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Old 02-13-2011, 07:45 AM   #1
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negative scans positive Thyroglobulin levels

Hey Guys,

Does anyone have a negative scan and repeated positive and rising thyroglobulin levels? If so, what did your doctors tell you, or do. Stuff that I have been reading have me so confused.

Thanks

Last edited by jeanniebj; 02-13-2011 at 07:47 AM.

 
Old 02-15-2011, 07:19 AM   #2
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Re: negative scans positive Thyroglobulin levels

Quote:
Originally Posted by jeanniebj View Post
Hey Guys,

Does anyone have a negative scan and repeated positive and rising thyroglobulin levels? If so, what did your doctors tell you, or do. Stuff that I have been reading have me so confused.

Thanks
Most of it is "watch and wait". I continue to have neck ultrasounds, done "ear to ear". Some of us also have CT, MRI, PET. If your TG is over 10, your insurance will cover at PET,usually.

What is your TG and how fast is it going up? If it is just going up a little---like 5, they will ignore it, because the tests aren't totally accurate.

Tell me your history, and I can help you more. This is my story for the past 5 years.

 
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Old 02-15-2011, 07:29 AM   #3
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Re: negative scans positive Thyroglobulin levels

I just read your post on another thread. From my experience, your Doctors are on course. You just had another RAI---you need to give that a chance to work. Of course your TG is elevated now----you were just treated.

If I were you, I would give it some time.

In the guidelines for Doctors treating thyroid cancer, it states that roughly 1/3 of us will have TG, where the source can't be found. Sometimes the RAI doesn't work. That doesn't mean we are going to die from this. That is why they don't keep doing repeated RAI's.The side effects of that are worse than living with TG. TG means microscopic cancer, that may not grow into anything that causes issues. You had a ton of lymph nodes removed. They could have missed some, with microscopic cancer. RAI doesn't always work on lymph nodes.

By the way, a PET scan may not pick up regular papillary thyca. It usually picks up the more aggressive types. Also, it is more accurate when you are hypo from being off meds or on thyrogen.

 
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Old 02-15-2011, 06:00 PM   #4
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Re: negative scans positive Thyroglobulin levels

It shot up from 3.9 to 6.9 then it went to 7.7. My TSH (with Thyrogen) went up to 140 and the I believe he is a little concerned because as he told me, I had extensive lymph node involvement, plus I am 48 chasing 49. They removed close to 50 lymph nodes and he said that from every level that they tested there was cancer. I had some major complications during/after surgery and had to stay in the hospital for 5 days, but thank God, I made it. I had to be infused for over 10 hours with calcium. My heart was doing funny stuff because of the complication. I have an HMO and the PET scan is only costing me my copay or probably $50 bucks. Any help/advice you can give me is greatly appreciated

 
Old 02-15-2011, 06:37 PM   #5
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Re: negative scans positive Thyroglobulin levels

The TSH is meaningless. It went up because you were hypo, before your scan. The only time it means anything is that you should keep yours below 0.1 suppressed, to keep the cancer from growing. I guess I can't use it's nickname, because this site bleeps it out!

Were your labs done at the same facility? Sometimes that accounts for the discrepancy.

How many years has this been going on? You think you are old....I was 54 when diagnosed---with a 2 inch lymph node in my neck, in addition to the thyroid having nodules.

I have a feeling you still have cancerous lymph nodes in your neck. I probably do, too! Eventually, they will be found. I don't think they will kill us before then. Seriously!

 
Old 02-15-2011, 07:45 PM   #6
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Re: negative scans positive Thyroglobulin levels

Hey Linda1652,

I am not sure if the labs are done at the facility or they are outsourced. I would like to think if they are outsourced, they would use the same lab each time. I got diagnosed in August 2009, had surgery in October and got checked in July 2010 and it was elevated then, but I think he said it was only detectable and he wanted to just watch and see. He checked it again 3 months later and it was still up. He waited 3 months he said because he wanted to see if it would resolve on its own. It did not, so he does not want give me any additional treatment until he is sure what he is treating. I agree with you that there may be lymph nodes hanging out somewhere. The surgeon also said that I had tumors embedded in my larynx and that he took out as much as he could to preserve my vocal cords so that I would be able to speak. After the surgery I was only able to whisper for a couple of months, then my voice gradually came back. So I think that probably that is what is being detected. I am scheduled for the PET scan on the 24th, so I guess we will go from there. Again, thanks, it is really great to share with someone who has been there too.

 
Old 02-16-2011, 10:08 AM   #7
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Re: negative scans positive Thyroglobulin levels

Jeannie,

So your TG results are while you are on synthroid? Were they all when you were on synthroid?

