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Thyroglobulin level after iodine 131

MarinMark
Posts: 139
Joined: Aug 2011

Hi everyone. Took a vacation from the Internet and computers.

It's been about 120 days since my thyroid glad was attacked by iodine 131. A week ago my thyroglobulin level was "0.8". What are your thoughts about this ? Did it get checked too early ? Is 0.8 considered high at this point in time ? lab slip shows less than 0.5 is considered undetectable. Have any of you had this elevation three months after iodine and it later fell to zero ?

Happy New Year.

csm2007
Posts: 25
Joined: Dec 2010

Good Evening,

I had 150 mci's of RAI in April 2011. It took until October of 2011 to get my TG down to an acceptable level. One more month of bad labs and I would have been in trouble, but that last month something happened...and I am so glad it did! I was tested about 8 weeks after RAI and still get bloodwork every eight weeks. With some ThyCa patients a slight rise in TG is normal after RAI and then it finally "settles down". Talk to your endo or oncologist about what levels are normal after your dose of RAI and type of ThyCa you had. They should be able to give you a more specific level of what they consider is accceptable according to your case. Best of luck in your cancer journey....

MarinMark
Posts: 139
Joined: Aug 2011

What were your values before RAI and after RAI ? How many months after RAI did your TG fall to the lowest, and what value was the lowest ?

Does an ultasound show you have residular cancer ?

csm2007
Posts: 25
Joined: Dec 2010

After my TT surgeries and before RAI in Apr 2011 I was 37, then 8 weeks after RAI I was unchanged, then 8 weeks out from there 78, then 8 weeks after that 21, long story short...finally now in December I am at 0.2 TG. I do take Nexavar and I am fully suppressed at .54 TSH with 150mcg Synthroid. I do still have small cancerous cervical lymph nodes and small lung nodules. Recently found out my liver lesions were benign. Thank goodness.... In addition to the Hurthle Cell Carcinoma in the left lobe, I had Papillary Tell Cell Variant in my right lobe. It had already spread when they found it during my second surgery. Just in watch and wait mode now...hope that helps some.

MarinMark
Posts: 139
Joined: Aug 2011

So it took eight months for you to go from 37 to 0.2 TG and a TT,only and thyroid orally were the treatments ? I thought TG cannot be measured if it's less than 0.5. Your lab reports values under 0,5 ?

From what IU've read, a TSH of 0.5 is not low enough. What did your doctor say ?

csm2007
Posts: 25
Joined: Dec 2010

Yes, it took since April to get it down. I use Quest labs here in FL, they do report tg down to the nitty gritty...LOL. my endo is progressive and feels that too low doesn't always make you feel that great. He believes in keeping it right around .5 to no more than one. But again, they are progressive. Most endos don't follow this practice yet.

sunnyaz
Posts: 582
Joined: Oct 2010

My TSH is 0.2. My Endo seems happy with that.

Celestec
Posts: 12
Joined: Sep 2010

I'm nine months from RAI after lymph node removal and my TG is still 17 before surgery it was 16.something and after RAI it was 19. My endo said it should have come down more in nine months. He ordered a neck ultrasound even though my RAI scan came up negative.

Anyone else have similar experiences? I'm hoping its not back or they didnt get it all.

-Celeste

Celestec
Posts: 12
Joined: Sep 2010

I'm nine months from RAI after lymph node removal and my TG is still 17 before surgery it was 16.something and after RAI it was 19. My endo said it should have come down more in nine months. He ordered a neck ultrasound even though my RAI scan came up negative.

Anyone else have similar experiences? I'm hoping its not back or they didnt get it all.

-Celeste

Gideyupgrl
Posts: 3
Joined: Apr 2012

I had total thyroidectomy 3/15/11 and a original TG level of 80. Diagnosis was Pappilary Cancer. Post surgery TG was 3.0 and slowly rose to 4.5 In October of 2011 RAI treatment followed by full body scan that was 'clean'. Post RAI TG was 3.8 and is now rising with last one being 6.2. I had a neck ultrasound and it was determined there was no remaining thyroid tissue. So now my endo wants to see me back and I am unsure as to what is next. I thought when my scan was clean it was over. How are you doing now? Any answers?

haisreeji
Posts: 1
Joined: Jan 2013

My dad had RAI treatment 2 years back and the TG level after one year was 1.96 but now (after 2 years) this is 155.34. How TG level has gone very high? Next week we have appointment with doctor after another blood test.

