# Post Partial Thyoidectomy tissue sent to Mayo, maybe cancer??? Path report ???'s



## Mrsatteberry (Aug 30, 2010)

Hello all! About a year ago I came down with "thyroiditis" and all my TSH, FT-3 and 4, reg T-3 and 4 would all always come back in the "normal" range. Had CT of neck on 6/9/10 that didn't show anything in thyroid, but did show noncalcified nodules in both lungs that my then-doc didn't think were "any reason for concern."

On 8/30/10 I had an ultrasound that showed "solid right 1.8 x 1.1 cm solid nodule mid-thyroid. Was finally sent to an endo who order nuclear scan. Had that 10/12/10 and showed no cold nodules, 6 hour uptake 7.3% and 24 hour uptake 7.2%. Radiologist blamed CT chest scan done 8/28/10 as cause for low uptake.

Endo put me on .25 mcg Synthroid to suppress growth. Symptoms continued to worsen so I had a partial thyroidectomy on 5/18/11. I'm now 3 weeks post op and new concern is the pathology that ended up being sent to Mayo Clinic for consultation. Today I was supposed to get results, but surgeon said it could be a couple more weeks...seriously?

I did get copy of initial pathology done post-op and here's what it says:

"Favor adenomatoid nodule pending consulation, see comment" and 
"Comment: I have some concerns of the nuclear features in this nodule as well as the appearance of a colloid. The background of the thyroid gland does not show nodular hyperplasia either (is this good or bad). This case will be sent to May for consultation as to whether or not this could represent a follicular variant of the papillary carcinoma. A follow up report will be provided upon receipt of the consultation."

So...I know papillary carcinoma is thyroid cancer...which I know is the easiest to treat with highest success rate, so that honestly doesn't scare me. But I've had so much problems with my lymph nodes swelling before and after surgery that I wonder about it spreading, if it is cancer. And wouldn't other blood work show a higher WBC if I had cancer? Or does it not always show that way? Thanks in advance for your help translating this for me. I had already left doc's office by the time I realized the report was under my lab orders and knew I wouldn't get far by calling doc...as the standard answer is always, "I see no reason for concern, so don't worry." Easy for HIM to say...lol!


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> Hello all! About a year ago I came down with "thyroiditis" and all my TSH, FT-3 and 4, reg T-3 and 4 would all always come back in the "normal" range. Had CT of neck on 6/9/10 that didn't show anything in thyroid, but did show noncalcified nodules in both lungs that my then-doc didn't think were "any reason for concern."
> 
> On 8/30/10 I had an ultrasound that showed "solid right 1.8 x 1.1 cm solid nodule mid-thyroid. Was finally sent to an endo who order nuclear scan. Had that 10/12/10 and showed no cold nodules, 6 hour uptake 7.3% and 24 hour uptake 7.2%. Radiologist blamed CT chest scan done 8/28/10 as cause for low uptake.
> 
> ...


Hi there and I am so sorry for all this happening to you.

The pathologist seems to think the situation is very suspicious for cancer and your best bet is to talk to your surgeon, I am thinking.

Also, Have you had Thyroglobulin Ab run?

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419

If your lymphs are swollen, did they not Rx RAI in the aftermath of your surgery and why did they only take part of your thyroid? I am wondering.

God bless and welcome!


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## Mrsatteberry (Aug 30, 2010)

Andros said:


> Hi there and I am so sorry for all this happening to you.
> 
> The pathologist seems to think the situation is very suspicious for cancer and your best bet is to talk to your surgeon, I am thinking.
> 
> ...


Thank you for your response. The surgeon just keeps saying "don't worry, it should be ok." Well, I'm not necessarily "worried" I am just tired of waiting. I have never heard of Thyroglobulin Ab run. What is that? Lymphs were very swollen pre-surgery. They went down quite a bit after surgery, but now the swelling comes and goes (maybe due to my body trying to restabilize and adjust to it all?).

