Update...why cant I have normal thyca??

[imedicmommy]

Had labs redrawn yesterday. TSH is now 5.3 and we are 7 weeks postTT with no meds.They still don't think doing a scan to see if there would be anything surgical is indicated. The only thing they keep telling me is that they think there is enough microscopic tissue to be producing enough hormone to bring my TSH down. So the plan is now to do a lower dose RAI in 3 weeks and then do it again in 6 months with the hope that we will get all the tissue by the 2nd dose. She said the dose that they would have to give me at this point, if they just did one, would make me sick. She also said the oncologist and the endo have been talking and reading about this and they both still think this is the way to go.
My frustration level is much lower than it was 2 days ago but I'm still wondering why if I MUST have cancer, why can't it be a normal thyca. Between the 2 ectopic tissues they found and now this, they told me I'm going to wind up in a medical journal somewhere. But on the other hand if my TSH is really that low maybe now I'll start feeling better. I'm half convinced my symptoms were psychosomatic. You know they told me I'd feel awful, so I did.

[imedicmommy]

I don't know how that would work but one of the guys that was listed was part of a study for that recombinant human tsh, which it sounds like I might benefit from so I will call them today and see what they say. Whats the worst they can say....No....well I've certainly heard that before!

[ChitChatNine]

JoBa:  Let us know on your final results .. waiting here with you!!!

Imedic:  Great idea to seek out the specialists of the specialists .......certainly worth a thought for a comprehensive opinion given yours is so rare ????  will they review the records if you mail them and do so for a fee?

Cheryl

[imedicmommy]

ignore me, I was thinking of something else completely. brain fog is definitely present. I think asking for a second opinion isn't unreasonable especially with an unusual presentation.

[JoBa]

DeeDee Gold ~I have no idea how to interpret pathology reports.  That's a question for an MD, which I am not.  I am actually on pins and needles waiting for my final path report.  My FNA was suspicious, but the frozen section was benign. I guess it could go either way now. And since they left the other half of the thyroid, that most likely means another surgery (and the nodule on the other side is close to a nerve). The waiting and not knowing is what is hardest.

imedicmommy ~ It's good that you are looking into the options. My insurance company kind of dictates what I can or cannot do on my own. I am in Minnesota, so would probably go to the Mayo Clinic, assuming my Dr. agreed to refer me. That's what's kind of tricky, asking for a referral without making it seem that you don't trust your doctor, because that relationship is important. I don't know if your docs have mentioned enlisting assistance from an expert, but it's something to explore with them.

[DeeDee Gold]

They said they had an adequate for cytologic diagnosis.  I thought it meant inconclusive.  The doctor suggests my thyroid be removed to be on the safe side.

[imedicmommy]

This is a suspicous result. They may not have had enough of a good sample be absolutely certain but I would follow up with your doctor.

[DeeDee Gold]

Maybe you all can give me some advise.
I had a fine needle aspiration and the results were as follows:
The differential diagnosis between a hyperplastic nodule and a follicular neoplasm can not be made with certainty.  Cellular evidence of follicular lesion.

Does this mean a non-diagnostic result or a suspicious result?

[imedicmommy]

Unfortunately, I'm fairly new to this myself. I thought I was armed with a lot of good information from everyone here as to what to expect, but then things turn out so oddly. I've looked on the johns hopkins website and they have these dr.s that are supposed to be thyca specialists versus just a regular oncologist. I've thought about contacting one of them for an opinion but the closest to me would be chicago or kentucky (both about 6 hours away) Just a thought rolling around.

[JoBa]

Everyone's cancer is different in one way or another, even though it may not seem that way. I think hearing about the unique ones, while not comforting to you, is very valuable to myself and others, even if we can't help much (I assume you have posted to the Dr forum). I remember reading your previous posts and noting that it was different from what others experienced. So it is now good to hear what the plans for the follow-up will be. It sounds encouraging to me, but I'm new to this.

My advice, for what it's worth,  would just be to make sure that they are following up on you and you don't fall through the cracks.  And if you feel that they are missing something, or not being aggressive enough, you should not hesitate to get another opinion. I have had to pressure my Dr into a referral on more than one occasion, and after multiple visits, and it turned out to be a good thing that I did (once for a nasal neoplasm and once for what turned out to be skin cancer.) You are the best advocate for your own health.

[redhed87]

I can't believe that your tsh is not higher!   Mine was about 50 four weeks post tt without meds.  Hmmmm.........it does suck having to do RAI twice.  I wonder why it is so low.

[zaksmom]

If your TSH is 5.3, you probably do have symptoms of hypothyroid (which is no fun).  I have every symptom of hypothyroid, but it's like my thyroid flares up -- and down -- which is causing my blood work to come out at a "normal" level --- I still feel it though!

I'm sure it is a pain in the butt to have to have 2 doses of RAI, but the lower dose would probably be good, so you don't get sick from it.  Not totally a bad thing to be in a medical journal!  Maybe they'll be so curious about you that you will get full attention!

betsy