[VFRgrl]

#1060612

Hi All; Long story short. Sick, finally diagnosed with thyroid disease to my surprise HYPER not HYPO from my symptoms. Large goiter; ultrasound showed one nodule 5.4cm X 5.1cm X 3cm on left side- one 1.4 cm nodule on right both complex. Biopsy benign- but nodule too large to rule out cancer. Put on 30mg of methimazole per day (been on since 2/25/2015) and recommended total thyroidectomy. TSI and Anti-thyroglobulin low/normal.
Surgical consult last week- surgeon says I have Graves?? No eye or skin issues. If I have Graves- I do not want to have surgery because there is a chance I can go into remission- right??
Anyone else with similar experience have any insight? Should I ask for more tests before I decide on surgery?
Thank you,
Lori

[Kimberly]

#1183632

Hello and welcome – we are fellow patients here, not docs, but here are a couple of thoughts.

First, when it comes to antibody testing, people who are truly disease-free have *no* antibodies. These tests are extremely accurate, but not fully 100%. Therefore, the upper limit is set at a point where they will maximize the number of people who receive a correct diganosis of Graves’ disease from the test and minimize the number of people who are falsely diagnosed. A lab result that is above 0, but below the cutoff does not mean that you are disease-free. In fact, I was below the so-called “normal” cutoff for TSI when first diagnosed; a year later, that value had more than tripled.

Second, have your doctors considered the possibility that the nodule itself could be overactive and causing your hyperthyroidism? There is a test called a Radioactive Iodine Uptake & Scan that can tell whether you have “hot” nodules. Many docs are now skipping this test if there is a definitive diagnosis of Graves’, but it would be worth asking your doctors about this.

Third, you might talk to your doctors about a new genetic test that can help distinguish between benign and malignant thyroid nodules. Here’s a writeup from the American Thyroid Association of a recent study:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-7-issue-5/vol-7-issue-5-p-8/

If you do in fact have Graves’, yes, there is a possibility of achieving remission with anti-thyroid meds like methimazole/Tapazole.

Wishing you all the best as you make this decision!

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