RAI scheduled for Weds., March 10th and I have a few questions...please help

CJMom
CJMom Member Posts: 9
edited March 2014 in Thyroid Cancer #1
My oncologist at my local hospital told me I was in the gray area for RAI since my papillary carcinoma tumor was 1.2 cm. It was found in my total thyroidectomy on Feb. 3rd. I've been off my levothyroxine since Feb. 2nd. I had my thyroglobulin checked on Feb. 26th and it was .1 and my TSH was 15 at that point. He told me my TSH should be between 80-100 if/when I do the RAI. I was leaning toward having RAI and he suggested that I talk to a radiation oncologist at another facility since he would be the one to administer the RAI.

I had that 2nd opinion appt. on March 4th with the radiation oncologist. He also said I was in the gray area for receiving RAI and he could understand my decision either way. He couldn't tell me it will reduce the chance of a recurrance but it will make tracking thyroglobulin much easier in the future. He told me he could do the treatment as soon as next Weds. the 10th, which surprised me. He did not sound concerned that I hadn't been on the LID and that I wouldn't be on it for even one entire week if we go forward with next Weds. He gave me the info in my appt. and told me to try to start following it starting then (on the 4th). I'm supposed to go get my TSH and thyroglobulin checked again on Monday the 8th but he felt my TSH should be high enough. He said it needed to be 25-50, which is much lower than I had been previously told.

My question is, does this sound right about the LID and TSH? What has everyone else's experience been?

Comments

  • butterfly123
    butterfly123 Member Posts: 52
    #2
    decision on RAI...?
    Hi CJMom-
    Good luck on which ever way you decide to go.

    From my experience and I have had RAI twice. First time after TT then another time after reoccurance. Endos/radiologist oncologists seem to vary in their opinons where the TSH should be. I think typically they want it above at least above thirty although above 60 for optimal results. I was always under the impression that the higher the TSH then the RAI dosage is more affective. You want any remaining thyroid cells in your body to be "active" so they are aborbed and treated by the RAI.

    As far as the LID, personally I would only take the RAI if I have been on a low iodine diet. If you are concerned about your iodine level, have your iodine tested before hand (I think it is a urine test). I would want the RAI to grab hold to as many thyroid cells left in the body and if there are other iodine sources in your body then the treatment is not as affective.

    Your doctor is correct about not being able to detect thyroid cancer in the future. Thyroglobulin (tg) and ultrasounds are the typical follow up tests after TC. But you are fortunate that your tg is almost undetectable already (you may want to make sure you do not have or develop thyroid antibodies...this can make alter the Tg blood result). When are you having your next Tg test....it is probably going to be higher then your TSH rises.

    Good luck with your decision and wishing you the best. Hope this helped.
  • CJMom
    CJMom Member Posts: 9
    #3
    butterfly123 said:

    decision on RAI...?
    Hi CJMom-
    Good luck on which ever way you decide to go.

    From my experience and I have had RAI twice. First time after TT then another time after reoccurance. Endos/radiologist oncologists seem to vary in their opinons where the TSH should be. I think typically they want it above at least above thirty although above 60 for optimal results. I was always under the impression that the higher the TSH then the RAI dosage is more affective. You want any remaining thyroid cells in your body to be "active" so they are aborbed and treated by the RAI.

    As far as the LID, personally I would only take the RAI if I have been on a low iodine diet. If you are concerned about your iodine level, have your iodine tested before hand (I think it is a urine test). I would want the RAI to grab hold to as many thyroid cells left in the body and if there are other iodine sources in your body then the treatment is not as affective.

    Your doctor is correct about not being able to detect thyroid cancer in the future. Thyroglobulin (tg) and ultrasounds are the typical follow up tests after TC. But you are fortunate that your tg is almost undetectable already (you may want to make sure you do not have or develop thyroid antibodies...this can make alter the Tg blood result). When are you having your next Tg test....it is probably going to be higher then your TSH rises.

    Good luck with your decision and wishing you the best. Hope this helped.

