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Old 03-07-2011, 04:24 PM   #1246
mrsklamc
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Christine, the endo said they would test my TSH again as well as my free T4. The free T4 is a new one on me.
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Old 03-08-2011, 05:30 AM   #1247
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Christine, the endo said they would test my TSH again as well as my free T4. The free T4 is a new one on me.
That's good. I always get my Free T4 done. Sometimes the TSH can be too high or too low and the Free T4 will give a better picture. I always have it done with my TSH because the TSH doesn't tell all (but it tells mainly everything!).
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Old 03-08-2011, 11:20 AM   #1248
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During my well woman exam at the gym my Dr. felt what he called a "sizable" nodule on my thyroid. I had an ultrasound the next day and I just got a phone call with the results. They said I have a 2 cm nodule on my isthmus (it's slightly visible from the outside and you can defintately feel it), one on the right thyroid, one on the left and they said I had one on the left lobe (I'm wondering if this means I have 4 nodule or if she just repeated herself on the left one). They are faxing my info to an endo. and I have to wait for a phone call to make an appt. Gyno office said I will likely need a thyroid scan and fine need biopsy. I had bloodwork done as well but it's not in yet.

What can I expect from these test and how worried should I be?! What does this all mean for me? Does it mean I definately have hypo or hyper thyroidism?
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Old 03-08-2011, 11:23 AM   #1249
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During my well woman exam at the gym my Dr. felt what he called a "sizable" nodule on my thyroid. I had an ultrasound the next day and I just got a phone call with the results. They said I have a 2 cm nodule on my isthmus (it's slightly visible from the outside and you can defintately feel it), one on the right thyroid, one on the left and they said I had one on the left lobe (I'm wondering if this means I have 4 nodule or if she just repeated herself on the left one). They are faxing my info to an endo. and I have to wait for a phone call to make an appt. Gyno office said I will likely need a thyroid scan and fine need biopsy. I had bloodwork done as well but it's not in yet.

What can I expect from these test and how worried should I be?! What does this all mean for me? Does it mean I definately have hypo or hyper thyroidism?

The bloodwork will tell if you are hypo or hyper. Testing the nodules won't.

The thyroid scan will first be done to see if the nodules are hot (functioning) or cold (non functioning). That's all that will do.

The fine needle biopsy will take a sample from each nodule and they will try to determine what type of cells they are. Obvioulsy they are looking for thyroid cancer. Please know that if a fine needle biopsy comes back "good" that means it is inconclusive because thyroid cancer does not take up the entire nodule and fine needle biopsies often miss those cells.

After those procedures and whatever comes back, you will have to let your medical team decide what to do.
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Old 03-08-2011, 07:23 PM   #1250
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Originally Posted by hcmommy View Post
During my well woman exam at the gym my Dr. felt what he called a "sizable" nodule on my thyroid. I had an ultrasound the next day and I just got a phone call with the results. They said I have a 2 cm nodule on my isthmus (it's slightly visible from the outside and you can defintately feel it), one on the right thyroid, one on the left and they said I had one on the left lobe (I'm wondering if this means I have 4 nodule or if she just repeated herself on the left one). They are faxing my info to an endo. and I have to wait for a phone call to make an appt. Gyno office said I will likely need a thyroid scan and fine need biopsy. I had bloodwork done as well but it's not in yet.

What can I expect from these test and how worried should I be?! What does this all mean for me? Does it mean I definately have hypo or hyper thyroidism?
It does not mean you definitely have hypo or hyper thyroidism. Even though I had cancer, my thyroid levels were perfectly normal. Be conscientious, but not worried. In the event it's cancer, it's likely very treatable. (Not fun, not easy, but likely treatable.)

Ask what the purpose of the scan is, given that you're having the biopsy. If I could do it over again, I would ask to skip it. I believe the iodine may have messed with my first cancer treatment.
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Old 03-08-2011, 07:30 PM   #1251
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The nurse at the gyno office said what would likely happen next but I haven't talked to the endo yet. Maybe he will just do a biopsy? Or maybe just the scan and then decide whether or not I need the biopsy? I will keep that in mind though, thank you! Can't wait to see the Dr. and just find out what is wrong one way or the other so I can get it taken care of.
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Old 03-09-2011, 02:00 PM   #1252
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I am just curious as to those with thy ca, what were the steps in your diagnosis?

