Tg levels after RAI

14 Posts | Page(s): 1 2  Next 

Tg levels after RAI

by lcerrone on Sun Nov 04, 2018 06:15 PM

Quote | Reply

I had RAI in April 2018.  In November 2017 my tg level was 11.8 however in July my level was 11.9. (stimulated tg before RAI was 25.7) Does this seem right that possibly my next labs will be going down??  

RE: Tg levels after RAI

by ToddlerFather on Mon Nov 05, 2018 01:18 AM

Quote | Reply

On Nov 04, 2018 6:15 PM lcerrone wrote:

I had RAI in April 2018.  In November 2017 my tg level was 11.8 however in July my level was 11.9. (stimulated tg before RAI was 25.7) Does this seem right that possibly my next labs will be going down??  

Did you have a full thyroid removal thru surgery as well, or only RAI ? 


RE: Tg levels after RAI

by lcerrone on Mon Nov 05, 2018 02:53 PM

Quote | Reply

I will try to explain my history without writing a book!!

1.   TT in Sept/Oct 2012..my tg was still in the 300/400s.

2.   RAI 107 in Jan 2013..levels were going down.

3.   Had CT of neck and chest found mass in      paratracheal..was referred to Sloan Kettering.  Consultation with Dr. Fish, had another CT which basically showed the same.  Also reviewed my Path report from 2012 they diagnosised it as PTFV rather PTC.  They also did a tg level.

4.   In 2014 I went to UPenn (Dr. Fraker) and had surgery  in   my sternum which showed PTC.  After that surgery the tg was at 6 (before it was in the 200s)

5.   After the UPenn surgery my endo had me do a "twilight" RAI at 8 mcis.  Which showed no uptake the radiologist declared me cancer.  My endo decided I was resisted to RAI.

6.    My endo decided to have me do 7 weeks of external       beam radiation and my tg went down to 0.6.  Had a follow up PET which was clear.

7.    From that point on my tg was slowly creeping up.

8.    Had a PET in 2016 and had uptake in my paratracheal.

       I had a VATS surgery in 10/2016 to get some tissue samples and the path came back as granuloma.  My radiation oncologist researched granuloma (sarcoid) and found a few cases where sarcoid can mimick TC and cause tg to elevate.  

9.    So from 2015 to present my tg was going up from 0.6 to 11.8.

10.  I talked my endo into giving me another RAI treatment,

and with the I123 I had uptake in the notch at the sternum (it could be benign or cancerous tissue) and also spots on my left lower lobe.  I then had the I131 and this is where I am at now.  I don't even know if I should have had EBR!!

11.   I have no idea how my endo arrived at the decision I was RAI resistant.  Can it actually go back and forth, resistant and then non resistant???  How long does it take for the RAI treatment to do its job??  

12.   I have not heard from my endo since April.  We had to call to get a script for my labs.  I am going to order labs from him today,  and I am seriously thinking of going to another endo.  I did like him but sometimes I thought he was jumping the gun.  He also wanted to put me on levimina, at a tg of 5!!  Because he said it was near my aorta.  My pulmonologist never mentioned that.  I refused the levimna.

So hope this was not too lengthy and confusing.   I am just trying to make sense of all this and what my next step should be.

RE: Tg levels after RAI

by butterfly501 on Mon Nov 05, 2018 10:12 PM

Quote | Reply

On Nov 04, 2018 6:15 PM lcerrone wrote:

I had RAI in April 2018.  In November 2017 my tg level was 11.8 however in July my level was 11.9. (stimulated tg before RAI was 25.7) Does this seem right that possibly my next labs will be going down??  

You had the I-131 ablation just 6/7 months ago?  Stimulated Tg is at 1 year post ablation.  That is what is recommeded in the professional guidelines. So, you still have some months to wait and see how the Tg is behaving.

RE: Tg levels after RAI

by butterfly501 on Mon Nov 05, 2018 10:18 PM

Quote | Reply

On Nov 05, 2018 2:53 PM lcerrone wrote:

I will try to explain my history without writing a book!!

1.   TT in Sept/Oct 2012..my tg was still in the 300/400s.

2.   RAI 107 in Jan 2013..levels were going down.

3.   Had CT of neck and chest found mass in      paratracheal..was referred to Sloan Kettering.  Consultation with Dr. Fish, had another CT which basically showed the same.  Also reviewed my Path report from 2012 they diagnosised it as PTFV rather PTC.  They also did a tg level.

4.   In 2014 I went to UPenn (Dr. Fraker) and had surgery  in   my sternum which showed PTC.  After that surgery the tg was at 6 (before it was in the 200s)

5.   After the UPenn surgery my endo had me do a "twilight" RAI at 8 mcis.  Which showed no uptake the radiologist declared me cancer.  My endo decided I was resisted to RAI.

6.    My endo decided to have me do 7 weeks of external       beam radiation and my tg went down to 0.6.  Had a follow up PET which was clear.

7.    From that point on my tg was slowly creeping up.

8.    Had a PET in 2016 and had uptake in my paratracheal.

       I had a VATS surgery in 10/2016 to get some tissue samples and the path came back as granuloma.  My radiation oncologist researched granuloma (sarcoid) and found a few cases where sarcoid can mimick TC and cause tg to elevate.  

