Does anyone regret having a Thyroidectomy?

[CaliGirl35]

Hello,
My TT is scheduled in 2 weeks & I am starting to get nervous! I don't have a definite cancer diagnosis, which would probably make it easier for me to jump under the knife, but, I would love to hear from my fellow thyroid peeps & see if you are happy with your decision or if you regret it! Please share & many thanks in advance! :)

[gimel]

"Your body Keeps rejecting the medication"  How do you know that?  

Please post your thyroid test results and reference ranges shown on the lab report.  Are the doctors dosing you based on TSH?

[NOMORETHYRIOD]

I 100% regret getting my thyroid taken out because since it been out I've gain over 60 pounds and still gaining. My body keep rejecting the medication so my doctor are still playing with the correct dose which seem impossible. My body hasn't been the same, I'm always exhausted and have gain depression over it. I use to be a pretty and now I don't even want to take care of myself anymore. I should of taken the radioactive treatment instead and have the risk never having kids then having it removed.

[tantanboogz]

Did you end up having your surgery?  I was diagnosed with Graves disease three years ago.  I was on medication for a while but then was taken off because my doctor said it wasn't safe and could cause liver problems when taken for more than 2 years.  I have been off meds for seven months now.  I just got my blood work done and though my levels did not go back up, they didn't go down either. Just stayed the same.  Still hyper.  Since I have other family members with Graves that is known for going into remission, then reappearing, the doctor is pushing for the surgery.  That combined with the fact that I recently got married and would like to start a family.  I am completely freaked out by the idea of this surgery.  Please keep me posted on how everything goes.  

[CaliGirl35]

Detect what? The nodules? Back in July 2010, I went to my regular doc after having a sore throat for a few weeks, thought maybe it was strep. I had also noticed a little bump on the front of my neck, kind of like a small adams apple, so I mentioned that to her & she ordered an ultrasound (sonogram) & there they found a 1.5 cm complex nodule on the isthmus along with a couple other small ones on the lobes they didn't measure. I was completely clueless, never had any thyroid issues or irregular blood tests. Now, 8 months later my thyroid seems to be covered with them and a few are above 1.0 cm, mostly solid or complex. Hope that helps! What's your story?

[CaliGirl35]

Thank you all for responding. My surgery was scheduled for Dec. 30th but I did cancel it on the 27th, mainly because I had bronchitis with congestion set in & I didn't think it would be wise to go through with it, although Kaiser was okay to move forward?!?!

Anyhow, I did see another ENT today that's referring me to Kaisers top thyroid doc of San Diego (he usually only sees "confirmed" thyroid cancer situations so I'm really hoping he will see me). Will know more this week! Just praying for this all to be behind me already as I can truly tell I feel worse now then ever before. I am so hoarse I can't even take my business calls (thankfully my husband can most of the time).

Anyhow, I too am afraid that it's probably cancer so with that I feel I have to have it removed to know for sure. It would be great though, if all my doctors were on the same page rather than telling me something different each time. The most recent diagnosis is "thyroiditis with a multinodular goiter with a dominant complicated cyst" Anyhow...thanks for taking the time to reply! I will keep you updated when I actually have a new date set!

[Brucergoldberg]

How did they detect it on you?   The sonogram?

[CaliGirl35]

Wow...I hope I breeze through it as well as you did! Thanks for sharing! :)

[mrsomes]

I had a TT back in June 2009 due to a very large multi-nodular goiter that the drs for years I should have removed.   My thyroid started to act up and I was, quite frankly, tired of worrying that the goiter would be cancerous.  No cancer was found.   I had an unusual complication a few hours after the surgery but once that was rectified everything was fine.   No pain, no voice issues.   I was very, very tired for a number of weeks.   Meds were adjusted every 6 weeks or so and by 6 months I felt good.   Now I feel completely normal...actually better than I had prior to the surgery.   No weight issues.  Currently on 100 mg of synthroid (2 50 mg tablets).  Good luck.

[spiralz06]

How are you doing? Did you have the surgery?  Are you on replacement hormone?  

  I have had a multi-nodular goiter since 2005.  All tests/bloods negative and within range.  Could have prolly used some iodine and a smidge of T3 but maybe I will now.  Found a new doctor.

I put myself on Iodoral this past summer.  I canceled my surgery.  Chickened out.  It is getting quite large.  I am afraid of cancer.  But...

Hope all is going well for you.

[karmazrevenge]

Hi!  I went through EXACTLY what you described about the anxiety over surgery and not knowing what to do. Against every screaming cell in my body I had my TT Dec 16th 2010. It came back positive for cancer. Today is my RAI, and aside from being really hypo it hasn't been too bad and I don't regret doing it. I didn't like my docs either, but they ended up being the best at what they do, so I dealt with it and today I can say I'm glad I did. Hang in there and please keep me posted. Love and prayers :)

[swenger]

I just had a TT 8 days ago and it was a piece of cake compared to what I thought it would be! I am a total chicken and a huge baby and I surprised everyone, including myself. I just got the staples removed yesterday and am planning on returning to work on Monday. I was diagnosed with papillary cancer on the right side. i don't tolerate pain meds well and I had a reaction to the meds they gave me in the hospital. Truly I didn't have any pain and when I returned home I just took advil or tylenol. I have total mobility in my neck and did right after surgery. Hope all is well and I wish you luck!