Me - no blood tests, (for thyroid stuff I should clarify) even after I spent a week in hospital 1 with my wacky dr. and all kinds of tests, like colonoscopy,endoscopy, stomach motility etc. but lots of blood tests for the anemia and then the 3 blood transfusions.
ultrasound of neck
CT of neck and chest
PET scan
fine needle biopsy (I think they did this twice and it was inconclusive)
Pre-op testing blood and urine showed bad numbers so more of that testing
Another CT scan to rule out adrenal tumor, thiking I might have MEM syndrome
Pulmonary function (surgeon didnt like how I sounded pre op). Told me I might have to have a tracheostomy even before surgery. I actually told him, are you thinking of this? He says, my you think of everything dont you
Core biopsy. This was something else. He said he had to do it as he didnt know what he was dealing with. Can you say caulk gun thing out the side of your neck. Heah dh took me to Outback after that one
I had 5 diagnosis pre op I think. Pap, Meduallary, Lymphoma, Meduallary again and maybe pap again.

Oh and Micayla, do you live anywhere near Hammond. I am wondering about a restraunt. Seems our distant relative is the manger of one there. Never even heard of this guy before. He is related to our Chicago relatives. Never met them either. Well they are dh relatives I should say.

I think my ent surgeon might be moving. He sold his house. I think he is moving to gr$$ner pastures. I have a feeling where as I saw an ad for a position and it was $500K. So nice to work in the metro NY area when you are a surgeon. Well there is a new one I saw in the hall and the one who operated on me and saved my life, so I guess either one of those will be it if I need them again.
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Old 03-09-2011, 02:34 PM   #1253
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My steps to diagnosis were:

ARNP noticed swelling and ordered blood tests the same day. Within a couple of days I had had both the ultrasound and the CT scan; the blood tests were totally normal. Following that my primary care dr. referred me to a wonderful ENT. He called me while I was on the way to the appt. with her and told me I had cancer, so I was bawling when I walked into her office. She said "Well that's premature. No one knows what's going on in there until we do the biopsy." It was just exactly what I needed to hear at that moment. Then I had the FNA (biopsy) which for whatever reason my body had a ....can't think what it's called. My body panicked involuntarily even though I wasn't in pain or scared or anything...Anyway, they wanted to do a bunch of spots and they only did a few because the dr. doing the procedure had already read the first few samples and in her words "doing more is not going to change what needs to happen." (That I needed to have a total thyroidectomy and lymph node removal. Or, in scarier terminology, a modified radical neck dissection.) That was a Thursday. They told us they wouldn't know anything until the next week, so I told DH to go ahead and go on his Friday-Sunday business trip. So he flew to TX friday morning and the ENT called Friday afternoon. She said "The good news is, we can fix this. When I saw you, I thought you had lymphoma." She talked about the surgery, RAI and I remember thinking she was crazy when she said "The worst part of this whole thing will be the diet." If I had only known. It didn't sound too bad at the time....
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Old 03-09-2011, 02:35 PM   #1254
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Oh and I am about 3 hours from Hammond (live in the Indy suburbs.) All I know is that's where one of the casinos is.
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Old 03-09-2011, 02:42 PM   #1255
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So confused. They lowered my thyroid dose and my TSH is lower than it was 2 weeks ago. Shouldn't it have gone up if anything? My free T4 is in the high end of 'normal' range if you are not a cancer survivor- don't know what that means for if you are.

Well, I did some googling and it looks like if the free T4 is normal that they consider you normal even with low TSH. Which makes me feel a little crazy, but I know that I don't feel right so I am eager to see what my dr. has to say.

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Old 03-09-2011, 04:44 PM   #1256
Christine
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Quote:
Originally Posted by mrsklamc View Post
So confused. They lowered my thyroid dose and my TSH is lower than it was 2 weeks ago. Shouldn't it have gone up if anything? My free T4 is in the high end of 'normal' range if you are not a cancer survivor- don't know what that means for if you are.

