I looked back 20 pages on the board and couldn't find this so I'm posting.
I had a total thyroidectomy last week. There was a small spot of papilliary cancer. Now I'm trying to figure out what next. My endo is no help, in fact I'm asking my primary care physician to find me a new one.
I've talked to the endo three time. One intake office visit. One needle biopsy office visit she couldn't complete because the lump was "too small" and "too deep." And one phone call after a different Dr with a needle and scan did the biopsy and it came back ambigious. She scheduled me with a surgeon and I didn't hear from her since. If fact her nurse told me I didn't need to see her. Thank god for my primary and my surgeon.
Now the surgery has been done I called the endo and the endo's nurse says she'll get the surgery results for the Dr. from the surgeon and they'll call me back. That was three days ago. However, she said the endo probably won't need to see me for six weeks. And, even then I probably won't need to be put on thyroid meds because the parathyroid can take care of that. Gee. It didn't before the surgery. I was already on levothyroxine.
Anyway, I can't find a lot on the web about the after effects (short-term or life-time) of a thyroidectomy. So, anybody with any info, any web sites? Thanks.
I had a TT on the 3rd. Don't you have a follow up appt scheduled with your surgeon? I had one about 2 weeks or so later. Then he told me they checked my thyroid and everything was clear. If you don't have an appt set up, I would call - to see if you can set up a post operation check up. When they take your thyroid out they automatically check it all for abnormailities. In which case you will know what it was. Mine, was Graves. My endo didn't tell me, the surgeon did. He actually showed me the paper and let me read it.
I am not sure in your case. I was told b/c I was hyper before that it would take 6mos- 1 year to get "regulated". I should expect to gain some weight. My muscles may feel tired or weak b/c of the hormone change. It's all about finding the right dose of thyroid meds, which you will be on for the rest of your life.
That just sounds wrong Stessy, I think you WILL have to be on thyroid meds, and I have never heard anyone say anything else. Did anyone say anything about having RAI treatment or anything? Sounds to me like changing endo's is the right thing to do. Real quick rundown of what I had to do after papillary cancer was discovered on my thyroid. They did a TT, They (endo) put me on Cytomel in hospital, 2 weeks later I saw endo who took me off thyroid meds for about 6 weeks until my TSH was above a certian number (don't remember how high) They then did RAI treatment in hospital (2 day stay) and a Whole body Scan to make sure the cancer had not spread, and check to make sure they got it all (it had not spread and they did get it all) Then the endo put me on synthroid and said I was to have the Whole body scan once a year for 5 years and then once every 5 years after that. I have heard that if the cancer is small enough that they skip the RAI (mine was 2.5cm). Please remember this was all about 13 years agos, and things do change check around with others who have had more recent surgerys. Please don't do what I did and not get copies of the records and keep them. Believe me when I say that in 10 years you may not remember all of the fact's right. Surgeons and Endos move or retire and the records get lost. I am having a heck of a time getting mine now. You need copies of all labs, pathology reports from surgery, and Dr's reports including the surgeon. It may even help you get better care once they realize you are proactive in your healthcare. Good Luck and Best Wishes.
I agree..If you had your thyroid out you have to me on meds...your parathyroids are a whole different ball game..your parathyroids control blood calcium..they do not produce the hormone you need to support your thyroid..When I had my Thyroid removed for cancer my parathyroids were damaged..to which I have to be on Calcitriol and oscal for the rest of my life..but even if they hadn't been damaged I would still have to be on synthroid forever... my cancer was the same as yours and it was the size of a pinhead..pretty much a fluke that it was even found..I had a small nodule that was benign..when they removed the left side of my thyroid with the nodule that is when they found the cancer starting...so 4 weeks later I had to have the right side removed...BENZI~your right..if the cancer is very small you do not have to have RAI..I had a scan and alot of follow up blood work..and my ENDO is confident that the total surgey was treatment enough..infact when it's very small the prognosis is the same as if you never had cancer... so all i have to do is go back every 6 months for blood work...I know you feel alot better after you start on synthroid(or one of the other meds) at one point my TSH was 76.5.. and i felt like crap... So I like everyone else suggest you find a new endo.. because your parathyroids don't do anything to help replace any function that your thyroid had! Hope you get this starightend out soon...
Last edited by rebekkabobekka; 01-30-2005 at 09:48 PM.
Thanks for the input. That's pretty much what I thought. My regular doctor has gotten me an appointment with a new endo. When the office of the old one finally called to set up an appointment, I told them I was going somewhere else. THEN, the endo called. Said she was sorry... Was there anything that she could do to keep me... Etc... I told her that I was not happy with the level that she had kept me involved and that her office nurse blew me off everytime I called and no, I wasn't staying.
Thanks for the tip about keeping all my records. I see my surgeon for my two week check up Friday. I'll see about getting a copy of his records then. And, by the way, mine was about 1.2cm.
It's really funny how they found it. I had a benign cyst about ten years ago. Last fall I got a new general practitioner. She asked when the last scan was and when she found out how old it was she just sent me for a baseline. She didn't feel a lump or anything (it was too deep). The scan found a cyst and the rest is history.