thyroid nodule questions

[suzyq45]

I had a thyroid nodule diagnosed in 2000.  At that time it was estimated to be 3.2 cm, an elongated cigar shaped nodule.  I saw an endo at a well-known prestigious institution in early 2001.  Blood work showed low normal thyroid function.  He did a biopsy and it was benign.  As time passed he said it was growing off and on but didn't seem concerned.  He did the ultrasounds himself in the office.  Another biopsy was also benign.  Suddenly in 2006 he decided it should come out because it was too large 3.6 cm.  No other tests were run.  I was unconvinced that surgery was necessary.  
I had an independent US done by the original radiologist and he said it had not grown that much.  I decided to forego surgery.  The endo was not happy when I returned this fall for a checkup and he decided to completely review my records.  He discovered he had ignored a high calcium reading he had noted in 2001 and immediately ordered more tests.  Calcium was too high still and Vit D dangerously low and osteopenia was found in the BMD (I have no family history of osteoporosis).  He put me on prescription Vit D and sent me for a parathyroid scan.  Scan results showed  I-123 uptake at 3.7% and "I-123 images demonstrate reduced uptake of activity by the left thyroid lobe compared to the right.  SPECT images demonstrate a moderate to large sized focus of abnormal sestamibi uptake in the left neck...CT images demonstrate that this activity corresponds to a 37 x 18 x 18 mm thyroid nodule within the mid to lower portion of the left thyroid lobe with a small puctate calcification inferiorly.  These findings are compatible with a hypervascular thyroid nodule."  
I have an appointment with an endo surgeon in 6 days.  I am unsure of what is going on due to my loss of confidence in the endo who has vascillated and also ignored the calcium level for 6 years.  Am I doing the right thing with the surgeon?  What are the chances this is not benign?

[suzyq45]

Saw the surgeon last week.  Prior to seeing her, she had me do 24 hr urine collection and a lot more blood work - much more extensive than the endo had ever done.  Unfortunately all the labs were not back by my appointment but I am to call on Jan 2 to talk to her about results.  She was very good at listening and explaining.  She has done over 1200 of these surgeries so has a few under her belt.  She did another ultrasound and let me look.  The left side nodule is very large but well defined and lacking calcium "spots."  Though it is very large she is not as concerned about it as the two very small nodules on the right side which are not as definitive and contain calcium specks.  (The endo had never paid much attention to this side.)  She never saw the parathyroids on the ultrasound but, since none showed up "bad" or even suspicious on the sestimibi, she believes they all may be slightly enlarged.  If this is so, she will consider taking all four, leaving a small piece of one to function.  The others would be frozen in case this piece doesn't function as it should.  If that should be the case, one of the frozen parathyroids would be inserted into my arm to take over the job.   Of course, nothing is final until she gets in there to see.  Surgery is tentatively scheduled for Jan 18.  
Thanks for your help.  I will continue to read about those of you who have had surgery.

[suzyq45]

Sorry, utahmomma, you answered the previous post and I didn't see it.  I wasn't sure if my question was posted as it said the forum was full.  
I have no symptoms with the thyroid other than problems with my singing voice - limited range and can't practice for very long.  The calcium is high and apparently has been high for 6 years but I have had no kidney stones.  
I am hoping the surgeon is more definitive than the endo has been.  The surgeon's office called and still does not have all the info they need from the endo's office - biopsy slides were supposed to be sent but never were - typical of the apparent disfunction of this office.  No one told me I need more blood work and a 24 hr urine sample so, with the holiday, I must rush to get that done on Monday for the surgeon's appt on Thurs.  I am totally frustrated but really appreciate your opinions and thoughts
Suzyq.  

[ChitChatNine]

I had 4 opinions before I did surgery and one biopys which was atypical but was totally benign.

Sorry you are going thru so much ..

With the extra calcium is all ok with kidney stones ?  Hopefully you dont' have those as a consequence.

Cheryl

[utahmomma]

I answered your previous post but here goes again:

Reduce uptake activity is something to pay attention to.  The fact that you have a solitary, irregularly shaped, hypervascular nodule is of concern.  Uptake in the neck is also very concerning.  All *could* be indicative of cancer.

It would be a good idea to discuss it with the surgeon as well as his/her experience with thyroid surgeries.  Second opinions, or thirds, never hurt.

Utahmomma
papillary carcinoma '03