Having surgery

[Liz94]

My thyroid has been underactive for the last 14 years and I've always taken Levoxyl 100mcg.  A few months back my doctor called me and said my last blood test indicated that my dosage needed to increase so I moved up to the next one, I think it was 112 mcg, not sure. Anyway, after moving up I started losing weight rapidly, my hair started falling out and I did not feel well. My doctor was not interested in listening to me, said I should give it time. So, just for my own piece of mind I went to an endocrinologist who found a nodule on the left side. He did a fine needle biopsy on the nodule and it came back showing papillary cancer cells. I was sent to a surgeon and am now having a total thyroidectomy on Friday.  This has been very quick and I feel very overwhelmed at the prospect of this surgery. I'm scared and I wonder if I should have gotten a second opinion? Also, my surgeon says I will have no drainage tube, why do I keep reading that everyone else does?  Also, they say I'm going to have to go off my meds for several weeks/months and follow a low iodine diet for the radioactive pill. Am I going to feel ill after going off my meds for so long?  Thanks!

[utahmomma]

I'm sorry for your diagnosis but the FNA results are conclusive.  Actually consider yourself lucky - so many people go through FNAs but don't get conclusive results.  Since it's conclusively cancer the best way to treat it is to get it out then go from there.  I know it's frightening, I've been there  (and no drain tube on either of my surgeries).  You'll be okay.  Of all the surgeries I've had it's actually the easiest surgeries I've had.


Get it out then go from there.  We're all here for you.

Utahmomma
papillary carcinoma and three sisters with papillary carcinoma

[Liz94]

Thanks for the encouraging words. I'm so scared of this surgery for some reason, I just can't explain it.  I've had a hysterectomy and prior to it I was fine. This one though, just scared.  I guess the thought of having my throat cut open just isn't appealing to me!  I'm worried about the pain and I'm worried about the way I'm going to feel afterwards till I can get back on the meds. I remember how I felt before I was diagnosed as hypothyroid and it was not pretty.  I'm so scared of that again.  I guess I should be greatful to get rid of this cancer but the whole process has just happened so fast I haven't even digested the "cancer" part of it yet.  I know I want it out. I just need to hear that I'm going to be fine!

[utahmomma]

If it helps at all many, many of us here will tell you it is the easiest surgery we've ever had.  Of course, it's still surgery and you will hear some bad surgery stories here.  The key is to find a surgeon who has done many, many of these before.  I've had multiple abdominal surgeries and they are *killer* compared to thyroid.

Hey, get the darn stuff *out* and deal with it later.  "Cancer" didn't hit me until I watched my daughter go through the surgery a year later - then it really hit me hard.

You will be fine and you have lots of good support and friendship here!

[kitcurious]

Liz94 I hope you  have a good surgery and a smooth recovery. I am sorry you have to go through it all.
utahmomma- somethings you and Liz said were interesting. I have had the most bizarre reaction to treatment for Hashis and started the reaction within weeks of starting levo, which made me hyper and I have been off levo for months and am still hyper with continued weight loss.
My ENT wanted a biopsy of the solid hypoechoic nodule in my right lobe and the endo ( who knows "everything"-not) had said it is just Hashis and I don't need biopsy. I told him ENT wrote an order for one and then Endo said he'd do the biopsy himself.  He did the biopsy. He later said the lab told him he didn't get enough material for evaluation and he was "fine with that".
Well, it was 1.4 cm last spring, don't know what it is now, and I am tempted to take the ENT's script
( I still have the order and the radiology center called me to reschedule after I canceled because endo was doing it) and have another biopsy at the radiology center . They have a pathologist on the premises to make sure they DO get enough material and you find out right there.
I guess I'll call my insurance. Since the first one had an inadequate sample I assume they will pay for a second...
Sorry to ramble- but it does make me wonder.
Thanks for the posts and Happy Holidays to you.

