High T4 and High TSH after cancer

[emmylou115]

In 2001 I was diagnosed with papilary, folicular and medulary thyroid cancers. I underwent a full thyroidectomy, including parathyroid and lymph nodes. Afterwards I was treated with I-131. This was ineffective at treating the remaining tumor. In 2003 a second tumor was found, also in the thyroid bed. Both tumors were treated again with a larger dose of I-131, but without sucess. In 2004 I received a third dose of I-131 that also appeared to have no effect. In 2007, both tumors had disappeared entirerly. Since 2001 I have been on a dose of 200mcg (+/-) of Levoxyll which has kept my T4 and TSH levels normal. In the past month my T4 level shot up to 20.2 and my dose was cut back to 125mcg. My T4 is now at 11.4 and my TSH has increased to 2.9 (it was 0.02 at the end of march). Any thoughts as to what is going on here?

[utahmomma]

I-131 is an effective treatment for papillary and follicular cancer but NOT medullary thyroid cancer (since medullary is not a cancer of the thyroid tissue itself its a cancer of the parafollicular cells).  It doesn't absorb iodine so radioactive iodine is not a way to treat it (although it was necessary for the papillary and follicular).

http://www.endocrineweb.com/camed.html

your TSH needs to be controlled for papillary and follicular thyroid prevention and your TSH and Tg (thyroglobulin) levels would be indicators of a recurrence of these cancers but they will not tell you whether or not the medullary is back.  For medullary you need to have your calcitonin levels checked.

If you haven't had a complete neck dissection, you need one.  You should also have a PET scan to check for metastases.   If you aren't being followed by an oncologist or endocrinologist/oncologist, you need to be.  

Who is treating your condition??   Have you been tested for a genetic condition called MEN II???  Please don't leave this in the hands of a regular family physician or even an endocrinologist who doesn't deal with medullary cancers - you need to be followed very, very closely by someone well-versed in oncology.  The medullary is serious stuff.

[AR-10]

Have you had any other significant changes in the last few months?

Start taking any new meds, or a major change in diet or activity? New stress generator like college or a bad romance?

Any change in the way your taking your thyroid med?

[stella5349]

With the amount of cancer suppression you are reqired to maintain your TSH is way to high right now. You need to go back to your TSH of at least 0.02 which would require a med increase.

Call you doctor and get them to see what's going on. Maybe they are overlooking the fact you need to stay at a suppressed level.