[CaliGirl35]

Thanks for sharing Totie! It's good to hear stories like that. Glad your doing well!

[Totie]

I had a TT 16yrs ago. I had the RAI as well.

The first year was the hardest due to getting my dosage correct. We finally did & no problems thyroid related anymore. I did not any weight once my dosage was correct for me. I still work, am a wife, mother & do all family activities.

I don't regret having one, but I was young when I had it (23), so my mind was to preoccupied with other things that i didn't worry or think about it at the time.

At least for me, it did not alter my life.

[CaliGirl35]

Hello Vicki,
Thank you for sharing your experience. I hope you continue to feel better & better each day! Unfortunately, I developed a bad case of bronchitis a couple of days before my scheduled surgery last week so I canceled it for now. Hopefully I will know more this week about moving forward. I have not been 100% comfortable with my doctors, as they have been dishonest with me & more concerned about covering their tracks rather than getting me well, so I am trying to get transferred out of network. Did you have any symptoms that made you think maybe it was cancer? Do you have to have RAI? I honestly am trying to stay positive about all of this, but it's so hard as I often feel like poo & I have to pretend everything is okay with my family, friends & co-workers. I don't want them feeling sad for me, especially my kids & I can't afford to lose any business at work. I just wish I could wake up from this nightmare. Anyhow...enough of my pity party...Congrats on your surgery Vicki & Boots, if you are reading this, I hope your surgery went well today. My thoughts & prayers are with you all. Hugs!

[Vicki_Ann]

I just had a total tt on Friday.
I must say I was a nervous wreck before hand.

I like you had a "suspicious" FNA with the first endo and then I went for a second opinion since I was not having any problems. the second dr did determine it was indeed cancer.

so far the surgery went as expected and I actually feel like myself today. so far no problems. they did the stitches under the skin and then "super glued" clean edges. Will have to let you know on that one.

Initially , I had made up my mind that unless they could tell me if was cancer I was not going to do it....BUT...I can tell you that the worry and the anxiety really got to me....so I am VERY glad to have it out.
Best of luck to you! I highly recommend DR Terris in Augusta , GA.
He is all over youtube. and you can actually see him perform the surgery if you like.

[CaliGirl35]

Redheadaussie & Boots460,
Thank you for your responses! It means a lot! As of now, I am moving forward, hoping & praying it's the right thing and more importantly that the right hands are performing the surgery! I'll be praying for you both as this seems to be an on going battle for most thyroid patients. Boots, you are right, I don't need to dwell on it, just need to enjoy each day with the Family! Merry Christmas & Happy New year! :)

[boots460]

Hi!  I have a TT scheduled for January 3rd. I too don't have a definitive cancer diagnosis, but the doctor says there are too many red flags to let the surgery go much longer.  It is an extra large multinodular goiter with several nodules over 3 cm., some microcalcifications, etc.  So like he said, this problem isn't going away and better to do the surgery before it starts causing severe suppression symptoms.

I am a little stressed out about the whole idea, but feel pretty confident in the surgeon.  My goal is to not dwell on it over the holidays and to get life and work in order before the 3rd so I can take the time to recover without worrying about everything!

I would love to hear how you are doing as we go through this.  I'll keep good thoughts for you!  

[redheadaussie]

I regret having the two surgeries but not for the reasons you would think.

I spent 15 years fighting to be heard. I KNEW I had a thyroid disease but no doctor would ever test me correctly, if at all. I then got a large goitre and tons of nodules. The first surgery removed my left side as it was suspicious for cancer, luckily it was not cancer, however the surgeon discovered a very severely damaged thyroid due to undiagnosed Hashimoto's disease. (Ha! HELLO! I told ya so dumb doctors!) 6 months on I had the other side taken out with a totally now-defunct thyroid but with multi nodules and one being a pre-cancer.

So I regret having it out in one sense, had I been treated years earlier I am sure I would never have been as bad symptom wise as I was, losing my kids, my job, etc, and may have got a few extra years out of it. However, I am happy to know I am now believed and that nasty goitre with the cancerous cells is gone. Double edged sword for me.

It doesn't have to be a cancer to have your thyroid out. Mine was dead as a dodo anyway from the damage the Hashimoto's disease had done. So if you have other issues with your thyroid, probably removal is the best thing.

It took me a long time to understand the grieving process of losing the thyroid, so be kind to yourself and be logical in the decision. Emotions of 'maybe I shouldn't be doing it', can make it harder to come to terms with the process.