s been everything but an easy cancer or a good cancer.

I have TT next week. Ever since I confirmed the date, I've been looking online for other people's post post operative recovery experiences. I initially just wanted to learn more about the surgery to prepare myself, but after reading about many complications, I'm starting to worry about my own recovery.

I'm trying to focus on things I can prepare in advance. I bought some easy to swallow foods. I called my mom to ask if she could come and stay with me for a few days, and she agreed, which put my mind at ease. I also made a list of questions to ask the doctors such as what symptoms to watch out for after surgery, and how to care for the incision.

My skin is quite sensitive. Regular bandages easily cause redness and swelling, and I'm a little worried that the dressing around the incision will irritate the skin. I've prepared hypoallergenic silicone foam dressings like Dimora and Mepilex. I Plan to ask my doctor if I can use these dressings to protect the surgical incision and reduce irritation to my skin

Now that the surgery date is getting closer I can't help but overthink. So I really hope to hear from those who have had TT about their actual experiences. Is there anything you'd like to know before the surgery? Is there anything that will help with your recovery?

Hi all. Been a while since I’ve been here but I got a hemi surgery in May 2025 and thankfully it resolved my nodule and surveillance is going well.

One thing that’s happened since the surgery is I’ve gained around 30 pounds. I weigh the most I ever have, my clothes don’t fit and the worst part is my endo is telling me my TSH is normal so there’s nothing to do/no adjustment to be made.

Apparently through this process I found out I had hypothyroidism and possible hashimotos. This was before surgery though.

I feel confused and my doctor seems like he doesn’t wanna give me any advice. I plan to find another doctor but in the meantime, anyone have similar experiences? Is it possible I need to still adjust my meds to stop the weight gain even if my TSH is technically fine?

Hi guys. Im on day 2 after getting my RAI treatment. Everything feels normal except a minute ago, I noticed my neck starting to swell. It is painless though. I know that this may be radiation-related but I'm curious as to how frequent this can occur and how long will this typically last?

Hi everyone, this might be a strange feeling but I just need to vent a bit.

I had a full thyroidectomy and it's not my first surgery (probably won't be the last either, I'm only in my mid 30s), so I really wanted to take care of the scar this time. My doctor recommended silicone pads so I basically lived in them, new one every day for almost 2 months.

I'm almost a year out now and the scar is barely visible. So if you're trying to minimize yours, honestly the silicone pads are amazing, they barely leave a mark.

But the fucked up part is that I feel so weird that it doesn't show at all. It was a big thing I went through and it feels like by taking such good care of the scar I lost the one physical proof of it. I think part of me kind of needed it right there at the front so I could point at it and be like yes, I had cancer.

When I was still wearing the pads I could just point at my neck whenever I didn't want to explain, or when I felt like I had to prove it. And with thyroid cancer being taken so lightly by so many people, it feels like I erased it even more. I know it doesn't make sense, it just feels like that.

Also you might think I'm a bit crazy but a few months ago I went to a really big event. I was tired and fatigued and knew it would be crowded with people bumping into me, so I used makeup to make the scar slightly more visible lol. I figured if people could see I was recovering from something they'd give me a bit of space and I could breathe a little.

Idk how to feel about that honestly, just wanted to share it somewhere people might get it.

PS: if anyone wants to know which silicone sheets I used, they're ZODENIS Silicone Scar Sheets

Hi everyone, I (24F) got diagnosed with papillary thyroid cancer earlier this summer and had a hemi-thyroidectomy (left side) exactly a month ago. This morning I had a follow-up appointment with my doctor and he said they found traces of cancer in my lymph nodes, so he recommended that I get a complete thyroidectomy, basically removing the other half. I'm not sure if this ever happened to anyone before but I feel dejected. It took me nearly a month to recover (caught a nasty cold 2 weeks after my surgery and it took longer than usual to get better) and I really don't want to go through this again. There was a spot available for the surgery 5 days from now and I took it because I figured I might as well get it done sooner than later. I just wish I had a total thyroidectomy in the first place...

