Its been a few years since I've been on this message board. I found it to be a great outlet for information, support, and feedback while I struggled with a neverending battle with Graves Disease in the late 90s.
In short (or long), I was diagnosed with Graves in late 1996 at the age of 23. I spent 7 years on medication - going through a short period of remission, but ultimately being faced with a more permanent means to ending the disease after meds started affecting my organs. I resisted having RAI done despite all this information that its safe. For myself, ingesting radioactive material was not an answer. And I'm glad I decided not to.
Over the course of the 7 years I saw 3 different doctors for treatment. Not getting better and wanting to resolve my condition, I decided to go to a teaching hospital (UCSF) for their opinion. Upon my first consultation, an intern palpated my throat and discovered I had a nodule. It turned out to be a "cold" one and I was told I'd need surgery.
After developing a stomach condition (and going through multitudes of tests for that which they never found a cause), I had the surgery a year later in 2003. My stomach condition got better post-surgery. I'm almost positive it was all related.
Unfortunately in the pathology exam of my thyroid tissue they found 3 spots of cancer. Whats even more unfortunate is that only about 90% of my thyroid was removed. So I have this potentially ticking thyroid cancer time bomb left in me.
At first my endo was not too concerned. For the first two years post-surgery I underwent regular bloodwork and ultrasounds to check to make sure no cancer was developing from the remaining tissue.
Then late last year she called me, with some urgency, that the amount of tissue I have left in me is statistically the amount they see in patients who later develop full cancer.
I was told I need to do either RAI or surgery asap.
I underwent an ultrasound and another 3 biopsies (ughh!!) last September. Results were inconclusive.
I moved to Seattle 5 months ago and am finally able to get in to see an Endo here at UW Medical Center. My consult is for this coming Monday. Though more invasive and expensive, I'm leaning towards surgery vs. RAI to eliminate my remaining tissue. I just want it out and to be done with. Plus, I dont want to be put on Prednisone which theyd haveto do with the RAI.
The last 10 years of dealing with this have been long and I'm ready to be done with all these tests. I'm still battling a bit with getting my Synthroid dosage regulated, and constantly battling my weight.
I'm hoping maybe someone who has been through a similar situation can share their story and how they dealt with pre or post thyroid cancer. Also, any tricks to managing weight gain? Its my understanding that now that my thyroid is gone, I can only boost my metabolism by changing dosage of my meds. Not really through excessive exercise. Any truth to this?
Thanks for reading and letting me share my story. And thanks in advance to those with advice. Also, if anyone needs support, I'm here.