# Need Some Outside Thoughts & Opinions



## jenny v (May 6, 2012)

Some quick background, I have Hashi's and for the last almost two years my levels have been bouncing around from hypo to hyper and everywhere in between. On paper, they don't look horribly awful, but it is wearing me out all the same and I can't seem to get stable for more than a few months at a time.

Since April, I've have a weird issue of feeling like I have a golf ball stuck in the base of my throat and I randomly choke on food. And now when I take a gulp of water it feels like it drains down my throat normally and then hits the area where the golf ball is, stops and then trickles slowly down.

I saw a new ENT last week who ordered an ultrasound and called with the results today. He is mailing me the report, but he said on the phone that the left side of my thyroid has swelled up and the lymph nodes below that side are slightly swollen (although not horribly). The right side is a relatively normal size and the whole thyroid is covered in very tiny nodules (which he said is typical to Hashi's).

Here's my issue and where I need opinions--the ENT said there is nothing on the report that screams "danger, remove the thyroid immediately!", but it also doesn't look normal, either. He is open to removing it because it's now causing compression issues (and because I can't get stable), but he said it's up to me. I've left a message with my endo to get her input, but what would those of you here consider doing?

Any input welcome! I feel like I need to consider all angles from everywhere before I make a decision.


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## Lovlkn (Dec 20, 2009)

> He is open to removing it because it's now causing compression issues (and because I can't get stable), but he said it's up to me.


This along with your instability is reason enough for thyroid removal.

I held onto my diseased thyroid too long - I never could stabilize until it was removed.

How long do you want to deal with the instability and choking feeling?


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## jackpot13 (Jul 10, 2011)

Wow! Finally someone with the same thoughts as me. I have been dealing with this for 3 years. I to have hashimotos and fluctuate between hypo and hyper but I have never been treated because of a few episodes of a-fib. I am not choking yet but do sometimes feel like I feel my food going down more than I should (if that makes sense). I also have been getting hoarse for the past 2-3 months. Oh ya and neck pain and headaches. You can actually see my goiter sticking out of my neck. I am seeing my endo next week and going to ask about removal. I'm just tired of it all! Good luck!


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## Exiledmoths (Aug 22, 2013)

I would remove it. There is no way to stabilize with treatment when you hormones are going up and down. I would have it removed and deal with the battle of figuring out the right medicine doses and then have a normalish happy life. Theres no point in dragging out your illness. I also understand what you were saying about the water. The same thing happens to me. Also little pieces of food after I swallow the majority of my bite gets stuck and makes me choke. As if it is sitting on top of the swelling. I constantly chew gum or suck on cough drops or hard candy because the moisture seems to lubricate and make it less annoying.


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## joplin1975 (Jul 21, 2011)

Well, as much as I appreciate the idea that no danger signals means, perhaps, you shouldn't rush into things...but I think there's a real quality of life issue here that you need to deal with.

I say this so often and I really don't mean to be repetitive, but, I genuinely do feel like I'm about ten years younger now that my thyroid is removed. I get angry that I didn't attend to these issues earlier and I'd really hate to think there is someone else out there who would be "losing" it on good years of their life, just because cancer wasn't readily apparent.


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## Andros (Aug 26, 2009)

jenny v said:


> Some quick background, I have Hashi's and for the last almost two years my levels have been bouncing around from hypo to hyper and everywhere in between. On paper, they don't look horribly awful, but it is wearing me out all the same and I can't seem to get stable for more than a few months at a time.
> 
> Since April, I've have a weird issue of feeling like I have a golf ball stuck in the base of my throat and I randomly choke on food. And now when I take a gulp of water it feels like it drains down my throat normally and then hits the area where the golf ball is, stops and then trickles slowly down.
> 
> ...


Definitely out. These things always get worse; never better! Alas!!! If it keeps on growing, surgery could be complicated.

And that is also why you cannot stabilize on thyroxine replacement.

Humble opinion!


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## jenny v (May 6, 2012)

A big :hugs: to this board!

I think I know in my heart my thyroid needs to come out, I just need a little push to accept it. I'm one of those people who over analyzes everything and tries to think through every possible scenario, so it's been a little hard to make a decision. I almost wish they had found something that gave me no choice so I didn't have to make this decision! It's a little like trying to decide between the devil I know (my thyroid and it's ups and downs) and the devil I don't (not having my thyroid).

