Good morning! I have been on the thyroid board for a while, but after my hospital stay, I am now switching over to the cancer board. I have never had results out of the normal range concerning my thyroid despite my symptoms and weight. In June, I noticed a large knot on my neck and decided to watch it thinking it was swollen lymph nodes. I decided I would let them do their job and wait 2 weeks before seeing a doctor unless something changed. I didn't get sick but the swelling did not go away. I thought maybe thyroid and made the appt. and went. The doc thought so as well and sent me in for some blood work and ultrasound. The blood work was completed on Friday and the U/S was scheduled for the following Wed. I didn't hear about the blood work but went to the U/S on Wed. They don't tell you much, but I could see some of it. There were 3 major nodules with the largest being 6.5cm x 2.5cm x2.5cm. The other two were smaller than that, but very large with the thyroid and isthmus also being enlarged. A goiter was diagnosed with multiple non cancerous nodules and some being of a larger size. She told me that the scan would be read and the results sent to my doc and I would hear something in a few days. I got the call the next morning that I was being referred to an ENT and my appt. had been made for the following week. I swung by my dr's office and picked up my lab results. T3 and T4 were in normal range and TSH was mildly out of range. (less than a point) My thyroid had enlarged as I could tell swallowing and breathing. I met with the ENT and he wanted a biopsy since it was so large. I just wanted it out. I had the biopsy the first week of August. It showed the same multiple nodular goiter, large and small nodules, but no signs of cancer with the biopsy. Went back tot he ENT and he said b/c of the size they thought it should still come out so he made an appt. with a surgeon for two weeks from then. My appt. with the surgeon was canceled due to him being in surgery later and rescheduled for the next week. Went, LOVED the surgeon, eased my mind, and scheduled the surgery for the 5th of Sept. Had my pre-op work and went in for surgery as scheduled. Surgery was thought to take 2.5 hours and spend 23 hours to 1.5 days in the hospital for TT. I was the first that morning and my surgery was not 2.5 hours, not 3, not even 4, but a little over 5 HOURS!!!! They kept calling my husband on his cell throughout surgery for updates describing it as HUGE! My thyroid reached ear to ear, up against the bottom of my mouth and down behind my collar bone. He was shocked as none of the scans showed this!!! It was growing rapidly and the nodules were also getting larger and plentiful! They already had my room and my family was sent there to wait on me. I woke up in recovery and they took me up. I don't remember much about that day as I am sure I was out from keeping me sedated for 5+ hours of surgery. That night I had my dinner tray with jello, broth, juice, etc. (all liquids) and did fine eating it. Even after the surgery I had more turn in my neck because I had more room after getting the thyroid removed. I was doing well, he didn't see anything of concern (no cancer) and I was going home the next day. THEN....my calcium takes a dive. I don't mean falls...I mean lab on the phone, paging doctors, heart skipping CRITICAL dive. This begins an array of calcium issues. Over the next week, I have no idea how many IV's of calcium I received, but it was too many to remember. I was having calcium tablets like children eat m&m's. My parathyroid had not been removed, two had not even been bothered, but the upper two had been replanted. They weren't kicking in. Over the next few days, my numbers would inch up. They'd get it out of critical and feeling good about low and it would bottom out. I can tell you all the signs of low calcium. I stayed for 8 days until I didn't need IV calcium for 36 hours. I got where I could recognize the EARLY symptoms and the oral calcium was bringing it back into a low zone. He sent me home on the 13th at 9pm with the directions to take OSCAL 3 scheduled times a day with two each time plus two additional times of 1 and to take them if I felt the symptoms begin. I was also taking a RX calcium multiple times a day with included vit.D, though I take 50,000 units of vit D twice a week anyway. He told me to get some gummy calcium and keep them around like candy to munch on. He doesn't want it in normal range on calcium supplements because he wants the parathyroids to remember what they are supposed to do and begin to do that again and bring it up naturally. That makes perfect sense. After discharged Thursday night, I've been eating them and continue to feel better. I still have some numbness and tingling, but not as bad as those critical times. I have to go back in for blood draw on Monday, see the doc on Monday, then blood draw on Thursday as well. My incision for that huge thing looks great and the tape is coming off daily. My bruised up arms from constant blood draws are looking better (not good ) and I'm feeling better. I got the pathology report back and after all the NO's to cancer, it was papillary cancer. Doc said I did not need RI tx because he had scrapped the area and there was no thyroid left. I have been on my my synthroid since 2 days post op but am still tired easily and think it is going to have to be increased much more. All in all, I am glad it is out, am now cancer free and looking forward to having it all in correct numbers.
Wow, I didn't really update this. I am now 4 days shy of being 3 months post op. My scar is looking nice and thyroid medication wise, I am doing good. I am still have calcium issues and the past two days have been reminding me of the very beginning. I am still taking what is considered large amounts of calcium and my levels are staying in the 8's. (Much better because I didn't think I'd see those numbers again.) I am still taking calcitriol (RX) several times a day and also oscal several times a day with calcium gummies and tums mixed in throughout the day. I do lab work weekly to ensure that the levels don't come up to quickly. Last month I went through 180 calcitriols and a giant bottle of oscal along with a bottle of tums and two gummie bottles. This seems extraordinary high to me still. This month he only gave me 50 calcitriols, so here's hoping that is all I need. My pathology report did come back that I had papillary cancer. Every appt. I've made with the endo has had to be changed for different reasons so I still haven't seen one. My surgeon says everything was scraped completely clean and I should need no other surgery nor RAI tx, but others are telling me the endo may say differently. I am wondering when they will do the first ultrasound as a base marker for furture reference. I guess my biggest concern is getting this far out seeing the endo and them wanting to do tx. I would not be happy.