r/thyroidcancer

I’m 9 months postpartum. I have a beautiful baby girl 9 months old.

Found 2 nodules on my thyroid in March, one was large and biopsy was indeterminate so I decided to take it out.

Had a total thyroidectomy last week and today the pathology showed PTC confined to thyroid

How do I deal with it? I’m scared as hell. Will I be like this forever now? Scared of everything?

Any ideas on how to optimise my health and body after a full TT (thyroid removal) due to cancer and I’m currently taking levothyroxine as a replacement for the thyroid,

however there’s no way this tablet can fully replace the function of my missing organ!! The thyroid was much more that T4 which is all the replacement we get from levo

I’ve been on levo nearly a year and labs show ‘optimal’ ranges however I still feel out of wack.
Currently experiencing fatigue, brain fog and severe PMS. Also have other health conditions so nervous system isn’t the best, trying to do some work to calm this

I am pretty good at the basics- exercise and good
diet

I have a decent supplement regime, I was trying selenium to boost thyroid but last blood test showed was to much which causes issues in its self

Does anyone have any experiences with alternative medicines ect? Such as the pig thyroid, or adding in t3, or anything beyond that?

Or any other suggestions lifestyle changes to optimise health with no thyroid :)

Hello. About a month ago I was diagnosed with PTC. My nodule is on my left side and is about 1.7cm. I also have graves disease my endo is recommending having a TT. Now my surgeon is suggesting doing a partial. Has anyone experienced this or knows someone who is? I personally would opt for the partial and hoping to control my graves with meds or hopefully it goes into remission. My surgeon is letting me decide what I want to do and it's not an easy decision.

Pain isn’t the right word really. got my full thryoid out end of last year after my diagnosis, all is well and I’m back to my normal life relatively (I’m a professional singer so there's still some slow healing there but voice is back if it doesn’t have as much endurance as it used to, I’m sure that will return with time thank heaven) but sometimes because of where my growth was pressed I get the same like phantom choking feeling of having something pressed against my vocal cords/throat? Has anyone else experienced this? is it just the damaged nerves? Does it go away? Thanks so much in advance 💙🫶🏻💙

I'm 3 weeks post TT, and my detailed results have come back as well-differentiated PTC with tall cell component. BRAF positive, extranodal extension, angioinvasion, extranodal extension.

ATA risk is high, with a 30% recurrence rate...

But the staging and MACIS prognosis is good.

It's just that it's hard to put the concerning features away and not to think about it.

Hello, I’m starting my RAI treatment soon and I have to get off my thyroid meds starting Monday for a month, how was your experience being off the medication? I worried for that and that no iodine diet.

Hi, everyone! I received a papillary thyroid cancer diagnosis on 5/15. It's a 1 cm nodule that came back malignant after biopsy. I also have two other TIRADs 4 nodules, one on each lobe, that have not been biopsied. I was diagnosed with Hashimoto's last year if that becomes relevant to any questions I ask. TSH has been high normal, but so far unmedicated.

I am not looking for medical advice. I will ultimately trust the decision of my surgeon when I meet with him. Just looking for other people's experience!

Questions below. Any and all answers welcome!

1. If the surgeon gave you the choice between thyroidectomy and partial lobectomy, what did you choose? And why? Do you have any regrets?

2. For those who had partial lobectomy, did you end up needing the completion thyroidectomy?

3. Anyone have vocal cord/nerve damage afterwards from a thyroidectomy? Did it resolve? If not, were there treatments for long-term/permanent voice damage?

4. If your lymph nodes were clear, did anyone end up having suspicious lymph nodes anytime after surgery from microscopic spread? How long post-surgery did it appear? Was RAI recommended?

5. For those with partial lobectomies, did you end up becoming hypothyroid after surgery?

6. Last question, for those who have had thyroidectomies, did you experience hair loss and weight gain post-surgery? Was it easy to regulate your TSH with medication or did it take a while to find a balance?

I had a 4 cm nodule on my left thyroid lobe and ended up having a total thyroidectomy. My FNA was inconclusive(one was Bethesda 5 and another 3), and papillary thyroid cancer was only confirmed during surgery via frozen section. Final pathology later showed no lymph node involvement or vascular invasion.

Now I’m about 2 weeks post-op and struggling quite a bit with nausea while adjusting to levothyroxine. I’m also starting to wonder whether a partial thyroidectomy/lobectomy might have been enough given the final pathology results.

For anyone who’s been through something similar:
- Did you have nausea or other adjustment symptoms after starting levothyroxine post-TT?
- How long did it take for things to stabilize?
- Did anyone else second-guess having a total thyroidectomy instead of a partial after finding out their pathology was relatively low risk?

Any insight or shared experiences would really help right now:)

Hi! I had a partial and completion thyroidectomy last October/December, and I’ve been covering my neck with cotton bandanas when I’m outside. It’s been getting extra hot though, and I work outside sometimes, so I was looking into alternatives.

