# Why is this so hard?!?!?!



## adagio (Jun 25, 2012)

I'm scheduled for a left lobectomy on 8/30... LITERALLY, the minute my thyroid isn't bugging me, I want to cancel the surgery. My thyroid is definitely an "on and off" type of creature. Some days, I can feel it pressing on my trachea a little, but it's manageable. Other days, it's pressing A LOT. Today, I barely feel it. (Hence me wanting to cancel the surgery.)

I also tend to have some MASSIVE hyper swings. I really wish it was from a hyper-functioning nodule, but both my endo and surgeon don't think that's the case. My thyroid function is just fine on some days, and RAGING HIGH on others. They both believe it's from the Hashi's. This means that a left lobectomy will not solve that issue, and neither one of them are recommending a TT...nor do I want one...

Does anyone else go through this? Do you decide that you're "just fine" any time you have a good day, and you can't remember how bad it was just a few days earlier? I wanted it out so badly a few days ago, and now I'm like, "Maybe I was just over-reacting..." I really wish it would just act up like crazy, right up until the time they put me under, just so I wouldn't go back and forth like this!!!


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## Lovlkn (Dec 20, 2009)

Save yourself the hassle and have them take the whole thyroid out the 1st time.

I had 1 "normal" lab during the DX process and a massage therapist who thought I should do everything to keep my thyroid.

If I had to do over I would have my thyroid removed the day after diagnosis.

If it's pressing on your trachea then definitely have the whole thing out.


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## adagio (Jun 25, 2012)

Thanks, Lovlkn...I think I'll need to hear that about a thousand times over these next 5 1/2 weeks! The indecision seems to be a recurring theme with me. I feel like the big nerd who can't make up her mind!

Half the time, I still can't even believe there's a real nodule in there...I've heard "it's all in your head SO MANY TIMES" that I've convinced myself that those doctors were right about me all along. I'm having the US images sent to me, just so I can see it and confirm in my own mind that it's really there (even though I can see the nodule on the front of my neck, anyway). I can't even begin to tell you the accusations flying through my head that none of this is real! (These accusations all come from past memories, btw.)

"If it's pressing on your trachea then definitely have the whole thing out." - Yep...I need to remember that, even if I can't feel it all the time...THANK YOU!


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## webster2 (May 19, 2011)

I would agree. If it is possible, have the whole thing taken out. I had 2 surgeries 20 years apart. During the 20 years, I believe I had many hyper episodes. When I begain to feel really crappy, a diagnosis was not so easy until a thyroid storm hit. If you can feel it, that is pain you can do without.


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## Octavia (Aug 1, 2011)

With a 3 cm nodule, I would not be second-guessing surgery for a fraction of a second.

I had two surgeries--a partial, then a completion thyroidectomy--three weeks apart. I wouldn't recommend it. My FNA was inconclusive, but the "real thing" came back malignant. Hindsight being 20/20, I should've had the whole gland removed the first time around. ("All" I had was a 3.2 cm nodule...no Hashi's or Graves, and no real hyper/hypo swings, or else I just ignored them.)


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## desrtbloom (May 23, 2010)

Get it out! Part of your indecisiveness is the hyper/hypo mood swings that cause mental and emotional ups and downs. I'd go for the total thyroidectomy. It sounds like it is time to move forward with your health and your life.

Patti


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## adagio (Jun 25, 2012)

THANK YOU ALL SO MUCH for your encouragement. This is such a hard thing for me, and your support means SO MUCH!

It's putting some pressure on my trachea again today, which is, surprisingly, a good thing (considering how much I want to bolt from the idea of surgery!)

I know I'm going to go through with it in the end. It's just the process of getting there that's so difficult! I'll be sure to read back through ALL of these posts to remind myself that this thing needs to come out.

THANK YOU!