Doc has not said anything about RAI and was quick to raise my Synthroid dose post-op...something I know they make you stop for a bit if you are looking at getting RAI. Doc only took half because until they took that half out and tested it, there was no reason to suspect cancer or any other issues. Biopsy on nodule in 10/2011 came back benign and doc said during surgery, everything else "looked" fine as far as he could tell. Maybe this is why he seems to lack concern...while I know that my body has always been odd and my tests always come back normal when they shouldn't and vice versa.

I guess my one concern is that my old doc ran labs on me every 2-3 months starting 3 years ago...always saying my neck looked big and he wanted to check my thyroid, but labs would always come back in normal range. He was stumped and without more cause behind it, he couldn't justify sending me on to an endo at that time. No doc would believe I had thyroid issues until last year when all hell broke loose.


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> Thank you for your response. The surgeon just keeps saying "don't worry, it should be ok." Well, I'm not necessarily "worried" I am just tired of waiting. I have never heard of Thyroglobulin Ab run. What is that? Lymphs were very swollen pre-surgery. They went down quite a bit after surgery, but now the swelling comes and goes (maybe due to my body trying to restabilize and adjust to it all?).
> 
> Doc has not said anything about RAI and was quick to raise my Synthroid dose post-op...something I know they make you stop for a bit if you are looking at getting RAI. Doc only took half because until they took that half out and tested it, there was no reason to suspect cancer or any other issues. Biopsy on nodule in 10/2011 came back benign and doc said during surgery, everything else "looked" fine as far as he could tell. Maybe this is why he seems to lack concern...while I know that my body has always been odd and my tests always come back normal when they shouldn't and vice versa.
> 
> I guess my one concern is that my old doc ran labs on me every 2-3 months starting 3 years ago...always saying my neck looked big and he wanted to check my thyroid, but labs would always come back in normal range. He was stumped and without more cause behind it, he couldn't justify sending me on to an endo at that time. No doc would believe I had thyroid issues until last year when all hell broke loose.


Hopefully you have read the links I provided and now know the usefullness of running Thyroglobulin Antibody labs.

Tch; I think the best thing to do is wait until all the reports come back from Mayo.

It surely sounds like you have been through hell and back and I say you should be concerned.

If I had a dime for every doctor that has told me not to worry....................


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## lavender (Jul 13, 2010)

Wait, you had a CAT Scan on 8/28/10, and Radioactive Iodine Uptake and Scan on 10/12/10...and I'm suspecting it's the iodine injection in the CAT scan that was blamed for your low uptake result. The iodine should have been out of your system by then, but it's a shame they didn't test your iodine level before they did thousands of dollars worth of testing and had you ingest radioactive material!

When I was diagnosed with Graves last year, I had to wait to get my radioactive scan because the hospital had done a CAT scan when I was in thyroid storm. I think I had to wait a month, and then my endo ordered a lab to check my iodine level before he even sent me, and by that time my iodine levels were in the normal range again. Now the endo did say that with me being hyperthyroid, my body was processing iodine quickly. So, if you were hypothyroid, it's possible that you were processing iodine slowly, but I still think 6 weeks is a long time to blame the results on the CAT scan. Unfortunately, that's not something you can go back and change now.

And you sound a lot like me in having "normal" thyroid levels for years, even though it was obvious something was not right in your body, and just wacky test results. I too had to get to the really severe stage for someone to pay attention to my thyroid, which is a shame.

The problem is that thyroid issues wax and wane and it's hard to catch them at their worst in lab work. I have also learned that "normal" in labwork is a bit subjective because there is often a particular place in the "normal" range where we all feel our best. Unfortunately, docs don't really recognize that "normal" may not be optimal for us.

I don't know a lot about cancer since my situation was a bit different, but if they only did a partial thyroidectomy and find cancer, I am sure they will want to remove the rest. It's a shame they didn't take it all the first time. I have heard of others having to go back in to get the other half removed, and it doesn't sound pleasant.

I think sometimes docs don't tell us the full story because they don't want to worry us or think we can't understand, when for me, not knowing only makes things worse in my mind. As if telling someone not to worry actually makes them not worry! It does sound like you are in the waiting space right now. I think a second opinion on the pathology report is the best thing that could be happening right now, but that sure is a long time to wait!

