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Atypical biopsy results and a funny surgery date!

4K views 21 replies 9 participants last post by  jenny v 
#1 ·
It seems years since my biopsy last Monday, but today my ENT said that my bigger nodule is atypical and he recommends at least taking that lobe. My two nodules on the right had some cells in there (hurthle and something else that are 25-40% cancer) but basically inconclusive. He offered to do another biopsy for Affirma on the right, or to do a PT and check for cancer then possibly completion later, or take it all. I say, when in doubt, take it all out!

For some reason this is the most calm and assured I've been in this process. My ENT is amazing and (assuming surgery goes well) I will highly recommend him. He knew more about Hashimoto's than any Endo I've been to. I told him that my anxiety has led me to extensive research and he was very respectful of that and of my choices. He felt that in his experience, taking out a problematic Hashi's goiter ends up eliminating most symptoms and is less worry in the future. With all the research I've done, I didn't even remember to ask for a copy of my records or even read the biopsy report, I just went with my gut to schedule a TT. He's only ever had one complication of a temporary vocal chord injury, and performs 1-2 a week. He explained that Hashi's inflammation does complicate the process of detaching the parathyroid glands, but overall he is not worried about it.

I feel confident that the best choice is a TT. I'm not looking to do 2 surgeries or repeat a biopsy every year waiting for it to turn into cancer. Plus, the antibodies will still attack my right lobe and the meds will be hard to regulate. He agreed with all of this.

The part that made me teary-eyed was to have a doctor confirm that something is in fact going on with my body and I'm not crazy, and there is something he can do to help. For once I didn't get the "There is nothing we can do. Come back in one year to have TSH checked." I've already got my followup Endo appt scheduled and he said they are good about comprehensive care (not just synthroid and TSH for everyone). It feels good to know there is a real reason for having surgery, and he reassured me that if for some reason my symptoms aren't better, the Endo will help me and we'll figure it out.

The best part is, they will be slicing my neck on Halloween! Perfect time for a Frankenstein scar :tongue0013:
 
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#2 ·
As someone who had to go through with the completion surgery a few weeks after the PT, I applaud your decision! Plus with the Hashi's (which I didn't have), that just puts an exclamation point on my thinking that you're making the right decision. Good for you! Smart gal! :)
 
#3 ·
Agreed. I think this is very, very smart!
 
#4 ·
I think you're making a very wise decision, too! I'll be having mine out on Oct. 10th due to Hashi's and now swelling with compression issues, so I'll be a few weeks ahead of you. Good luck to both of us!
 
#5 ·
Wow!! What an awesome ENT! Your suffering will soon come to an end! Halloween is as good as any!! ROLF!!

 
#9 ·
Surgery partners! I read the book "Prepare for Surgery, Heal Faster" and listened to the CD once so far and honestly I haven't been nervous since. Every time I can't get comfortable laying down I look forward to it more and more. I also by chance met a woman who had her completion surgery by my surgeon and found out he's awesome! Just another sign it's the right thing to do :)
 
#10 ·
SuzieSocialWorker said:
hugs4hugs4

The best part is, they will be slicing my neck on Halloween! Perfect time for a Frankenstein scar :tongue0013:
:hugs:

Thilly Goothe Suzie --

I'm so happy for you that the book has given you the calm -- that sounds like a wonderful recommendation!!

Hugs & Blessings to you!!!
 
#11 ·
Ok guys, nerves are coming and going. Now the anxiety is about post-surgery levels. Can someone give me examples of people that were able to go back to desk work in a week and felt decent enough to work through the following months while levels were adjusted? I'm fearing the hypo extreme fatigue or going hyper and I need to work. This surgery takes all of my time off/sick days for the year. Does anyone feel that positive thinking/expectations plays a role?
 
#12 ·
I never once took a day off from work and my TSH was 121. I have a desk job and, yes, I did ask for additional help now and again, but it's really manageable. I took two separate business trips to Atlanta and Chicago, no issues.

The absolute most important thing to remember: as long as you are started on an appropriate dose, you shouldn't ever experience horrible hypo symptoms.

Does that mean you'll have a month were you are more fatigued than usual? Or that you might have a few aches and pains? No of course, not. You might as they try and figure out what meds and what dose.

I don't want to sound dismissive of other people's experiences, but yes, I do think positive thinking plays into it a lot. When people prepare for surgery by investigating short term disability, I generally expect that they will have a poorer outcome.
 
#14 ·
I had my TT on October 10th and went back to work on October 18th and have been fine. I was started on 125mcg of Synthroid after my surgery--I actually waited a few days after surgery before starting it since I had a little bit of a thyroid dump during surgery and felt slightly hyper for a few days after.

I've been doing really well so far (I don't do labs for another few weeks) and although I tend to get really tired in the evenings, I function fine during the day at my desk job. I might have even gone back to work sooner, but I couldn't turn my head too well to drive and I didn't want to risk it.
 
#16 ·
SuzieSocialWorker said:
Thank you so much for that! Really I've been so tired for so long that I fear I can't function any more tired than this, but you're right. My ENT said he'd start me right away so I'll plan on doing just fine. Again, thanks! It's good to hear other people's positive stories.
Wishing you all the best tomorrow!

 
#17 ·
Thanks Jenny, that's wonderful to know considering you had some complications. I have a very long commute so we'll just hope for the best!
Yeah, the first 3 days after surgery were not fun, but that was because of the drain and the random allergy to surgical tape. I'm pretty much 100% sure that won't happen with you! Just take it easy on yourself and sleep as much as you can afterward.
 
#19 ·
You're going to do just fine! Let us know how it went when you have a chance and good luck tomorrow!
 
#21 ·
Oh the best laid plans... here I was worrying about the Synthroid and scar, and that's been the least of my worries. Although all the research helped me know what the doctors were doing and ask the right questions, there is something to be said for doing too much. All the knowledge didn't help me avoid hypocalcemia or get through it any easier, and it was a lot of worry ahead of time for things that didn't come to pass.

My biggest piece of advice is to take charge of your health and be assertive. There were multiple times in the hospital where due to the computer system, a nurse would try to give me a med I didn't need (a shot at that) just because it was on my list, or I would have to remind them to put the cream on. Before I got a PICC line, I was getting stuck for blood by all kinds of people and now have huge bruises and scabs from people who weren't paying much attention (putting tape over the last stick, when pulled up, opens the hole). After release, the pharmacy tried to convince us to use a different form of calcium (after I just got out of ICU due to not absorbing it), and gave me the wrong dose of Rocaltrol... if I wasn't on top of it, I would have been taking a half dose and possibly ended up in the hospital. They also gave me generic Levo and I'm supposed to have Synthroid. Take charge people!!
 
#22 ·
I'm glad you're back home and doing better! The first shower I had at home after being released from the hospital was amazing, so I can't even imagine how good it must feel for you after so many days in the ICU.

That is good advice--I once accidentally got someone else's nitroglycerin pills at the pharmacy when I went to pick up a Synthroid refill and didn't realize until I got home. Everyone makes mistakes, but when it comes to our health we have to be vigilant and push to make sure we're getting the right care to feel our best.

I hope the hypocalcemia was just a bump in the road of your recovery and your party pooper parathyroids wake back up and start doing their jobs! I'm down to three parathyroids myself, one accidentally got removed with the right side of my thyroid. That side was such a mess and so sticky and inflamed that it got hidden in my thyroid and wasn't discovered until pathology. My ENT was upset with himself but I feel fine, my calcium levels have never fallen below low normal levels and I'll take losing one parathyroid over having to have continued living with my horribly malfunctioning thyroid.
 
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