# Wondering if anyone has heard of this?



## Camielle (Jul 25, 2012)

Hi everyone. I have been cruising the Thyroid Boards for a while before I signed up and I want to thank everyone (THANKS!!) for being such a supportive and informative community and so open. I need your help now. I don't have my labs from last week and this will be a bit long but this is beyond my research skills.

I was told that my hyperthyroidism is being caused by a nodule so big it was larger than the ultrasound probe. The largest portion of the goiter is 8cm and it is extending into my chest 'just a hair' according to my ENT. The last month or so has been the most attention my thyroid has seen. I was diagnosed with a small goiter and hyperthyroidism in high school in 2003. Now, the goiter is pushing my trachea and esophagus just slightly and I went to the ER 3 times in about a month. Finally after using a contrast ct they figured it out. So here is where I am. I have a new endo, and ENT for the first time and I have to have surgery. Now heres the 'I cant find this to read up on it' part. Apparently, there is a gigantic nodule on the left half of my thyroid that is so out of control that the Endo told me during my ultrasound that I would need the whole thing removed because the right side of my thyroid has shrunken smaller than normal size and won't be of any use.

I have been on PTU since my son was born - 2 years ago. I didnt know it was an antithyroid drug or that I should only take i for a year, but clearly it hasnt helped. My new endo has put me back on Methimazole (I was on that in 2003 along with Torprol) and Propanol. My heartbeat is under control for the first time in years, I'm hoping the methimazole will shrink the nodule enough to get it out of my chest but I was warned that I would likely have to spend the night at the hospital due to the size of the goiter which at its largest point is about 8 cm. I wish I had known earlier I could have had this taken care of especially since I am terrified of surgery, needles and anesthesia and I have had 3 c-sections.

I am due to get labs again in 3 weeks, have the endo check my levels and thyroid on Aug 23rd to see if I can have the surgery or have to stay on the Methimazole another month and try for surgery in September (which I don't want because my sons 2nd birthday party is end of September) As soon as I recieve them I will post my labs but anything encouraging or informative would be so greatly appreciated. I have never heard that the other half of a thyroid could shrink so small... And Im worried about being put under and having no voice with 3 kids.

I promise to be thankful and encouraging in return to others. Thank you so much agin:scared0015:


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## Andros (Aug 26, 2009)

Camielle said:


> Hi everyone. I have been cruising the Thyroid Boards for a while before I signed up and I want to thank everyone (THANKS!!) for being such a supportive and informative community and so open. I need your help now. I don't have my labs from last week and this will be a bit long but this is beyond my research skills.
> 
> I was told that my hyperthyroidism is being caused by a nodule so big it was larger than the ultrasound probe. The largest portion of the goiter is 8cm and it is extending into my chest 'just a hair' according to my ENT. The last month or so has been the most attention my thyroid has seen. I was diagnosed with a small goiter and hyperthyroidism in high school in 2003. Now, the goiter is pushing my trachea and esophagus just slightly and I went to the ER 3 times in about a month. Finally after using a contrast ct they figured it out. So here is where I am. I have a new endo, and ENT for the first time and I have to have surgery. Now heres the 'I cant find this to read up on it' part. Apparently, there is a gigantic nodule on the left half of my thyroid that is so out of control that the Endo told me during my ultrasound that I would need the whole thing removed because the right side of my thyroid has shrunken smaller than normal size and won't be of any use.
> 
> ...


Aw; Camielle! You have been suffering for a long time. No doctor has offered you RAI or surgical ablation previously??? They just kept on Rx'ing your prescription? Goodness!

The present is what we have to deal with so what has to transpire is that they have to get your FREE T3 and FREE T4 down and your TSH up a bit before they can do surgery.

Sounds like the goiter is starting to be substernal so no doubt you will be kept overnight for safety's sake. Hope you have someone to help w/your children when this all takes place!

We are all so glad you have joined us but very sorry for the reason. You already know that we have a great group of posters and mods and your presence can only add to that.

