Anyone whose had thyroid cancer??

[webber78]

I was diagnosed with thyroid cancer last October and had a total thyroidectomy followed by I-131 Radiation. My doc has played with my meds ever since January of this year, with little to no improvement in how I feel. He did blood work every two weeks for quite some time and for a while he kept telling me my numbers were within range and my meds wouldn't be increased. I still felt horrible so I decided to get a second opinion. My new doc did bloodwork and found that my TSH was 36 (not nearly as high as some others have reported here) but high enough to keep me feeling horrible all this time. She also found that my thyroglobulin level was "alarmingly high" and is about to send me to do all the scans and tests again to recheck for cancer reoccurance. From what I understand, a high thyroglobulin level indicates a problem, especially when you don't have a thyroid gland. Anyone have any information or has anyone been through anything similar? I'm at my wits end trying to understand all this and just want this to all be past me and move on to feel better. Thyroid problems are horrible.


This discussion is related to Extremely high TSH level-117.

[sleepy5293]

i had thyroid cancer last April, i didnt have the money to get the radiation treatments. is this a bad thing and is it to late to go to the doctor and get it now. i am worried that the cancer may have came back.

[utahmomma]

I had a horrible endocrinologist the first time too.  I'm so sorry!

For a cancer patient (let me specify - for *papillary or follicular carcinomas*) the thyroglobulin level is a marker for cancer recurrence.  It isn't for medullary or anaplastic thyroid cancers.  What type of thyroid cancer do you have?  Since you had I-131 (or RAI) I'm assuming it was papillary or follicular (or a combination).  At least I'd hope.

Your TSH level *must* be suppressed to below 0.1 and your thyroglobulin (Tg) is supposed to be indeterminable or at least below 0.02.  A rise in TSH and Tg is an indicator of a cancer recurrence.   Another dose of RAI and a whole-body scan (WBS) is indicated.

Here's a great, basic site on thyroid disorders:  http://www.endocrineweb.com/thyroid.html

Find out what your thyroglobulin level is.

I'm so sorry you are going through all of this!!!

{{{{{HUGS}}}}}

Utahmomma
papillary carcinoma '03, second surgery '04
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with distant metastases and three doses of RAI)
another sister with precancerous nodules
daughter with precancerous nodules

[redhed87]

I'm glad you got a second opinion.  I am on 250 mcg of synthroid to suppress my cancer.  My TSH is close to 0.  It took 7 months to get to this dose, but I feel great now. thank goodness you got a second opinion. I hope you are seeing an endo.  My primary has no idea how to treat thyroid cancer survivors.  Good luck.

[pep88]

First of all, I'm SO sorry you were under such horrible care and have felt so badly for so long.  To go through a cancer dx and all that that entails AND to have cr@ppy care too, just plain isn't fair!  

Thirty-six is SHOCKINGLY high for TSH after cancer!  Your doc probably caused your reoccurance and should be reported!  Your dx closely parallels mine timing wise.  I had my TT in Sept '07 for cancer.  I'm coming up on my one year scan and I've got my fingers crossed, but my meds have been meticulously maintained by a fab doc.  Yes, I had issues with the meds, but I've been feeling well for quite a while now.  And you will too, very soon!

Yes, the marker for cancer is the thyroglobulin level and yes, your first doc didn't keep your TSH low enough to keep the thyroglobulin in check, most probably... But, you are under better care now and with another dose of RAI, you should be fixed up in no time.  

There is no time like the present to take the reigns of your healthcare.  Just by finding this site and posting, you've taken an important step.  We are all here to help and support you.  Welcome to the forum.