r/thyroidcancer

I don't know what to do. I really do not like the endocrinologist I was sent to right after my surgery.
I was diagnosed with thyroid cancer 7 weeks postpartum after I had already established breastfeeding. I was told I need Radioactive Iodine (RAI) therapy and that I would have to stop breastfeeding.
My endocrinologist told me I could keep breastfeeding until just a week before my RAI appointment and completely dismissed my concerns about the treatment's impact on my breast health. I trusted him, and he gave me a lactation suppressant drug.
Now, I am exactly one week away from my RAI appointment, and I am reading everywhere that your breast tissue is supposed to be completely dried up and inactive for weeks or months before the treatment to avoid concentrated radiation damage.
What do I do? Do I call, cancel, and find a new endocrinologist? I feel so lost and let down.

Hi all. I (26F) had my thyroid removed in early May because of PTC. I was initially on 100mcg of Synthroid, but after a blood test, we changed to 125mcg about a week ago. Since my surgery, I’ve experienced some random extreme fatigue that will hit me out of nowhere. I go silent and get so tired that I must sleep. I wanted to know if this is something others have experienced, and how you “push through” when you have things you need to do and have kids, partners, etc. My partner has been my number one supporter through all of things, and I know these drastic mood shifts have been hard for him (obviously this is also hard for me, but from his standpoint I know things have been v up and down).
I was with friends today, and when I hit the wall of fatigue, I knew I seemed so out of it to them and not interested, but I obviously didn’t mean to; I couldn’t function.
All in all, have you experienced extreme fatigue after your TT? How do you cope with them or “push through”? How do you communicate with the people around you when you feel it coming on? How have you helped guide your families on how to approach it when you experience this kind of exhaustion?

Thanks in advance.

Just got my bandage just removed and it’s almost been three weeks since the surgery the nurses and the doctor said quit smoking even though they didn’t affect the cancer so what should I do?

About a month ago, my boyfriend was diagnosed with thyroid cancer, i don’t remember the exact one but it was the least severe with a 99% recovery rate (thank god). Unfortunately, someone spread lies and rumours about me cheating on him about a week before his surgery. It hurt me deeply as i couldn’t be there for him after, it’s been about 2 weeks since his surgery and of course i’ve had no contact with him so i don’t know how he is. Could anyone tell me what their experience was 2 weeks after surgery and how it went? I know every situation is different but i at least want to know what he could be going through even though im not there for him.. it would ease my mind a lot. thanks

So recently diagnosed with papillary carcinoma. A week and a half ago I went to my ENT. He is out of Loma Linda University in California. It is one of our better hospitals.. I’m not too concerned about the surgery. I do need to make sure, of course that it hasn’t traveled into my neck or vocal cords. My question is about after and what has led up to this. Over the last year and a half I’ve been on a fitness journey. I’ve lost 90 pounds I put on 15 pounds of muscle. I work out a lot five days a week with two days off. I have a very specific amount of food and macros that I will eat. I take supplements, vitamins, creatine whey powder. my concern is afterwards and my metabolism and my testosterone levels. They have assigned me to a endocrinologist that seems far too busy to even get me in. They put me for a virtual meeting sometime mid August. This was after I tried to make an appointment six times to see the guy . I want to know if it is possible after a thyroidectomy. to find a good endocrinologist that will be able to get my hormones in a balance that will let me continue to lose weight grow muscle which believe it or not can be done at 58 years old. Has anybody else in the group dealt with this? My typical workout regime is heavy weights. And some zone two cardio. And I’m just concerned that I am going to lose momentum or energy.. believe it or not that is the worst of my fears. Thanks for listening and any insight you can give me would be great.

Hi all - I had a total thyroidectomy and central neck dissection last August for PTC with lymph node metastasis. We knew I would need RAI due to BRAF+ and the size of my tumor (2.7cm). My surgeon put me on cytomel post op, but once we realized it would be a few months until they could get me in for RAI, my endo put me on 112.5 mg levo in September last year. I did RAI in November (thyrogen injections) and have had my TSH checked every 6-8 weeks since. I have had my levo dose increased to 125, 150, 175, and now 200 and my TSH is still at 9.5. I’m taking it consistently on an empty stomach first thing in the morning. My endo switched me to levoxyl instead of generic to see if I absorb that better, and is running a celiac screening too, but has anyone else had it taken this long to get their TSH suppressed? My T4 is normal (ranging from 1.2-1.4) and I weigh roughly 160-165lbs. My endo said this is already a really high dose for my size so something else must be going on to impact my body’s ability to absorb the levo. I thought I would have my dose more sorted out by now!

