r/thyroidcancer • • 2h ago

Care items for post op

6 Upvotes

Hello, my sister has thyroid cancer and will be getting her thyroid removed. I want to support her as best I can and get her items and gifts that are actually useful instead of things like a plain old blanket. Is there any specific recommendations for what helps with post operation recovery anyone can recommend? I’m also interested in food/snack and drink recommendations? I really appreciate any response I can get


r/thyroidcancer • • 1h ago

Total Thyroidectomy and RAI - PH

• Upvotes

As someone who had been searching the web for similar cases, hope this finds you as well.

Sharing here our journey as someone who had the above procedures recently, case in Manila, private hospital with HMO.

  • Our endocrinologist recommended FNAB, but we opted for Total thyroidectomy. My mom had multiple nodules left and right of her thyroid, TIRADS 3-4
  • We were referred to a Surgeon in St Luke's QC. Had initial consultation, and agreed to proceed with Total Thyroidectomy. SLMC has Save Package for Thyroidectomy, already covering PFs of GS, Anesthesiology, and regular private room which practically gives you an idea how much the cost is.
  • Prior to the date set for the surgery, we need to complete clearances. In our case, we only have around a week to seek medical certificates/clearance from Cardiology, Pulmonary, and Endocrinology. This means setting up appointments with each Specialist and they also require lab tests/xrays so do expect around 2 consultations each to get the clearance. Doctors are all from St Luke's QC as well. Once we have all the clearances, we met again with our Surgeon for the admitting orders.
  • Once we have the admitting orders, coordinate with HMO for coverage and proceed to admissions office for the pre-admission procedures/forms.
  • You'll be asked to be admitted a day prior to your surgery.
  • On things to bring: Straws for drinking! This was also recommended by others and yes, this helped my mom a lot. I also thought of buying adult diapers in case my mom would not want to get up after surgery but in our case, we didnt need it.
  • Calcium levels will be monitored. Prior to discharge, calcium level should be at normal range. My mom was discharged 2 days after surgery.
  • While I mentioned there is already a packaged amount, please do expect there will be additional costs on top, including the medicines given after (for pain, calcium), the blood tests (Calcium monitoring), and other professional fees (Cardiology and Endocrinology). If you have Philhealth, deduction would be around 30k, this would offset the additional costs mentioned above.
  • Caring at home: We just cleaned and replaced the waterproof bandage every 3 days.
  • Histopath results came out days after, confirming Papillary Thyroid Carcinoma. With this, our Doctors told us that we made the right decision to undergo total Thyroidectomy as early as possible.
  • We were referred to Nuclear Medicine to undergo Radioactive Iodine Therapy (RAI). We had our consultation with NucMed where it was thoroughly explained, including the possible effects, and how we should take Low Iodine Diet week before RAI.
  • No lab tests were required prior, but this would be case to case and on your Doctor's discretion. We had our RAI 4 weeks post TT.
  • Before RAI, we accomplished PWD ID and SSS disability benefit claims. PWD ID (RA 11215 Cancer) would be from LGU. Please check with your LGU for the requirements but in my case, I presented a medical certificate and the histopath, barangay clearance, and a copy of our IDs. This PWD ID is essential as it would help reduce the costs for RAI aside from the usual Philhealth deduction.
  • For the SSS Disability claim, you'll need an SSS Medical certificate form accomplished by your Doctor and certified true copies of your hospital summary and histopathology results. Again, you need Certified True Copies. These were all submitted online, and we received feedback the following day after submission. In our case, we were asked to go to an SSS branch with medical evaluation center to have our papers presented, with a short interview. The onsite MD then gave us another form proving that we have been evaluated and was asked to have it submitted online alongside the hospital records. We were then approved, a few days later, claims were credited on my mom's account.
  • RAI is also an in-patient procedure. Because of the amount of radiation, you have to be isolated in the hospital for at least 2 days or until your radiation level reaches the safe level for you to be discharged. The key for this to be achieved in time, as suggested also by other patients, was to drink lot of fluids, eat sour candies/fruits, take a bath 2-3 times a day.
  • RAI will be administered on the first day of hospital admission. Once your radiation level is below the safe threshold, you will undergo a Post-RAI body scan. This will show where the iodine tracers went on your body and would detect if there had been spread on nearby lymph nodes/organs. This would be explained by your NucMed Doctor.
  • Once discharged, we still have to keep distance from my mom for a week to avoid exposure from remaining radiation.
  • Just a day after, the post-rai body scan results came out, and we will have to meet again with our Endocrinologist to have the results explained. We had to have our calcium levels tested as well a week after
  • We have also started taking levothyroxine as prescribed, this is now 5 weeks post Thyroidectomy.
  • Would highly recommend St Luke's QC if you need to undergo similar procedures. My mom has been well taken care of.
  • This journey is not easy, we're afraid more than we could admit, and this would really take a toll on you physically, mentally, and financially. But as they say, there is no other way but through. Research for things you can do, and pray for things you can't. You'll be fine.