    Decision on RAI
    Thanks butterfly for your response. I do know that I have antibodies but I'm not sure what level they are. The first oncologist I talked to tested them and said he was about 50/50 on me doing the RAI before, but based on the antibodies he would recommend it a little more now. However, I do not fully understand what this means and why the antibodies are so important. Interestingly, the thyroid antibodies are what started this entire process for me approx. one year ago.

    Re: the LID, I am following it perfectly right now and will keep it up until the RAI. You said you would only take it if you had been on the diet. Do you feel that 6 days is enough?

    Thank you again so much for responding. I really appreciate it!
  • ibeatcanser
    ibeatcanser Member Posts: 47
    #4
    CJMom said:

    Decision on RAI
    Thanks butterfly for your response. I do know that I have antibodies but I'm not sure what level they are. The first oncologist I talked to tested them and said he was about 50/50 on me doing the RAI before, but based on the antibodies he would recommend it a little more now. However, I do not fully understand what this means and why the antibodies are so important. Interestingly, the thyroid antibodies are what started this entire process for me approx. one year ago.

    Re: the LID, I am following it perfectly right now and will keep it up until the RAI. You said you would only take it if you had been on the diet. Do you feel that 6 days is enough?

    Thank you again so much for responding. I really appreciate it!

    Iodine Diet and RAI
    Hi,
    I was on the LID for almost 5 weeks (my RAI was rescheduled and prolonged the diet) and my TSH was over 100. My nodule was 1cm and was also on the borderline for the RAI. My endo and surgeon opted for the RAI (even though I didn't want to do it - but now I'm happy I did) so that they could monitor me from baseline zero. I would personally wait to get the TSH levels higher, the more absorption the better.

    Good luck with your decision!
  • butterfly123
    butterfly123 Member Posts: 52
    #5
    CJMom said:

    Decision on RAI
    Thanks butterfly for your response. I do know that I have antibodies but I'm not sure what level they are. The first oncologist I talked to tested them and said he was about 50/50 on me doing the RAI before, but based on the antibodies he would recommend it a little more now. However, I do not fully understand what this means and why the antibodies are so important. Interestingly, the thyroid antibodies are what started this entire process for me approx. one year ago.

    Re: the LID, I am following it perfectly right now and will keep it up until the RAI. You said you would only take it if you had been on the diet. Do you feel that 6 days is enough?

    Thank you again so much for responding. I really appreciate it!

    Tg antibodies
    Here is a link "www.thyca.org/thyroglobulin.htm" to the thyca org site that explains what all the blood measurements mean...it is much easier that my typing it all :) Basically antibodies give false Tg results. You probably want to discuss with your endo how he/she will test for reoccurance in the future. If you do not have RAI, then Tg will be made from both residual healthy thyroid calls and/or thyroid cancer.

    I thought that the LID had to be longer than 6 days, more like 2 weeks. But I have seen and read anywhere from 1 week to 2 weeks.
    Good luck with everything.
  • CJMom
    CJMom Member Posts: 9
    #6
    butterfly123 said:

    Tg antibodies
    Here is a link "www.thyca.org/thyroglobulin.htm" to the thyca org site that explains what all the blood measurements mean...it is much easier that my typing it all :) Basically antibodies give false Tg results. You probably want to discuss with your endo how he/she will test for reoccurance in the future. If you do not have RAI, then Tg will be made from both residual healthy thyroid calls and/or thyroid cancer.

    I thought that the LID had to be longer than 6 days, more like 2 weeks. But I have seen and read anywhere from 1 week to 2 weeks.
    Good luck with everything.

    RAI, LID, TSH, weird symptoms, etc.
    Thanks again and that link was helpful. I moved my RAI to next week so I could be on the LID diet longer. Is the purpose of the LID to raise TSH or just so the remaining thyroid tissue is even more starved for the RAI? I had my TSH checked today at it's at 50 so I should be good for next week. I've noticed my ears ringing, legs cramping and my vision is a little off. Do you think this is from being hypo or am I just going crazy?

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