Many have had this surgery and I now they will be along to help and comfort your fears and answer any questions you may have.


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## joplin1975 (Jul 21, 2011)

I think, regardless of the size of the other half of the thyroid, with a nodule that large and extending down as far as it does, you'll want the entire thyroid out and as soon as you are stable enough to have it done.

Most of us had to stay the night after surgery. Yes, there are 101 thing I would have rather had done, but it's not an awful procedure. I bet you'll feel 100 times better after surgery.


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## CA-Lynn (Apr 29, 2010)

Maybe one of you knows the answer to this......if the nodule is larger than the scope, do they break down the nodule and bring it up through the scope piece by piece?

I recently had my gallbladder removed and one of the gallstones was so large that the surgeon had to "crush it" and break it apart so he could get it all laparascopically....otherwise he would have to do a 6" incision.


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## Camielle (Jul 25, 2012)

I keep hoping for the 'arrive, ugly gown, pass out, wake up better' scenario mentioned quite a few times on the site, lol. But I am worried that if the ENT is not able to pull the thyroid out as he suggested and that he may have to cut he bone is the recovery and risk during surgery. I hear bones are a lot more painful to heal and take a lot longer. I am not so much worried about the scar as I am just waking up afterwards and being able to deal with the pain.


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## joplin1975 (Jul 21, 2011)

There are one or two posters who had laproscopic but most of us have had the traditional method...we've been opened. I think in your case you might want that (well, want isn't the exact word I'm going for here!) so they can look at your lymph nodes etc.

Edited to add I had a TT with a central neck dissection and my scar is ~ 2 inches wide and barely visible.


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## jenny v (May 6, 2012)

There's also someone here recently who had their thyroid removed and it had grown down below her clavicle. Hopefully, she'll be along in here soon with her comments, but I seem to recall that her surgery went pretty smoothly.


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## Camielle (Jul 25, 2012)

I got a call from my Endo yesterday afternoon saying they received my labs back and to adjust my Methimazole from 30mg to 20mg a day. I hope this is a good sign? I'm ready to get this bugger out. I'm still nervous as all heck but I don't like feeling the goiter inside my throat. Its bugging me. I'm still scared but I'm holding onto waking up and not feeling a lump in my throat when I breathe. Now if I can only get the surgery scheduled. Does the drop in daily Methimazole possibly mean that my levels could adjust enough for me to have the surgery at the end of this month? As soon as I get them I will post them, but in all likelihood I will be posting both the labs from 2 weeks ago and the labs I will take the week before my endo appointment on the 23rd.


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## Andros (Aug 26, 2009)

Camielle said:


> I got a call from my Endo yesterday afternoon saying they received my labs back and to adjust my Methimazole from 30mg to 20mg a day. I hope this is a good sign? I'm ready to get this bugger out. I'm still nervous as all heck but I don't like feeling the goiter inside my throat. Its bugging me. I'm still scared but I'm holding onto waking up and not feeling a lump in my throat when I breathe. Now if I can only get the surgery scheduled. Does the drop in daily Methimazole possibly mean that my levels could adjust enough for me to have the surgery at the end of this month? As soon as I get them I will post them, but in all likelihood I will be posting both the labs from 2 weeks ago and the labs I will take the week before my endo appointment on the 23rd.


Yes; it could mean that and I hope so. It is just better to get this over with instead of having so much time to angst over it. I hate that. If I have to do something unpleasant, I just "git 'er dun" in a heartbeat. Done is done!

Let us know when you get your labs and also when your surgery is scheduled.


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## Camielle (Jul 25, 2012)

I found my pathology report from my FNA but am not certain which portion to post. According to the report though it says the goiter is 4.1 x 4.6 x 7.0 
Is there a big deal in the way that the numbers are listed? Also this was a month ago.


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## joplin1975 (Jul 21, 2011)

Camielle said:


> I found my pathology report from my FNA but am not certain which portion to post. According to the report though it says the goiter is 4.1 x 4.6 x 7.0
> Is there a big deal in the way that the numbers are listed? Also this was a month ago.