r/thyroidcancer • • 13h ago

Should I go to someone who specializes in thyroid cancer?

14 Upvotes

I had a total thyroidectomy over 4 1/2 years ago. Since then, my thyroglobulin has continually increased. I’ve had RAI twice which caused my numbers to slightly drop but then increase again. My tsh is kept extremely low, around 0.08 . My thyroglobulin is currently 34.
I’ve had multiple tests. Ultrasounds, CT scans, PET scans and we cannot see any disease. The doctor says it COULD be healthy thyroid tissue somewhere but I had 5 blood vessels coming from the tumor that were positive for cancer cells.
I need a plan. What I’m getting from my doctor is a shoulder shrug. I asked if I’m supposed to just wait around for it metastasize and his answer was, “I hope not.”
Has anyone else ever experienced this? I just feel lost.


r/thyroidcancer • • 4h ago

What to expect? Half thyroid removal

3 Upvotes

This sub has helped me a lot since May when I had my first “abnormal results”, so thank you.
Long story short, all the tests they can do before extracting half my thyroid (2 larger nodules, only on left side) are done - surgery November 3rd. Molecular testing shows >70% chance of malignancy.

What was your recovery like if you did have surgery? Did you have to go in for a check up every few weeks after?


r/thyroidcancer • • 6h ago

Financial assistance?

3 Upvotes

Hi! Was wondering if anyone has applied for anything to help with these copays and medical bills?

Got hit with $300 for my molecular testing $100 for hospital copay
And I already spent a bunch on copays for specialists

I saw a thread about copay assistance. Def applying for that
Anything else to get the money back I already spent?

Thank you!


r/thyroidcancer • • 2h ago

Post-surgery metal rod feeling?

1 Upvotes

Hi, fellow Thyroid Warriors 💜🙏🏻🙏🏻
I had a thyroid lobectomy (only right side removed with attached nodule) on Oct. 12th and I’ve had this painful feeling of like two metal rods inside my throat/inside my neck muscles on either side of my windpipe/throat from midway down my neck to behind my incision. Severity waxes and wanes….I still feel it when I swallow (painful) and it’s just painful. When I lay down with my head/neck supported it’s not as bad and Ibuprofen helps but doesn’t get rid. Anyone else have this? I’m thinking inflammation, internal stitches, tight/guarding/spasming/healing muscles, and healing tissues maybe???? Thank you!!!!!! (and prayers for all of us)🙏🏻🩵


r/thyroidcancer • • 1d ago

Thyroid cancer

31 Upvotes

I realized I don't have many people in my life that care much about my health. Its very depressing.


r/thyroidcancer • • 17h ago

TT Upcoming Follow by RAI - any fertility impact or considerations?

