Pain in throat, doctor found nodule - sonogram didn't -What to do now?

[hidlyn]

I have CFIDS/FM and was diagnosed as hypothyroid 3 years after the onset of symptoms (weight gain, fatigue, irregular cycles). Since swollen lymph nodes occur with CFS, I was no concerned at first when the lower middle section of my throat started to hurt several months ago. The pain spreads throughout my collarbone area as well. I was assuming it was lymph node pain until I found a lump on my thyroid. After seeing my endo about it, she sent me for a sonogram. I also requested as a precaution to be tested for serum calcium and parathyroid hormone levels since my mother has just recently had her parathyroid adenoma removed along with half of her thyroid. They found medullary thyroid cancer (she's 58) in her thyroid which was missed by the biopsy taken before surgery. She is currently being tested for the RET gene. Preliminary results showed that she does not have the gene on the 3 common exons, but they are doing further testing to be sure.

My concern is that maybe I should be tested for calcitonin levels. I discussed this with my endo and she wants to wait to find out if my mother has the RET gene. Since I found out it can be familial without the RET gene I am concerned. This pain WILL NOT go away. With the pain comes a lot of fatigue. It's dead center on my thyroid that causes the most pain. I experience horseness talking too much or singing, and feel like I'm trying to swollow a big pill that won't go down. The only other thing I knew to request was a test for Hashimoto's. Am I being overly concerned about cancer? And, is there anything else that would be causing pain?

[Mark Lupo, M.D.]

If you have a thyroid nodule and a family member with MTC there is no reason not to do a calcitonin level - regardless of the RET results.  Are you having a biopsy of the nodule?  Hashimotos testing is usually done with blood levels for thyroid antibodies -- this does not change the cancer possibility if it is positive.  If the pain persists and there is no clear thyroid reason then I refer to ENT for an evaluation.

[hidlyn]

I forgot to mention that I have had CFS/FM for 10 years and been hypothyroid for 13 years.

Thank you.

heidi

[hidlyn]

I have not had a biopsy done because the sonogram results were negative for a nodule despite the fact that my endo said she felt one. She did honor my request to test for Hashimoto's along with my regular TSH test. I'm awaiting results.

So, you do feel I should push for calcitonin levels? My mother was placed in a room to rest for 30 min. before her level was taken. Is this typical? What is the reason for that?

Thank you so much for your response.

heidi