Nodules after rai

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Nodules after rai

by selaki on Thu Jan 10, 2019 04:34 PM

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I had rai for a toxic adenoma 12 years ago. I have been faithful in taking levothyroxine 88mcg daily along with blood tests and endocrinology appts annually. Last summer Dr ordered an ultrasound which showed 1 nodule each lobe appt 1cm each with intermediate suspicion. Ordered FNA which came back undiagnosable. 2 months later another FNA, different Dr, same result. Then a 3rd FNA same result. Follow up ultrasound showed slight growth in nodules so Dr wants to just watch it. Meantime, I have difficulty swallowing and sometimes can’t. Have chronic cough which is blamed on desert living. Where would be the best place and Dr to see for another opinion?

RE: Nodules after rai

by ToddlerFather on Fri Jan 11, 2019 02:54 AM

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Are you petite ? I ask that because levothyroxine intake is related to weight, and I take 188 mcg a day... so 88 sounds too low (although it could be the dosage for my wife). 

While following-up might sound stressing, it could be the best course of action. 

You mentioned living in the desert, but not where... there is a Mayo Clinic in Phoenix AZ, is it close to where you live ?

RE: Nodules after rai

by selaki on Sat Jan 12, 2019 09:33 PM

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I’m female if that’s what you’re asking. Interesting levo intake relating to weight. That’s the dosage I’m on now, but over the past several years, I’ve bounced between 75 mcg and 125 mcg. We live in Nevada which is well known for lack of competent medical care and I can certainly try for Mayo. I’ve read that some have been disappointed in the endocrinology dept there although it’s hard to imagine. I’ve also read (too much ) about trying to find a clinic that only deals with thyroid. I guess I’ll wait for next ultrasound in March and go from there. Thanks for your response - I learned something new!

RE: Nodules after rai

by ToddlerFather on Sat Jan 12, 2019 10:49 PM

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It's more about weight, not gender. I weight 210 pounds, and my target TSH level is TSH supression (undectable); that requires 188 mcg. The same weight with a less strict TSH would require a smaller intake, but the main factor in determining dosage is weight. 

Mayo is always listed among reference cancer centers; I don't know specifically about endocrinology there. If you go thru some of the videos at https://thyroidworldcongress.com/videos-2017/ , you find some of their doctors in those. 


 

RE: Nodules after rai

by butterfly501 on Sun Jan 13, 2019 03:04 AM

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On Jan 10, 2019 4:34 PM selaki wrote:

I had rai for a toxic adenoma 12 years ago. I have been faithful in taking levothyroxine 88mcg daily along with blood tests and endocrinology appts annually. Last summer Dr ordered an ultrasound which showed 1 nodule each lobe appt 1cm each with intermediate suspicion. Ordered FNA which came back undiagnosable. 2 months later another FNA, different Dr, same result. Then a 3rd FNA same result. Follow up ultrasound showed slight growth in nodules so Dr wants to just watch it. Meantime, I have difficulty swallowing and sometimes can’t. Have chronic cough which is blamed on desert living. Where would be the best place and Dr to see for another opinion?

You still have your thyroid and were treated for hyperthyroidism caused by toxic adenoma?

Since the FNA keeps coming back inconclusive, DNA testing should be considered.

Good luck!

RE: Nodules after rai

by selaki on Sun Jan 13, 2019 04:33 AM

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Not to seem too stupid, what does DNA have to do with it? I drank radioactive iodine 13 years ago because my Tsh was basically non- existent and after 2 years of tapazole with no change in tsh. Last summer Endo felt nodules, ultrasound confirmed with intermediate suspicion. Because of having the rai, dr said I was an “unusual” case. Thus the FNAs. If it matters, my 40 year old son is battling rectal cancer, and genetic testing showed positive for parathyroid. They tested me and I tested positive but dr says that has nothing to do w/current thyroid condition. I’m smart enough to research, but not smart enough to understand it all. I truly don’t feel right but don’t want to panic if all this is normal according to the drs.

