thyroglobulin antibodies high

steph2009
steph2009 Member Posts: 2
in Thyroid Cancer #1
Hi! I am new here. I had a TT on April 15,2009 due to papillary ca. They also removed 11 lyph nodes, where 9 were positive. I had the RAI in June followed by a WBS which was negative. I had a follow up scan in December the same year and everything was still negative. I never got copies of my bloodwork but doctor said everything looked good. Well, that doctor moved out of state so I am now seeing someone new. I just had a WBS 2 weeks ago, which was again negative. They called 2 days later and said my thyroglobulin level was undetectable but my antibodies are elevated and have been since my surgery (which the other doctor never told me). I went for an ultrasound of my neck this past Thursday and there is several suspicious lymph nodes in my neck. I am waiting to hear from my doctor to see what all this means and what we are going to do. In the mean time I am worried to death! I haven't slept since Thursday and just want to scream!! Does anyone know what it means to have your antibodies high but everything else look normal? Why wouldn't these lymph nodes have shown up on the WBS?

Stressed in Louisiana!!
Stephanie

Comments

  • alapah
    alapah Member Posts: 287
    #2
    TgAB - antibodies
    Hi Stephanie. Sorry you're on this roller coaster. I too have TgAB which my doc knew from the blood work done two days prior to my surgery in June 2009. Just as with Tg (thyroglobulin), docs look to see that TgAB number decrease over time because the problem with TgAB is that it makes labs for the Tg level suspect as the antibodies skew the true Tg reading. If you trend down in both numbers, it's possible to eventually be free of TgAB. Unfortunately for me, this has not been the case. With Tg and TgAB you should have your labs always done in the same place, using the same assay. My doctor sends all of my blood draws to USC's lab where they apparently have a cutting edge program. They bank the blood and rerun your last sample with each new sample for comparative purposes - same assay, same day, same techs, etc. We had hoped my TgAB would decrease over time, and it did for a while, but it's back up. I know I have more cancer but I have an unusual case and am, apparently, no longer iodine avid so no more RAI for me. Every case is unique so don't compare yourself to me or others. Key is to know what all of the labs are about and how the disease behaves overall so you can be an advocate for yourself.

    Please make sure you are working with an endocrinologist who specializes in thyroid cancer. It is so important that they be familiar with the nuances, especially if you have antibodies. It is possible that your Tg is actually not zero but is being masked by the antibodies. Don't panic though. If you have anything remaining in lymph nodes they can be surgically removed or, in some cases, patients are able to go through alcohol ablation treatment instead of surgery. One of the places that does this is the Mayo Clinic.

    Lots of others here to help you. If you don't know about it already, there is a great site called thyca.org which has many very informative pages, including one on how to understand your labs.
    Very best to you. Stay strong and try to deal a day at a time. I truly know how stressful this can be - is!
    eileen
  • lucy07
    lucy07 Member Posts: 51
    #3
    alapah said:

    TgAB - antibodies
    Hi Stephanie. Sorry you're on this roller coaster. I too have TgAB which my doc knew from the blood work done two days prior to my surgery in June 2009. Just as with Tg (thyroglobulin), docs look to see that TgAB number decrease over time because the problem with TgAB is that it makes labs for the Tg level suspect as the antibodies skew the true Tg reading. If you trend down in both numbers, it's possible to eventually be free of TgAB. Unfortunately for me, this has not been the case. With Tg and TgAB you should have your labs always done in the same place, using the same assay. My doctor sends all of my blood draws to USC's lab where they apparently have a cutting edge program. They bank the blood and rerun your last sample with each new sample for comparative purposes - same assay, same day, same techs, etc. We had hoped my TgAB would decrease over time, and it did for a while, but it's back up. I know I have more cancer but I have an unusual case and am, apparently, no longer iodine avid so no more RAI for me. Every case is unique so don't compare yourself to me or others. Key is to know what all of the labs are about and how the disease behaves overall so you can be an advocate for yourself.

    Please make sure you are working with an endocrinologist who specializes in thyroid cancer. It is so important that they be familiar with the nuances, especially if you have antibodies. It is possible that your Tg is actually not zero but is being masked by the antibodies. Don't panic though. If you have anything remaining in lymph nodes they can be surgically removed or, in some cases, patients are able to go through alcohol ablation treatment instead of surgery. One of the places that does this is the Mayo Clinic.

