Anti-Thyroglobulin antibodies

How long does it take for your anti thyroglobulin antibodies to come back down to an undetectible level? I had my last surgery 3 years ago and it's stuck in the 900's, it raised by an insignificant number lol. My doctor kind of sounded surprised on the phone like it should have dropped in 6 months. Hmm

I'm so frustrated because I used to get this blood test invented at and only done by Cleve Clinic (TSHR mRNA) that would just indicate if cancer was present or not...and now the test is discontinued and they're not in any hurry to look into fixing it. Mind you, my lymph nodes didn't respond to RAI, so the scans failed to detect a bunch of abnormal lymph nodes--I only found out it came back by way of this test :(

hmmm.... I'm wondering....your last surgery was 3 years ago and there wasn't adequate response to rai??? is that correct?? are you seeing an endocrinologist VERY experienced in treating thyca???  what is his/her overall treatment plan for you??  are you still seeing someone from cleveland clinic?? how are you feeling?  are you comfortable with the treatment you are getting??

On Jun 05, 2012 8:13 PM shortstuff23 wrote:

How long does it take for your anti thyroglobulin antibodies to come back down to an undetectible level? I had my last surgery 3 years ago and it's stuck in the 900's, it raised by an insignificant number lol. My doctor kind of sounded surprised on the phone like it should have dropped in 6 months. Hmm

I'm so frustrated because I used to get this blood test invented at and only done by Cleve Clinic (TSHR mRNA) that would just indicate if cancer was present or not...and now the test is discontinued and they're not in any hurry to look into fixing it. Mind you, my lymph nodes didn't respond to RAI, so the scans failed to detect a bunch of abnormal lymph nodes--I only found out it came back by way of this test :(

What test isn't given any further at Cleveland Clinic?  I go to CC and have my TG checked every six months because I too have not responded to RAI.  But we figured that out the first time around after my TT.  We've been dealing with it for 4 years; 3 surgeries, another round of RAI which failed and 33 rounds of EBR later.  But I still have my TG and antibodies checked so I'm a bit confused by your post.

But I also agree with Tink....what's their plan for you and have you at least had a PET scan lately?  I have one every six months.  That's how they've kept my cancer from spreading.  Very quick responses to even a sign of new cancer; hi TG and/or positive PET.

I too am not avid for iodine and have detectable Tg (and TG antibodies). In my case, Tg never went all the way to zero after the RAI and once it started rising, we did a small dose of RAI to see if it would take up - it didn't - but we knew something was going on because I had rising Tg. Next step was a PET scan which showed nodules oustide of my neck. I agree with the above posters - it's critical to be managed by someone who is very familiar with thyroid cancer, better yet with atypical cases of thyroid cancer in cases such as mine, and perhaps yorus.

I get Tg checked every four to six months and since the start my doctor has insisted on sending my bloodwork to USC for this particular test, especially because I have antibodies (they mess with the Tg level, as you may already know). USC banks previous samples and reruns your last one on the same day as the new sample. This allows for greater accuracy - same assay, for example. If you have antibodies, my understanding is that it is extra important to have your Tg labs done at the same lab every time so that they are comparable.

Best to you and please let us know what your docs recommend next. Don't wait though - ask about the plan of action and reasoning. A good doc will go over all of that with the patient. My endo has been very good about going over options, rationale for the plan etc. 

On Jun 06, 2012 4:38 PM dinparadise wrote:

On Jun 05, 2012 8:13 PM shortstuff23 wrote:

How long does it take for your anti thyroglobulin antibodies to come back down to an undetectible level? I had my last surgery 3 years ago and it's stuck in the 900's, it raised by an insignificant number lol. My doctor kind of sounded surprised on the phone like it should have dropped in 6 months. Hmm

I'm so frustrated because I used to get this blood test invented at and only done by Cleve Clinic (TSHR mRNA) that would just indicate if cancer was present or not...and now the test is discontinued and they're not in any hurry to look into fixing it. Mind you, my lymph nodes didn't respond to RAI, so the scans failed to detect a bunch of abnormal lymph nodes--I only found out it came back by way of this test :(

What test isn't given any further at Cleveland Clinic?  I go to CC and have my TG checked every six months because I too have not responded to RAI.  But we figured that out the first time around after my TT.  We've been dealing with it for 4 years; 3 surgeries, another round of RAI which failed and 33 rounds of EBR later.  But I still have my TG and antibodies checked so I'm a bit confused by your post.

