I just had a thyroidectomy and i have to wait about a month to do RAI . Meanwhile i cant take any thyroid hormone and im scared of gaining the weight i lost back . I was on a weightloss journey and worked soo hard to lose 13 kgs now im scared i will gain some back in that month can someone give me some insight on what to expect?

GLP-1 is off the table with having history with both, papillary and medullary thyroid cancers. I had a TT 3 months ago, on 137mcg levo and gained 5lbs so far. May not be much to some but I’m already a big girl and am concerned about the stories of weight gain. Currently on a low-carb diet due to being t2 diabetic (dx Feb25), walk moderately for 1 hr every other day, I avoid sugars. I take berberine but not as consistent as I’d like to help manage blood sugars. What are other survivors using to aid in weight loss, if not maintenance?

(I lost 65lbs with diet and exercise 6mos prior to TT and now I can’t seem to lose any since then)

This is driving me crazy and I'm trying to figure out if this is thyroid related.

The best way I can describe it is like fast paced zooming in and out of everything I see, especially when I try to read. Don't know if it's tunnel vision or something else? It's really trippy and I feel like I'm going crazy.

Background: TT & right neck dissection in May, diagnosed tall cell metastatic papillary thyroid cancer, RAI 3 weeks ago. Started levothyroxine 2 days ago (but vision problems started 2 weeks ago)

I have many symptoms but I've never heard of anyone on here mentioning vision changes.

I never had vision problems until I was diagnosed with hyperthyroidism in 2023 and I started needing glasses. I just redid my eye exam and had retinal imaging that didn't show anything in the pictures. My vision has slightly gotten worse.

Is this related to my thyroid or is it another concern? I am finding it really distracting when I drive and read.

What is your experience regarding weather after you swallow the rai tablet is it needed to sucking candy in just a mins after swallowing rai pill or you wait 24hrs before starting to do sucking candy? Kinda confuse because i don’t want to damage my salivary glands. I also read that starting too early can actually increase radiation exposure to the salivary. Is it best to just swallow water only and wait within 24 hrs before starting to have candies?

Hi everyone, I had a total thyroidectomy and neck dissection a few days ago. For the first three days, my voice was actually pretty good and could speak clearly but whispery. But now, my voice has gotten really raspy and weird, and people can barely understand me.

Is this something normal after surgery that will improve on its own, or should I call my doctor about it?

Im post 4 weeks my previous op which was partial thyroid removal, drs since have confirmed its the above cancer and I’ve gotta have the rest out soon. Feel sad wish they took the whole lot out last time around and wish i didn’t have to go through the surgery again.

First I want to thank everyone on here for sharing your experiences,really got me through. I had a big surgery, surgeon was amazing. A little over 2 weeks out and have finally turned a corner. Feel really good today. Still waiting for RAI in a couple weeks. Thyroglobulin levels after surgery are low 0.2. Took 70 lymph nodes on central and right. Just wanted to share my experience with all. Thank you all for your posts.

I had left thyroid removed in June. Since surgery I am always nauseous like a lump in my throat. I am on new meds and Dr said we need to give it a chance as it's been only a week with med. Has anyone experienced this after surgery and how long did it take to resolve?

Can I get fillers or botox after rai? Has anyone done them after and how long did you wait?

I recently had a thyroid biopsy on two nodules. A small one, 1cm TIRADS 5, came back as Bethesda VI and the other larger one, 1.3cm TIRADS 4, came back as Bethesda III. I have well managed hypothyroidism caused by Hashimoto’s. My endo ordered my annual ultrasound to monitor my many hashimoto’s (and apparently at least one PTC) nodules a little bit earlier than necessary because I told her my husband and I were hoping to try for a baby this fall. We are waiting ThyroSeq results for the Bethesda III but my doctor said if it is benign and an US of my lymph nodes looks clean she would be okay with an active monitoring approach for the small nodule, allowing me to have a baby sooner rather than later. This is important because due to career complications February is really the last month we could get pregnant. If not pregnant by then I’d probably have to wait over a year before trying again. I am worried that a thyroidectomy and the recovery would mean we miss that window. Basically I am wondering if anyone else has been in a similar situation, active monitoring of a nodule during pregnancy, especially if you knew about it before conceiving, and how it turned out for you? And conversely how soon after a total thyroidectomy you were able to conceive and have a healthy pregnancy? My endo said it depends on your TSH, of course, but would be reassuring and give me a little hope to hear it’s not impossible with a relatively short turnaround post surgery. Thank you.