What will be the next step?please share your experiences  

 

 

amorriso
Posts: 186
Joined: Oct 2010

Sorry to hear that - a rise in TG may indicate its back....he needs more than blood tests - he needs ultrasounds and if possible a PET scan to see what is going on. When mine spread to my neck lymph nodes in my neck my TG went up from 4 to about 75....  Be pushy with your doctors - dont let them take the wait and see approach!  And remember - this cancer is very treatable - but sometimes you need to be aggressive. I am good now after more surgery and another RAI.

 

Hoping for the best...

lady hashimoto's picture
lady hashimoto
Posts: 1
Joined: Mar 2013

Hello everybody, I'm new here.. My days are full of desperation since I'm waiting for a desition from my doctors....... Long long story: In 2008 I was diagnosed with hypothyroidism, changed doctors, one of them once told me that I was making up my mind when I told her that I had pain in my neck and because doing lots of research looked like hashimoto symptoms... She stopped my T4 meds and was until 2009 that a new doctor gave me T4 again.. I was diagnosed with Hashimoto and Papillary with follicular variant Thyroid cancer in november 2011....Biopsies showed negative for some lymph nodes in my right and left side neck, but when surgery ( Total thyroidectomy in december 2011 ) they found 6 lymph nodes  " from the central compartment invaded of cancer... I had RAI ( 156 mci's ) in January 2012... Went back to work in February 10 2012..... In April 2012 I developed an allergy reaction, nobody knew to what !!! ( my doctors ) ... I was pushing on them until they found out that because the RAI, my liver got damaged .. Now Im intolerant/ allergic to nickel-gluten-casein-lactose- and I can't tolerate red meat or pork.. ((((( I NEVER EVER in my life had an allergy reaction to that )))) Now If I eat some of that, I get an instant allergy reaction ( rash and puffy face ).... I been controlling that taking enzymes and of course avoiding what causes the allergy.. okayyy so last year all my TG levels were on 0.05, for what I been told " clear "... But I been having lots of inflamed lymph nodes that doesn't need to be touch, u can see them popping on my skin... They did ultrasound and yes, 2 are the size of a peanut, they did another TG test and came back on 7.3 .. My doctor said recurrence, so they did biopsy on them and also a FNAW ( fine needle aspiration WASHOUT )... The cytology came back negative.. Now they wanna do a RAI scan to locate the cancer.. That's what my endo and surgeon said.... So Im worry, frustrated... Anyone a similar story,???????

miladyx
Posts: 85
Joined: May 2009

... with a similar level TSH? If your TSH is higher, it would cause your tg to be higher as well? Also, mind if i ask your age?

missy21911
Posts: 1
Joined: Mar 2013

I have not had the liver damage, however my TG never went down after radioactive idodine, so we did a full body scan, nothing showed (meaning the cancer was not uptaking the radioactive iodine), so I had a PET CT Scan, they found one lymph node with cancer. I recently had that removed (last week). Keep on top of your doctor, my endo was willing to wait and watch until she talked to my ENT who is big on the thyroid and follows all studies etc. 

Hannah1
Posts: 63
Joined: Jun 2012

My Tg level was 198 last sept.  and my dr.Says to wait and see. I had RAI last June. 

My cancer metastasize to my lungs. So I guess theres no more treatment until I will have 

symptoms. I just have CT scan last week and will see my oncology dr. soon. Keep up the 

positive attitude. Keep up to date with your Dr. 

Lolly808
Posts: 6
Joined: May 2009

I'm pretty worried as my Tg is 24 and I'm almost 9 months post RAI.

It has been going down every time I get labs.  It started at about 1500, but it is still not undetectable.

I see the doc on Feb 5th and I'm terrified he is going to want another RAI.

I asked him last time what happens if it doesnt go down and he said, Oh, we will MAKE it go down!  I'll zap you again!

 

Nice.  oy vey.

What are your opinions and experiences regarding having such a high level 9 months out.  It is trending down, but I obviously still have cells in there.

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