# Just curious, if you had PTC & Hashi's? I have a few questions...



## susieintexas (Mar 4, 2012)

If you have Hashi's and PTC...

Did you have any issues with extra scar tissue?

Did you voice get worse or better the further out of surgery?

Did you know you had Hashi's before you found out about the PTC?

Do you have any other autoimmune issues?


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## joplin1975 (Jul 21, 2011)

Did you have any issues with extra scar tissue?
No.

Did you voice get worse or better the further out of surgery?
My voice was never an issue. I yelled at my dog two days after surgery and that was the only time it felt week. Other than that, it is and has been normal.

Did you know you had Hashi's before you found out about the PTC?
It was suspected based upon the TPO, but I did not have a confirmation until pathology came back after surgery.

Do you have any other autoimmune issues?
Outside of allergies (environmental, mostly), no.

Hope you are doing well, Susie!


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## susieintexas (Mar 4, 2012)

I am ok. My voice is getting worse on its own which worries me some. Hence all of the questions.


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## Octavia (Aug 1, 2011)

Susie, that would worry me some, too. I know you saw some wonderful specialists at MD Anderson...but I do wonder if you might also benefit from seeing a super-duper high-caliber voice specialist physician. Was that type of physician with the team who saw you at Anderson? If not, I wonder if seeing one would help...


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## susieintexas (Mar 4, 2012)

I did not see the vocal cord team last time but they are on my schedule for this time (in June). Last time I saw the endo oncology team and the endocrine surgery team. For June I will see the endo oncology team and the vocal cord team, of course the endo surgery team will be added if the endo oncologist thinks it is time for surgery.


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## Octavia (Aug 1, 2011)

Oh, that's good. Happy to hear that.

And I was thinking about this the other day...I remember you saying that Anderson did NOT recommend a round of RAI for you, but I can't remember why. It made sense when you explained it the first time, but now I've forgotten. (I suppose I could fish through some old threads...)


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## joplin1975 (Jul 21, 2011)

Octavia said:


> Oh, that's good. Happy to hear that.
> 
> And I was thinking about this the other day...I remember you saying that Anderson did NOT recommend a round of RAI for you, but I can't remember why. It made sense when you explained it the first time, but now I've forgotten. (I suppose I could fish through some old threads...)


I was actually just reading an article the other day (I'll see if I can find it) that was talking about how positive lymph nodes and some other neck tissues don't absorb the radioiodine as readily as your "normal" thyroid tissue. It still works, but the efficacy isn't as great. So they recommended surgery for any recurrences (provided the area was well defined)...which I found interesting because I thought the fist line of defense was another round of RAI. *shrug*


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## Octavia (Aug 1, 2011)

Interesting...


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## susieintexas (Mar 4, 2012)

Originally no RAI because the tumors were small, less than 1cm each and the lymphs that were removed were all clear.

I was told the same thing as Joplin but they also included distant metastasis (specifically the kidneys and lungs) as for surgery being the treatment when I asked about my kidneys specifically as my Cal was 30(3 times normal) coming out of the kidneys.

Now when the tumor came back I had small amounts of T99, 123 & 131. The endo oncology team said the best treatment for this is surgery because they are still not 100% what we are dealing with.

I have high PTH & high Cal which would say I have a parathyroid growth but nothing showed up in the sestimibi (spell?) scan. My original surgeon was clip happy which makes some of the scans not work because all of the little metal clips work like artifacts making the scans hard to read/see. They can only see the bed tumor on sono because the bed glo ws on the CT because of all of the clips. They are not as concerned with the bed tumor at this point but the lymph was of moderate concern. They had me scheduled for a biopsy(to find out what we were dealing with) but it was canceled(right before they did it) because of the scar tissue issue because of the Hashi's. I have a lot of scar tissue in the area which has already paralyzed the left vocal cord so doing the biopsy on the right could have caused damage to the right which we want to avoid until we can't avoid it.


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## joplin1975 (Jul 21, 2011)

Susie, I'm just curious...what are clips? I've not heard that term used before with regard to thyroid surgery.


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## Octavia (Aug 1, 2011)

I'm not familiar with clips, either.

Your case could make a good argument for RAI, even for smaller tumors. This stinks.

But to attempt to answer at least one of your original questions... I do not have Hashi's, so I don't know how relevant my experience is to what you are trying to find out, but I would say that my voice is possibly getting a little bit worse over time. For me, I think it's not the voice itself, but the muscles/tissues that make the voice work. I don't know... I don't know the science behind it. I just know that my voice works well, it just hurts to talk, if that makes sense.


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## susieintexas (Mar 4, 2012)

They use clips during a thyroidectomy to cut off blood supply. Normally, you might have 2-5. Like this (from goggle)









Here is mine...









and an enlargement...


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## susieintexas (Mar 4, 2012)

Oh and according to my surgical notes I have 4. lol


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## joplin1975 (Jul 21, 2011)

Whoa...that's wild! My surgeon said something about tying off the blood supply, but I guess I thought of it literally...as in tying off the veins, etc. I had no idea!

And, holy cow, that looks like someone spilled rice in your neck! I have to think part of the issues with your voice might be more related to your surgeon, um, unconventional methods and maybe not Hashi's?


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## Octavia (Aug 1, 2011)

Wow...I was thinking the same thing, joplin...like something was just spilled in there and not cleaned up. Yikes. And those just stay in there forever?


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## susieintexas (Mar 4, 2012)

I asked about it in Houston and supposedly because they are made of titanium they should not attract scar tissue/ promote its growth. But I also believe everyone's body works differently and just because my body shouldn't react a certain way to a foreign body doesn't mean that is how it will.

The endo onc team acted like it was no big deal other than clouding the vision of the thyroid bed in the CT.


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## susieintexas (Mar 4, 2012)

Oh and yes, they stay in there forever.


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