Ramping up your synthroid right now is the bast thing they could do since suppressing your TSH is important to stop the growth of cancer, if that's what it is. It will also keep you from being miserably hypothyroid. Just remember that thyroid cancer is relatively easy to treat. Not to minimize any cancer. And even if it's not cancer, what you have already been through has been enough I am sure.

In the meantime, take good care of yourself, and I am saying a prayer that all turns out well for you.


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## Mrsatteberry (Aug 30, 2010)

Ok, I went back and looked up old labs from when this began. Lab results were (listed ref range in parentheses):

On 5/24/10:
Thyroxine T4 8.7 (4.8-13.9)
T3 uptake 32.0 (30.0-39.0
FTI 2.8 (1.4-4.5)

6/12/10:

Thyrogobulin AB <20 (<20)
Thyroid Perox. AB <10 (<35)
Thyroxine T4 9.2 (4.8-13.9)
TSH 0.23 (0.32-5.00) *Doc I had then said this was still normal despite being under ref range...shortly after, I got new (and better) doc

8/28/10: (at ER with chest pains I thought was a heart attack)

*No thyroid labs done, but showing abnormal results)

Potassium 3.4 (3.6-5.1)
Chloride 108 (98-107)

Finally saw an endo on 9/29/10 and he did extensive labs so not going to post all of them unless you ask, but main ones:

T4 free 1.57 (0.8-2.3)
T3 free 4.59 (2.2-5.8)
Potassium 4.1 (3.5-5.1)
Chloride 103 (98-107)
TSH .56 (0.4-4.0)
Thyrogobulin 31.5 (0-55; may be elevated in thyroiditis)
Thyrogobulin Antibody <20 (<40)
TPO <10 (neg <35; pos >35
Vit D 59.30 (23-113 w/ note stating optimal level 100-200)

At this appointment I was placed on the .25 mcg Synthroid and 5000 iu Vit D per day. Was told to come back in 3 months. When I did partial thyroidectomy was discussed. More labs done, but didn't get a copy, however, endo said I was at the higher end of normal for TSH so he couldn't up my dose (in hopes nodule would shrink). Told to come back in another 3 months (June 2011), but went back after 6 weeks due to extreme thyroiditis and referred to surgeon. The initial June appt. was kept to follow up post-op...that is tomorrow. Thanks again for all your help! I really do appreciate it.


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## Mrsatteberry (Aug 30, 2010)

As for the CT and Uptake/Scan, the possibility of too much radiation is why the scan was postponed for 6 weeks, making it 7.5 weeks between tests. I agree that this is possible, but wonder if it was originally dismissed by radiologist incorrectly, since post-op exam of thyroid tissue showed "cleared out nuclear form."

I have noticed the "waxing and waning"...I've compared it to my endocrine system being bipolar...ha ha! I do have some medical knowledge as I was in school for medical assisting. However, I found that if I didn't let on that I knew anything, docs were more likely to slip up and say something I understood that they didn't think I would. 

So far I'm loving my .125 mcg of Synthroid. I know a high rate of post-ops gain a lot of weight, but I've lost 10 lbs, my hair and nails are actually thick and growing, and my skin is not so dry and pale... I have color again!

The only downside to the Synthroid is that if I do have to have RAI, I've read that I'll have to be off it for a certain about of time before the RAI treatment. Don't know how long I have to wait to go back on it though. Fortunately, my employer is allowing me all the time I need and option to come back as I feel I can. My fibromyalgia complicates it though because I wear out so quickly since surgery.

Some people think I'm nuts, but I'm finding it easier to just assume it will come back as cancer and accepting that I'll have to have another surgery and treatment. I have complete faith that God knows what is happening and He will take care of me.


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## lavender (Jul 13, 2010)

I really think you have been swinging between hypo and hyper, or perhaps that you have been hyper all along. When you say bipolar, that's exactly how I felt before my surgery.

