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Elevated TG levels.....

ThycaAnne
Posts: 68
Joined: Dec 2011

Hi, All--

 

Haven't posted in a while on this board because I've been on the breast cancer boards.  My one year checkup was good so I can breathe for a little while!!

 

I am 2 1/2 years out from my PTC diagnosis & TT.  Had RAI twice & am now considered non-iodine avid (I think that's the term).  Anyway, RAI doesn't work for me anymore.  I do have "biopsy proven residual disease" in a couple of lymph nodes in my neck.  My bloodwork has always shown my Tg as <.09 (Undetectable).  Last week when I was at MDAnderson for my every 6 month checkup, Tg came back 3.4!!  I'm having a little trouble getting a straight answer on what is considered a "normal" reference range.  I am scheduled for a chest CT in a couple of weeks.  My research is telling me this elevation is prably a recurrence.

 

Any thoughts/stories/advice from all of you??

 

Thanks,

 

Anne

 

Special greetings to Julie (Sunny AZ)--missed "talking" to you!!

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

Hi Anne,

I think with Tg it isn't so much a normal range as a view of trends. My understanding is that anything torwards one or more is not ideal - ie, thyroid cells remain. And when Tg rises, that often does signal recurrance. It could be the cancerous cells in the lymph nodes. What did MD Anderson propose to do about those? RAI doesn't really work on thcay in lymph nodes from what I've read. It's either surgery to remove them or possibly alcohol ablation, if the nodes are in a spot where that could be done. I had one odd node on watch for a while that was not in a good spot to do an FNA (was between the carotid and jugular). Turned out it was not thyca and the node went back to normal a short time into the watch so I have not had to deal with thycan in nodes - others here have though and hopefully can chime in.

Best.

eileen

ThycaAnne
Posts: 68
Joined: Dec 2011

Hi, Eileen--

 

The lymph nodes were found 2 years ago at my 6 month checkup.  They did a tracer dose of RAI at my 1 year checkup that didn't work.  That is when they told me I was non-iodine avid--in other words, no more RAI because it doesn't work for me.  So we have been on a "wait & watch" for the lymph nodes.  My surgeon there has said when they get bigger or change he will go in & do a neck ressection & clean out the lymph nodes. So far, they have remained "stable".   I had my TT done elsewhere (BIG mistake!!) and the surgeon used staples.  My surgeon at MDA wants to get those out when he takes out the lymph nodes.  I asked about alcohol ablation last year.  At that time, they weren't doing it at MDA--I haven't asked since then.  As I said, Tg has been undetectable until now.  After I have the chest CT on the 28th, I will see the surgeon later that afternoon.  I am assuming there will be a plan in place by then--more testing, biopsy, etc.

 

Thanks for replying--I will keep you posted.

 

Anne

amorriso
Posts: 186
Joined: Oct 2010

Hi there.  My Tg has never gone below 4 - but it has remained steady now for over a year.  I also have tg antibodies so rely more on regular scans to keep an eye on things.  I have had about 60 lymph nodes out - only 7 tested positive and that was two years ago.  I was lucky and it was found before it spread beyond the nodes in my neck.  I've had two rounds of RAI too, and it the Tg still remains the same. 

I wish mine would someday be at that magic zero number, but for now I am content that it hasnt changed and nothing shows on my scans.  I will keep hoping for this!

Any chance you can get a PET scan?  I have used them twice in my original diagnosis - I will do one again this spring for my followup.

take care

ThycaAnne
Posts: 68
Joined: Dec 2011

My Tg number was always undetectable until now. I think the change (from undetectable to 3.4 in 6 months) is what my doc doesn't like.   I don't have antibodies & have had every 6 months labwork & U/S.  My last chest CT was 2 years ago.  So they will do the CT on the 28th.  My guess is that depending on what that shows--they will do a PET scan.  After that, who knows?

 

I will keep everyone posted.

 

Anne

Hannah1
Posts: 63
Joined: Jun 2012

 

Hi Anne, my Tg was 218 three months ago and keeps rising. I'm on the  watch for almost a year now. I have  metastazisize  in my lungs.  I don't have any symptoms yet and hopefully for along time. Had ct scan last week and will see the Dr. On the 24th. Will let you know what the drs. Will say on my visit. Take care and god bless

 

ThycaAnne
Posts: 68
Joined: Dec 2011

Glad to hear you have no symptoms.  You sound like a positive person & I will tell you (from experience) that having a positive attitude helps tremendously with this disease.....I still wake up & for a few minutes forget I have cancer.

 

The funny thing is that I feel really good right now. My (suppressed)TSH is at .07.  My doc like it to be .01-.03; but I feel better at .06 or .07.  I have been seeing a nutritionist who has me on some supplements & is helping me tweak my diet--that has helped a lot.

 

You take care, too--& let me know how you are.....I'll be looking for a report on the 24th!!

 

Anne

Hannah1
Posts: 63
Joined: Jun 2012

 

 

Hannah1
Posts: 63
Joined: Jun 2012

Hi anne

Bad news lung nodules right and left grew 2mm in 6months and said will repeat CT in 

6 months but will check me in 3 months to see how I'm feeling. Isn't that makes you nervous

He said 2mm is too small and growing slowly but I'm still concern because it's the fact that its

growing. He said no treatment for now unless it gets bigger and interfer with my breathing. Gee

this is very hard to wait and see. I just keep myself busy to get it out of my mind. I guess enjoy 

each day and deal with it when that day comes. The important now is how you feel. 

Im glad you are feeling good and that's all that matters now. Can you share what your nutritionist

had said? Take care and god bless

ltl1ekb11
Posts: 1
Joined: Jan 2013

Hi Anne,

I am in a very similar situation. I have had a recurrence 3x from PTC and RAI also does not work for me. I have not had any recurrence in almost 6 years. What I also found was that in every recurrence that I had the I-131 scans would be negtive but the TG would be elevated. I was just told told today that my TG was elevated again, and my endo is sending me for a small parts ultra sound. What I have found in the past 13 years of dealing with this is that, for me at least, in increase in TG leads to a recurrence.

I have to say I have always had difficulty getting a straight answer on what a normal level for TG is. I think that they look at baseline for you and see if there are any changes. Thankfully for me I have a wonderful Endo who does the works (scans, ultra sounds, MRI's) if I have any increase.

I wish you the nest of luck and hope that this is not a recurrence!

dendee
Posts: 1
Joined: Jan 2013

Hi Anne

Just found out that I am nonavid and have + lymph nodes by PET  ? surgery is next.  Just really worried.

wish you well

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