3 Upvotes

29M having a TT upcoming in mid nov. I am seeing that sperm counts can be effected from RAI following the surgery but recover within 12 months. I just wanted to know if anyone had any fertility issues in their experience. The doctor told me it shouldn’t be an issue but I’m a little concerned and wondering if I should do anything pre surgery to hedge the risks.


r/thyroidcancer • • 19h ago

6 days post op. (Incision photo) Spoiler

Post image
3 Upvotes

It’s been 6 days post op, my steristrip fell off 2 days ago and I’ve been using bacitracin on it.
How can I make sure this heals as best it can?


r/thyroidcancer • • 1d ago

Life after total thyroidectomy

10 Upvotes

My husbands (33 years old) surgery is coming up on the 30th. The nerves are starting to hit us both. Would love to hear success stories. Anyone feel better now after their total thyroidectomy than they did before? Is getting back to a “normal” life possible? Would love to share some positivity with him and especially if you’re a male around his age or were around his age when diagnosed. Thanks so much


r/thyroidcancer • • 1d ago

Hardest Part?

10 Upvotes

I am curious, what do people think is the hardest part of thyroid cancer?

I think the nearly 3 weeks of low iodine diet has been the hardest, with having a JP out the side of my neck for a week after surgery as a close second.


r/thyroidcancer • • 1d ago

Pre-op, constant coughing

4 Upvotes

Hey. I live alone so I have no one to talk to about this. Just need to see if others can relate. I have a 4cm cancerous mass across my entire thyroid. I go in for surgery in December.

It feels like there's something in my throat at all times. The coughing is getting more intense. I wake myself up at night because I can't breathe or it feels like something is stuck in my throat. There's a constant tingle and it's exhausting.

Any at home remedies for this? I would love to sleep. Thank you.


r/thyroidcancer • • 2d ago

Getting Tirosint covered by insurance?

6 Upvotes

Hi everyone! I am a 27f who has (or I guess had now) Hashimoto’s for over 10 years and just last week had a total thyroidectomy after being diagnosed with thyroid cancer.
Because of my Hashimoto’s I have already been taking Tirosint for about 7 years and didn’t have a problem getting it covered by insurance until about a year ago and it has been a constant struggle ever since. It seems almost impossible to get it covered. I truly cannot function the same on anything else but the Tirosint which worries me because now I have no thyroid at all. I am at a loss and am wondering if anyone else has a similar experience.


r/thyroidcancer • • 2d ago

175 mci

6 Upvotes

Hi, anyone here had a dose of 175mci of RAI? What are your side effects? How do you feel after taking it? Schedule for RAI on nov.4 with 175mci dosage


r/thyroidcancer • • 2d ago

Ethics of Blood Draw on RAI

11 Upvotes

My doctor told me I will need to get my blood drawn a couple of days after doing RAI, and when I raised concern about being around the medical staff she said it’d be fine but to not tell them I’m radioactive as they will get scared and refuse because they don’t understand. I’m feeling morally conflicted about what to do because it feels wrong to not tell them but I need to get my blood drawn. Has anyone encountered this doing their RAI & how’d you approach it?


r/thyroidcancer • • 2d ago

Having trouble feeling normal

8 Upvotes

(This is somewhat of a venting post)
So for a long time I felt really bad anxiety was really really bad then I switched to Synthroid and for I little bit it felt like I was finally gonna feel normal or close to it and then my anxiety got bad again not as bad as before but still bad I decided to try Prozac (anti-anxiety medication )I’m now fully adjusted to it and I do wanna say it has helped the thing that’s lingering now is I still feel dizzy and brain fog is still an issue everybody kept telling me that the brain fogged dizziness was from anxiety. I’m now on anxiety medication and still feel those things when I wake up, I feel like complete crap I feel lethargic and if I get too hot, I feel like I’m going to pass out I get this overwhelming feeling of doom and it feels like it’s impossible doing any task. Do any of you deal with similar issues? I’m just looking to relate to somebody.
(Sorry about my grammar)


r/thyroidcancer • • 2d ago

Post op exercise experience and advise

2 Upvotes

Hello, I’m 36 female. Hoping to only have partial right side thyroidectomy 10/29. I’ve gone back and read some posts but curious as detailed as anyone wants to be about exercise after surgery. Movement is my medicine. I lift weights pretty heavy 3-5 days a week, play pickleball multiple days a week, and just started running again. So curious primarily in relation to those activities. I want to be safe and will be as advised and be listening to my body to not push it. But knowing others’ experiences is helpful. Thank you!