The good news is that since I had such a high dose of RAI (177), my thyroglobulin was completely non detect a few weeks ago and neck US was unremarkable!

If so, how long did it take for yours?

I had surgery about 3 weeks ago (partial thyroidectomy with no complications) and my voice hasn't gone back to normal yet. I still can't talk very loudly and I can't higher (??) my voice at all anymore. I wanna sing along to Ariana again 😭 My voice just can't do what I want it to anymore and it hurts to try.

On the same side as my lateral, I just found a new lump. My RAI scan didn't show any spread, but I've always been concerned that means it just wasn't iodine avid. And now there's a node I can feel on the left side - and nothing on the right in the same place. We're about to go visit my inlaws for two weeks and then it's another week before the scan. I'm nervous it's back. They took out 45+ nodes (16 positive) and I just feel like ... did she miss one?

I had a thyroidectomy last year and my libido hasn't been the same since then. Feel free to DM if you're unwilling to share publicly

Hi, I got my thyroid completely removed in February this year and fighting the “hormone” game now. Due to bad timing of all of this stuff (just became first time dad in fall 2025… want to focus on that and not thyroid stuff), I really want to get my energy level back.

I am on 125 LT for 3 months now and have the usual hypo symptoms plus some extra tiered eyes.
Current blood work:
- TSH through the roof and rising for the last months
- Ft4 mid-range
- Ft3 complete low range

(Bloodwork after 1 and 2 month of 125LT was always high ft4 and low ft3, after 3 month now fT4 came down for the first time)

Doc says: guidlines tell to upgrade the LT dose to 137 or even more, cause TSH so high and Iam quite bulky (85kg male), but the low ft3 might be responsible for the TSH, so adding that could also work. I can decide now … great.

So iam reading all the stuff I can find and will also now ask the good’ol Reddit for an opinion :)

Tldr:
3 months of 125LT
- TSH through the roof and rising for the last months
- Ft4 mid-range
- Ft3 complete low range

Doc says we can up to 137LT or add T3 .. he gives me the Choice … opinions?

My wife has brain fog issues ass a result of thyroid removal. I have run into a problem with keeping on her drug regiment. When she gets out of sync with her meds, theere are some interesting disasters. We are both blind so simplicity is the goal. I have decide to try being the dispenser of meds for a while. I don’t really want to keep this up because wonce she gets thee meds in line, I notice the fog issues get better, and I think she would rather be in control. Any suggestions on dealing brain fog and medication regiments?

I’m 6 years out from treatment and waiting on the annual surveillance ultrasound results is still a time of anxiety. Not expecting anything, but then again I wasn’t expecting cancer either.

Just me?

It’s been not even a week since I found out I have papillary thyroid cancer. Initially, I was told it would be a hemithyroidectomy. Then, because I sought out a second opinion at Memorial Sloan Kettering, I found out that my lymph nodes were affected and positive for cancer. They are now expecting a total thyroidectomy plus neck dissection.

I feel broken. I went from thinking I was okay a week and half ago to thinking I would need only the left side of the thyroid removed to finding out that the cancer spread to surrounding lymph nodes.

I’m a baby when it comes to pain. Yes I’m 31, but I’m also so pain adverse and always have been low tolerant of pain. For those who have had this same procedure, can you tell me what the pain compares to?

I got recently diagnosed with PTC. I have a small thyroid nodule 0.5cm on my isthmus. The nodule was an accidental finding 2 yrs ago and it was only 0.4cm. It is a tirads5 nodule.

My doctor decided to do an fnab on the nodule even if it is still small because my latest ultrasound result shows suspicious lymph nodes. The result of the nodule fnab is PTC Category VI while the lymph nodes are negative for malignant cells but it doesn’t guarantee yet that there is no spread as I am still yet to undergo TT.

I wonder how likely it is for a micro-carcinoma to spread to lymph nodes?

In December 2024, I had a total thyroidectomy for thyroid cancer, followed by radioactive iodine (RAI) about 6 weeks later.

After surgery, I developed several symptoms, including erectile dysfunction, brain fog, air hunger, low energy, and generally feeling like I wasn’t myself. I also temporarily went back on Ritalin with my doctor’s approval because I already had an ADHD diagnosis and had used it years ago.

During this period I saw multiple doctors, but none of them solved my problems. Eventually I started researching the medical literature myself and used AI as a tool to better understand thyroid hormone replacement.

My endocrinologist initially prescribed 12.5 mcg of T3 once every morning. It didn’t help. Then we tried adding another 12.5 mcg in the evening, which actually made me feel worse.