If he thinks the cancer is still in your larynx, they may give you another RAI. Oh...that is just what happened, right?

That second RAI could kill it.

 
Old 02-16-2011, 06:01 PM   #8
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Re: negative scans positive Thyroglobulin levels

Hey Linda,

Yes, the TG levels are while on synthroid. I hope it kills it too. I am scheduled to do the PET scan next week. Let's hope they will be able to make a decision one way or another.

 
Old 02-17-2011, 06:43 AM   #9
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Re: negative scans positive Thyroglobulin levels

Are you going to still be hypo (off synthroid) for the PET, or on thyrogen? I wasn't. My Doctor at the time didn't know that is the best way to do the PET---off synthroid makes the cancer active, so it can show up.

I have learned a lot along the way. I have even bought expensive books---written by the experts. Most of the regular endos don't know that much. They are experts at diabetes.

 
Old 02-27-2011, 08:19 PM   #10
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Re: negative scans positive Thyroglobulin levels

Hey there, I got my PET scan results and they are not the best, but at least I now know for sure that the cancer is back. Results read: "There was uptake in the axilla near the arm pit. Solitary, focal metastatic focus in the left axillary region immediately beneath the coracoid process of the scapula. The abnormality cannot be seen on the CT images, probably due to the absence of intravenous contrast, and probably correspond to a nonenlarged axillary lymph node. There are mild symmetric inflammatory changes in the salivary glands probably related to prior I-131 therapy. The rest of the PET scan was within normal limits."

I am not sure what this all means in English or what they will be doing. My husband got the letter yesterday, while I was hosting a party and decided not to give it to me then (good decision) so I just got it this afternoon. Does anyone know what this all means in simple terms and what they will probably do about this

 
Old 02-28-2011, 08:37 AM   #11
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Re: negative scans positive Thyroglobulin levels

Jeannie,

I looked it up as best I could. It seems there are lymph nodes in this area. So, that lymph node is the source of your TG. I imagine they will want to do surgery. Don't know how accessible that area is. I was once told my TG could be in my mediastinum---which is very difficult to ge at.


I asked the moderators how to give you a private message. It is killing me because I want to point you in the direction you need to go, but I was told that this site doesn't tolerate that.

At any rate, this isn't bad---you knew it was lurking somewhere, just like I know mine is lurking, too. Lots of people live their entire lives like this. 1/3 of us, actually. Check your private message box from time to time---if I am able to get through!

 
Old 02-28-2011, 03:12 PM   #12
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Re: negative scans positive Thyroglobulin levels

Hey Linda,

I did some research myself and found out that it is not typical for the cancer to metastasize in that area. There are not many incidences of that. The study also states that metastisis there means that it is systemic and the prognosis is not very good. I tried finding other literature to refute that, but was not able to find anything else. I really appreciate your input. I did the PET on Thursday and got the letter on Saturday. I thought that they would at least give me a call or schedule an appointment. Look forward to hearing from you again.

 
Old 03-03-2011, 06:50 AM   #13
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Re: negative scans positive Thyroglobulin levels

sorry...I just saw this today. You have to be real careful about how how you interpret those studies. What they mean (I think) is that it is hard to "cure". If it is in a lymph node, the prognosis is the same as thryoid cancer in the thyroid. Research says that over and over.

You and I will probably always have TG.I think that is what they mean by systemic. It is going to hide in weird places. But, that doesn't mean we are going to die. This is going to be a chronic disease for us. But, not fatal.

 
Old 05-19-2011, 12:15 PM   #14
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Re: negative scans positive Thyroglobulin levels

I am in the same boat as you. I am just a little over a year out from thyroidectomy from papillary cancer, and my radioiodine uptake scan was clear, but the thyroglobulin level is not only present but quite elevated. My Dr ordered CT scans which also show the thyroid bed is clear, so he is perplexed about the level. My understanding is only thyroid cells release thyroglobulin, so I am concerned there may be cells that traveled somewhere else. Dr says he cant treat it if he cant visualize or locate it, so I am concerned.
I have also read that body scans arent always so good at picking up on the papillary cancer. Our plan is to monitor the levels every couple of months to see if they rise or trend downward.
Good luck to you, hope this helps.

 
Old 05-19-2011, 12:53 PM   #15
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Re: negative scans positive Thyroglobulin levels

What is your TG number?? There are so many of us in the same boat. In fact, there are about 1/3 of us who live with TG, where the source can't be found. Depending on the exact value, they can sometimes guess where the microscopic cancer is. If yours is above 30, it's probably in the lungs. But, that doesn't mean you will EVER be bothered with it. You could end up fine.

 
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