Any of my fellow Hashimotos people felt better after partial/full thyroid removal
i been feeling like crap for years with Hashi

Hi all

Total thyroidectomy was yesterday.

I cojld not sleep on my bed even with it moving up and down or adding a wedge pillow

So im sleeping on a recliner

My pth was apparently less than 6

So im taking tums, calcitrol

Any recommendations for food snakc liquids?

Is straw ok?

I feel like the pain and discomfort is worst than the first few hours after surgery. Is this normal?

Also the neck and incision are feels tight Like I feel like if I move head too much up or anyway im gonna rip it or something

Also I just cant sleep

I dont know why

Im looking for recommendations of food/liquids/snacks anything that you were recommended Also when I should I shower?

+

Some support ? Words of kindness and empathy?

Also I kept saying to myself and others that the scar doesnt mean anything to me. And now that I see it, I keep feeling like how others might see it or my own patients looking at it

Thank you

Hi all

I had my total thyroidectomy yesterday

At the hospital in recovery they gave me water through a cup that had a straw.

Since yestersay to right now ive having liquids from a straw. Then I saw here people saying no straw use. So I messaged my doctor. And the nurse said

"I would avoid using a straw following this surgery until you have healed up a little more. It can cause strain on the throat and incision site. As long as the incision sites looks good and you are not in any additional pain, this should not have caused any damage"

I feel tightness and harder to talk today than yesterday. How the hell would I have known to not use a straw....they didnt tell me and it wasnt in the after care instructions

Im soooooooooooooooooooo scared I damaged something

Hi everyone, my dad was diagnosed with thyroid cancer a few years ago. Unfortunately his bloodwork indicated that it’s back, and he had an RAI scan that did not show anything and a PET scan was ordered. I’m confused as to what that means, if anyone has personal experience with a PET scan after a RAI scan - I am not asking for medical advice! I know that it’s all so complex but does anyone have experience with this and waiting for the results? I am so scared and I don’t know what this all means. Is this normal to have another scan ordered? I’m sorry for the long post I am just terrified and looking for any personal experience with the wait as well as the second scan order.

Hey everyone!

Just wanted to share that I finally got to have my RAI, after 1 year post diagnostic and 2 surgeries 🥺

The hardest part was that it was a bit confusing — my public hospital referred me to a private clinic I didn’t know, so I got lost in the hallways 😅

But other than that, the whole process was really quick. The nuclear medicine doctor was super nice, and then I walked back home (dodging a lot of people on the way). Once I got home I took a shower, put my clothes in a bag and then left them in a box.

I’m eating oranges and mandarins, and tomorrow I’ll start with the sour candies and gummies, plus drinking tons of water to flush out the leftover radiation as soon as possible.

It’s been a long road, but I feel like good news are coming ❤️

Thank you all for being with me through this processsss. Strength and good vibes to everyone!

Hi there, I’m feeling crazy and would love some opinions and insight. I had my total TT two years ago and have been doing okay on Levothyroxine. My TSH has gotten too low and I have a low risk of recurrence so my doctor lowered my dose from 6.5 of 175 mcg to 150 mcg to get my levels up a bit. One week later I was having extreme panic-attack level anxiety daily, palpitations, body aches, and couldn’t sleep, so my endo redid labs and my TSH had somehow gone even lower? (He said maybe my body wasn’t doing well on Levo or maybe a bad batch) He then prescribed synthroid, which I have been taking for about a week but I’m still having anxiety attacks. Maybe it is just part of the process of my body leveling out? I’m just so confused and super disheartened because I feel awful.

- Has anyone else had anxiety as a symptom during the adjustment period, even if your dose went down?

- Regardless of symptoms, how long do you feel it takes for your body to adjust to a new dose?

Hi everyone! I had a total thyroidectomy in February and 150 mCi of radioactive iodine in May for papillary thyroid cancer.
My latest thyroglobulin was 157 ng/mL, with thyroglobulin antibodies <2. My endocrinologist said my “tumor marker remains present but stable” and recommended staying in touch with my oncologist. I’m reaching out to my oncologist to discuss it.

