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Elevated Tg levels with TgAB presence over 2 year safter total thyroidectomy

lp78
Posts: 2
Joined: Apr 2015

I was diagnosed with thyroid cancer one week prior to finding out that I was pregnant with my now 3 year old daughter. I waited until after giving birth to have the surgery and radiation. At first they said that it was local and then came to find ut that it had metastasized to 7 of 9 lymphnodes and 3 of 4 parathyroid gladnd. All was removed except two lymphnodes and one parathyroid. Now, it has been about two years and after having no follow up at all after radiation, I decided now that I have insurance to have my thyroid tested. I went over 8 months without synthroid and almost dropped as a result, I have been back on synthroid since September now and still not feeling right. So I went to a doctor and had the testing done. My doctor is out of the country but my Tg level value is 34 and my TgAB level is <1. I am pretty sure that this is cause for concern. I am nervous but staying positive. I am young and generally healthy but this makes me squirm. Is this a familiar story to anyone else out there? It really makes me upset that although I qualified for medicall assistance the entire time I went uncovered, I was not approved until after I almost collapsed and doctors thesedays are not cheap. A single mother with low income should not be put at this type of risk! I now have a much better job and insurance but I fear that the price of not being covered for so long has yet to be paid. 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Hello,

Unfortunately I think you're right to be concerned with your results.

Did you have Radioactive Iodine (RAI) treatment following your surgery?  I'm no doctor, but in my opinion you definately should have.

When was your surgery? (3 years ago from the age of your daughter.)

Which type of thyroid cancer were you diagnosed with, Papillary?

Yes, too many people in this country think money is more important than anything else, or at least they vote for people who think that.  Also, too many people in this country don't realize that spending X number of dollars now is better than spending many times more later.

Alan

lp78
Posts: 2
Joined: Apr 2015

Yes I did have RAI ... my surgery was 11-7 and my RAI was 12-26. I never had the full body scan after my RAI treatment and no other followup either. My insurance actually cancelled right after my surgery and when I went to renew (thisis medicaid we are talking about here) they tried to deny me. I reaplied and repplied and was actually told they "lost" my appilcation. Due to this, my endocrinologist busniess manager refused to allow me to pay as I go because I owed  abill and I could not aford to pay bth the bill and the office visit and bloodwork fees. SO I went without... for months. Surgery was in November of 2013. And yes it was papillary, at first with no sign of metastasis but hten , on the day of surgery actually, my surgeon reported to me that he was going t have to remove more than just part of my thyroid and take all of it and most of my cervical lymphnodes and parathyroids as well. Crazy hoe things happen. You are right about spending some now to avoid more later. It really was just the lack of funds to spend. 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

They could do the body scan now, it doesn't have to be done soon after the RAI.

It's good that it's Papillary, as Papillary is the easiest type of thyroid cancer to treat and in many cases it can be cured.

If it were me, I would be trying my best to convince my doctor to have the body scan as soon as possible.  That will hopefully help determine if the surgeon removed it all the first time and if not where any remaining metatasis is.  Another thing to ask for is a neck ultrasound, this would show any suspicious lymph nodes that may be there and I'm not sure how well metastic lymph nodes show up on the body scan.

If they do find more problems on the scan and/or the sonogram and you opt for another surgery, I would try and convince the surgeon to be as aggressive as possible in removing suspected metastasis but also any nearby tissue, lymph nodes or whatever that the surgeon can safely remove.  There have been a number of people on this web site in the last five years who have talked about multiple surgeries, removing 10 or so nodes at a time.  Fortunately for me, my surgeon was aggressive and removed much more than turned out to be necessary, but now I'm more hopeful that I won't have to have any more surgeries.

Alan

Williamryan
Posts: 37
Joined: Dec 2012

IP78,

I would urgently have your ENT or Endo test for TCV (tall cell variant) and bRAF mutation.  The pathology dept. can pull your original slides from your removed thryoid.  My ENT and Endo failed to test for that, as this test is not normally sought when diagnosing the type of thyroid cancer.  I went through RI-131.  My thryoid cancer originally spread to 12 lymph nodes, which were removed, but eventually spread to other lymph nodes in my chest and neck.  With my elevated Tg and anit-Tg (which are to be 0 without a thyroid) was the red flag to biopsy the new lymph nodes.  The biopsy showed TCV with positive bRAF mutation.  This type of papillary thryoid cancer is not treatable.  I went through 2 rounds of experimental trial chemo (pills) - which was not effective - then 6 weeks of radiation on my lymph nodes in my chest (non-operable).  The radiation shrunk the lymph nodes and so far remains stable.  I would urgently have your original slides re-biopsied.  TCV is not normally on the radar for testing when conducting the biopsy, only in the past few years have some ENTs and ENDOs started to include this in the biopsy testing.

Bill

Williamryan
Posts: 37
Joined: Dec 2012

IP78,

I would urgently have your ENT or Endo test for TCV (tall cell variant) and bRAF mutation.  The pathology dept. can pull your original slides from your removed thryoid.  My ENT and Endo failed to test for that, as this test is not normally sought when diagnosing the type of thyroid cancer.  I went through RI-131.  My thryoid cancer originally spread to 12 lymph nodes, which were removed, but eventually spread to other lymph nodes in my chest and neck.  With my elevated Tg and anit-Tg (which are to be 0 without a thyroid) was the red flag to biopsy the new lymph nodes.  The biopsy showed TCV with positive bRAF mutation.  This type of papillary thryoid cancer is not treatable.  I went through 2 rounds of experimental trial chemo (pills) - which was not effective - then 6 weeks of radiation on my lymph nodes in my chest (non-operable).  The radiation shrunk the lymph nodes and so far remains stable.  I would urgently have your original slides re-biopsied.  TCV is not normally on the radar for testing when conducting the biopsy, only in the past few years have some ENTs and ENDOs started to include this in the biopsy testing.

Bill

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