Papillary Thyroid Cancer--possibly metastatic with symptoms?

[ShinyJabberwocky]

I was recently diagnosed with thyroid cancer from a cyst that had grown quite large on the side of my neck. The cyst itself didn't start off as a cyst, but rather a tumor that grew from the thyroid. Eventually the body ecapsulated the tumor in a fluid sac and grew. When the cyst was removed, papillary cells were found within the cyst and, upon a lengthy biopsy to UVA and other top-notch facilities, it was deemed that the cyst started off as a tumor.

Upon performing an ultrasound, my ENT saw there were one or two "sores" on the right side of my thyroid, but he wasn't sure that the operation should be to remove half of the thyroid or all. I was sent to Georgetown University to speak with Dr. Bruce Davidson, who specializes in Otolaryngology and thyroid disorders, and is a well-known surgeon himself. Performing a few tests, he decided that the entire thyroid should be removed and 6-8 weeks later, radioactive iodine should be used just to make sure everything is cleared away.

What worries me is the "metastatic" part of the cancer. I was assuming that when my ENT wrote "metastatic" on the doctor's note, he was talking about the cyst and how it grew off to the side--not that the cancer was in the bloodstream and going elsewhere. My major concern is that I am showing symptoms of something, to which both my ENT and the Georgetown Dr. found very strange because thyroid cancer does not show any symptoms besides a sore throat, protrusion of the mass, and so on.

My symptoms, starting from November 2008 (as far as I can remember), are high blood pressure (160/100 at times, but when I lie down, I can get numbers around 110/65 at the lowest--also, I can feel when my blood pressure is high because my body responds extremely poor), low body temperature (used to have a solid 98.6 average temp, but now my temp is usually between 96.7 to 97 degrees), general fatigue and muscle weakness, easily winded (although I'm attributing that to the fatigue/weakness), strong, sometimes irregular heartbeat (have issues sleeping at times because my heart is beating hard, but my blood pressure is low), dry skin, and some loss of balance. I've had high triglycerides since I was around 18, with my highest number being around 600. I'm currently at 333 since a September 2010 measurement.

I've had all sorts of workups and I've been to many doctors--Urologist, Cardiologist, Psychiatrist, Gastroenterologist, Pulmonologist (for possible sleep apnea, which I don't have), and an Endocronologist. In regard to my heart, I've had an EKG, echocardiogram and a stress test, which I passed all. I've had blood drawn numerous times and the doctors can't find anything wrong. My biggest fear is that the thyroid cancer has traveled elsewhere and is affecting my body in another way. Considering these symptoms appeared almost 2.5 years ago, I wouldn't say that the cancer is in my brain because people with thyroid cancer in their brain have a very poor prognosis, usually right under two years with surgery.

What I'm really looking for is the possibility of having thyroid cancer along with my symptoms. My doctor said it was unusual but he didn't say it was impossible. Or should I be worried about something else?

My surgery is on April 5th, so hopefully this will cure what is ailing me. And if not...well at least I'll lose some weight, right?

[ShinyJabberwocky]

Just an update:

Apparently my calcium levels are higher than normal, so my doc sent me to get tests for my PTH levels (parathyroid) and my calcium levels. Still waiting to hear back from that, but for an April 5th surgery, I hope my doc isn't pushing it too close; I'd rather push the surgery date back if they find out something else. Is it possible that my parathyroid could be giving me any sort of symptoms?

[MANmom]

Thyroid cancer usually metastisizes in the lungs and bones, not the brain.  It didn't state that it was Metastatic cancer, but papillary cancer, at least that is what you have written.  What was your stage score?  that would be stated as letters and numbers, example N1T2 or something like that.  You should not have nausea from the iodine, at least I did not.  I would suggest that you start an exersize program if you don't already by walking at least 20 - 30 minutes a day.  Keep doing it when you have to get really hypo before the RAI, it will help you in the long run. You won't feel like it, sometimes I struggled just to get out of bed, but my faithful dog would not let me stop!  When they put you on synthroid, it will be several weeks before you get the correct dose, so don't count on weight loss until you get the dose right.  My RAI was in July of 09, it took me a full year to lose the 20 pounds that I gained after the second surgery to remove my thyroid.  If they were really worried about metastatic cancer, they would have you on the table in a few days, not months.  It doesn't hurt to ask the doctor questions, but due to medical liability laws, doctors do not want to say something will or will not happen for sure, they could be sued...good luck, you should be fine, at least that is the hope.

[ShinyJabberwocky]

Well I was counting on some nausea from the radioactive iodine for the weight loss. Plus the doctor said that when I'm placed on synthroid, they're going to try and keep me borderline hyper, which might help me lose some weight there too. Who knows...I'll be happy being just as heavy with the cancer gone.

I don't have any thyroid lab results to share. Essentially my ENT, who removed a neck mass, sent on the mass and realized there was carcinogenic tissue within the mass, and stain tests confirmed it to be thyroid cancer. After an ultrasound, the doctors that I had seen all agreed that the thyroid would have to be removed.

I did, in 2009, go to an Endocronologist but he tested for a very narrow set of markers, which my current ENT thought was a bit strange. Plus I just didn't trust the guy, but since then, I haven't had any lab work done on my thyroid. All I know is that both my ENT and this professor and chair of otolaryngology surgeon at Georgetown said its cancerous and the whole thing needs to go. That's where I'm at currently.

[katbid]

Don't bank on weight loss after the TT.  I was diagnosed with Graves disease June 2010 and had my TT on New Years Eve.  I actually gained a few pounds with Graves (rare) and then another 10 after the TT.  I have finally stopped gaining, but the issue now is loosing the weight.  It is tough.

What do your thyroid lab results look like?