Not really. I'd be less interested in the numbers and more interested in seeing what kind of cells the found.


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## Andros (Aug 26, 2009)

joplin1975 said:


> Not really. I'd be less interested in the numbers and more interested in seeing what kind of cells the found.


Ditto that!


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## Camielle (Jul 25, 2012)

Okay. They only tested the left side of my thyroid, the Endo said its a nodule and here is the microscopic description:
The sample is moderately cellular. The cells are small, bland follicular cells, with oval-to-round nuclei and a moderate amount of cytoplasm. They are organized in sheets and orderly follicles. There is no nuclear overlap, no intranuclear inclusions and no scalloping. There is scant thick colloid, as well as some blood. A few cytoplasmic flames, to suggest hyperthyroid state, are noted. 
Comments: The clinical and cytologic findings are more consistent with adenomatoid nodule. Reccomend clinical and radiological correlation and follow up as clinically indicated.

(I have no idea what any of that means. Here is what I understood. She showed me the slides and purple stain and it looked pretty but thats all I got. I did understand the following: negative for malignant cells, sort of, but wonder why they didn't test the right side, not that I want to go through that again.)

Preliminary Diagnosis: Negative for malignant cells. Cytologic findings consistent with adenomatoid follicular nodule. Final diagnosis pending processing.


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## Camielle (Jul 25, 2012)

I got my lab results yay! Please tell me what to post.

Also the Endo said that my free levels were within normal range but that the hormone that responds to how much thyroid hormone is in your system is still low as if I am hyperthyroid. She decreased the amount of propanolol and methimazole again so I do not become hypothyroid and suggested that I continue for four more full weeks, see her in five and I should be cleared for surgery in six. Nervous and Happy!


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## I DClaire (Jul 31, 2011)

My thyroid was three times bigger than normal and the surgeon said it was filled with cysts and nodules but my incision was very small and 9 months later I doubt anyone notices it. I'd been seeing an EN&T specialist because I had trouble swallowing and the surgeon later said he didn't see how I could breathe, much less swallow!

Things will probably be a little more nerve wracking for you because you're responsible for little children. I hope you'll have someone to help you for awhile. I was never in a lot of pain but I didn't have much energy or stamina and I had trouble focusing/concentrating. I can't remember but I wouldn't think you'll be able to lift anything much for awhile.

Good luck! One of my neighbors was putting on moisturizer when she found her "nodule" - it was the size of a golf ball!


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## Camielle (Jul 25, 2012)

Just a quick update:

I was supposed to have had the surgery a week ago, but they canceled it saying that based on my blood work, my thyroid or rather the enlarged left side, has begun acting up again, and they have increased my methimazole to 40mg a day, 2pills in the morning, 2 at night. My PCP told me to decrease my propanol, but then my Endo told me to go back to where it was. I have an appointment next Friday with the Endo, and the following Friday with my surgeon. He seemed a bit disappointed that he didn't get to perform the surgery though lol. Just a quick question - My endocrinologist has said that if the higher dose works out, I may be able to have the surgery by the holidays or in January. If it does not, what are my other options to get to optimum range to have it removed? RAI? Would RAI even shrink it enough to be comfortable? It has actually gotten much better. Still visible but not constantly uncomfortable though the goiter is still rather large.


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## DonnaK (Mar 22, 2011)

Geez, I'm sorry you are having to wait again. It must have been horrible being all psyched and ready for surgery just to have it cancelled. I know it was such an anxiety filled time for me before and once I was on my way I was fine. I would have hated to go through a cancellation.

My thyroid had grown down below my clavicle and was strangling my esophagus. At that point I was pretty much only able to eat mashed potatoes and soup. The surgery was super easy and six months later you can barely notice my scar. Actually, both my endo and gastro have commented on what a beautiful job the ENT did on the cut. The only leftovers I still have are funny sensations from all the nerves across my neck being cut for the surgery. It still feels weird there, but gets better as time passes. My labs were all pretty much in the normal range though, or slightly hyper when I had surgery. Prior to surgery I would swing back and forth. Nothing was ever mentioned to me about my labs having to be in a certain range in order to have the surgery though so I am confused on that part. Do they not want to do surgery if someone's TSH is too low or too high?


