thyroglobulin

glowingkaren
glowingkaren Member Posts: 19
edited March 2014 in Thyroid Cancer #1
had a thyrogen thyroglobulin in sept 07 was 5.1 previous tg was 0.6 without thyrogen , had repeat tg. 2 months later without thyrogen was 1.1 . Doc is lowering my synthroid to 1.12 from 1.25, because TSH too low. (I forgot #) I dont have an appointment til Feb, guess they are happy with those #'s, but I am still kinda worried. (12 yrs post papillary /differentiary(sp). Why would I be lowered even though thyroglogulin still up slightly? Thanks . Karen

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  • Rustifox
    Rustifox Member Posts: 110
    #2
    Hi, Karen. Are you seeing a thyroid cancer specialist, i.e. an endocrinologist who specializes in thyroid cancer?

    It is not a good idea to lower your dose of synthroid when you have an increased level of thyroglobulin. In those of us who have been treated for thyroid cancer, some doctors would be doing scans and/or even PET scans, to determine the source of a 5.1 thyrogen enhanced thyroglobulin.

    If you are having obvious symptoms of over suppression (ie palpitation, etc), then many doctors would just suggest adding a mild beta blocker, to counter those symptoms, while still keeping your TSH low.

    At 12 years post diagnosis, this is not a time to relax your suppression. We know that thyroid cancer can reoccur 5-10-or even 20 years later, and recurrences are almost always more difficult to treat, and potentially more serious than our original disease.

    I would want to find out why the thyroglobulin has risen (ie - was it was done by the same lab each time? some labs measure slightly differently than others, etc). If it was all done by the same 'routine' lab, then I would want the source to be investigated, or would seek a second opinion - promptly.

    You may find information in these 2007 guidelines that will help you make a decision on what to do next - the flow charts in this one are particularly helpful:
    http://www.nccn.org/professionals/physician_gls/PDF/thyroid.pdf

    These guidelines were determined by levels of consensus among thyroid cancer treating endocrinologists, etc - another good place to look for what most doctors think of any detectable (while suppressed) and rising thyroglobulin levels:
    http://www.liebertonline.com/doi/pdf/10.1089/thy.2006.16.ft-1

    Hope these help. All the best to you.
  • denyse
    denyse Member Posts: 17 Member
    #3
    Karen, just wondering how things turned out for you. I saw rustifox email and it was a great source of information. I am under the same understanding the goal is to keep that number under 2 forever after going through thyca. My daughter is post surgery and ra131 and her doc said intially (8wks post ra131) the thyroglobolin might be over 2 but since it was about 26 hypo pre RA131, an improvement shows the RA131 is working. It needs to continue to go down though and NOT rise. If yours was down and then rose, that's an issue that needs to be addressed. My understanding it a scan may be in order. I've heard recurrances do happen and are very treatable. Good luck.
  • glowingkaren
    glowingkaren Member Posts: 19
    #4
    Hi denyse! Well, I don't go back to see Dr until Feb 12th. My last test was in Dec as stated in last thread. I have gained weight though since my thyrogen injections, & my synthroid being lowered & having hard time getting it off. UGH! I DID have a body scan in Sept. I had too much radiation left in my bowels & had to go back, but they said it is ok.My Doc says TG test is more reliable though, so we will keep a watch for now. I know it will be treatable if it comes back, but I was REALLY DEPRESSED going HYPO & really hope to not do it again. TY for your concern, I hope your Daughter is doing well. Karen
  • denyse
    denyse Member Posts: 17 Member
    #5
    glowingkaren said:

    Hi denyse! Well, I don't go back to see Dr until Feb 12th. My last test was in Dec as stated in last thread. I have gained weight though since my thyrogen injections, & my synthroid being lowered & having hard time getting it off. UGH! I DID have a body scan in Sept. I had too much radiation left in my bowels & had to go back, but they said it is ok.My Doc says TG test is more reliable though, so we will keep a watch for now. I know it will be treatable if it comes back, but I was REALLY DEPRESSED going HYPO & really hope to not do it again. TY for your concern, I hope your Daughter is doing well. Karen

    Thanks Karen. All my best to you. Keep me posted on your progress. Blessings, denyse
  • denyse
    denyse Member Posts: 17 Member
    #6
    glowingkaren said:

    Hi denyse! Well, I don't go back to see Dr until Feb 12th. My last test was in Dec as stated in last thread. I have gained weight though since my thyrogen injections, & my synthroid being lowered & having hard time getting it off. UGH! I DID have a body scan in Sept. I had too much radiation left in my bowels & had to go back, but they said it is ok.My Doc says TG test is more reliable though, so we will keep a watch for now. I know it will be treatable if it comes back, but I was REALLY DEPRESSED going HYPO & really hope to not do it again. TY for your concern, I hope your Daughter is doing well. Karen

    How did your appointment turn out on 2/12. I hope well. Denyse
  • glowingkaren
    glowingkaren Member Posts: 19
    #7
    denyse said:

    How did your appointment turn out on 2/12. I hope well. Denyse

    Denyse,
    My appt went TREMENDOUS! My Thyroglobulin went back down to 0.5! I don't have to go back for 6 months! How are things with your Daughter? Karen
  • denyse
    denyse Member Posts: 17 Member
    #8
    glowingkaren said:

    Denyse,
    My appt went TREMENDOUS! My Thyroglobulin went back down to 0.5! I don't have to go back for 6 months! How are things with your Daughter? Karen

    I'm so happy for your. Since your Tg was .5 was that hypo or on meds? I get confused on this. If it's under .5 when hypo, that's really good, right? Things are great with my daugther. Thanks for asking. She had her 6 wk post treatment blood work which registerd at .76 for tsh and .4 for her tg which is great on 112 levoxyl. her meds were increased from 112 to 125 and told she would do the hypo 6 wks off meds in may to see what tg is without levoxyl. If it's under .5 we are set! : ) We are praying for a .5 or less: ) She had an ultrasound this week and they said good and clear. we are happy and anxiously await putting this behind us. good luck and keep in touch.: )
  • glowingkaren
    glowingkaren Member Posts: 19
    #9
    Denyse,My TG .5 was on meds. My Tsh was .007 before they lowered me. I asked them to mail me results. I was so excited over TG that I didn't ask tsh. They said it is still suppressed though, but he does not want to lower me(thyroid meds) anymore. I don't go back to see him until August. :) Thank You for being so kind. Rustifox is also a very knowledgeable source on here! Thanks Rusti! Karen

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