r/thyroidcancer

I have to go in at 6am for a total thyroidectomy and I’m scared shitless.. that’s pretty much all. I’m afraid of all the possible complications. The aftermath on levo and the horror stories I’ve read about exercise intolerances, fatigue (which I already deal with), pain, etc.

Anyhow. I hope it goes well. Wish me luck?

I am a 2x Papillary Thyroid Cancer survivor. 2007 and 2022 recurrence in my lymph nodes. I am post menopausal and have gained a substantial of weight in the last 2 years and I don’t feel good in my skin. I have other health issues which make it very painful and difficult to exercise so I try to watch what I’m eating but I’m still continuously gaining. Would any of you survivors consider going on a glp-1?? My daughter is on one (against my advice) and has lost weight and looks amazing. Yes, I hear myself 🙄 I am feeling desperate. Thank you

I’ve had three ultrasounds and my nodule has gone from 1.8cm in October to 1.6cm in December to 1.4cm in April. It was tirad 5 and biopsy was AUS and cyto testing was “suspicious” giving me 50% chance of cancer so they want to remove it that lone. The shrinking makes me feel that I shouldn’t be needing this…. Surgery is in a couple hours though. I’ve been panicking the whole time :(

I am only 27, so I’m scared I’m going to be making the rest of my life harder

So a nurse caught a nodule in my neck around the size of 4.8cm, i had my right thyroid removed to investigate and it came back as "Right follicular thyroid carcinoma pT3a. Encapsulated with angioinvasion" none of my lymph nodes were affected.

Im getting my left removed next month and then a RAI pill (I think?)

Anybody know of anyone that has gone through this? Im not sure what any of this means

Total removal 2/11/26 positive multiple nodes with papillary carcinoma follicular and classical types. 42F.

I honestly wish someone had a brochure with all the possible side effects and complications after surgery, sure we hear about all the *normal* ones. Admittedly, I've had a tough time getting my Levo dose correct and it's only been a few months, but it was initially too high right after surgery and I had crazy heart palpitations (175). They lowered it to 125 and the heart palpitations stopped, but turns out that's actually way too low a dose. My most recent bloodwork (last week) was bonkers. I finally got into my Endo on Tuesday and she increased my dose to 150 and added 15 of T3. Tuesday night, before taking the new dose, my hands and eyelids started feeling uncomfortable I brushed it off as just exhausted. I took the new dose yesterday morning and by lunch my hands, feet, and eyelids were all swollen and uncomfortable.

Now look, I have allergies to everything I was pretty sure it was an unrelated allergic reaction or a reaction to one of the inactive ingredients. I messaged my thyroid "care team" wondering if I was having an allergic reaction. Their PA said: "If you are not experiencing other symptoms of allergic reaction it's most likely a common complication with low thyroid numbers and called myxedema and caused by mucin buildup in your tissues, it should clear up when your hormones stabilize. No additional treatment needed at this time besides the change in meds from Tuesday's visit. If additional symptoms such as low heart rate (below 55) or low body temperature (below 96) occur please contact the clinic at ***-***-****. If additional allergic reaction symptoms occur, please follow up with your provider at NW Allergy Clinic. Complete your blood work around May 21st to check thyroid numbers."

I'm sorry common? I did so much research prior to my surgery, after my surgery and not once did I see the word myxedema or mucin!?!?! Mucin build up?!?!?! I have had exceptionally stiff knees the last few weeks and sore wrists but I also have EDS and I'm in the throws of perimenopause so this isn't uncommon, so I didn't clock it as a thyroid symptom, but apparently that's also related (Dr. Google). Apparently it can progress and become dangerous but my increase in meds hopefully will keep that from happening. The Endo office probably gave the low heart rate/temp warning as a way of telling me to keep an eye out without scaring me (I can be a bit anxious I'm sure they have me flagged 😂🤣).

I'm really just here to post about myxedema and mucin build up so someone else can search this sub and find info 😉

This is like perimenopause and uncovering new not commonly mentioned symptoms at every turn!

For backstory, for the past year or so I was using my THC vapes a little more regularly, which I know is not great for my throat, and when I would get hoarse, I would decrease use and my voice would improve. Upon reflection, I've realized that it was getting worse in small increments, and as of Oct/Nov has not improved at all even though I stopped vaping. So I saw my PCP and she put me on a reflux medicine and referred me to an ENT.

The first doctor I saw saw that my right vocal cord wasn't moving when he scoped me, so he sent me to get head and chest CTs, with and without contrast. On one of them, the head I think, they saw nodules on my right thyroid and the lymph nodes around it, so he referred me to another doctor in the practice for an ultrasound. 2nd doc did an ultrasound and identified several nodules around 1cm and did a dry needle aspiration to biopsy. That was super uncomfortable but he gave me a lidocaine injection and was really nice about the whole process, stuck me about 9 times. I went for the follow-up this week, and he said that while they don't have all the results back, the cyto findings were consistent with metastasized papillary thyroid carcinoma.

Their solution is to do surgery at the beginning of May, a full thyroidectomy and right lateral neck dissection with nerve monitoring. The surgery would be done by the 2nd ENT I saw and another ENT/surgeon in the practice at the same hospital I delivered my son in, so I'm fairly optimistic about how it's going to go, logically anyway.

