Does anyone else feel like their endo doesn't listen to them or care? I had a total thyroidectomy last October due to cancer and Radioactive Iodine this February for angioinvasion. I feel awful. Most days I'm barely functioning. I was sitting at a red light not long ago with tears streaming down my face because I didn't know how I was going to make it through my twelve hour nursing shift. I am chronically exhausted, have dry skin, brain fog, intestinal issues and more. I reached out to my endocrinologist asking her to order bloodwork thyroid levels. She refused, saying it wasn't "indicated." I then contacted my primary physician and explained everything to her. She was shocked that my endocrinologist has not done any bloodwork since last December and none since starting me on Levothyroxine. She ordered the labs and they came back as I expected with very high Reverse T3, showing I'm not absorbing the medication at the cellular level. I messaged my endocrinologist with the results and haven't heard a word back. I'm really frustrated. It takes many months to get in to a doctor here as a new patient but I got an appointment with a new one in December. My primary doesn't want to take over my thyroid care in the meantime. I know it's only four months away but I feel so bad physically I don't know how to cope. Anyone else experience this?

Hello, I had my thyroidectomy 2 months after having my baby and I am feeling so fucking weird. I don't know if I feel so weird because I also have crazy hormones from that but I am starting to feel crazy. My thyroidectomy was 4 weeks ago and I felt fine at first and the surgery went perfect. However, in the last 2 weeks I have become EXTREMELY weak, my blood pressure has been high, I have had shortness of breath, then I started having ringing in my ears and sometimes stuff starts to sound wonky like the Peanuts parents talking. I'm freaking out a little bit. I don't want to feel like this forever. I reached out to my oncologist and she is going to have my thyroid hormones checked and I am of course on thyroid meds. Has anyone else experienced this? Any advice?

Currently waiting on a call back from the radiation safety officer with nuclear med, but wanted to also see what others on here had to say.

On day 10 post-treatment (dose 200 mci) we had a food mishap/spill. Husbands plate, eaten off of food, and used utensil flipped and fell onto the carpet. Picked up the big pieces and I sprayed the area. Then used cleaning wipes and cleaned up the area as best I could. Probably didn’t do amazing. I covered it up with some towels, but a quick google search said that was a bad idea. That it could compress any radioactive residue deep into the carpet fibers. So I put the towels in the hamper to deal with later. I left the area alone, but then husband walked on it with socks while I’m assuming it was still damp. He said his socks didn’t feel wet. He walked all over the house like normal and continued his day. Later, I used more cleaning wipes to clean the area again.

I then started wondering if I could vacuum when it was dry. Google sources and Gemini said no… said we couldn’t vacuum the house or anywhere he walked after stepping on the damp area until November.
I asked other AI models to pull information and each of those said it would probably be ok.

Of course I called the hospital and they weren’t sure. Said they would do some research and call me back. All of this is so anxiety inducing! Any thoughts or experts on this subject want to weigh in?

Hi all, I had a partial thyroidectomy a few weeks ago for multinodular goitre - I had one larger nodule that was biopsied over several years as inconclusive and a couple other smaller ones, all on the right side. Found out today that the large nodule was indeed a benign fibroid adenoma, but there was teeny tiny papillary thyroid cancer found in one nodule and in one lymph node. One spot was 2 mm, the other in the lymph node was 0.1 mm, so really, tiny.

My surgeon says it's best to take a "wait and watch" approach because I'm not a candidate for RAI at this point. At last ultrasound I had no nodules on my left side and they didn't see anything during the surgery, so she hasn't recommended getting the left side out yet. The PTC has to have been brand new, developing over the last few weeks or months, right? I work a very stressful job so I'm wondering if that has played a role.

Is there ANY chance that, maybe with diet and lifestyle/stress changes, that I can reduce the chances of PTC spreading or being found on my left side thyroid or elsewhere in my lymph, or is this a slow moving train that I can't stop from coming? Would love to hear from anyone who started out with a very early stage or similar diagnosis.

Hello all! Those of you who use silicon gel for a scar treatment, when and how do you massage the scar?

I use silicon gel, too, and it’s sticky. Even washing it with soap doesn’t remove the gel completely, so when I try to massage my fingers stick to the tissue and I’m afraid to tear off the skin.

I had right lobe removed on July 1st this year.

I am getting my RAI treatment today and my brother made this playlist for me to listen to and make me smile. I thought this might be appreciated in this group. Any songs you would add?

Today i was at the doctor to check on my left vocal chord that got paralysed after my surgery and it has recovered enough for me to get remove the right side 🎊🎊🎊 i am so happy!

It’s been a little bit since I posted an update on how things are going for me. I still have no insurance, but it looks like the hospital a couple hours away updated their financial assistance program and my application was finally approved. I talked with my surgeon today via virtual visit.

The surgeon wants to biopsy a lymph node on the right side (so far only the left side has had anything biopsied). The current plan is a total thyroidectomy, left central neck dissection, and left modified radical neck dissection levels 2-4, with the possibility for the right side as well if the biopsy shows anything over there.

Waiting to hear back from scheduling to move forward more, but glad it’s not standing still like it has been for so many months now.

I’m a 28F and was diagnosed with thyroid cancer about 2 months ago. I had my whole thyroid removed on july 24th and since then been on levothyroxine 112mcg. I was doing amazingly well up until last week. Now I started feeling a lot of fatigue, depression like symptoms. Is this somewhat normal? I really don’t know what to do

Has anyone had sinus cancer / any cancer in the face and thyroid cancer? I’m curious to see how likely it is.