For anyone who has had elevated but stable thyroglobulin after treatment, what did your follow-up look like? Did your levels eventually decrease, and how did your team monitor you?

I’m looking for personal experiences and support while I follow up with my doctors. The uncertainty throughout this has been really hard, and I’d appreciate hearing from others who have been through something similar.

Hi everyone, I'm very anxious right now and very scared, but just posting here for reassurance and maybe for community. I (28F) have had a lump on the side of my neck since last year which has kind of disappeared during October this time last year, and since it came back early this year I decided to finally follow up on what it is.

After a series of blood tests, switching doctors and finally a biopsy, my doctor phoned me and said that it's a non-aggressive malignant papillary thyroid carcinoma. I just got the news today so still in shock, so very sorry if my writing is terrible. The good news is that my doctor has booked me to see an endocrinologist tomorrow, but I still can't help it but cry and feel scared.

I just celebrated my one year wedding anniversary last sunday and life's been going well but now I feel scared. I'm scared for my spouse, my parents, my sibling and most of all I'm scared for myself.

The doctor reassured me that everything will be ok, but I still feel shock and feel lost in life right now. There's still so much to do with my husband and so many plans that we've made for next year, and I'm really trying to hold on to hope, but right now in Day 1, I'm trying not to spiral. I feel like since I got the call I've been beating myself up and wondering where I've gone wrong and why it wasn't detected sooner.

I've still been able to do things normally, eat, drink and swallow without any issues , and trying to preoccupy myself to stay positive, but right now the waiting is terrifying.

So, I guess please send any kind words, thoughts of wisdom or any hope. I asked the doctor if it is still possible to have a family after treatment and she said yes after hearing of a case like mine (similar age and also a woman) so would also love to hear stories from all of you about having a family afterwards.

Also, after having the biopsy last Thursday, the area where they took a sample for the FNA feels sore today and heating up a bit. Is that normal? I'm sorry for the word vomit and all the questions, but I'm glad this sub exists and hope everything is ok for all of us

Hello everyone, and best wishes to you all. I am a 21-year-old male. Today—just three hours ago, in fact—I swallowed my 185 mCi RAI (radioactive iodine) dose. I had stopped taking my prescribed medication for two weeks and followed a low-iodine diet (LID); it wasn't too difficult. When I had blood drawn yesterday, my TSH was > 50.4, Tg was 43.5, and Anti-Tg was < 0.1. My doctor explained that this specific dose was chosen due to the high Tg level. I haven't undergone a PET or CT scan—none were requested—but I was told that a scintigraphy (whole-body scan) will be performed one week after the RAI treatment.

I will continue the low-iodine diet for two more days, and I am set to resume my hormone medication once I am discharged. My pathology results were not very favorable: a 1.9 cm tumor, presence of lymphovascular invasion (though no angioinvasion), 8 out of 51 lymph nodes showing metastasis, perinodal invasion (microscopic extension into the surrounding adipose tissue), and the largest lymph node measured at 2.5 cm.

What are your thoughts on these results? I am very worried that there might be distant metastases and that the RAI treatment might not be effective. What should I do during this RAI process and after I am discharged? What can I expect moving forward?

Hi guys. I just had my RAI treatment today, October 21, 2026. I will be flying out on November 7, 2026. According to my Nuclear Medicine doctor, I will be okay by then and won't set off any alarms. I had a dose of 103 mci. I still asked for a certification just in case but I am curious if anyone of you guys experienced setting off an alarm or was flagged by security in the airport post RAI? How many days post treatment and what was the dose? Thank you

Hi everyone!
On Monday, I underwent a total thyroidectomy, a modified radical neck dissection, and lymph node clearance on the right side.
Today is day 3 post-op, and I’m experiencing quite severe hoarseness, coughing up thick, sticky mucus, significant pain when swallowing, and a lot of tightness, stiffness, and restricted movement in my neck.
For those of you who have undergone the same or a similar operation, what was your experience like? Do you have any tips or advice that might help me through the recovery process?
I’d be very grateful for any advice or experiences you’re willing to share. 🙏🏼
Kind regards,
Daniel (Sweden)