But I also agree with Tink....what's their plan for you and have you at least had a PET scan lately?  I have one every six months.  That's how they've kept my cancer from spreading.  Very quick responses to even a sign of new cancer; hi TG and/or positive PET.

@dinaparadise, the test is called TSHR in mRNA. There's something wrong with it and it's discontinued with no hopes of being fixed :(

I have not had a PET scan in 3 years, they don't want me to have any more radiation. I do get ultrasounds every 6 months and I don't have very many lymph nodes left in my neck or collarbone area so there's never very much to see. This oncologist at CC kind of took things in his own hands and gave me an extra CT Scan that showed nothing (even with a reccurance) so I guess they don't want to bother with scans and extra radiation I don't need.

On Jun 07, 2012 2:38 AM fireweed wrote:

I too am not avid for iodine and have detectable Tg (and TG antibodies). In my case, Tg never went all the way to zero after the RAI and once it started rising, we did a small dose of RAI to see if it would take up - it didn't - but we knew something was going on because I had rising Tg. Next step was a PET scan which showed nodules oustide of my neck. I agree with the above posters - it's critical to be managed by someone who is very familiar with thyroid cancer, better yet with atypical cases of thyroid cancer in cases such as mine, and perhaps yorus.

I get Tg checked every four to six months and since the start my doctor has insisted on sending my bloodwork to USC for this particular test, especially because I have antibodies (they mess with the Tg level, as you may already know). USC banks previous samples and reruns your last one on the same day as the new sample. This allows for greater accuracy - same assay, for example. If you have antibodies, my understanding is that it is extra important to have your Tg labs done at the same lab every time so that they are comparable.

Best to you and please let us know what your docs recommend next. Don't wait though - ask about the plan of action and reasoning. A good doc will go over all of that with the patient. My endo has been very good about going over options, rationale for the plan etc. 

Thank you fireweed (and others) My case is being managed by a doctor who only does thyroid cancer surgery and by an endo at Cleveland Clinic that deals with thyroid cancer a lot in his practice. When I would get the TSHR mRNA blood test (which is discontinued) I got a positive result when they found a reccurance, and a negative result after this last surgery 3 years ago. Unfortunately, now all we have to go by is the Tg test. My last Ultrasound was in November and there was nothing to see, I had normal .6mm lymph nodes on the oposite side from where the tumor was and nothing in my collar bone fortunately. They say I'm fine, but that's such a big number. I don't even know what it means but its huge!

Thank you @tink2002,

Yes this is correct, my doctor gave me 175 millicuries of RAI so "he wouldn't have to give me more later" and there were at least 16 lymph nodes that didn't respond to it that had to be removed a year later. I was seeing a specialist at CC that only does thyroid cancer surgery (for my second surgery) in conjunction with an endo at CC that frequently sees thyroid cancer patients.

As far as this doctor's plan, he said as long as nothing is in my lungs I could live to be 100 with it this if it ever came back, if I didn't want a third surgery. He monitors this with ultrasounds every 6 months to a year. (next one is in november)

I feel fine just worried, I'm only 21 and nothing makes any sense to me because I was passed to the adult doctors from the peds floor when i first got diagnosed at 16. Mostly because the doctors on the peds floor told me I was "cured" when I had a reccurance unresponsive to the scans. I just worry something's not right when those numbers are that high and haven't moved in 6 months. It's all so frustrating to me. My dad is a doctor, so everytime I say my scar hurts or I have swollen lymph nodes in my neck we freak out about it and it ends up being nothing since I'm always sick so I'm afraid to ask if I'm okay this time with those results. ughhhh!

Thank you all for your advice and concern. I

http://www.internalmedicinenews.com/news/diabetes-endocrinol

^ this is the TSR mRNA test that is no longer available :(