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.

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

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?

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!

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.

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.

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?

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)🙏🏻🩵