35 M. TT in May. Oncocytic TC in left thyroid, right was clear. Calcium issues due to losing two parathyroids across the 2 surgeries. Had bad symptoms but not 'hospital worthy' just constant buzzing and tingling in hands, aching that felt like it was in my arm bones and ankles, muscle spasms in arms and quads, never really got to tingling in my face though under my eye or mouth would twitch sometimes. The tingling was near constant and it sucked. Was taking 5-6 600mg pills a day for the first month or so just to keep it tolerable.

I was prescribed calcitriol in July by Endo, and it took a while but I think I mostly found a pill routine that works to keep the tingling and aches away all day. I am down to taking 600mg calcium citrate 3 times a day and spreading it 6 hours apart, so like 9am - 3pm - 9pm. I take the calcitriol with the morning and night calcium dose so I'm taking that roughly every 12 hours.

This has reduced the symptoms to almost 0, but my question is, outside of bloodwork, what are signs that it is improving overall? Does calcitriol sort of 'mask' that it is actually worse since it suppresses the need for PTH? I only see my endo every 2 months so I'm only getting updates on my calcium in those labs.

Did you experiment with reducing a little bit on your own? I've tried cutting my 3pm dose in half to 300 and that seemed to work for a couple days but then one day around 5pm I just had a sudden wave of tiredness / depression (like I was really sad / anxious but knew it wasn't a normal feeling) and developed bad tingling in my hands that lasted a couple hours, so I went back to a full pill.

Hi everyone,

I had my surgery on 08/05, full thyroidectomy with some lymph nodes. I know my voice will take time, but I’m unsure if I should be this quiet a month out? I went to dinner with a friend and it was incredibly hard for my friend to hear me. We had to sit next to each other, lovers style instead of across the table just so she could barely hear me. We tried to go to a bar afterward and no way would I be heard, we walked right out. Even just ordering lunch today at a non busy restaurant, the waitress could hardly hear me, I had to practically speak in her ear. Should I be concerned? At home, I knew my volume was low but I didn’t realize until I went out last night how bad it was. I’ve always been so proud of my loud voice. Now I kind of.. don’t even want to leave the house after the last few times out 😔 would love any encouragement because this is probably the most bummed I’ve been post op.

Hey guys! How often do you feel need to adjust the dosage of your levothyroxine? Is it okay if symptoms of Hypothyroidism reoccur every 3 months? P.S. Had papillary carcinoma and partial thyroidectomy 1,5 years ago.

Hi ! My husband is expecting to do rai 150 in the end of this month , we’re worried if the rai is gonna work and it’s gonna be enough. Has anyone had the same diagnosis with vascular invasion and surgery and rai was enough? Thank you

I had thyroidectomy back in 2021, due to cancer. I did RAI the same year. Now under stable conditions except that I feel strangled whenever I drink my Levo (Eltroxin 200mcg). What could be wrong?

Has someone experienced the same thing? I dont feel strangled when I dont drink.

Hi all! Just had a left completion thyroidectomy with lymph nodes removal last week. Slowly getting better! It did come back as Palpillary Thyroid Carcinoma (Which was highly suspected) but no lymph spread! My ENT said that they are having their tumor board meeting in a few weeks and they will discuss my case. They are going to decide if I need radiation. He said the biggest reason they are still considering it is because I had the BRAF mutation. I guess I had just assumed that I would only need it if there were signs of spread. Has anyone had to do radiation even if there was no lymph spread?

Am I the only one who actually enjoys this diet? 3rd time doing it for RAI in 2 weeks and I like the fact that it forces you to eat clean and healthy. As someone who struggles to stick to there diet it’s a good reset mentally to put me back on track being that you can’t cheat on it. Already down a few pounds the first week (more than likely water weight from depleted sodium intake) .

