# Clueless and going crazy!



## Islander Girl (Oct 30, 2012)

I had a total thyroidectomy in '04 due to a less than 2mm papillary cacinoma nodule. Onc. said RAI wasn't necessary.
My last 3 blood tests have come back showing slightly elevated levels of thyroglobulin. 
2011:
TSH 0.400
Thyrobloulin <0.2

5/2012
TSH 0.043

9/2012
Thyroglobulin 0.5

My NP wants me back in mid Nov. to retest. She said if my levels are still elevated, she'll send me for a US. She's saying I may have early onset autoimmune disease such as lupus or Rheumatoid arthristis.

I'm thinking maybe a cancer reoccurane?

Also wondering if inconsistancey in taking my levo could cause the fluctuation in numbers.

Any help would be greatly appreciated. Thanks!!


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## joplin1975 (Jul 21, 2011)

Do you have the reference range for the thyoglobulin? Did they test the antibodies along with the thyroglobulin? Have you had regular radioiodine uptake scans since?

Mine was 0.3 a month ago and my doctor said that was "perfect."


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## Andros (Aug 26, 2009)

Islander Girl said:


> I had a total thyroidectomy in '04 due to a less than 2mm papillary cacinoma nodule. Onc. said RAI wasn't necessary.
> My last 3 blood tests have come back showing slightly elevated levels of thyroglobulin.
> 2011:
> TSH 0.400
> ...












We have many here who have the experience with this; just wanted to say hi!


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## Islander Girl (Oct 30, 2012)

Not sure if they tested the antibodies or not. I've never had any kind of scan. My Onc. said my nodule was so small and contained that I was going to be his first patient in 32 years of practice that he wasn't going to treat. I'm starting to think now, maybe he should have.

2 years after my diagnosis, my brother was diagnosed with 17 positive lymph nodes and mets to his kidneys and liver.

Since I'm going back for blood work again in a couple weeks, can you tell me what 
I should make sure they test for?


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## Islander Girl (Oct 30, 2012)

Thyroglobulin range is different on each set of lab results. 9/12 ref. range is 2.0-35.0


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## Andros (Aug 26, 2009)

Islander Girl said:


> Not sure if they tested the antibodies or not. I've never had any kind of scan. My Onc. said my nodule was so small and contained that I was going to be his first patient in 32 years of practice that he wasn't going to treat. I'm starting to think now, maybe he should have.
> 
> 2 years after my diagnosis, my brother was diagnosed with 17 positive lymph nodes and mets to his kidneys and liver.
> 
> ...


OMG!! Is your brother okay? How scary!! Yes; you need someone to take you very very seriously!


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## Islander Girl (Oct 30, 2012)

Yes, he's fine. Thanks!


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## joplin1975 (Jul 21, 2011)

Holy cow...your poor brother...

I'm honestly not sure how to address your questions. I don't know, specifically, how they monitor post-TT patients who have not had RAI. Without the RAI, you are going to have residual thyroid cells left over (which is normal). Those cells would uptake the radioiodine used as a tracer in the scans that many of us post-cancer people get. So I don't think a scan would be useful...but I'm not sure.

The TgAB (antibodies test) is usually draw along with the thyroglobulin because if you do have antibodies, it makes the thryoglobulin test inaccurate.

I am still learning about the variability of the thyroglobulin, long term. That said, my knee jerk reaction is that if you are below the reference range, I wouldn't be pulling the panic alarm quite yet.

"Often this Tg is coming from a small amount of normal thyroid left behind. This means that a measurable level of Tg does not necessarily indicate the presence of tumor."

See: http://www.thyca.org/thyroglobulin.htm


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## Islander Girl (Oct 30, 2012)

Thank you Joplin. That link is very informative. I feel much better now!


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## joplin1975 (Jul 21, 2011)

By the way, if different ranges were used, I am assuming, then, that different labs were used. If that is the case, the changes, again, might not be noteworthy (from the same web site) (also, my radiologist will not accept Tg results from labs outside of the hospital for this reason):

Tg Method-to Method Differences: Unfortunately, Tg measurement is technically difficult and different Tg methods produce different results. Tg measurements made by different laboratories on the same blood specimen from a patient can vary as much as two-times! It is important to compare Tg measurements made by the same method, if possible performed by the same laboratory. This is because method-to-method differences makes it impossible to tell whether a change in the Tg level means there is a change in the amount of tumor, or is just a problem with the way the test is done.


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## Andros (Aug 26, 2009)

Islander Girl said:


> Yes, he's fine. Thanks!


Thank goodness!! Whew!


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## Islander Girl (Oct 30, 2012)

Well, I'm even more confused now. The nurse just called from my Dr's office and said I needed to reduce my my Levo dosage from 125 to 100. When I asked her about my thyroglobulin level, she said it was .2 so, down from .5 when I had it checked 8 weeks ago.

Isn't an elevated Tgab level an indicator of the return of thyroid cancer? Can being over medicated affect your thyroglobulin level?


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## Andros (Aug 26, 2009)

Islander Girl said:


> Well, I'm even more confused now. The nurse just called from my Dr's office and said I needed to reduce my my Levo dosage from 125 to 100. When I asked her about my thyroglobulin level, she said it was .2 so, down from .5 when I had it checked 8 weeks ago.
> 
> Isn't an elevated Tgab level an indicator of the return of thyroid cancer? Can being over medicated affect your thyroglobulin level?


Bumping this up for the experts on this cancer stuff. I think lowering your thyroxine could be a mistake but I am not sure.

The others will know.

How are you feeling?


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