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Posts: 19
Joined: Dec 2004

OK. I need advice.
After thyroglobulin post thyrogen it has been 5.1 & 4.2 two years in a row. My Doc not majorly concerned 'unless it goes above 10' Any thoughts?

Posts: 10
Joined: May 2009

I had papillary thyroid cancer in 2006, had total thyroidectomy and radioactive ablatation.
I was told my thyroglobulin should be less than 2. It was always much lower than that, actually 0.1 usually I believe. BUT, you should know that if you are having your Thyroglobulin checked you should also have your thryoid antibodies checked at the same time, because if you have thyroid antibodies then the Thyroglobulin test is not reliable to watch for cancer.

I found this out recently when our hospital started sending our Thyroglobulin tests to Mayo Clinic instead of a different hospital. Mayo sent the Thyroglobulin test back and said it was 0.1 or something low like that but also sent another test attached saying they checked for thyroid antibodies and that mine were high, therefore the thyroglobulin test is unreliable. My total body scans have been negative but guess what? I have had a recurrence of my thyroid cancer, and it was big, and there were other spots also. Thankfully it was all in my neck.

Something else I learned was that my tumor was not seen on the total body scan as it doesn't absorb iodine. I guess I didn't realize that could happen. So everything we were watching for wasn't telling us anything.

I had a modified radical dissection at U of M hospital recently and they took out the cancer and most of the lymph nodes in one side of my neck. People need to know about this thyroblobulin thing. It is not a valid test if you have thyroid antibodies.

We are relying too much on tests. My tumor could have been found by someone experienced feeling my neck and really paying attention instead of just trusting all of these tests. I could feel the tumor myself and so will now do monthly neck checks and will ask an ENT doc to also feel my neck a couple times a year. I will also have ultrasounds every 3 months for a while and then every 6 months. I am changing Oncologists because I can't believe that she didn't know about this thyroglobulin thing. My tumors did show up on PET scan thankfully.
But she didn't order that, the surgeon at U of M did.

I would get a second opinion if I were you. I don't mean to sound scarey. It is just that this is what has happened to me. I think every one who has a history of thyroid cancer should be having neck ultrasounds in case the other fancy tests aren't pickign it up.
Best of luck to you.

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