Here's why, on 6/12/10, your TSH shows you were hyper, yet your doc blew it off. Then you ended up in the hospital for hyper symptoms on 8/28. On 9/29, your labs don't look hypo at all, your TSH is really low, yet you were put on synthroid, which is counter-intuitive, and could be really dangerous if you were already hyper.

It's a shame you don't have the next set of lab work because the endo told you your TSH was on the high side of normal 3 months later, which is exactly opposite of where you were on all your previous tests, and generally docs who are trying to shrink a nodule like to keep TSH as low as possible.

The thing to remember with TSH is that it works opposite to your thyroid levels. Low TSH=hyperthyroid, High TSH=hypothyroid.

Do any of your other tests say TSI? I'm wondering, because that would be an indicator of Graves Disease, which could have caused symptoms despite your lab results.

What are your symptoms right now?


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## Mrsatteberry (Aug 30, 2010)

That makes a bit more sense to me since I originally showed symptoms of both hyper and hypo but found it completely impossible to lose weight...however, I wouldn't gain it either. The only way I was able to lose weight in the last year was with Phentermine, prescribed by the doc. Endo was proud today (as was I) after realizing I've lost 60 lbs since first seeing him 7 months ago. 

I had blood work done today, but won't get the results until next week. I might have that other set of labs around here somewhere and just didn't put them where they go. I'm using my time off work to get stuff more organized, so if I come across it, I'll post it too.

My current symptoms seem to be improvements, like the weight loss, my nails are finally growing and thicker, my hair is thicker and shinier, my mood is much happier and less negative. However, I get worn out very easily still. I can ride in a vehicle and sit at an event for 2 hours, go home, and pass out for 4 hours. As long as I stay mellow and don't over do it, I'm fine. The real test will be Saturday when I pick up a 5 hour shift.


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> As for the CT and Uptake/Scan, the possibility of too much radiation is why the scan was postponed for 6 weeks, making it 7.5 weeks between tests. I agree that this is possible, but wonder if it was originally dismissed by radiologist incorrectly, since post-op exam of thyroid tissue showed "cleared out nuclear form."
> 
> I have noticed the "waxing and waning"...I've compared it to my endocrine system being bipolar...ha ha! I do have some medical knowledge as I was in school for medical assisting. However, I found that if I didn't let on that I knew anything, docs were more likely to slip up and say something I understood that they didn't think I would.
> 
> ...


I am so glad that you are seeing improvements. And, you might ask your doctor about being put in T3 (Cytomel) only for the better part of the time you have to withdraw from the Synthroid. I think you can take the T3 up to about a week before the RAI if I am not mistaken. Check with your doctor about this. It should be a small dose (5 mcg.) just to get you through.

I share your faith big time!! We must trust in the Higher Power and do our part as well.

Also loved your analogy of bipolar because that is exactly what it feels like. Up and down, fast then slow, wax and wane etc..

And thank you for all those lab results and ranges.

Best of luck with that appt. today and please let us know when you feel like it.

Saying a prayer for you,


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## Mrsatteberry (Aug 30, 2010)

Also loved your analogy of bipolar because that is exactly what it feels like. Up and down, fast then slow, wax and wane etc..

And thank you for all those lab results and ranges.

Best of luck with that appt. today and please let us know when you feel like it.

Saying a prayer for you,








[/QUOTE]

Thanks and yes, I discussed the Cytomel with endo. He said I'd have to wait 6 weeks after surgery, if I have to have it removed, for the RAI, but he could give me the Cytomel for 4 of those, so I'd only have 2 weeks of feeling like crap. Then after RAI, could go back to the Synthroid.

As for the bipolar and other analogies, don't forget menopause-like! Lol! I am only 32 years old, so not ready for the real thing, but have some crazy emotional swings since surgery! I'm known for not being a crier...I was raised by a Marine, dammit!  It doesn't take much sometimes though and I'm fighting the tears. Not so bad when I'm at home, but in the store and in the car is a little embarrassing. Ha ha!


