i have thyroglobulin antibodies. that means that my blood work to test for thyroglobulin is pretty much worthless. to review, after thyroid cancer- surgery and possibly RA-131, your doctor will probably check your neck by ultrasound ( looking at lymph nodes,etc) to make sure that the thyroid cancer cells have not returned. also, they do a blood test to determine if you have thyroglobulin cells. now, if they have removed all your thyroid, and the RA-131 has gotten the bits of gland/tumors left behind, you should not have any thyroid cells left to make thyroglobulin. that is unless you have some rogue thyroid cells- and unfortunately, they would be thyroid CANCER cells- left behind. these thyroid cancer cells like to visit your bones and lungs first i have been told.
thyroglobulin antibodies produce false negative results in blood work. how mean of them ! i sometimes wonder why my endo even does the blood work test. i think that she, like me, is somehow hoping that my antibiodies will go away. sometimes they do- after surgery, but i think that since it has been three years for me, mine are probably sticking around. the first blood test that i had done after my surgery was positive for both thyroglobulin and thyroglobulin antibodies. that freaked me out. the second test i had done was only positive for the antibodies, but hey, that could be a false negative. what do do?
well, this year, if my doctor can get my insurance to pay for at least a little bit of it, i am having a PET scan. this is a scan that can detect small " tumors" or bits of thyroid cancer cells that are hanging out, say, in my bones, lungs, or other interesting places. the way the test goes, as i understand it, they inject a little radioactive substance ( if i had to guess it would be the all time favorite of thyroid cells, the I-131), wait a minute for the greedy little cells to gobble it up, then use a scanning machine( do not know the proper name, sorry) that looks like a donut. i had one of those machines to do my scan- not a PET scan, after my surgery. i remember the technician saying " wow, her neck lit up like a Christmas tree!". jeez. Christmas anything is a good thing, but not in this case. it meant that they were picking up a lot of thyroid cancer cells in my neck area. my tumors had burst open, and the cancer had spread to two of my parathyroids- which had to be removed along with my thyroid( for those of you who have not read my thyroid cancer story)
if things go as planned, i will have the scan next month, and can talk over the results with my endo at my appointment scheduled for the first week of october. she has suggested that i do this scan for a while, but i wanted to think about it. i am now ready to get one for my peace of mind, basically. i am one of those " need to know" people. i am not one who feels better not knowing- in fact i do not understand people who are like that. i want to know what is going on, and then i will deal with it and come up with a plan of action.
i am not going to ask for a PET scan every time; i am not sure how often you do one. every year? every two or three years? but i think, that for me, it is now time to get this done. if anyone out there has had one and would like to tell me ( well, us) about their experience, i would appreciate it. if not, i will certainly fill everyone in on mine next month.