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## DonnaK (Mar 22, 2011)

Oh and I forgot to add that if I were in your shoes, I would get the whole thing removed and not just the left side. Initially, they wanted to take my right side and not the left as it had a large nodule that came back inconclusive. I put it off a year and that is when the left side went crazy, but the ENT said the nodule on the right had all but disappeared and we could leave that side if I wanted to. I told him no way! I definitely didn't want to be back in a year with that side going nuts and I figured it was easier to control the medication with no thyroid than with half a thyroid that could produce more or less any time it decides making it necessary to keep adjusting my meds up and down.


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## Andros (Aug 26, 2009)

Camielle said:


> Just a quick update:
> 
> I was supposed to have had the surgery a week ago, but they canceled it saying that based on my blood work, my thyroid or rather the enlarged left side, has begun acting up again, and they have increased my methimazole to 40mg a day, 2pills in the morning, 2 at night. My PCP told me to decrease my propanol, but then my Endo told me to go back to where it was. I have an appointment next Friday with the Endo, and the following Friday with my surgeon. He seemed a bit disappointed that he didn't get to perform the surgery though lol. Just a quick question - My endocrinologist has said that if the higher dose works out, I may be able to have the surgery by the holidays or in January. If it does not, what are my other options to get to optimum range to have it removed? RAI? Would RAI even shrink it enough to be comfortable? It has actually gotten much better. Still visible but not constantly uncomfortable though the goiter is still rather large.


I don't think RAI is a viable option to be honest w/you! The reason you have to get this under control is you could have thyrotoxicosis during surgery which could be life-threatening and I believe the same concern would apply to RAI at this time.

Also, I know you agree; we need to be sure you don't have cancer. You would never know if you have RAI and in addition to that, with such an advanced case, one RAI may not do it. I had to have RAI 3 times; believe that or not. You don't want to go through that. I know you don't!


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## Camielle (Jul 25, 2012)

The FNA came back negative for malignant cells when they tested the nodule, but the surgeon did say he'll check it out when they do the surgery. And you're both right, I don't want to have to do the surgery twice and I know that having the right range would mean I wont have a thyroid storm during surgery because that would be horrible. I did not know however that could happen with RAI. I don't want to do RAI if I can help it honestly especially with kids. So I don't know, what if the levels won't normalize, will they keep upping the dose? Not really comfy with that either.


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## Andros (Aug 26, 2009)

Camielle said:


> The FNA came back negative for malignant cells when they tested the nodule, but the surgeon did say he'll check it out when they do the surgery. And you're both right, I don't want to have to do the surgery twice and I know that having the right range would mean I wont have a thyroid storm during surgery because that would be horrible. I did not know however that could happen with RAI. I don't want to do RAI if I can help it honestly especially with kids. So I don't know, what if the levels won't normalize, will they keep upping the dose? Not really comfy with that either.


Yes; I had RAI and had a storm. True story. Take it one day at a time here.


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## Camielle (Jul 25, 2012)

Okay, sorry the update is late, having some issues with my computer, lol. Okay so my blood test came back saying that my thyroid levels were gain normalizing though my free tsh levels were not quite where my Endo wanted them. She told me to stay on the higher does for 3 more weeks, as they also checked my liver and kidneys to make certain the high does wasn't causing any issues. After 3 weeks she wants me to have my blood drawn again, then she will call me with the results and determine if I can drop the dose from 40 mg to 30 a day for another month and then we can talk about surgery. So at this point, I may not be able to have the surgery until some time in January. I am really hoping that they normalize and everything because this is a bit nerve wracking, every time I worry a bit, it starts to feel like my throat is full again. Thank you guys for listening!


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