Sunday, October 13, 2013

the results blog, or what i have found out since my last six months round of tests........

as previously mentioned in other blogs, i have had  thyroglobulin  antibodies. this made  my blood work pretty useless. why? to refresh, the antibodies can cause false NEGATIVE results. this means while you may want to party, your body is  saying, " hey, wait a minute!" my first blood work, right after my surgery, RAI, etc, showed that i had thyroglobulin ( not good- only thyroid cells make thyroglobulin, and if your whole thyroid is gone,technically the only cells that can make this now are thyroid cancer cells) AND  i had thyroglobulin antibodies.

my next six month blood work showed that the thyroglobulin had packed up and moved out of town, hopefully, but the antibodies were still hanging around. even though my ultrasounds- which i have every six months as well- showed no monsters  growing in my neck area, i was still concerned that there was thyroglobulin somewhere in my body, and the antibodies were covering for them. this pattern continued UNTIL this time! finally, after three years of worry, my antibodies are negative! oh happy day :0  . truly, i feel that for the first time since i have started my thyroid journey, i can put some of this behind me.

my endocrinologist's nurse gave me a copy of my labs from the previous week ( i always request a copy for my records) while i was waiting on my doctor to come into the exam room. the nurse had the biggest smile on her face when she handed them to me. she did not say anything, just turned and left. i thought this was odd. first, i am a pain in the butt patient- i ask a lot of questions,etc, so i do not think she likes me very much, boo hoo. secondly, well, this nurse does not smile very much. at any rate, i started going over the values- here is a recap for those who are interested:

TSH: 0.007 uIu/ml

T4 free (direct) : 2.04ng/dL

T3, free: 3.0pg/ml

Thyroglobulin ( ICMA) less than 0.1ng/ml

Anti-thyroglobulin antibodies: less than 1.0IU/ml ( negative)

i can not tell you how many times i read and re-read that last number! i was almost in shock. the anti-thyroglobulin antibodies are supposed to go away sometime after surgery. mine had stuck around for 3 years! when my doctor came in, she said, " well, did you see?!" i asked her if this happened a lot, never,etc. and she said that it happens sometimes. she said that she likes to wait a while before ordering a PET scan, or other tests to see if the anti-TGA go away on their own.

i think that there is a lot we do not understand  about thyroid cancer. did it take that long for the RAI to work? did my immune system, after the burden of fighting the thyroid cancer was gone, finally recover enough to fix this on its own? my doctor could not answer this, nor can i. hopefully we will understand more about this in the future...

just a few comments on my other lab values. my endocrinologist wants my TSH to be essentially zero for five years. this is a " just in case" measure( do not want to be stimulating any rogue thyroid cancer cells that  might be hanging out somewhere) . as long as i do not exhibit hyperthyroid symptoms this will mean taking  a larger dose of my thyroid hormone than i will get after the 5 year period.

my T3 is about in the middle( range for this lab is 2.0 to 4.4). this could be increased, or supplemented, by a drug called cytomel. it is pure T3. i have taken this in the past, but since i feel pretty good i have stopped the cytomel. it made me shaky and jittery, so i assumed that my T3 was too high when i was taking cytomel.

my T4 is too high.( range for this lab is 0.82-1.77). i have not been having any hyper symptoms, but i realize that heart palpitations could possibly occur with a high T4, so my doctor and i discussed it and  we agreed to lower my thyroid dose a little. it is tricky- i need for my TSH to be zero, but my T4 not to be quite as high. i am sure that EVERYONE plays the" wiggle your thyroid medication game". not fun .i was taking 137mcg synthroid 4 days per week, and the 150mcg synthroid 3 days per week. i am going to reduce the 150 to one or two days per week. at some point, i may just take the 137mcg every day. i am not sure what that will do to my TSH if i do that, though. also, i get really tired, especially when i work a  6 out of 7 days work week/weekend. i count on the 150mcg to get me through saturday- which is a 11 hour day. bless my endocrinologist- she is pretty willing to let me figure this out, unless of course i have some heart palpitations, difficulty sleeping, shakey hands, etc. i am fortunate to have found an endocrinologist who not only looks at the labs, but more than that, considers how i am feeling before she prescribes. it took me going to at least FOUR doctors before i found one that i really liked. do not be afraid to switch doctors or get a second opinion, by the way, if you do not feel like you are getting the care that you need.

so happy, happy news! my endocrinologist is still holding me to the every six months testing. i am hopeful that next time my labs will be as good as this time. i feel like a gigantic weight has been lifted. perhaps, i can feel more like a 3 year cancer survivor rather than a 3 year cancer patient if that makes any sense.

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