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> Also loved your analogy of bipolar because that is exactly what it feels like. Up and down, fast then slow, wax and wane etc..
> 
> And thank you for all those lab results and ranges.
> 
> ...


Thanks and yes, I discussed the Cytomel with endo. He said I'd have to wait 6 weeks after surgery, if I have to have it removed, for the RAI, but he could give me the Cytomel for 4 of those, so I'd only have 2 weeks of feeling like crap. Then after RAI, could go back to the Synthroid.

As for the bipolar and other analogies, don't forget menopause-like! Lol! I am only 32 years old, so not ready for the real thing, but have some crazy emotional swings since surgery! I'm known for not being a crier...I was raised by a Marine, dammit!  It doesn't take much sometimes though and I'm fighting the tears. Not so bad when I'm at home, but in the store and in the car is a little embarrassing. Ha ha![/QUOTE]

Even a Marine cries. It is a good emotional release. Hard on the eyes though. LOL!!

You may slip into menopause early. I did at 41; that was it, Fort Pitt. No regrets about that at all.


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## Mrsatteberry (Aug 30, 2010)

Well...I got tired of waiting and called the phone nurse today for the surgeon to see if they had my test results back yet. The nurse was all cheery and helpful the first time I talked to her. She looked around in various places, then said she'd call me back after she contacted the hospital where the surgery was done to see if they had it.

About 20 minutes later, she called back...not so cheery. As soon as I answered the phone, she said, "the doctor wants you to come in tomorrow." Noticing the change in her voice and demeanor I asked what time I should come. She told me to just come in at 3:45 pm...which didn't make me feel much better being as it's the last appointment time of the day.

I am prepared to hear that I have cancer and thyroid cancer itself does not scare me, but when I had the original CT of my thyroid last year, they didn't see anything in the thyroid, but did note I had nodules in the apex of each lung. The radiologist attributed it to something people in the West get from Rocky Mountain fever or something like that. However, I've not been in the West for 20 years and these spots have never showed up on x-rays or anything else before. So...guess I find out tomorrow and am praying that the "rabbit hole' doesn't get any deeper. It's already been a long way down.


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> Well...I got tired of waiting and called the phone nurse today for the surgeon to see if they had my test results back yet. The nurse was all cheery and helpful the first time I talked to her. She looked around in various places, then said she'd call me back after she contacted the hospital where the surgery was done to see if they had it.
> 
> About 20 minutes later, she called back...not so cheery. As soon as I answered the phone, she said, "the doctor wants you to come in tomorrow." Noticing the change in her voice and demeanor I asked what time I should come. She told me to just come in at 3:45 pm...which didn't make me feel much better being as it's the last appointment time of the day.
> 
> I am prepared to hear that I have cancer and thyroid cancer itself does not scare me, but when I had the original CT of my thyroid last year, they didn't see anything in the thyroid, but did note I had nodules in the apex of each lung. The radiologist attributed it to something people in the West get from Rocky Mountain fever or something like that. However, I've not been in the West for 20 years and these spots have never showed up on x-rays or anything else before. So...guess I find out tomorrow and am praying that the "rabbit hole' doesn't get any deeper. It's already been a long way down.


You know what? I am thinking it's a good thing you called. Looks like your paperwork got lost in the shuffle there and then she found it. Aaaaaaaaaaaaaaargh.

Well, I will be on tenterhooks here to find out what has taken place and I just want you to know that you are in my prayers.

I am sure others will be sending their own prayers, thoughts, karma, well wishes and what have you.


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## Mrsatteberry (Aug 30, 2010)

Thanks, Andros! Appreciate it! Hugs!


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> Thanks, Andros! Appreciate it! Hugs!


Hugs and much more to you!! We are here for you when needed!


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## Evernight74 (Jun 7, 2011)

Prayers and positve thoughts sent your way


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## Mrsatteberry (Aug 30, 2010)

Results are in and they are...well, not great. But since it's confirmed now, I started a new thread (and of course linked back to this one for those readers to reference). Thanks for all your love and support...I'm gonna need it! Here's the link.


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