[Liz94]

Even though I don't know what Hashis is, I'd get another biopsy for my own self knowledge. I'm new to all this nonsense and not having fun!  I was happily living my life taking my little yellow pill everyday and getting a blood check every six months. When nothing changes for 14 years you kind of just go on with life and not think about it.  I felt great too, no problems whatsoever when they decided to increase my meds. Then whammo, more Levoxyl and I'm a mess. The hair was coming out in clumps and I lost 8 pounds in 2 weeks, I was running all over the place, then I had the night sweats and couldn't sleep.  THey have since lowered me back to my 100 mcg and now I'm constipated. Yeah, good times.....such good times....

[kitcurious]

I'm really sorry. It's hard  to switch back and forth like that. The night sweats and running all over the place I can relate to big time.  The scariest part is you know you require sleep but you feel just energized up at 3 AM  -bleah. Most of the time I'm myself but I get these brief bouts of irritability like instant and then gone.

When starting the Levoxyl I went to GNC and got biotin supplements because some dermatologists  said they may actually help mitigate any hair loss. I am sorry that happened to you..
I'm not sure whether the biotin helped or it just wasn't something I got saddled with. I stopped taking it after about a month.

Hashis is just short for Hashimoto's thyroiditis. It attacks the thyroid and makes it look like it's full of holes, well it IS full of holes. But when he stuck the needle into that nodule the pain shot right into my jaw just the way it has been randomly doing since I went hyper.

I hope your surgery goes smoothly, I'm sure it will and you will be back to feeling healthy early in the New Year.
There are lots of people here who have been through the surgery and the RAI and they will be able to advise you. Please let us know how you are doing but only when you feel up to it.


Take care.

[Colleen454]

I had a total thyroidectomy a week ago today.  I had the fine needle biopsy that revealed papillary cancer and there were some giant cells mixed in (scary).  I have no drainage tube.  The surgery was much easier to get through than I thought it would be.  It is the worry that makes everything worse.  Once they took my thyroid out (I had a top surg doc in my area who specializes in thyroid surgery) they sent it to pathology and determined that my thyroid was excessively damaged to my autoimmune disease (lupus).  Prior to the surgery, the surgeon told me that most likely I would need the RAI treatment but post surgery he said I would not.  The cancer was benign but the post surgical diagnosis was still Papillary Cancer.  Almost one week after the surgery he put me on 100mcg. levothyroxin.  After I had the biopsy, I started getting that choaking feeling and from the time I had the biopsy until now (just over 5 weeks) I have lost 12 pounds.  I am wondering what effect 100mcg of the meds are going to do.  Good luck to you with your health.  Try not to worry it just makes everything 10X worse.  Take Care.

[Liz94]

I am getting that choking feeling too since the biopsy, I thought it was just in my head. I've also had an earache in my left ear. Just a constant achiness that won't go away.  Okay so what you are saying is that there is still a chance that I could have this surgery and still NOT have to get the RAI? My doctor is acting like it's a given to be on the "safe side." I don't want it! I want my Levoxyl!  I think the reason I'm freaking out is that I really didn't have any time to really find a good surgeon. The endocrinologist sent me to the one he recommends and he's a general surgeon. He seems like a good doctor, performs over 20 thyroidectomy's a year and was very confident in himself.  I just wonder if I should have taken my time and found a surgeon that specializes in just this.  It's such a time consuming process and when they tell you you have cancer, it's all I can think about to get it out NOW.

Also, regarding the hair....I'm on every hair vitamin on the market!  I take something from GNC for hair and I also take Evening Primrose Oil (Endo recommended that.)  He said it's not gonna help me now but in about 6 months I'm going to have a gorgeous head of hair due to the hair cycle.  Well, I won't have gorgeous hair if I'm bald!

Thanks for all the support, I feel a little better now knowing this isn't going to be as horrendous as I thought. My surgery is Friday morning. I'll keep you posted.

[JPW0715]

Hi, I am sorry you are having surgery.. I just had it a week ago tomorrow and I was terrified.  I cried for a week every day before it happened.  BUT..  I promise it is not bad AT ALL.  I have had no pain, some discomfort but not severe pain.  I had no drain.  Honestly, the worst part was the sore throat from the anesthesia tube, and that only lasted two days.  I am totally off pain meds, and the scar seems to be healing nicely. Good luck with your surgery!