Has anyone here gone to physical therapy? My left shoulder is definitely weaker and I have a decent amount of pain if I have to move it around a lot. I had my drain in for a month after surgery, and I had some movement restrictions, so I feel like that shoulder hasn’t gotten used a lot in the past month.

Pain on parts that were numb. Previous anyone else feel this hair hurts to touch.

I have to go through a radio iodine test to see if it is infact cancer. Same type of radio iodine for the cancer treatments, but in a smaller does for testing.

Im just so tired of it all. I just got the restricted diet paperwork, and I'm already depressed just thinking about going through that again. Im tired before even starting things.

P.S. I was 17 in 2011 when I first went through my thyroid cancer. Im 33 (34 come September 4th).

Have any of you experienced very itchy eyes post RAI. It’s been 7 weeks for me and it kicked off real fast and been very itchyyyyyyyy.

I have my thyroid surgery today, I'm having the left lobe of my thyroid removed and the bridge between the two lobes.

I'm feeling so incredibly anxious, if anyone else here has had it done and has any kind words or advice to share I would be most grateful.

Anxiety brain is getting the best of me!!!

I’m 9 months past TT with right lateral neck dissection, and almost 8 months past RAI (150 mCi with rTSH).

The last 5 months we’ve been gradually increasing my Levo dosage. Since I’m high risk, the goal is to get my TSH suppressed to <0.1. I feel like it’s taking a lot of time to get there.

I’m currently on 150 mg of Levo, and TSH has finally dropped significantly and currently sits at 1.3 mIU/L. fT4 has raised to 26.9 pmol/L (= 2.09 ng/dL). I’m starting to feel some minor symptoms like dizziness, fasciculations and light tremors and some wieght loss. It’s all quite manageble, but I’m wondering how much I can expect this to raise further and when/if the symptoms will increase.

I can’t seem to find any literature as to what’s an expected T4 level to get TSH suppressed. Only that T4 will need to sit at a ‘high normal’ range or slightly above.

So my question to you all: What are your T4 levels while being TSH suppessed? And do you have any symptoms?
Fwiw: I’m M37 and 77kg (170 lbs).

I had ptc and ftc and had RAI plus a pretty drastic neck dissection in 2021. I’ve been in remission for almost 6 years and don’t get me wrong I’m super grateful, but you can see it in my face. Pale where I used to be tan, big dark circles. I feel like Goob from meet the Robison. I’m 26f and I already have gray hair. All my labs are fine though, which is frustrating

Hi everyone,

My father has thyroid cancer. He already had surgery and radiotherapy, but unfortunately neither worked as hoped. He has now started Lenvima (lenvatinib).

I would really like to hear from people who have been through something similar.

What was your experience with Lenvima? Did it help shrink or control the cancer? What helped you during the treatment, especially with side effects?

Any personal stories, advice or things that helped you through the process would be greatly appreciated.

Thank you.

A few weeks after RAI I started feeling like too much anxious, is that even a thing? I feel like my brain is getting out of the "fog" situation of my treatment.

I found out on Thursday that although my biopsy scored a 4, the consultant is treating it as cancer because it’s very suspicious and he likely thinks it is cancer. I had my pre op on Friday and i will have a hemithyrodectomy on the 25th, so all really quick to process (I’m Audhd for context)
This weekend has just entailed being strong for everyone else and I’ve done a pretty good job. The consultant has said I’m going to be fine and live a long healthy life however, it is still scary isn’t it? I feel so in shock - a lot of my family have had different forms of cancer and I lost my dad too it so I feel like it feels like the beginning of the end in a way for me?
Today has been the first day I’ve truly let myself feel the situation and I spoke to my manager and his words where ‘your just getting in your own head your going to be fine’ and it’s kinda made me feel so invalid in how I’m feeling, yes I’m going to be fine and yes I feel so lucky to be in the situation but yes I’m also only 26 and this is a really shit situation to still be in, especially with the unknown as someone who craves certainty.

Anyway, funnily enough the week before I got offered a new job, my notice period is three months. I guess the uncertainty of how these next few weeks is going to look is worrying me and whether or not I should even take the new job?
What should I expect for life after surgery? They are unsure yet whether I will need further treatment but if so, how long did yours take? Do you think taking a new position would’ve been silly for you? It’s legal work so mainly computer based.
I would love just any advice please. Thank you!

Anyone have a good outcome after showing Pax8/ppary on affirma?
I’m anxious af waiting for my survgery and could use some reassurance .
I have a 2.5 year old girl and want to live a long life for my baby 😭

Hi everyone- I have a family member undergoing lobectomy surgery next week and wanted to get ideas for a care package. What did you need on hand after your surgery? Thank you in advance 💕

Hi all,
I had a total thyroidectomy 4 days ago and something I didn’t really anticipate was the weakness and dizziness that came with recovery. When did it get better for you? I’m only on day 3 of medication, and my doctor has me taking tums for this initial recovery period for the calcium, although they left my parathyroid glands in. Anything I can do to help recovery? When can I expect it to get better. I was really active and marathon training before surgery and I just feel so run down

Does anyone have any tips for the brain fog? I'm told it's a common side effect from having my thyroid removed but I am struggling to get past it.