Hello! Its been 6 months since my bilateral nech dissection and TT, and 5 months since RAI. The first month after my RAI, with 150mcg Levothyroxine, i was still like around 60 on my tsh. The doctor increased my dosage at around 200mcg since i am a big bear boy(rawr!). And around 2 months after the dosage increased, I am still above the target level of TSH at around 8. Doctor again increased the dosage and even switched to a more expensive brand of Levothyroxine. And now, I am already taking like 250 mcg of Levothyroxine in a day. I am meeting my doctor again next Saturday, and we will check again if my body responded well to the dosage increase. My concern is that, Is the brand replacement really necessary? I cannot afford to keep up with this kind of brand (euthyrox) with my budget. And at one month of 250mcg, will my TSH adjust to the optimal 0.1 that fast? My other concern is that, after increasing the dosage, i get sleepy and lazier and also my appetite increased. Like i get hungry easily despite my stomach being full. How can i deal with this?

So mine was a liquid not a pill. Also, the docs told me NOT to use sour candies or anything sour at all! They said it's NOT recommended anymore due to the saliva glands bringing in too much blood from sours which they said bring too much radio iodine into the glands. I told them what I heard here on reddit and they just stuck to their story. Hmm?

Just curious if anyone else has all 3 in one. After surgery did any symptoms get worse?

I'm expecting to be discharged from my RAI hospital stay today, apparently my radioactive levels were borderline yesterday so they're quite confident I'll be good to leave today. The first day I took the pills and all day yesterday, I felt almost no side effects. Just a minor headache the first night, easily treated with Tylenol. What's weird is, today (day 3) I'm feeling woozy, slightly nauseous, and feeling the swelling start in my neck/salivary glands. Other than the salivary gland issues/potential taste issues (of which I don't have yet, fingers crossed), I thought I would've been in the clear for nausea/dizziness. Anyone else experience these symptoms later on in their treatment? Obviously I'll as the doctor when they come see me today, but curious if anyone else experienced something similar and how it went from there.

Hello everyone! Bit of context here, as I'd like to share my story both to vent and listen to your opinions on the matter.

Around two years ago, I was diagnosed at 23 with PTC. Like many, I was told it was "the cancer you want to have, if you have to get it", and I was told it would be a blip in my existence. Surgery, maybe RAI, then just a pill for the rest of my life.

Suffering from general and health anxiety, I somewhat held onto this notion and held through my fear of hospitals. When pathology came back from the surgery, it stated the following: Follicular variant of PTC tumor <2 cm, 3 lymph nodes pulled and affected. As such, I was told I'd need to get RAI, which I wasn't too happy about but ... well.

Fast forward to this center, I get scheduled for my first dose. As it works here in Italy, you have to stay 5 days in isolation in the hospital. At the end, you get a full body scintigraphy to locate what lights up.

On my first round, only my thyroid bed lit up on scan. However, upon followup some months after, my TG had remained exactly the same before treatment: each time at 6. TSH was suppressed at 0.1 throught my whole history.

My doctors were very concerned and told me I needed to get a second stronger dose this time, and quickly. You can imagine how scared I was being told the first round seemed to have brought no result. Still, I was continuously told I needed to trust them from the people around me, so I underwent a second treatment, obviously stronger this time.

Second time around, it was brutal. We went the Levo suspension route instead of the Thyrogen shots, so I was one month without meds. Last two weeks before treatment and one after, I was forbidden to drive. Without counting the LID diet and all the additional crap that I didn't want to deal with yet another time. I also completely lost my sense of taste for almost two months after, and bid farewell to my parotid glands which got blocked and nuked.

Lo and behold, the scan after my second dose shows that nothing is lighting up. My doctors begrudgingly tell me it was not effective, that I will not have any more RAI as nothing showed on screen, and that we're going down the strict follow-up path. There is a little spot in my neck, next to my carothid, about 6mm big. They want to keep it observed and see how it behaves.

Strangely enough, however, my TG drops all the way down to 0.6. They say it was likely microscopic cells somewhere they cannot see, and they cannot explain the spot in my neck.

However, during the follow-up appointments in the following months, I start losing sense of what the hell is going on. My TG has creeped up from June of last year (the date of my 2nd RAI dose) from 0.6 to 4.6. I had the second PET scan of my life and it shows metabolic activity where the silly spot is, so I'd assume the problem is there. Everything else, nodes in the neck area and most importantly lungs, are clean. CT scan also confirms the same.