RE: Nodules after rai

by butterfly501 on Sun Jan 13, 2019 04:44 AM

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On Jan 13, 2019 4:33 AM selaki wrote:

Not to seem too stupid, what does DNA have to do with it? I drank radioactive iodine 13 years ago because my Tsh was basically non- existent and after 2 years of tapazole with no change in tsh. Last summer Endo felt nodules, ultrasound confirmed with intermediate suspicion. Because of having the rai, dr said I was an “unusual” case. Thus the FNAs. If it matters, my 40 year old son is battling rectal cancer, and genetic testing showed positive for parathyroid. They tested me and I tested positive but dr says that has nothing to do w/current thyroid condition. I’m smart enough to research, but not smart enough to understand it all. I truly don’t feel right but don’t want to panic if all this is normal according to the drs.

If they are trying to rule out thyroid cancer, then yes, genetic/dna testing is the next step after inconclusive FNAs. 

I don't know how your TSH was non-existent when you were being treated for hyperthyroidism, and I have no idea why a doctor would ever think having RAI for overactive thyroid would then eliminate the chance for thyroid cancer.

I'm not sure what "genetic test" showing "positive for parathyroid" means.

Afirma is one brand of test for inconclusive FNAs.  Their website is helpful:

https://www.afirma.com/patients/

RE: Nodules after rai

by ToddlerFather on Sun Jan 13, 2019 05:05 AM

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If you go thru this site archives, you will see a good number of people reporting inconclusive FNAs... this is unfortunately very common. But in my case, FNA indicated FTC; frozen section biopsy indicated PTC, where in fact it was FV-PTC. This is just to make the point that while FNAs are good for not being intrusive like surgery, they can sometimes have decision value, and that's why they are tried first. 

What butterfly mentioned is genetic testing of the FNA sample, that might reveal mutations that would positively say it's something to worry about. 

In my case I hadn't done it because FNA and enlarged thyroid were enough to decide for surgery, but I later got genetic testing (Foundation One) for the tissue removed in the surgery in order to better identify target therapies. Mine is NRAS Q61R, and I'm following drug development that is related to it in hope something comes up in the future that can address it. 

So, besides possible clarity for now, this type of test can also have treatment usefulness down the road. 

Will it surely say yes or no ? Unfortunately not. 

Will it surely say what to do if yes ? Also not guaranteed. 

What I believe you mentioned was genetic testing on unspecific DNA (blood or saliva) that is analysed for different cancer risk patterns; that's totally different from sequencing of actual tumor or nodules. 

RE: Nodules after rai

by butterfly501 on Sun Jan 13, 2019 07:23 AM

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On Jan 13, 2019 4:44 AM butterfly501 wrote:

On Jan 13, 2019 4:33 AM selaki wrote:

Not to seem too stupid, what does DNA have to do with it? I drank radioactive iodine 13 years ago because my Tsh was basically non- existent and after 2 years of tapazole with no change in tsh. Last summer Endo felt nodules, ultrasound confirmed with intermediate suspicion. Because of having the rai, dr said I was an “unusual” case. Thus the FNAs. If it matters, my 40 year old son is battling rectal cancer, and genetic testing showed positive for parathyroid. They tested me and I tested positive but dr says that has nothing to do w/current thyroid condition. I’m smart enough to research, but not smart enough to understand it all. I truly don’t feel right but don’t want to panic if all this is normal according to the drs.

If they are trying to rule out thyroid cancer, then yes, genetic/dna testing is the next step after inconclusive FNAs. 

I don't know how your TSH was non-existent when you were being treated for hyperthyroidism, and I have no idea why a doctor would ever think having RAI for overactive thyroid would then eliminate the chance for thyroid cancer.

I'm not sure what "genetic test" showing "positive for parathyroid" means.

Afirma is one brand of test for inconclusive FNAs.  Their website is helpful:

https://www.afirma.com/patients/ "" target="_blank" rel="nofollow">https://www.afirma.com/patients/ " target="_blank" rel="nofollow">https://www.afirma.com/patients/

Never mind the TSH comment.  It gets confusing trying to understand thyroid disease when the topic here is thyroid cancer. 

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