    Lots of others here to help you. If you don't know about it already, there is a great site called thyca.org which has many very informative pages, including one on how to understand your labs.
    Very best to you. Stay strong and try to deal a day at a time. I truly know how stressful this can be - is!
    eileen

    confused and scared
    Hi I had my blood work done two weeks ago and my Thyroglobulin AB is 554. My doctor did not call me to explain. A year ago I went through uterine cancer. Do I now have Thyroid Cancer. Confused scared and alone. Help
  • sunnyaz
    sunnyaz Member Posts: 582
    #4
    Lymph Involvment
    Hi Stephanie,

    Don't stress. I am a Papillary Cancer survivor. Had TT in November 2009. Metastasis in June 2010 and again in December 2010. Two RAI treatments. Recently I had some swollen nodes and I was sure the cancer had returned. All three came back negative much to my surprise. Tg and Tg Antibodies can be inconclusive so again, don't stress yourself out. The WBS doesn't usually show metastasis especially to the Lymph nodes. My Oncologist told me that nodes are less likely to uptake the iodine, which is probably why yours didn't show up, but if there were any cells that had taken up residency in the lungs, they were likely killed by the RAI and would show up on a scan. I hope this helps. Maybe your old doctor moving was a good thing. Your new doctor seems on top of it. Probably just a fine needle aspiration will be done to see if the nodes are positive. Remember that Papillary cancer is slow growing for the most part. I was tested for the B-RAF mutation gene after my first metastasis and was positive. B-RAF will make the cancer more aggressive, faster growing and more difficult to treat. IF this is a metastasis and they haven't already tested for the B-RAF, I would ask them to do so.

    Keep your chin up. Ask your doctor for some help with sleep, such as Diazepam or Xanax. I am praying for the best for you.

    Blessings,
    Julie-SunnyAZ
  • sunnyaz
    sunnyaz Member Posts: 582
    #5
    lucy07 said:

    confused and scared
    Hi I had my blood work done two weeks ago and my Thyroglobulin AB is 554. My doctor did not call me to explain. A year ago I went through uterine cancer. Do I now have Thyroid Cancer. Confused scared and alone. Help

    Confused and Scared
    Hi Lucy,

    Call your doctor and insist on an explanation. Ask what your Tg (thyroglubulin) level is as well and make him/her explain what they mean in terms you will understand. Did she test your TSH, Free T3 and Free T4 levels and what were those numbers? If you have no lumps on your Thyroid and you are not having symptoms you probably don't have Thyroid cancer. Some of the symptoms are: sudden and unexplained weight gain or loss. Fatigue, heart palpitations, gas or indigestion with or without acid reflux. Difficulty controlling your body temperature. A change in vision. Dry, flaky skin and itching. Sudden feelings of being tired and nauseated.

    In the interim try not to stress out. I know the fear of the unknown is difficult but you will get through this. Everyone on this site is here to help and some of us have been through a great deal and can help support and educate you on how to help yourself. We have learned and are here to share with you. You are not alone, it just feels like it.

    Prayers and Blessings,
    Julie-SunnyAZ
  • lucy07
    lucy07 Member Posts: 51
    #6
    sunnyaz said:

    Confused and Scared
    Hi Lucy,

    Call your doctor and insist on an explanation. Ask what your Tg (thyroglubulin) level is as well and make him/her explain what they mean in terms you will understand. Did she test your TSH, Free T3 and Free T4 levels and what were those numbers? If you have no lumps on your Thyroid and you are not having symptoms you probably don't have Thyroid cancer. Some of the symptoms are: sudden and unexplained weight gain or loss. Fatigue, heart palpitations, gas or indigestion with or without acid reflux. Difficulty controlling your body temperature. A change in vision. Dry, flaky skin and itching. Sudden feelings of being tired and nauseated.

    In the interim try not to stress out. I know the fear of the unknown is difficult but you will get through this. Everyone on this site is here to help and some of us have been through a great deal and can help support and educate you on how to help yourself. We have learned and are here to share with you. You are not alone, it just feels like it.