9.    So from 2015 to present my tg was going up from 0.6 to 11.8.

10.  I talked my endo into giving me another RAI treatment,

and with the I123 I had uptake in the notch at the sternum (it could be benign or cancerous tissue) and also spots on my left lower lobe.  I then had the I131 and this is where I am at now.  I don't even know if I should have had EBR!!

11.   I have no idea how my endo arrived at the decision I was RAI resistant.  Can it actually go back and forth, resistant and then non resistant???  How long does it take for the RAI treatment to do its job??  

12.   I have not heard from my endo since April.  We had to call to get a script for my labs.  I am going to order labs from him today,  and I am seriously thinking of going to another endo.  I did like him but sometimes I thought he was jumping the gun.  He also wanted to put me on levimina, at a tg of 5!!  Because he said it was near my aorta.  My pulmonologist never mentioned that.  I refused the levimna.

So hope this was not too lengthy and confusing.   I am just trying to make sense of all this and what my next step should be.

Is your endo with MSK or UPenn?



RE: Tg levels after RAI

by lcerrone on Mon Nov 05, 2018 11:01 PM

Quote | Reply

My endo is from Jersey Shore Medical in Neptune, NJ.  I wish that UPenn or Sloans would have something in NJ.  Sloan does but all the thyrod cancer specialist are in New York and its a little hard getting there.

RE: Tg levels after RAI

by lcerrone on Mon Nov 05, 2018 11:06 PM

Quote | Reply

Yes I had it this past April.  I'm just wondering why in Aug it was at 11.9 and in Nov 2017 it was 11.8.  It didn't do anything!!! I guess I was hoping it would go down and I wouldn't be so stressed all the time.  And I am very upset with my endo..he has never called with my WBS results I got the results from my portal.  My husband called his office in July and the girl said well no news is good news..not acceptable!! The next day I received a lab slip from him thru email.  I am thinking of requesting labwork from my portal to see if he will send it and then I really would like to get a second opinion I just don't know where to go 

RE: Tg levels after RAI

by butterfly501 on Tue Nov 06, 2018 03:38 AM

Quote | Reply

On Nov 05, 2018 11:06 PM lcerrone wrote:

Yes I had it this past April.  I'm just wondering why in Aug it was at 11.9 and in Nov 2017 it was 11.8.  It didn't do anything!!! I guess I was hoping it would go down and I wouldn't be so stressed all the time.  And I am very upset with my endo..he has never called with my WBS results I got the results from my portal.  My husband called his office in July and the girl said well no news is good news..not acceptable!! The next day I received a lab slip from him thru email.  I am thinking of requesting labwork from my portal to see if he will send it and then I really would like to get a second opinion I just don't know where to go 

Totally unacceptable, for sure!  Especially with persisent thyroid cancer! 

I have a whack-a-do endo who doesn't follow up with me, too.  I get all my labs and reports sent directly to me, she never calls me with results.  But I've been thyroid cancer free for years now.  So, I let it slide until I have the energy to find yet another endo. 

I'm going to guess that you'll always have measurable Tg, so just watching the trend overtime is going to be your best management. 

It certainly never hurts to get 2nd (or 3rd) opinion and since you've already been treated at both UPenn and MSK, it might be fairly straightforward for them to look at your medical records and provide a medical opinion on management going forward.

Good luck!

RE: Tg levels after RAI

by ToddlerFather on Tue Nov 06, 2018 05:25 AM

Quote | Reply

First of all, whatever you really have and I won't try speculating, you do have advanced cancer. Not in the "you are dying" sense, but in the sense that your case is not "vanilla". It's a complex case that goes beyond what an Endo can handle; you are better with an Endo than with "Dr. Google", but your quest for an oncologist is justified. 

Some comments:
- Is levimina levothyroxine ? Because even with a Tg of 5, it's a good precaution to "calm down" all thyrodean cells in your body by having more hormone than you need. But if it's Lenvima (Lenvatinib), then it indeed sounds premature. 
- PET uptakes can be caused by many things, including common infections, surgery scars etc. While you shouldn't disregard that information, don't automatically take it as cancer. 
- EBR can cause genetic changes on tumors, and that could explain this reacquisition of iodine uptake. Don't take this as truth, just as a possibility. 
- It seems somewhat early to assess RAI effects; perhaps by the time it turns 1-year you could also find an oncologist to follow on with your treatment. 
- It's of no use to think whether something you had done should have been done or not; what matters is how you are now, and what should be done to improve your life. 

What would be interesting to add in your diagnosis is genetic testing; unfortunately, the samples from 2012 and 2016 won't help much, since they are from a different situation. Ast of now, you would need first to find tumors, if they still exist, then get samples of it, if they are accessible. 

One thing that helped me (PTFV, iodine-resistant, lung methastasis, NRAS mutation) navigate the different possibilities was seeing the videos from this congress. 

All the keynote videos:
https://thyroidworldcongress.com/videos-2017/keynote-videos/

Panels 5, 6 and 8:
https://thyroidworldcongress.com/videos-2017/panels/











RE: Tg levels after RAI

by lcerrone on Tue Nov 06, 2018 02:22 PM

Quote | Reply

My endo is from Jersey Shore Medical in Neptune, NJ.  I wish that UPenn or Sloans would have something in NJ.  Sloan does but all the thyrod cancer specialist are in New York and its a little hard getting there.

14 Posts | Page(s): 1 2  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.