Sunday, April 7, 2013

"...whether you're a brother, or whether you're a mother, you're stayin' alive, stayin' alive, feel the city breaking and everybody shaking, and we're stayin' alive, stayin' alive. the wings of heaven on my shoes, i'm a dancing man and i just can't lose. going nowhere, somebody help me, ...yeah, i'm stayin' alive, stayin' alive. " stayin' alive by the bee gees

it seems that i have a wee bit of a problem. i still  have thyroglobulin antibodies. i would not have known this, but i requested a copy of my last blood work for my records- remember that i am always telling people to do this? get copies of your tests and labs and put them in a folder so that you will know what your "numbers" are and can make intelligent, knowledgeable decisions. my doctor did not go over this with me when i was in her office last time. she went over my other  test results- no thyroblobulin, and nothing showing on the ultrasound..... now, here is the tricky part of the report- the one i just happened to see when i looked over the results.

some people( i just have to be different, i guess) have thyroglobulin antibodies. these attack, or work against, the thyroglobulin in our bodies. sounds good? no, not really- if you are a thyroid cancer patient and your doctor is measuring the thyroglobulin in your blood stream to determine if you have recurrent disease. if you have thyroglobulin antibodies like i do, and they have not gone away( some people have them at first, then they go away, to wherever, after the surgery/ I-131. ) then you could get a FALSE NEGATIVE report. in other words, you could be celebrating good news a little too early.

according to new research reported by thyca, " an ultrasound should be one of the first tests in monitoring a patient for recurrence, especially in patients where thyroglobulin antibodies are an issue". of course you probably remember that i said that my doctor always does an ultrasound at my "testing time" along with the blood work. thyca recommends that the device needs to be a POWER DOPPLER AND COLOR DOPPLER in order for the entire spectrum to be seen properly. doppler ultrasound detects the movement of blood around tumors. increased blood flow can be a strong marker for a tumor. not only that, but the scanning procedure should " take at least 45 minutes in order to be thorough". and it gets even better: " the average ultasonography technician may be very good on other ultrasounds, but requires special training for thyroid examination."

jeez. my ultrasound took no more than five minutes. and i am pretty sure that it was not a power/color doppler. i am not sure how much training the technician has, but i am fairly certain  that the ultrasounds i have been having over the past two years have been, basically, worthless. now what? i know that papillary thyroid cancer, even" stage three, and intermediate risk"- which was what mine is/was has a pretty good survival rate. unfortunately, it also has a rather high recurrence rate- which is about 30%. i also found out from thyca that there should be " lifelong surveillance". EXCUSE ME, but with all the stress that comes along with testing, i need to know that at least the tests are accurate. i have no problems with the blood work part, but i am now going to try to locate a facility that uses the power/color doppler. i am not sure how i will do this, but i am going to start looking now. my next test is not until september, but honestly, i need to have this done pretty soon- and with the correct equipment.

i would like to have this test done in the winston-salem, charlotte, raleigh-durham-chapel hill area, but if need be, i could go outside of north carolina. if anyone out there knows of a place where i might get the power/color doppler done, please shoot me an email. i would really appreciate it. i probably do not need to say this at this point, but everyone out there, please keep copies of your tests and blood work. be your own patient advocate, and best health and best wishes to everyone.


  1. Hi Bea,

    Have you discussed your concerns with your physician? She may be open to delving deeper and doing some out of the box solutions.

    Good luck.

    1. Actually yes. I have found a place that has the color/power doppler ultrasound. I have a call in to my endos office and they are to call me back
      Hopefully to set up an appointment
      either way i will not give up!

    2. Glad to hear you have found the resources you need. I will be thinking of you and wishing the best.