    Prayers and Blessings,
    Julie-SunnyAZ

    confused and scared
    Thanks Sunny
    All my other tests are OK. I gained weight, and I can not lose it I try carb. control and weight watches. I do not cheat but nothing is coming off. I'm always tired and I have low grade fevers every day. I'm losing hair and my skin is all dry and flaky no matter how much lotion I put on it. My doctor who ordered the test did not tell me in advance/or after what the test was for or any of her suspicions.And on top of it she canceled my next week's appt. I can't say anything about my vision because I have diabetes and I thought it's just blood sugar. I e-mailed the doctor requesting an explanation, but so far I got nowhere.
  • alapah
    alapah Member Posts: 287
    #7
    lucy07 said:

    confused and scared
    Thanks Sunny
    All my other tests are OK. I gained weight, and I can not lose it I try carb. control and weight watches. I do not cheat but nothing is coming off. I'm always tired and I have low grade fevers every day. I'm losing hair and my skin is all dry and flaky no matter how much lotion I put on it. My doctor who ordered the test did not tell me in advance/or after what the test was for or any of her suspicions.And on top of it she canceled my next week's appt. I can't say anything about my vision because I have diabetes and I thought it's just blood sugar. I e-mailed the doctor requesting an explanation, but so far I got nowhere.

    Antibodies don't mean you have cancer!
    Thyroglobulin antibodies (TgAB) are not an indicator of cancer. Really sorry to have stressed you lucy07. The presence of TgAB could suggest that you have an autoimmune disease, such as Hashimoto's Thyroidosis. I am no expert however. I just know that in my case I had Hashimotos but did not know it until I had pathology reports and labs done for my thyroid cancer. Having positive TgAB levels does not equate with cancer though. In my case, my understanding is that patients with Hashimotos tend to develop nodules more than the average person, though these nodules are not always cancerous.
    Hope that helps.
    eileen
  • alapah
    alapah Member Posts: 287
    #8
    lucy07 said:

    confused and scared
    Thanks Sunny
    All my other tests are OK. I gained weight, and I can not lose it I try carb. control and weight watches. I do not cheat but nothing is coming off. I'm always tired and I have low grade fevers every day. I'm losing hair and my skin is all dry and flaky no matter how much lotion I put on it. My doctor who ordered the test did not tell me in advance/or after what the test was for or any of her suspicions.And on top of it she canceled my next week's appt. I can't say anything about my vision because I have diabetes and I thought it's just blood sugar. I e-mailed the doctor requesting an explanation, but so far I got nowhere.

    sorry - double posted
    rut-roh
  • Linda Jo
    Linda Jo Member Posts: 14
    #9
    Antibodies and thryoglobulin levels
    Hi Stephanie,

    I, too, had papillary cancer and my thyroid was removed in Feb. 2010. My antibodies have continued to drop over the last 14 months. That's a good thing. Maybe they'll be totally gone by the end of the year. It's my thyroglobulin that won't come down. It leveled out and has been virtually the same for the last five months. My bloodwork is done at USC as someone else here mentioned. I saw my oncologist today for results on the body scan. There was a small uptake in leftover thyroid tissue which may be the cause for the leveled out thyroglobulin. The Dr. couldn't tell me if this tissue is cancerous or not. I thought the scan was to check for cancer. I don't get it! Anyway, I need a biopsy on a possible calcified lymph node before I take the I131 again. I hope the radioactivity will get rid of the remaining tissue and, maybe, then the antibodies will stop fighting against my body. Get a copy of all your bloodwork since this began and have your doctor explain the numbers to you. My oncologist takes the time to explain more of this to me than my endo. Maybe your doctor could send your blood to a lab that is more familiar with these type of results.

    This can all be frustrating, I know. But this website has been a great help to me. I hope it will be to you. Keep us posted. God bless you!

    Linda
  • alapah
    alapah Member Posts: 287
    #10
    Linda Jo said:

    Antibodies and thryoglobulin levels
    Hi Stephanie,

    I, too, had papillary cancer and my thyroid was removed in Feb. 2010. My antibodies have continued to drop over the last 14 months. That's a good thing. Maybe they'll be totally gone by the end of the year. It's my thyroglobulin that won't come down. It leveled out and has been virtually the same for the last five months. My bloodwork is done at USC as someone else here mentioned. I saw my oncologist today for results on the body scan. There was a small uptake in leftover thyroid tissue which may be the cause for the leveled out thyroglobulin. The Dr. couldn't tell me if this tissue is cancerous or not. I thought the scan was to check for cancer. I don't get it! Anyway, I need a biopsy on a possible calcified lymph node before I take the I131 again. I hope the radioactivity will get rid of the remaining tissue and, maybe, then the antibodies will stop fighting against my body. Get a copy of all your bloodwork since this began and have your doctor explain the numbers to you. My oncologist takes the time to explain more of this to me than my endo. Maybe your doctor could send your blood to a lab that is more familiar with these type of results.