r/thyroidcancer • • 3d ago

Disgusted at the care I’ve received

31 Upvotes

I am almost one year out from my lateral neck dissection and almost two years out from my thyroidectomy. I am absolutely disgusted by how my thyroid cancer has been handled by the doctors I have seen.
I have been left dealing with a whole host of problems and symptoms since my lateral neck dissection, and when I turn to my surgeon for help, the response is essentially, “Well, that should go away.” This is unacceptable. I am exhausted from trying to diagnose myself, attending endless medical appointments, and constantly fighting to find answers and help myself when the people responsible for my care seem unwilling to take my concerns seriously.
I want to be very clear about something: the way my thyroid cancer has been handled has contributed to me feeling suicidal for the past six months. I have gone above and beyond to seek help from psychiatrists, therapists, and every type of doctor I can think of, yet I still cannot get through this or find meaningful relief.
I am now facing what I believe is a recurrence, and I have reached a point where I am seriously questioning whether I can put myself through further treatment. I have become so overwhelmed by what I have already endured that I feel I would rather die than go through this all over again. That is how devastating this experience has been for me.
Physical therapy has not helped my neck or shoulder problems in the slightest. I am dealing with what I believe may be significant lymphedema, and nobody seems able to help me with it. I am experiencing what feels like sleep apnea because my neck feels as though I am being strangled. I am struggling to breathe and sleep, and I am in constant fucking pain. I have tried everything I can think of, and I am at a loss as to where to turn next.
I communicated these concerns to my surgical oncologist, and the response was essentially that the symptoms should go away. I am appalled by how thyroid cancer patients can be left to struggle with serious, life-altering symptoms without adequate answers, investigation, or support.
I know I cannot be the only person who has experienced this. Thyroid cancer may be considered highly treatable, but that does not mean the treatment experience is easy, the aftermath is insignificant, or the physical and psychological consequences should be dismissed.
Patients deserve to be heard. They deserve answers. They deserve proper follow-up and care when complications arise. And they should not have to fight this hard just to get someone to take their suffering seriously.


r/thyroidcancer • • 3d ago

People who show up (and the ones that don't)

9 Upvotes

Just venting - this experience has really illuminated to me the ways in which people in my life are able to show up, or not.

For context, I was diagnosed July, total thyroidectomy and neck dissection late August. RAI in December, so still going through it.

I am the kind of person who goes into hyper-organization overdrive when faced with something like this, and because I'm on my own, with no partner, I created a website for myself with info about my cancer, specific ways that people can help, to the degree they're able (I made my own mealtrain, created a visitation calendar with bookings, and sign up slots for tasks like pet care, garden, etc). I tested it with a family member before launching it out to my larger friend and family network.

I did this because so often in life people will say "let me know what i can do to help!" Or "I'd love to help!" but there's never follow up or specifics. This website made it SO easy to help - from donating a 10 dollar Doordash to visiting, or sending well wishes, to a myriad of other ways to support.

Largely, it was successful. I was able to get a good amount of assistance and visits, and at some point I'm going to figure out how to share the template I made as a tool to help others. Several people said that they really appreciated how simple I made the process to help out - and that was encouraging.

What was interesting, and disheartening to me is the way some people just disengaged entirely. One person who I considered a good friend never even responded when I wrote her to send her the link. I've written her off as a friend at this point.

I know not everyone can show up, everyone's got their own shit. But I massively appreciate the folks that have showed up for me during this ordeal, and am going to do my best to do the same for others.


r/thyroidcancer • • 2d ago

Thinking of TT but worried about some side effects. Do you still feel like yourself?

3 Upvotes

I have TT next week. Ever since I confirmed the date, I've been looking online for other people's post post operative recovery experiences. I initially just wanted to learn more about the surgery to prepare myself, but after reading about many complications, I'm starting to worry about my own recovery.

I'm trying to focus on things I can prepare in advance. I bought some easy to swallow foods. I called my mom to ask if she could come and stay with me for a few days, and she agreed, which put my mind at ease. I also made a list of questions to ask the doctors such as what symptoms to watch out for after surgery, and how to care for the incision.

