rise in my thyroglobulin has me worried I need advice

les2860
les2860 Member Posts: 5
edited March 2014 in Thyroid Cancer #1
I had my initial surgery in 1996 subtotal thyroidectomy for suspicious follicular ademoma, with no treatment or meds after.

in 2006 I found another lump, FNA discovered papillary carcinoma follicular variant.So off to surgery I went to remove the rest of my thyroid. the post op scan showed star pattern in the thyroid bed and ablation was decided upon.131 radiation.
Otherwise all had been well. I was on 162 (137+25) of levoxyl and for a year and felt fine, Thyrogen test at a year was good. Stayed on 162 for another6-8 months and they decided to start lowering it,. It was strange that over the nonths the TSH remained very low despite continually reducing the dose of meds. Finally they did a thyroblobulin and it is o.3 ,thyroglobulin antibody were <30. Which is a chang from the one done some time ago. (this is with out any supression just with the lowering of the levoxyl which is now at 112) and my TSH is .5. I have just not been feeling well and this elevation of the thyroglobulin has got me a little nervous. I am to repeat the test on Monday ( same lab as alwyas). Could this be a lab error ...or is somewthing going on??? I have never had a chset xray ,I have noted that in some protocols chest xrays are done periodically. Has any one else had the chest x-rays..I am loosing sleep over this. I send my results off to a Doctor at the University and it usually takes weeks to get a response..UGH!

Comments

  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #2
    I'm a little surprised you
    I'm a little surprised you didn't have a total thyroidectomy. I'm also surprised you would need 162mcg of thyroxine with a portion of a healthy thryoid still at work. That would be a typical dose for someone without a thyroid gland.

    Did they not give you RAI after surgery?
  • les2860
    les2860 Member Posts: 5
    #3
    I guess I could have been a
    I guess I could have been a little more clear. In 2006 I had the other half removed so in essence yes I have had a total thyroidectomy
  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #4
    les2860 said:

    I guess I could have been a
    I guess I could have been a little more clear. In 2006 I had the other half removed so in essence yes I have had a total thyroidectomy

    A Tg reading greater than
    A Tg reading greater than zero but less than one is not alarming but the fact your body's requirement for thyroxine has been in decline could be a sign that metastatic tissue is doing some of the work. I experienced the same thing during the past 18 months, going from 212mcg down to 200, then 175, and eventually down to 143. But during that same period my Tg readings were climbing from a low of 12 up to 1225.

    You are wise to be concerned but there's no need for alarm, IMO. Your Ca is indolent so there is plenty of time to explore solutions.
  • les2860
    les2860 Member Posts: 5
    #5
    JAWsSavannah said:

    A Tg reading greater than
    A Tg reading greater than zero but less than one is not alarming but the fact your body's requirement for thyroxine has been in decline could be a sign that metastatic tissue is doing some of the work. I experienced the same thing during the past 18 months, going from 212mcg down to 200, then 175, and eventually down to 143. But during that same period my Tg readings were climbing from a low of 12 up to 1225.

    You are wise to be concerned but there's no need for alarm, IMO. Your Ca is indolent so there is plenty of time to explore solutions.

    thank you
    Thank you for your comments. I was thinking that was what was going on when my TSH did not move much over the past several months. I am awaiting the next lab result. Should be in soon.
    I am hoping it was a lab error but ...i doubt it. Is the TG test accurate with the presence of TG antibodies???I wonder if I am going to have to do the thyrogen supression again. That gave me such a awful headache. I do not know what they will do next. Any thoughts
  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #6
    Re: thyroid antibodies affecting Tg--I am not up to speed on the antibodies test, sorry. It has never been a subject of discussion in my case. You might try posting the question in the Thyroid Disorder section of Healthboards. That board has a lot of traffic and several of the old timers seem to have a very good understanding about the intricasies of blood test results.

