Thyroglobulin rising post-thyroidectomy

May I ask what you were diagnosed with? I'm knew on here and have recently posted trying to connect with others on behalf of a loved one. It seems it may be a little harder to connect because of my loved one's cancer type.

I can't believe I forgot to post that info originally. Geesh.

I was diagnosed with papillary thyroid cancer, which was confirmed after the total thyroidectomy. They removed dozens of the lymph nodes around there as well, and a few of them they removed had metastatic thyroid cells. (I can't remember the official wording.)

After the surgery I did not have further radiation treatment or anything. Just the Synthroid stuff since then. But my thyroglobulin levels have been steadily increasing over the past several months. I only got concerned really because my Dr said she wanted a neck ultrasound (not scary) and maybe to put me on radioactive iodine (kind of scary).

@mift24 I really hope your loved one will be okay, and that you can find the support you need as well!

Have you had a PET Scan? I am also post TT and neck dissection for lymph nodes, 2 in front of neck.
Because the cancer was outside my thyroid, I will undergo external beam radiation, enhanced by chemotherapy. This is standard treatment for my status.
Since you had cancer in lymphnodes, is there a reason you have not had Radioactive iodine or some further treatment?
Take care.
Usually....if the cancer is contained in the thyroid and they have clean margins, the team may do no further treatment

Hi there! Hmm, so even though you had cancer in your lymph nodes you were never offered to have a RAI scan/picture taken? I'm not talking about having RAI ablation/Radioactive iodine treatment therapy just RAI picture taken. You think for some it would be a no brainer to offer this as in my loved one's case and possibly yours. I'm kind of having a hard time trusting what medical professionals say. My loved one's surgical pathology report said a positive margin was identified. Now today, we get a call after we somewhat bombarded them at post-op visit with questions and knowledge we informed ourselves with along with inquiries we had about the positive margin which is now being called "not a true margin" 😒 . At post-op visit with the surgeon, we were told this Mon. he would meet with a team to discuss their case/treatment. I was under the impression treatment plan may came about from that meeting, but instead today we get a call regarding the margin status which they changed as mentioned above to "not a true margin" Hmm, seems a little off to me and a possibly a more negative favorable margin win for them. At post op appt., I had asked can't you go back to try and achieve a negative margin. He explained as to why he cannot go back to the positive incision site to extract more tissue. Now all of a sudden it's a gane changer as far as positive margin. Hmm. You think a scan would had been offered to back up their so called new margin status. Now you can n understand my trust issue.

Hi
Yes you are indeed perfectly normal to question what next.
Your surgeon should be watching your thyroglubin serum and antibodies as they are
watching ine,
Having had a total thyroidectomy and some lymph nodes in my case they are watching the above levels as sometimes used as an indicator of cancer. Mine was papillary cancer.
They always cheap my lungs.
Its just with me my 4th year ultra-sound shows
3 areas of calcification.
Unfortunately the 3 tests were inconclusive. 1 CT scan, 1 PET scan and another CT scan. All with contrast.
I didn't agree to take the endocrinologist advice so I was moved under my surgeon.
Best move for me.
RAI treatment should not be taken lightly - the damage to other organs etc.
Surgery is better.
Lymph nodes can be taken out. That is better.
What sort of cancer?
Did you also have a dissection of the bed of the lobe which contained the carcinoma. I had 12 taken and 2 lymphs were affected.
With me the 2 lymphs are 8mm and 7mm and they have calcified.
Also the 19mm x 8mm also calcified could be my thymus.
My Thyroglubin serum should ideally be below 1. My antibodies stay about 15.
It was 1.5 but after the tests went down to .99 and then up to 1.7. Now down to .99.
I read that between 1-2 it could show cancer growing - either left there or returned. I think that 2 lymphs were left already infected.
The thymus can get cancer in it and the op is serious. I read all about that.
You don't give any indication how your serum is tracking. Please do reply. Today if possible as I am away from my desk in the next 2 weeks approximately.
The Pet scan with RA Iodine Infusion made the ? warm so I had an MRI of that. No brain abnormalities. Also an indocrine organ which converts T3 to T4.
That was great because that surgery is very serious.
How much thyroxine are you taking?
Remember that papillary cancer grows 1mm a year.
Take care.
Also there are 100 lymphs and 50 each side of your thyroid = 100.
cheri JOY. (tuckie)

Hi there, I replied to her questions, but mine were not informative but instead was about what we are going through which is why I'm replying on yours because it seems you are further along in your diagnosis. My question: Is taking RAI scans?/pics to rule cancer out just as harmful as the therapy? Reason I'm asking is because my loved had a positive margin on surgical pathology report they have now called to say is "not a true margin" My second reply to the original poster will explain my concern on this matter of wanting a RAI scan done. Thank you!