I've talked to two people I know who have had TT's (one due to cancer and one due to Hashi's that ended up having cancer) and I'm also going to talk to my dad (an anesthesiologist) and my endo, to get their thoughts. Both of my TT friends say get it out, though.


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## Andros (Aug 26, 2009)

jenny v said:


> A big :hugs: to this board!
> 
> I think I know in my heart my thyroid needs to come out, I just need a little push to accept it. I'm one of those people who over analyzes everything and tries to think through every possible scenario, so it's been a little hard to make a decision. I almost wish they had found something that gave me no choice so I didn't have to make this decision! It's a little like trying to decide between the devil I know (my thyroid and it's ups and downs) and the devil I don't (not having my thyroid).
> 
> I've talked to two people I know who have had TT's (one due to cancer and one due to Hashi's that ended up having cancer) and I'm also going to talk to my dad (an anesthesiologist) and my endo, to get their thoughts. Both of my TT friends say get it out, though.


Also, when it comes out, it will be sent straight to pathology. Many I know over the years were shocked to learn that the pathologist did find cancer.

So, to sum it up, when you get it out, you will no longer have to worry about that and your thyroxine replacement should do wonders. Now if that doesn't happen with your thyroxine replacement, you know you can count on us to guide you through.

It's just a matter of finding the right dose for you.


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## jenny v (May 6, 2012)

It's been a fast moving 24 hours on my thyroid front!

My endo called me back yesterday after she had a chance to review the ultrasound report from the ENT and although she would prefer I still try to regulate things with medication, she understands my frustration (I pitched a little bit of a fit on the phone!) and has made me a referral to the endocrine surgeon on staff at her hospital. They are supposed to call and set up an appointment with me and then I guess I will have to decide if I want to go with them or with my ENT for surgery.

Two days ago I didn't even know if I wanted surgery and now I've got surgeons coming out of my ears, LOL!


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## bigfoot (May 13, 2011)

Excellent news! I think you are making the right decision. Granted, I say this as someone who hasn't had a TT themselves. However, if the option ever presents itself, I'll be all over it in a New York minute.

Dealing with thyroid hormone fluctuations (heck, any hormones, really) is a bear. The quicker you can get stabilized and straightened out, the better your quality of life will be.

hugs4


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## surge (Aug 15, 2012)

Lovlkn said:


> This along with your instability is reason enough for thyroid removal.
> 
> I held onto my diseased thyroid too long - I never could stabilize until it was removed.
> 
> How long do you want to deal with the instability and choking feeling?


I'll echo Lovlkn here. I'm not exactly stable yet (9 months post op) but I'm much closer to stable than I was in the 2 years before. The thing is that even without the thyroid, you still have an autoimmune disorder, which means there might also be attendant issues with adrenals, gluten sensitivity, other hormone imbalances that take awhile to work out.

But my numbers never really matched how I felt until post-surgery and then suddenly, I could start predicting what the blood draw might say...

I had my thyroid removed because of all the nodules (and b/c I was miserable and we thought it might help). It hasn't been perfect without the 'roid, but it has been more predictable. And I sleep a lot better (I was downing some serious ambien people).

If you opt for surgery, it'll help with the choking and ideally, it gets easier to medicate. The surgery itself is pretty quick, low pain (I had a very sore throat from the camera they stuck down my throat along with the breathing tube. That was the worst part). I'd just caution against the sentiment that you'll be feeling perfect 1-3 months out...it might take longer.


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## jenny v (May 6, 2012)

Thanks for the input, surge!

I will admit, now that I know my thyroid is coming out, I do find myself wondering how many of my symptoms will go away and which ones will stick around (maybe because they aren't thyroid related, like I tend to think of all of my symptoms!). I'm fully expecting it to take 9 months or longer to get my meds dialed in correctly, just because my body seems to take a while to regulate. I'm hoping at this point next year I feel much better than I do now. At the very least, I know the swollen neck and issues with swallowing will be resolved since the little bugger will be out. I'll take those small victories!


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## surge (Aug 15, 2012)

It is the little victories, you're right. I hope it's an easy transition once you're post surgery.

I do think that it's nice not to have to worry about what is going on with the thyroid. The answer is always, "nothing." and then the question is really just about meds: the right dose, the right combo. The only bummer is the 6-8 weeks sometimes, that's a looooong time. Slow and steady though "wins" (and by wins, I mean makes life more manageable) Keep us updated!


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