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## DonnaK (Mar 22, 2011)

I went through the same indecisiveness for a year and a half. In that time, my left lobe grew down below my clavicle and was strangling my esophagus and when removed was the size of a softball. I had no choice then but to have a TT as the initial surgery was to remove the right side that had an inconclusive nodule 3cm. I wish I didn't have to have it removed, but I know I had no choice.

I am in the beginning of my dosing and totally crashed yesterday. I feel absolutely horrible and today am thinking I can't take several more months of gradual increases to get optimal (if there is such a thing). I guess my post isn't exactly encouraging, but if you are having trouble with pressure now, chances are it will just continue to grow and get worse as mine did so you really should have the surgery and get it taken care of sooner rather than later- jmo.


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## adagio (Jun 25, 2012)

Wow...thank you... You're right - not the most encouraging "feel good" post, but definitely the encouraging "get it done" post that I needed. I'm so sorry you feel so awful. 

I'll be thanking all of you again once I get this done. You are all incredible people.


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## Andros (Aug 26, 2009)

adagio said:


> THANK YOU ALL SO MUCH for your encouragement. This is such a hard thing for me, and your support means SO MUCH!
> 
> It's putting some pressure on my trachea again today, which is, surprisingly, a good thing (considering how much I want to bolt from the idea of surgery!)
> 
> ...


We really have some caring folks here and I am glad you are getting the help and support you need.

I can't comment because I did not have surgery.

However, I read your posts and I am rooting for you. If possible, it would be better to get TT. Get on w/your life and live! Why worry about the other half all the time?


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## adagio (Jun 25, 2012)

There are some crazy-awesome people on this board...that's what it is!!!

Seriously...you all put up with me dealing with the same issue of indecision over and over again...that's crazy-awesome in my book!


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## jenny v (May 6, 2012)

Hey, we're all fellow sufferers here and we can relate first hand to the indecision! hugs3


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## Octavia (Aug 1, 2011)

adagio said:


> Seriously...you all put up with me dealing with the same issue of indecision over and over again...that's crazy-awesome in my book!


This reminds me of a funny t-shirt I saw in a catalog the other day. It said...

_I used to be indecisive. Now I'm not so sure._


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## adagio (Jun 25, 2012)

I TOTALLY need that!!!!!!!! It would sum up my life right about now!

I'm swaying back toward "I don't want to do this"...Seriously?!?!?! Uuuuuugh...I drive myself nuts.

I'm getting this surgery done whether it kills me or not! (Wait a min...if it kills me, I definitely want out...how to re-phrase...how to re-phrase...)

On a more serious note: Could someone please clarify... Does an inconclusive FNA mean "we didn't get a good enough sample", where an indeterminate FNA means "we don't know what this is"...? Again, with my down-playing of the situation, I see my benign results and my decision to get the surgery as me being a big wimp about a little pressure on my trachea. (I realize that benign means "the cells we're looking at on this little slide are fine, but nobody knows what the rest of the nodule holds".)


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## Octavia (Aug 1, 2011)

How much worse is the pressure on your trachea, compared to say, 6 months ago? What does that tell you about how bad it will be 6 months from now, if things continue?

I'm not sure about the difference between "inconclusive" and "indeterminate" if there is one. My FNA results, which I believe were referred to as "inconclusive," meant that they knew what kind of cells were in there, but they still couldn't rule out cancer, and wouldn't be able to rule out cancer until they had the whole nodule under a microscope. So I gave them what they wanted! And in return, they rewarded me with a second surgery. The nerve!


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## adagio (Jun 25, 2012)

Good point...

Six months ago, I didn't even know it was there. When the nodule is having a "bad day", I'm pretty much begging to get it out. When it's having a "good day", I can barely feel it at all. I make sure to journal and write down everything I'm feeling when it's a "bad day", because when a "good day" rolls around, that's when I want to bail!

Right now, I'm not sure what kind of day I'm going to have. I feel a little bit of pressure on the front/left side of my trachea, but it's definitely not painful. It just feels a little tight in there.

This, of course, means that in six months, my "good days" will consist of a moderate amount of pressure, and my "bad days" will be completely awful.