What finally worked for me was:

• T4: 150 mcg daily
• T3: 5 mcg three times a day, approximately every 6 hours

I also take my first T4 and T3 dose as a “pre-wake” dose, usually 2-4 hours before I actually get up (when I wake up to use the bathroom). I learned this approach from Paul Robinson’s CT3M protocol.

With this schedule, my FT3 stays in the mid-to-upper part of the reference range, FT4 stays around the middle of the reference range, and my TSH is usually between 0.2 and 0.6.

For ED, I also underwent ESWT and exosome therapy. In addition, I take:

• Cialis 5 mg daily
• L-citrulline 3 g daily
• Pycnogenol 60 mg daily
• Panax ginseng 3 g daily (cycled: 2 months on, 1 month off)

Today, my ED is completely gone. In fact, my sexual function is better than it was even before surgery. I regularly have sex two or even three times a day.

Before surgery, I needed 100 mg sildenafil to get reliable results. Now, daily 5 mg Cialis works extremely well. I could probably stop taking it, but since I’m sexually active almost every day, I prefer to continue it.

My air hunger has completely disappeared. I no longer breathe through my mouth. My brain fog is gone, and my energy levels are excellent.

Interestingly, even before my thyroidectomy my thyroid labs were considered “normal” (TSH around 1.5-2.0), yet I still had chronic air hunger and often breathed through my mouth. Those symptoms are now completely gone as well.

I currently weigh 106 kg, so I may need to adjust my T4 dose if I lose a significant amount of weight.

I’m sharing my experience because I know many thyroidectomy patients struggle despite having “normal” lab values. This isn’t medical advice—it’s simply what ended up working for me after a long period of trial, error, and discussion with my doctors.

Been a lurker since this all started back in December of 2025. Long story short, routine blood work showed elevated TSH levels. And with family history of thyroid disease, my pcp said let’s just look into it to rule anything out now. Then, at the beginning of January I found out we’re expecting our second child.

So, after an ultrasound, a referral to an ENT, two biopsies (the first being totally botched), and RNA testing, we’re planning to get the affected half of my thyroid removed.

They found a 1.8cm nodule on my right thyroid. Biopsy came back as “Follicular neoplasm with focal oncocytic features (cat 4). Background changes of cystic degeneration also noted”. Then the RNA results came back as “Suspicious, 50% risk of malignancy”.

Just had an appt with the ENT first thing this morning to discuss everything. Up until this point, I wasn’t really stressed tbh. I mean I was concerned but I was distracted with surviving pregnancy while being a sahm with our almost 2 year old. Now I just feel overwhelmed. Doc said 50% is too high of a risk and does not want to just leave it be (totally valid I agree) but being that I’m in my third trimester, doing the surgery now could risk preterm labor but that’s up to me what I want to do. And I don’t want more stress on my plate and risk having a very premature baby to care for. I will be having a c-section with this baby and ENT wants to give me about a month after baby is born then move forward with the surgery.

I guess I’m just here to kinda talk it out and see if anyone has any sort of advice or something. Of course I won’t know if it’s truly malignant or not until after the surgery, but I’m really stressing about the c-section, newborn trenches, then the lobectomy all while I still have my toddler at home who needs me too. Just struggling to process it all.

I’m grateful to be getting answers and I’m privileged enough to have a loving village of people in my life to help. But also, fuck man.

My thyroidectomy was in October so this is my first summer with the scar and it is finally starting to fade a bit, I'm curious how you all go about protecting your scar from sun exposure? Is sunscreen enough or should I be physically covering it too? How long did you avoid UV exposure to prevent pigmentation? I live in Seattle so our UV index isn't too high, but getting into summer I want to be careful about it.

One of my close family members told me it was my fault I got cancer. Idk how someone can come up with something so hateful to say, it doesn’t help all my emotions are messed up from having my thyroid removed and we’re still trying to correct the meds

I had a biopsy done April that showed the HRAS mutation and cancer at 70%. I opted for a total thyroidectomy instead of the wait and see approach as my aunt died earlier this year from her thyroid cancer spreading to her lungs and brain. Well, I had my thyroidectomy last week and just got the results back showing I had a perfectly healthy thyroid, even the nodule was benign and no cancer found at all. I’m shocked and angry and disappointed in myself for not getting a second opinion. How could my biopsy show HRAS and follicular cancer, but after removal and them testing the whole thyroid and nodule, it say no cancer and completely healthy thyroid?

PTC Classic variant. 30 percent of nodes sampled came back positive, including one lateral node. How bad is this? How likely that I have distant metastasis? Having one of those days where I am worrying so much.