    As for the thyrogen suppression, I've had it twice but only as a prep for RAI ablation and scans. I had no side effects from it and have not heard about it causing headaches. Perhaps yours happened coincidentally, from another cause.
  • les2860
    les2860 Member Posts: 5
    #7
    JAWsSavannah said:

    Re: thyroid antibodies affecting Tg--I am not up to speed on the antibodies test, sorry. It has never been a subject of discussion in my case. You might try posting the question in the Thyroid Disorder section of Healthboards. That board has a lot of traffic and several of the old timers seem to have a very good understanding about the intricasies of blood test results.

    As for the thyrogen suppression, I've had it twice but only as a prep for RAI ablation and scans. I had no side effects from it and have not heard about it causing headaches. Perhaps yours happened coincidentally, from another cause.

    Not a lab error
    Well the lab came back and the Tg is 0.4 for Tg. Tg antibodies <20. Now I wait for the response from the Doctors. It usaully takes a week or two. I think I will just put it out of my mind until then. Stinks to think it is back but ...it is what it is. Thanks for your support! I hope you are doing well.
  • miladyx
    miladyx Member Posts: 85
    #8
    JAWsSavannah said:

    A Tg reading greater than
    A Tg reading greater than zero but less than one is not alarming but the fact your body's requirement for thyroxine has been in decline could be a sign that metastatic tissue is doing some of the work. I experienced the same thing during the past 18 months, going from 212mcg down to 200, then 175, and eventually down to 143. But during that same period my Tg readings were climbing from a low of 12 up to 1225.

    You are wise to be concerned but there's no need for alarm, IMO. Your Ca is indolent so there is plenty of time to explore solutions.

    hey i have a question for you if you dont mind...
    Hi JawsSavannah-

    You mentioned that that your need for thyroxine declined as less and less medication was required to keep your TSH supressed. This might be a pretty detailed question but i was wondering when you were on the 200+ thyroxine dose, what was your TSH initially and how low did it go that your doctors had to lower your thyroxine dosage??

    Thanks.
  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #9
    miladyx said:

    hey i have a question for you if you dont mind...
    Hi JawsSavannah-

    You mentioned that that your need for thyroxine declined as less and less medication was required to keep your TSH supressed. This might be a pretty detailed question but i was wondering when you were on the 200+ thyroxine dose, what was your TSH initially and how low did it go that your doctors had to lower your thyroxine dosage??

    Thanks.

    Sorry I missed this
    I didn't realize this question was directed to me until today. Sorry for the slow response.

    I don't know how low my TSH went when my Synthroid dose was being adjusted downward. I had fired my endo and self-adjusted based on symptoms. I was seeing my GP every 4-6 months and he was doing the labs. Whenever I went in to see him I told him about my hyper symptoms and that I had been making small incremental adjustments based on those symptoms. He didn't tell me I was a bad boy the first time and when the TSH level from his tests came back in the appropriate range he said to maintain the dose. The second time I saw him and reported further decreases he acted a little perturbed but, again, the blood test confirmed the dose I was taking was appropriate. I feel best when suppressed to levels around 0.5 to 0.7.

    I'm guessing here but from my experience I start getting hyper when TSH gets down below 0.40. I will have hypo symptoms when TSH gets up around .85 to 1.
  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #10
    les2860 said:

    Not a lab error
    Well the lab came back and the Tg is 0.4 for Tg. Tg antibodies <20. Now I wait for the response from the Doctors. It usaully takes a week or two. I think I will just put it out of my mind until then. Stinks to think it is back but ...it is what it is. Thanks for your support! I hope you are doing well.</p>

    I would love to have a Tg
    I would love to have a Tg less than 1. Yours, at 0.4, sounds really good to me.

    But as I said earlier I don't have a good understanding about the antibodies thing. If I were you I would try to get my doctor to explain what the test reveals or suggests. If he can't help you understand try the Healthboards thyroid forum I mentioned. There is a lot of traffic on there and several old-timers who know what those tests mean are on there every day.

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