I NEED TO REMEMBER THIS!!!!!!

My surgery is five weeks from today. I REALLY hope I get a call that someone cancelled and they can move mine up! Five weeks of indecision is going to drive me nuts!


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## Octavia (Aug 1, 2011)

I agree - you need to get this done TOMORROW!


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## adagio (Jun 25, 2012)

Octavia said:


> I agree - you need to get this done TOMORROW!


GREAT!!! C'mon over...bring a baseball bat and your x-acto knives. I'm sure there's a YouTube video that would give step-by-step instructions on a thyroidectomy...

Bring some old towels, too...I'll probably bleed a lot.


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## Octavia (Aug 1, 2011)

You could probably find someone on Craigslist who would be willing to throw in some cosmetic surgery for free...

Wait...scratch that...bad idea...bad idea...bad idea!


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## adagio (Jun 25, 2012)

Craigslist? Seriously now...I have my limits...

I was gonna have you do it, since you've had experience in this area.

(Currently trying to find stories of people who had a benign FNA which later turned out to be cancer...not to scare me, but to keep me going in the right direction!)


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## Octavia (Aug 1, 2011)

Okay...so you have benign FNA results. That has a little weight. But you have an ugly, 3 cm nodule (okay, maybe ugly is a bit harsh since I haven't actually seen it) that's pressing on your trachea, and you've been diagnosed with Hashi's. In my book (which you haven't read, mostly because it's not actually written), those two things carry more weight than the FNA results.

For what it's worth, two ENTs advised me to have a thyroid lobe removed based on discomfort alone - my 2.5 cm (at ultrasound) to 3.2 cm (at removal) nodule was causing my voice to hurt and making it a tiny bit difficult to swallow correctly.

I believe you have made the right decision to have surgery, and at this point, I think it would help you to think less about the surgery itself, and more about the outcome. 

(And if it were me, I would give serious thought to a total thyroidectomy, given the Hashi's diagnosis. Then you'll never have to go through this again!)


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## adagio (Jun 25, 2012)

Thank you!!!!! All of this encouragement is exactly what I need.

My nodule isn't noticeable to anyone unless I point it out, but I can see it, plain as day! (I'll try to include an image with this post...no promises...I don't know how successful I'll be with the upload!) I think it depends on the lighting...when I'm in class (ballet), the lighting is just right so that the thing looks like a monster... (Conclusion: take class every day until the surgery.) Sadly, today is the last day of the summer term...and my last adult division class before the surgery!!!

I just found this link, and I'm making myself read it over and over and over again so that I realize this thing has to come out:

http://www.ncbi.nlm.nih.gov/pubmed/7491545

Mine is 3cm, cystic and solid, AND hypervascular. Here's to convincing myself that it needs to come out!!!

OK...here I go...trying to upload a photo or two...I'm a web designer...this shouldn't be too hard...



















Pretty, isn't it?


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## Octavia (Aug 1, 2011)

OMG...get that alien out of there!!! You will be so glad you did...so, so glad!!!!!

Okay...I read the research you linked to. That's good information. Given the fact that it could be cancer, don't you want it removed? Really...you don't want to live with that thing in there. One of two, no, make that three, things is going to happen: 1) it will keep growing inward and press even harder on your trachea and/or esophagus (and/or grow around those things), 2) It will keep growing outward and become more and more visible, 3) it will keep growing in both directions, and you'll eventually have to buy a car seat and crib for it and think of a name.

(I'm being a little lighthearted here, but in all seriousness, you don't want that nodule/tumor in there much longer.)


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## Octavia (Aug 1, 2011)

You don't want it to start looking like this:

http://www.ghorayeb.com/thyroidnodule.html


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## joplin1975 (Jul 21, 2011)

Echoing everything Octavia said and adding the following...

I didn't have an option, as we knew it was cancer. Pathology showed Hashi's as well. I did not know I had Hashi's and did not realize all the little things that were wrong with me were related to thyroid dysfunction. So what's changed?