Hi
There is RAI Scan with iodine and there is RAI TREATMENT. They are totally different.

Initially when calcification was seen in the ultra-sound I asked the sirgeon to "just remove all 3 areas".

His reply said "Easier said that done".

When we had a face-to-face I said please explain.

It was the 19mm x 8mm ? area which he said was a big area. Then he thought it was my thymus. This has never been confirmed and I don't know swhy he doesn't ask as I had a CT scan with iodine ahead 6 months after last CT.

He told me he was retiring in December. I said "you will operate if necessary before you go?" He said yes. So the last CT early November.

He can't define whether the calcification is a scarring. I don't think he could remove the thymus as he does not have enough experience. But I'm a bit anxious as my Dad died of lymphoma and if thymus has papillary cancer in it - left it will spread to lymphoma. So I keep reminding him.

If the CT Scan with contrast x 2 is still not inconclusive in his letter he says I will go back to ultra=sound yearly tests.

I was lined up for a RAI Scan and the regime was to stop thyroxine for 3 weeks, no fish, low iodine diet. In 2 days without thyroxine I was already in hypo above TSH 4.2. I wrote to him and said I was scared because being TSH above 4.2 it would put my heart in trouble as I have AF an irregular heart and was taking meds for hypertension and rapid heart rate. Is there a heart specialist you could talk to about me. I would be Radioactive for 24 hours at least.

He knew I was against RAI treatment after my Thyroidectomy in 2020. Also against TSH in suppression.
After the carcinoma found in my right breast was in a milk duct so 0 cancer, I refused radiation after that. In 2005 no more problems and the last op was done by same surgeon as now with thyroid cancer.

So he changed it to a PET scan. 2 days without thyroxine, no carbs or sugar or no full on exercise the day prior.

I feel RAI treatment is very risky. If it was conclusive that cancer was back I would have a biopsy and then surgery.

RAI Treatment can cause leukaenia.

Suppression of TSH suppresses ones immunity with no replacement thyroxine. Covid is still around here in NZ.

I know the name of my follow on surgeon.

The PET scan was only 2 hours away and I had to go out the back door to my motel room - already booked in. The RA Infusion cane from Australia on same day and flight in Wellington was delayed because of fog by 2 hours.
So the infusion went Australia - Wellington - Auckland - Whangarei.

The other would be in Auckland RA for days, no going out, no meal arrangement etc. All utensils, cutlery, plates etc disposed or sterilised.

CT scans have very very RA.

Do hope this helps.

The problem with me is that all other ultra-sound scanners never photographed these 3 areas together.

The PET scan showed me as having no other cancer. A dot in lungs which was nothing, Left Leg Hamstrings showed up as inflammation, like bladder only. Otherwise unremarkable. I'm 76 on Thursday.

Do take your time but surgery is best believe me.

cheri JOY. (tuckie)

Thanks so much for all of this info! I'm sorry I wasn't able to reply sooner.

I don't have any idea why I was not treated further after there was cancer found in a few of the lymph nodes that they removed. Now of course I am very skeptical as to why I wasn't ever even given a better imaging scan than the neck ultrasound. (Maybe there was a MRI at one point, but I think that was for a neck injury come to think on it.) I was told I did not need any further treatment such as chemo or radioactive iodine or anything at all. I was assured that the surgery "got it all". I didn't even think to question my doctor or surgeon on that front. I'm afraid to look it up, but what all happens with radioactive iodine treatment? I would think that I'd have to stay in the hospital for some time because I doubt I could take radioactive stuff home! But I didn't realize it could damage other organs too. For some reason I assumed that iodine would only affect the thyroid or something. Naive, I know.

Currently I'm on 175mcg of thyroxine every day. Until recently I was on 200mcg three days a week and 175mcg the rest of the week. I've lost a ton of weight though over the past year, so I assume why they needed to adjust the dosage. If I'm reading the numbers correctly, the lowest I had was about a year ago at 0.5, then it's gone up slowly but steadily ever since to 1.3 as of a couple of weeks ago.

I'm trying to figure out a list of questions to come armed with when I next see my endocrinologist. Any suggestions? Thank you so much!

My endocrinologist didn't order any immediate follow-up imaging or anything after they "got it all" during the surgery. I didn't know to question that decision. What does having a 'positive margin' mean? I'm not familiar with that terminology.

Reading other people's posts like yours just is leaving me very...skeptical?...of my own doctors. I've never thought to question whether their decisions were in my best interest; I guess I've always just assumed that. I'm really not too sure now though!