    This can all be frustrating, I know. But this website has been a great help to me. I hope it will be to you. Keep us posted. God bless you!

    Linda

    thyroglobulin (Tg)
    Tg is a product of thyroid tissue so basically the Tg reading and the scans help to identify if you have thyroid cells/tissue present, but they can't tell if the cells are cancerous or not. When you go through a round of RAI and body scan, the scan is picking up cells that had uptake of the dosage of radioactive iodine you ingested. Thyroid cells usually take up iodine. Some other cells in the body do too as I understand but it is largely thyroid cells that do. So, when you are given RAI, the radioactive iodine is, hopefully, taken up by any residual thyroid cells. In an ablation dose of RAI, the aim is to have enough uptake to actually kill the cells.

    Only pathology can confirm cancer - well, I suppose a PET scan can as well. A PET scan is a totally different kind of scan than the WBS you get with the RAI.

    The idea behind total thyroidectomy and RAI is to get rid of and kill off all remaining thyroid cells in your body. When that happens, the Tg reading would be zero. That is why they look at Tg as a sort of marker. However, when you have Tg antibodies, it messes with the validity of the Tg reading. Trends downward are good though, as you noted.

    I agree wholeheartedly with your recommendation Linda Jo - get copies of all of your labs (and films and other records). It's been a great help to me.
    e
  • Linda Jo
    Linda Jo Member Posts: 14
    #11
    alapah said:

    thyroglobulin (Tg)
    Tg is a product of thyroid tissue so basically the Tg reading and the scans help to identify if you have thyroid cells/tissue present, but they can't tell if the cells are cancerous or not. When you go through a round of RAI and body scan, the scan is picking up cells that had uptake of the dosage of radioactive iodine you ingested. Thyroid cells usually take up iodine. Some other cells in the body do too as I understand but it is largely thyroid cells that do. So, when you are given RAI, the radioactive iodine is, hopefully, taken up by any residual thyroid cells. In an ablation dose of RAI, the aim is to have enough uptake to actually kill the cells.

    Only pathology can confirm cancer - well, I suppose a PET scan can as well. A PET scan is a totally different kind of scan than the WBS you get with the RAI.

    The idea behind total thyroidectomy and RAI is to get rid of and kill off all remaining thyroid cells in your body. When that happens, the Tg reading would be zero. That is why they look at Tg as a sort of marker. However, when you have Tg antibodies, it messes with the validity of the Tg reading. Trends downward are good though, as you noted.

    I agree wholeheartedly with your recommendation Linda Jo - get copies of all of your labs (and films and other records). It's been a great help to me.
    e

    clarification
    Thank you, alapah, for the clarification. I understand it better now. As for the labs, I have a copy of all my numbers since this began. Other than following my progress and learning to understand the numbers, I went to the thyca website to see if I could make more sense out of it. Do you know if I could run my numbers and get more answers from that site?

    Thanks for your insight!
  • alapah
    alapah Member Posts: 287
    #12
    Linda Jo said:

    clarification
    Thank you, alapah, for the clarification. I understand it better now. As for the labs, I have a copy of all my numbers since this began. Other than following my progress and learning to understand the numbers, I went to the thyca website to see if I could make more sense out of it. Do you know if I could run my numbers and get more answers from that site?

    Thanks for your insight!

    i don't know
    if the thyca site can be of help in that way. talking over your labs with your doctor is probably the best situation because he or she also knows the other factors in your particular case - and every case is different.

    there are two yahoo groups for thyroid cancer patients (one for more advanced cases and one for most folks - they are Adv-Thyca and Thyca, respecitvely. there are some folks on those boards who are pretty savvy - you may get some useful feedback from them. other than that, it's your medical team i suppose. i hope that helps. it can be a very daunting trying to make sense of all of this medical information.
    eileen

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