Off the top of my head:
-no joint pain
-no muscle pain (unless I do something that merits muscle pain) (seriously, I thought everyone hurt and this was normal.)
-rediscovered my libido
-no more gut/tummy issues
-no more headaches
-I'm losing weight without restricting myself to an insane diet. I can eat like a normal person!
-energy
-no brain fog
-no more carpal tunnel
-no more weird dizzy spells

There's more and I don't know if it is *all* related to a punky thyroid or not, but it is so, so, so...I dunno know, freeing? Not to be in pain all the time. New lease on life, add in all other cliches here...

Octavia has said this before and I totally agree, given that they consider a person with Grave's who is not responsive to meds a candidate for surgery, it boggles the mind that they don't do the same for folks with Hashi's.


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## adagio (Jun 25, 2012)

You guys are awesome...BRING IT ON!!!!! You're right - I'll be much happier with this thing gone. That's what EVERYONE is trying to tell me, but my thick skull refuses to hear it sometimes! (Make that most times...)

NODULE, YOU MUST GO! Too bad it's five weeks out...still waiting for a call to move it up! The problem is that my surgeon is awesome, so EVERYONE wants to see her. I guess that means I'm in really good hands. 

Octavia - I haven't bought a crib and a car seat for it yet, but it does have a name: Hal. It's named after the computer that tried to take over in "2001 Space Odyssey". 

Thanks, you guys!!!


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## Octavia (Aug 1, 2011)

adagio said:


> Octavia - I haven't bought a crib and a car seat for it yet, but it does have a name: Hal. It's named after the computer that tried to take over in "2001 Space Odyssey".
> 
> Thanks, you guys!!!


If you are a Dixie Chicks fan, Earl may be a good name as well!


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## adagio (Jun 25, 2012)

I'm not a fan, but I'm familiar with the song...GREAT NAME for it! Perhaps it will be Hal Earl...what a messed up name...

I just had a long talk with a friend who had a TT two years ago. We have the same surgeon. She listed all of the reasons why I'll be so happy to have this thing out, and how great life will be on the "other side"...she showed me her scar again, and was like, "Remember, it's the same surgeon..." (Hers looks GREAT!) I left feeling confident that I'm doing the right thing with this surgery... Seriously, friends like that are amazing. Same goes for all of you!


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## Octavia (Aug 1, 2011)

That is exactly what you needed to see and hear from someone who truly knows you! A good friend, indeed!


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## adagio (Jun 25, 2012)

She truly is!!! I love her!!! She's been there for me through so many things... I am seriously one blessed chica!

On another note: The nodule is pulsating... I realize this is because it's hypervascular, and it's pulsating due to my own pulse, but either way, it's kinda cool (in a creepy "an alien is about to jump out of it" sort of way). I wish I could get a decent video of it. This is definitely blog-worthy... (About to give it another shot with the iPod...)


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## Octavia (Aug 1, 2011)

Mine pulsated, too. That's why it initially freaked me out. It was like, all of a sudden, this thing just burped up out of the front of my neck, and it was pulsating. I went to the ER because I had never noticed it before, and I suddenly had this visible "thing" sticking out, and I honestly thought it was my carotid artery about to burst (it was exactly where the carotid artery is located). Overreaction? Maybe... After waiting in the inner-city ER for 8 hours without seeing a doctor, I finally decided it was not going to kill me, so I left. Went to my regular doc the next day. She identified it as a thyroid nodule, sent me for an ultrasound, then to an ENT. The rest is history, and so is my thyroid.


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## adagio (Jun 25, 2012)

WOAH! That's definitely a much more interesting story! An 8-hour wait? Yikes...I'm glad you left!

I'm a bit more of a nerd...when I saw it really pulsating last night (it was after class), I pointed it out to a friend and said, "Hey, check this out!!!" I thought it was cool...NERD!!!

Uh...yeah...according to the US images, the nodule is pushing my carotid artery out of its way...such a pushy little beast...


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