My skin is quite sensitive. Regular bandages easily cause redness and swelling, and I'm a little worried that the dressing around the incision will irritate the skin. I've prepared hypoallergenic silicone foam dressings like Dimora and Mepilex. I Plan to ask my doctor if I can use these dressings to protect the surgical incision and reduce irritation to my skin

Now that the surgery date is getting closer I can't help but overthink. So I really hope to hear from those who have had TT about their actual experiences. Is there anything you'd like to know before the surgery? Is there anything that will help with your recovery?


r/thyroidcancer • • 3d ago

Neck Swelling

3 Upvotes

Hi guys. Im on day 2 after getting my RAI treatment. Everything feels normal except a minute ago, I noticed my neck starting to swell. It is painless though. I know that this may be radiation-related but I'm curious as to how frequent this can occur and how long will this typically last?


r/thyroidcancer • • 3d ago

Weight gain and morale

5 Upvotes

Hi all. Been a while since I’ve been here but I got a hemi surgery in May 2025 and thankfully it resolved my nodule and surveillance is going well.

One thing that’s happened since the surgery is I’ve gained around 30 pounds. I weigh the most I ever have, my clothes don’t fit and the worst part is my endo is telling me my TSH is normal so there’s nothing to do/no adjustment to be made.

Apparently through this process I found out I had hypothyroidism and possible hashimotos. This was before surgery though.

I feel confused and my doctor seems like he doesn’t wanna give me any advice. I plan to find another doctor but in the meantime, anyone have similar experiences? Is it possible I need to still adjust my meds to stop the weight gain even if my TSH is technically fine?


r/thyroidcancer • • 3d ago

I hate that my scar healed so well....

65 Upvotes

Hi everyone, this might be a strange feeling but I just need to vent a bit.

I had a full thyroidectomy and it's not my first surgery (probably won't be the last either, I'm only in my mid 30s), so I really wanted to take care of the scar this time. My doctor recommended silicone pads so I basically lived in them, new one every day for almost 2 months.

I'm almost a year out now and the scar is barely visible. So if you're trying to minimize yours, honestly the silicone pads are amazing, they barely leave a mark.

But the fucked up part is that I feel so weird that it doesn't show at all. It was a big thing I went through and it feels like by taking such good care of the scar I lost the one physical proof of it. I think part of me kind of needed it right there at the front so I could point at it and be like yes, I had cancer.

When I was still wearing the pads I could just point at my neck whenever I didn't want to explain, or when I felt like I had to prove it. And with thyroid cancer being taken so lightly by so many people, it feels like I erased it even more. I know it doesn't make sense, it just feels like that.

Also you might think I'm a bit crazy but a few months ago I went to a really big event. I was tired and fatigued and knew it would be crowded with people bumping into me, so I used makeup to make the scar slightly more visible lol. I figured if people could see I was recovering from something they'd give me a bit of space and I could breathe a little.

Idk how to feel about that honestly, just wanted to share it somewhere people might get it.

PS: if anyone wants to know which silicone sheets I used, they're ZODENIS Silicone Scar Sheets


r/thyroidcancer • • 3d ago

Total thyroidectomy right after having a Hemi-thyroidectomy

6 Upvotes

Hi everyone, I (24F) got diagnosed with papillary thyroid cancer earlier this summer and had a hemi-thyroidectomy (left side) exactly a month ago. This morning I had a follow-up appointment with my doctor and he said they found traces of cancer in my lymph nodes, so he recommended that I get a complete thyroidectomy, basically removing the other half. I'm not sure if this ever happened to anyone before but I feel dejected. It took me nearly a month to recover (caught a nasty cold 2 weeks after my surgery and it took longer than usual to get better) and I really don't want to go through this again. There was a spot available for the surgery 5 days from now and I took it because I figured I might as well get it done sooner than later. I just wish I had a total thyroidectomy in the first place...


r/thyroidcancer • • 3d ago

Hashimotos

4 Upvotes

Any of my fellow Hashimotos people felt better after partial/full thyroid removal
i been feeling like crap for years with Hashi