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Thank you for your replies. I did GO back to the Dr in Sept. & because of my questions, the Dr ordered a throgen scan & thyroglobulin. Well, surprise, surprise! My thyroglobulin was always around. 0.6 & now is 5.1. UGH! He wants me to come back in 2 months for thyroglobulin without thyrogen. He said under 10 is not 'horrible' but need to keep an eye on it. HELP!

Rustifox's picture
Posts: 131
Joined: Mar 2005

What doctor did you go back to, Karen? Is this doctor a specialist in thyroid cancer, ie an endocrinologist who deals with alot of thyroid cancer patients? Are you dealing with a hospital that handles alot of thyroid cancer patients?

I do understand him wanting to test thyrogloblulin when you are not hypo/stimulated by thyrogen, to see what it comes up as.

Thyrogen will often 'enhance' the thyroglobulin numbers by anywhere between 2 times and 10 times what they could be without the thyrogen stimulation - so that may still place your level around around that .60 or so, possibly near the same as it always was, when not hypo.

Some research has suggested that lower multiples (ie 2 to 5 times the amounts of thyroglobulin seen when suppressed) indicate a more serious concern; that higher thyroglobulin multiples can possibly indicate that the tissues are more like thyroid tissues (a good thing), and less mutated... but I think this is still in the research stage, at least as far as I know at this writing.

Here are some suggested treatment guidelines from a few sources:
NCCN Thyroid Carcinoma guidelines:
And AACE guidelines - these explain the varying levels of consensus in what treatment protocol is suggested uncer certain circumnstances:

Has your doctor done an extensive neck ultrasound? I would definitely want that to be done, by someone with lots of experience in thyroid cancer necks.

You may also want to do some reading of the posts on this website, Karen:

While Dr. Ain does not, of course, address specific cases, he has posted information on what he (as an expert in this field) believes should be done when thyroglobulin is detectable. I'm sure you'll find he believes that this should be treated fairly aggressively; his credentials are pretty strong, so I would tend to think he is probably right about that:

If you do not feel comfortable with this 'wait and see' approach, you may want to consider seeking a second opinion. Some believe that ANY thyroglobulin being detectable is an indication of recurrent or persistent disease - and either of those situations need to be dealt with, as untreated or poorly treated thyroid cancer can mutate into a much, much more serious situation. As you were originally treated in 1995, if it were me, I would not be happy with a 5.6 reading on thyrogen - anything above a 2.0 when thyrogen stimulated would be a concern to me.

Hope the links above may help you decide what you think should be done next.

Rustifox's picture
Posts: 131
Joined: Mar 2005

Karen, I located one of Dr. Ain's comments on thyroglobulin, on this page (where they keep the archive of his responses):

He says:

"Elevated thyroglobulin=persistent tumor
The presence of measurable thyroglobulin levels, even as low as 2, indicates the presence of persistent thyroid cancer.

There are FOUR common errors made in the followup of thyroid cancer: 1) permitting measurable thyroglobulin to be present without fully searching for the tumor source; 2) presuming that any persistent thyroid cancer MUST be in the neck despite the fact that it can spread to anywhere in the body; 3) presuming that thyroid cancer ALWAYS takes up radioactive iodine. (Sometimes, unfortunately, it loses this ability and will not respond to radioactive iodine for either therapy or scans. Sometimes it is "invisible" to the tracer dose of radioiodine, but able to be "seen" or treated with a larger treatment-level dose); and 4) placing any reliance in the assertions of any surgeon that he/she "got it all." (It requires a mass of at least 2,000,000 thyroid cancer cells in a lump for a surgeon to be able to see it and remove it during surgery. All thyroid cancer tumor masses of 1,000,000, 100,000,10,000, etc. etc. are too small to be seen by any human (or bionic) surgeon.)

As long as interference from non-radioactive iodine is ruled out, the presence of thyroglobulin in the blood should instigate a full assessment of the entire body using a variety of radiological techniques and sometimes using PET scans. Frequently, even after such efforts, the site of the persistent thyroid cancer remains undiscovered. In such situations, maintaining excellent suppression of the TSH with levothyroxine (keep TSH < 0.1) and maintaining a reasonable schedule (avoid bankruptcy or spending all your life in the CT scanner) of continued studies to search for this tumor is the best course with our current state of knowledge.
—ThyroidCancerHelp, June, 2007"

Thought you'd want to see that response. Now, the '2' that he is referring to could be thyrogen stimulated, or may be while suppressed - I'm not positive as to whether he meant suppressed or hypo/thyrogen stimulated, either, so that is a possible variable that your doctor is looking into. I do know most doctors do not ever want to see a 'detectable' - often read as >1 - thyroglobulin level when suppressed with a low TSH. All the best to you, and hope these are helpful.

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