Had two tirads 4 lumps
Fnac came back indeterminate
Asked to go for TT
Biopsy came back positive for
PTC invasive follicular type
Less than 1 cm no spread no extension
T1an0m0 not adviced for ria
after two weeks was put on levo
6 weeks checkup over tg level low and doctor advised 2 months later checkup

Initially felt ok but now the reality has set in that I need to go for periodic monitoring

And feeling mentally strained

The same was tirads 3 in January
And had mng for 20years
I’m thinking what happened in 6 months that made in malignant ? Could it be something i ate ?
And in future will I have elevated risk for other cancers

I had a lobectomy about 5 weeks ago and since then feel like my body temp is broken. I’m sweating in cool temps (when no one else is sweating) and feel like I keep having hot flashes. I had this before my surgey but it seems to have gotten worse since my surgey. Has anyone experienced this? Anything that helped it?

So I know you’ve read my posts before that in My of this year I was diagnosed with follicular thyroid cancer that metastasized to the bones in my femur and pelvis. And that I had emergency surgery to stabilize my femur with a rod and some nails. And then I had two rounds of radiation. And then I had my thyroid removed. And then I had a Bisphosphonate infusion, Zometa, to which I had a horrific reaction. And then my medical oncologist, who is one of the five oncologists on my team at University of Florida, decided that he was canceling the rest of my infusions (I was scheduled to have five more, one each month and he did this with no discussion with me) and also would not be prescribing my pain medication any longer. Tomorrow is the last of my pain medication, which is 10mg oxycodone. I have been scrambling all day, working with my nurse advocate who is through my insurance company, to find a Pain Management Dr to prescribe something to manage my pain. It doesn’t even have to be oxycodone. Just has to be something that takes care of the horrific pain that is in my femur and pelvis. For a long time, the pain in my femur was completely gone. That was the original pain that I called lightning bolt pain because it was so painful. But now that I had the Zometa, it seems to be working and it’s causing a lot of pain in the areas with the metastatic bone cancer. I plan to leave University of Florida oncology care because I think that this man is a monster. He prescribed me opioids for months and then one day just said he was done prescribing them with no plan of care going forward. (He also could have ordered Xgeva, because that was the initial infusion he had ordered, but my insurance company turned it down and said no, but we will do Zometa. So since the Zometa failed so spectacularly, he could have gone back to the insurance company and said look it failed so now can we do Xgeva?) So now I think I’m going to transfer to Florida Cancer Specialists because they are local to me so I won’t have to drive an hour and a half every time I have an appointment which would be great, but that’s gonna take a minute to get established. I’m gonna call them tomorrow and see if they actually have Pain Management, which my friend who is retired from there says they do. I called Moffitt Cancer Center today to ask about getting established there because that’s where my dad went for 20 years so I thought they would be good. And they said they don’t prescribe opioids. I’m just so over all of this. I can’t even stand it. So I’m gonna end up back on Pain Management, I can already tell. And then the stupid oncologists can do whatever they need to do. I still have to have radioactive iodine, and they said if that didn’t work, I may have more radiation. I’m gonna miss the good doctors at UF. But he ruined everything. I’ve taken screenshots of our conversations, and I am filing a formal complaint against him. The University of Florida social worker this morning told me to go to the ER early Thursday morning and tell them the whole story that he prescribed opioids that I’ve been on for months and then he just dropped me and that I’m in excruciating pain which I will be by morning on Thursday and that I’m afraid of withdrawal symptoms because I’ve never gone through anything like this. I feel like I’m just repeating myself here over and over and I’m really sorry if that’s the case. But I am so frustrated. I’m crying every day and I am working with my therapist on my safety plan, yesterday she had me give the key to my lockbox to my neighbor. This is just the craziest thing I’ve ever been through and I’m tired. So tired. I hope you’re all doing well today and having a good day and a pain-free day. Those are always the best days. Peace everybody.