Does anyone have neck coverings that they love that aren’t UV neck gaiters? That was all that I really found or could think of.

Thanks!

Hi!

Everyone is different but I would love to hear which thyroid replacement medication made YOU feel like a human again. I am lactose intolerant so I can't take levothyroxine. Insurance won't cover tirosint and I can't afford it. I'm looking into Levoxyl, but would love to hear what medication has helped you the most.

Hi! 31F here diagnosed with PTC in Feb and had my Thyroid removed the same month with my RAI intake last Monday so I had my I-131 done 7 days after and unfortunately abnormal results.

Has anyone here ever had abnormal radioactive iodine uptake after RAI treatment that ended up being something other than thyroid cancer?

I recently had my post-RAI whole body scan and they found uptake in my lower 12th rib. They then did a CT scan which showed a bone lesion associated with a pathologic fracture. My endocrinologist is now referring me to an oncologist because he thinks it could possibly be another type of cancer, not just papillary thyroid cancer spread.

I’m honestly terrified and trying to understand if anyone else has gone through something similar. Did your uptake end up being metastasis, another cancer, or something benign? What kind of testing did they do next?

Would really appreciate hearing any experiences.

Had a partial thyroidectomy (4.2 cm nodule removed) March 11th and pathology found follicular thyroid cancer with angioinvasion. It had previously been biopsied twice and apparently had a false negative both times.

Because of that diagnosis, I had the completion thyroidectomy done last week. Pathology has found a 0.2 Papillary Carcinoma in that lobe. I realize that this is tiny but it still surprised me.

Has anyone else been diagnosed with both? My endocrinologist wants me to wait 4 weeks before we test my blood for tumor markers to see if it spread anywhere else. I’m assuming I’ll likely have RAI regardless with this new development.

Hi all,
I had half my thyroid removed 2 months ago and have felt so depressed to the point I have an appointment with my GP to talk about antidepressants this week.

I had a strong suspicion I had PMDD before the cancer diagnosis which had since been confirmed by GP, but since surgery I have been down in the dumps x 1000 and really struggling. It’s nothing to do with worrying about the diagnosis as I am and was fine about it, I can feel in my body it’s something physical/chemical.

I’m wondering if anyone else had a similar experience? I’m not on hormone replacement as I still have half my thyroid though I understand hormones are still a little out of whack.

Thanks all!

I had a partial thyroidectomy two weeks ago. I was diagnosed with 1 cm PTC on the right lobe. I'm waiting to see the surgeon post op next week.

My surgeon never mentioned removing any lymph nodes in the surgery. Is this routinely done in surgeries or is it a case by case decision ?!

Did anyone have just the thyroid removed without any lymph nodes removed ??

Thanks

One week post TT and my vocals aren't clear. I do the exercises told by the vocal therapist, but it ain't clear and still mumbled.

How long did it take to get the normal voice back?

Did anyone experience permanent issues with voice post surgery?

Hi all, I'm almost half year struggling after taking thyrogen injections in the end of my treatment. I had TSH 0.07 when they gave me thyrogen injections and from that time my nervous system crashed and hyper symptoms, anxiety, panic attacks started. Dose I used to take is not suitable for me anymore. I could not find my right dosage after half year. Does someone experienced this? It looks like my body is too sensitive and still ,,thinks,, it has too much hormone even my dosage is pretty much lower now.

hi all! I am spiraling a little bit here and I was wondering if anyone might have some words of wisdom. I (27F) had a thyroidectomy for thyroid cancer in 2020, and have been on more or less the same dose of levothyroxine since with no issues. I was last tested six months ago and my TSH was below 1 as usual— it’s never been over.

Today I went to a new provider to establish care and had mentioned that I have been feeling exhausted, they tested my TSH and I am at 29! I have been calling them all day, but have not heard back. My T3 is also below range slightly at 79.5, and I haven’t gotten any other labs back, and not sure if they ran any other thyroid labs.

I am freaking out for a few reasons, first being reoccurrence. there has been no significant changes to my diet exercise or medication, so I am perplexed as to where this would’ve come from. Another thing is that I have been steadily gaining weight over the past year for the first time in my life, and I’ve always struggled with body image. Seeing this test result, I have been completely unable to eat out of pure fear of weight gain. I understand how stupid that sounds, and I will be forcing myself to eat tonight, but the lack of control over my own body has made me feel sick and in return unable to eat.

Has anyone ever been in a similar situation and is able to share some words of wisdom or potential for what’s going on? I’ve been doing nonstop research all day (while i was supposed to be working) and haven’t been able to find any similar stories. :(

i’m hoping to speak to my primary care provider tomorrow, as I haven’t been able to see an Endo for a couple years and with my new insurance, can’t see one until September, even after explaining my anxieties to the office.

thank you so much for any kind words in advance!