Ultrasound continues to show the same 6mm piece of shit, no other lymph node appear ssuspicious. In the past, shortly after my surgery, three weird-looking ones were biopside just for our peace of mind and came back clean, aside from going back to looking normal in the following months.

The original plan, agreed upon after my 2nd RAI dose, was to keep my situation monitored and surgically intervene when the spot reached at least 9mm. In the meantime, ultrasounds, bloodwork, one PET and one CT scan a year to see if anything pops up.

Now, to the present. I get a call the other day from the center. My doctor is not happy, says TG is moving to fast, and drops the news: we want to do a third RAI. Mind you, up to now I had reached 300mci. They said they'd combine it all into one last round of 300mci, reaching the limit of 600mci.

I refuse on the spot. I say I'm not going to accept any more treatment like this before properly discussing together. My case, says the doctor, will be brough to the multidisciplinary tumor board once again and they will call me back to discuss what approach they want to take with me.

In all, absolute honesty, I am completely out of my mind. I am furious, I feel betrayed, and most of all I don't feel confident AT ALL in how my case is being handled.

It seems absurd to me to reach my lifetime limit of "risk-free" radioactive therapy just to reach a TG of zero. What if I need to get surgery for a reoccurence again in the future and I have already played all of my cards for this singular spot/lymph node that's not even growing? They were very dismissive when I asked them this in the past, saying "oh, the risk for Leukemia and other secondary cancers rises after that, but only about 2%!".

I also cannot for the life of me understand why they're changing their version each time I see them. First they tell me they suspect I'm RAI resistant, now they want to repeat this shit again? I know doctors cannot foresee the future, but to me it almost looks like they have no idea what to do and change plans on the spot with no clear intention of why we're doing this.

There are many other details I could add, but it would only make the story longer. What I would like to hear from you is your thoughts on the matter, because I'd honestly like to rip the skin off my bones as of now. My anxiety is through the roof and I am utterfly furious, because I had just decided to go back and start uni after putting it all on pause to get through surgery and treatment. How utterly charming to start and already knowing I'll have to take weeks off because of something that should have ended years ago!

At 25, two years after the diagnosis, I'm still dealing with this crap when my pathology seemed like a walk in the park. I can't understand why people with 100+ lymph nodes get a single dose of RAI and go on to live happily ever after, while I'm still in the trenches with 3 lymph nodes and a relatively small tumor, no strange variants, no aggressive mutations such as BRAF+. Not saying I wish others would struggle to, but I am seriously questioning what the f*ck my doctors are doing.

Thank you in advance for reading all the way down here. Your forum and your stories are keeping me somewhat company as I navigate something that makes no sense to me. And for anyone reading: I am in Italy, so while I now know by heart many reputable centers in the States, it's sadly not possible for me to visit.

Hi All,

I am a week and a half out from a PT due to a 4.8 cm nodule too big to have an accurate biopsy on. With a history of breast cancer and a CHEK 2 genetic mutation, we removed half as a precaution. At surgery, doc said it looked to be noncancerous, but we do not have path back yet.

Anyway.....I have never been on thyroid medication and other than numerous nodules on both sides, have had no issues (That I am aware of). We left half in with the hopes that it would pick up the work of the other side and I wouldn't need additional medication.

Again, I am a week and a half out and I am exhausted. Like crazy exhausted. I didn't feel like this a few days ago. I have had 2 surgeries this year for breast cancer and didn't feel like this so I am thinking it isn't regular surgery recover. I am finding it hard to believe I would feel hypo side effects this early, and I know it is early so I need to give myself grace, but I am wondering, did anyone else have symptoms so soon? How long after surgery did you feel side effects and what were they?

I have lab testing next week and an endo appt the week after so that's already in the books, I am more just asking for personal experience. Thanks!

We only discovered that there were tall cells (20%) after the surgery. Before my surgery, the surgeon seemed optimistic that it wouldn't affect my lifespan. But the endocrinologist who is now overseeing my care after surgery is not reassuring me that everything will be totally fine. When I ask, she tells me that we "might be able to lower my risk" from intermediate to low risk. Which is nice, but I dont know if it'll happen.

Going in today for my RAI. I have to drive myself there and back home. Can anyone tell me what I should expect? Quite nervous about it.