Emotionally I'm doing okay but obviously not great. My mom died very suddenly last January from a tumor in her bronchiae, and I'm still dealing with big feelings from that. She wasn't even in the hospital a month, and the tumor shrank some with targeted radiation and then grew with a vengeance and blocked her airway the night before they could get her to a special surgeon at another hospital. My son was almost 10, and it was very traumatic for all of us. My dad, my brother, and I are doing okay, but obviously there are good days and bad.

One of the biggest things I'm worried about is getting my son next weekend and having to tell him I'm having surgery the next Monday and the next time he sees me I'll have a gnarly scar. I don't want him to worry, but I also don't want to not tell him or lie to him. I see my psychiatrist this coming Monday and even though he really just does med management with me, I know we're going to talk about this, and I'm hoping he has some insight. I think I'm scheduled with my therapist the week they want to do my surgery, but that's something I'll figure out next week. I've been doing enough research that I feel like I'm at least a little prepared, but not so much that I set myself up for an anxiety spiral.

Right now I'm waiting on my boss to come back from vacation. Funny thing is, I was going to take this coming week off completely, but that may change because I'm about to have to be out for a few weeks. She's probably the best boss I've ever had, and she's very big on work/life balance and all the staff taking care of her health, and our company culture is the same way. I work in property management and we're opening a new complex in our city later this year, so things are about to get crazy for all of us, even if we won't be working at the new place. I did ask how time-sensitive surgery was, and the doctor said that PTC is slow-moving so we do have some time, it's more of an issue with his and the other surgeon's schedules, so if I wait, it will be around June/July. I have a feeling my boss will want me to be out sooner rather than later, so I'll probably have the surgery as it's scheduled now. Plus it'll be nice to not spend another birthday in the hospital like I did the year my son was born.

Another funny thing is that I recently got cancer insurance. My parents bought a policy back in the 80s when my dad worked briefly in insurance sales, and it's been bought/sold/transferred a few times but is with a pretty reputable company. My dad found out about it when going through his and my mom's financials, since she always took care of everything. He was able to make a claim about her death, and that's in process. The company also sent out a rep in November to adjust the policy and make him the policy-holder with my brother and I as beneficiaries. I go to my dad's to do laundry weekly, and the rep happened to be there one night when I went to do my clothes. He had me sign some papers for the beneficiary stuff, and then of course tried to sell me a cancer insurance policy. I have some combination of PDA (pathological demand avoidance) and ODD (oppositional defiant disorder), so when I know someone is trying to talk me into something, my first instinct is to be pretty resistant. My therapist actually thinks it's hilarious that I don't enjoy gambling for the same reasons (that, and I used to work at a video poker casino and I've seen too many people lose SO much money). I did allow the rep to sell me a basic policy because I live in south Louisiana where we literally have places like Cancer Alley, and with the way the world is going, I have a statistically higher chance of getting cancer than not. Plus there's my mom's illness, a history of colon cancer on my mom's side of the family, and one of my aunts on my dad's side had thyroid cancer about 20 years ago around the time she had her youngest kid. So statistically my chances are even higher. So I've started the claim process with them, and if approved it's going to help a lot.

One thing I hate about US healthcare besides how predatory it's become as an industry is how astronomically expensive everything is. I have 2 MRIs this coming week and after my insurance they're still $750 each. My CTs a few weeks ago were about $350, so I put those on a credit card. I've thought about applying for CareCredit, but I'm not wild about the APR on the 24-month card, and I don't want to sign myself up for more debt when I don't know for sure if the cancer policy will pay out (which tbh it most likely will) because that's what I planned to pay off my cards with. I've looked into financial aid and there's not a whole lot in my area but I was able to make some notes for things to look into. I've also looked into genetic testing, which I've considered for my mental health anyway, so I figure it couldn't hurt to explore the possibility with my doctors. I also don't want my DNA available to be bought/sold/redistributed, so I've got some reservations about that.

I still have the issue that got me here, which is ideopathic dysphonia. My ENT docs think it's possible that my thyroid is affecting my vocal cords or the nerve on the right side, but we won't know for sure until they open me up. Actually one of the reasons I got into this subreddit is because I was looking for resources for dysphonia, like voice amplifier recommendations. I've seen a few, and ideally I would want something small and portable that I don't have to wear around my neck, but also something I could use on the phone since I talk on the phone quite a lot for work. It's that last bit that's hanging me up mostly, but I'm going to be looking for solutions with my care team, present and future.

I'm not super sure why I decided to post, although I do journaling when my attention span allows, so I think it's mostly venting. I am curious if anyone has any recommendations on a voice amplifier device, and if anyone has advice on how to break this to my kid. He's newly 11 and auDHD like me, and he experiences some emotional things very intensely, so I'm trying not to upset him too much. I hadn't planned on telling his dad, but I may just so he can put my son back into regular therapy. That's a whole other can of worms that I have to once again put off worrying about until I have the capacity.

I also want to say that I appreciate all of the advice and info I've found in this sub, and it's really nice to see people supporting each other.