FVPTC and suppressed TSH

[hul122]

I was diagnosed with FVPTC this past year. I am a 36 year old woman. For approx. a year, maybe a bit longer prior to finding the mass in my thyroid I was labeled as subclinical hyperthyroid due to a suppressed TSH and normal T3 and T4 thyroid hormones. I did not have thyroid disease and was not taking any thyroid medications. I had no visual or palpable nodules or a goiter. Blood tests revealed the suppressed TSH initially, prompting other tests to determine a cause. Nothing was ever found within my blood to signify graves disese, hashimotos or any other autoimmine disease or cause. My subclinical hyperthyroidism was discovered when I had gone to see an allergist/immunologist. Because I had no other known signs of thyroid disease, no palpable or visable goiter or nodules it was determined that I would have my blood tested every 4 months and we would watch and wait ! In March of this year I had gone to have an MRI done for shoulder and neck pain and it was discovered during the MRI that I had an abnormal focal mass in they thyroid gland with a recommendation for an ultrasound to follow up on the abnormality. My primary care physician and a surgeon whom I had been seeing for years for breast issues whom also specialised in thyroid surgeries , both thought it was just a typical thyroid adenoma. I was told that benign thyroid adenomas and cysts are very common in women. I had the ultrasound done and they discovered a left sided multinodular goiter(not palpable), with two prominent nodules. One being complex and the larger being solid. The larger was located in the lower left pole and was buldging into or onto the cartoid and jugular, making the FNA a bit risky however the larger of the two was recommended for the biopsy. The nodule appeared to have vascularity upon ultrasound. I had the FNA biopsy done in July and it came back suspicious, stating there were rare atypical follicular cells and rare cells with nuclear grooves therefore papillary carcinoma could not be ruled out. Again the doctors believed this was likely to be an adenoma. I was scheduled for surgery in September, a partial lobectomy with possibilities of a total. In discussion prior to surgery with the surgeon we decided if things were suspicious then we would just remove both lobes to prevent a follow up surgery a few weeks later. During the surgery I was told the pathologist seemed more concerned with the smears then even the frozen slice therefore they opted to take both lobes. Only one lymph node was removed though. Final pathology came back as  absent for all the following...tumor capsule invasion, lymphatic/vascular, extrathyoid extension, and rescted margins negative. Stage :pT1,NO,MX (stage 1) No mets in 1 lymph node. The right lobe however was stated to be nodular and firm to palpitation. Sectioning of the speciman revealed abnormally colored thyroid parenchyma. being beffy red only in the central portion with a pale brown colored outer area and surface. Several sections revealed diffusely present pin point calcific substances however no apparent nodules were found to coincide with an apparent nodular surface. This lobe , the right , diagnosed as a multinodular goiter, negative for malignancy. Can you please tell me how it is that I could have been subclinical hyperthyroid and developed thyroid cancer? Have you ever heard of this and if so how often?  I am told while this is very rare its not impossible however its confusing to me that medication is used to suppress TSH to prevent growth of nodules, goiters and even cancer yet I had suppressed TSH, with no known cause and still got FVPTC. Also it is confusing to me that the pathology on the right lobe, negative for malignancy, is diagnosed as a multinodular goiter however no nodules were found. My other question is why was the right lobe abnormally colored and contained those diffuse calicific substances, what would cause this ? I did receive I 131 ablation and am now taking levothyroxine. My post ablation scan did show some abnormalities, a possible distant metastasis however again I was told it was unlikely to be a true thyroid metastasis because the cancer was small and encapsulated. I was re scanned a week later to check again and they stated they would consider what was seen to be artifacts or physilogical. It was also explained that regardless what the abnormality was, there was nothing we can do at this time because I already received treatment. I will continue to be watched and monitored and at 6 months we will do more blood work and a possible follow up scan as well as do another at 1 year. The abnormaility was seen in my right and left lower chest, posteriorly in the mid to lower spine and also my right pelvic area. My medication was just increased by .25mcg because my recent TSH showed me to be hypothyroid still. I am sure you can understand my concern and my lack of confidence in the fact that despite taking medication to suppress my TSH in order to prevent any reoccurance I have concern because I had a suppressed TSH and still got FVPTC. I am jsut curious how common any of this is or if you have ever encountered such a unusual situation as mine? Thank you .  

[hul122]

Thank you, I thought possibly there was another forum to post in when seeking a doctor's opinion and maybe I needed to post somewhere else to gain that opinion. I was also looking to gain insight from other people like myself who have had their own experiances that may be like me. Regarding doctor's and what they either know or do not know,other than their access to certain research, studies or knowledge of their patients experiances, and aside from what they learn in school they are not any different than you or I. My particular issue is that I am not typical or "text book"  and many times I don't receive an explanation. I also must agree with you in the fact that very few doctor's, in my area anyway even know anything about the thyroid. With only a few endocrinologists locally, most of them are most familiar with diabetes. I have heard many times from a doctor's mouth that pathology and radiology are all subject to interpretation. What I found most interesting in my case was that the endocrinologist himself read my pathology report and told me he had to review it a few times because the report itself did not seem very specific nor clear. All these things leave one to wonder and also leave you feeling less than confident. I have decided after losing my mother a few years ago and certain things never being clear or making any good sense even that I must be an advocate for "self" when it comes to my health. Some things, my health and well being , my life the most important deserve a more clear and precise explanation.

[Barb135]

The doctors do not answer questions on this forum.  This is the patient forum.  We are not doctors, but are all patients like yourself who are merely trying to get well ourselves and/or relay our experiences and information to others who have similar issues; we do what we can to give info that may help others because all too often doctors either don't do a good job of explaining things or they don't test for the right things.  Too many doctors do not know enough about thyroid issues to be very helpful and a lot of them are still way behind the times as far as treating thyroid issues.

If you want to reach a doctor, you will need to go to the "Doctor's Forum".  If you click on the "Forums" icon at the top of your screen, you will find the Expert Forums listed on the right hand side.  It's often pretty difficult to get questions posted there because the doctors only accept so many/day, but it you keep trying, you might get lucky.  

Good luck.

[hul122]

Thank you very much for explaining that to me, I appreciate it. Maybe I posted the question in the wrong place,?  I was hoping maybe someone else may have also had the same or a similiar experiance, but I thought that one of the doctors may have an explanation :-)

[Barb135]

It means she doesn't know how to answer your question, but by "bumping" it up, it will stay toward the top of page, so maybe someone else will see it and be able to help, rather than keep getting pushed down as new posts come in.

Sorry, I can't answer either.  

[hul122]

What does BUMP mean ?

[Smilerdeb]

BUMP..........