Well, I did some googling and it looks like if the free T4 is normal that they consider you normal even with low TSH. Which makes me feel a little crazy, but I know that I don't feel right so I am eager to see what my dr. has to say.
There is some lag time on the TSH.

For instance, a few years ago, I started having HORRIBLE, unrelenting heart palps. All day long, every day. The first thing I did was have my TSH tested--it was normal. So I then went on and had weeks of cardiac testing done, which was all normal but confirmed I was having heart palps. My endo then retested my TSH (about 3 months after the inital test) and it had gone from 0.5 to 0.07 and we don't know why. He immediately had me back off the dosage and within 2 weeks I was totally better. So for some reason, my body was reacting to higher doses of hormones before it ever showed up in the test.

So, even though you have been reduced in medication, I think your TSH is not tracking immediately.

Ideally Free T4 and T3 should be in the middle to high range for a thyroid cancer patient. You are going to have to find a level that works for you. I'm sure your Dr. would like your Free T4 very high but if you cannot tolerate it, you are going to have to get it down until you feel sane. Sometimes it just takes a very tiny bit.
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Old 03-09-2011, 04:53 PM   #1257
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There is some lag time on the TSH.

For instance, a few years ago, I started having HORRIBLE, unrelenting heart palps. All day long, every day. The first thing I did was have my TSH tested--it was normal. So I then went on and had weeks of cardiac testing done, which was all normal but confirmed I was having heart palps. My endo then retested my TSH (about 3 months after the inital test) and it had gone from 0.5 to 0.07 and we don't know why. He immediately had me back off the dosage and within 2 weeks I was totally better. So for some reason, my body was reacting to higher doses of hormones before it ever showed up in the test.

So, even though you have been reduced in medication, I think your TSH is not tracking immediately.

Ideally Free T4 and T3 should be in the middle to high range for a thyroid cancer patient. You are going to have to find a level that works for you. I'm sure your Dr. would like your Free T4 very high but if you cannot tolerate it, you are going to have to get it down until you feel sane. Sometimes it just takes a very tiny bit.
Thanks Christine! My endo is very understanding but it was really hard to say anything because I felt like I was just crazy. But I know I'm 'off' so I'm glad DH pressed me to say something. Two weeks ago TSH was .09 and now I am .06. Free T4 I think was 1.4 but I don't remember now and I don't even know if that number makes sense. Hopefully she will call tomorrow.
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Old 03-09-2011, 05:24 PM   #1258
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MedicBill - From a fellow NYer. (Long Island)That is such a long time to wait for an endo visit. I had a long wait too, but when I told my surgeon, they called and got me in much sooner. I go to a univ. teaching hospital so they have several to pick from. I guess if there are limited drs. in your area it might seem like the wait is longer. Hope your endo visit goes well. Take a notebook to write everything down, symptoms, questions you want to ask etc. Sometimes it gets confusing. I think your synthroid level is too low too. Mine is 200. My trachea was being crushed too, so I can relate to that for sure. My one tumor was 12.5. Just curious if you have just reg. pap. or any variant. Of course I am always looking to compare notes and trying to find someone with the rare columnar cell variant which I have, which they tell me is usually found in men.

They are seeing thy ca in men around here who worked at the Ground Zero 9/11 clean up. The hosp. I go to is one of the monitoring places. Of course they dont say much due to confidentiality but I did see one guy in the news etc.

I got the B12 shot Friday. I am still tired as always.
I had my surgery at Peconic Bay and Im being followed at Stony Brook. As far as I know, it was just reg pap cancer. This is actually the first I'm hearing about the connection to Ground Zero and thyroid cancer. I was there for the first 36 hours after the attack and I worked part-time on site for the full duration of the clean-up/ recovery.

My endo increased my synthyroid to 300 mcg and switched me from generic to the name brand. Hopefully this will get things rolling in the right direction
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Old 03-09-2011, 08:27 PM   #1259
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Hi all! Boy, am I glad I came across this thread!

I'm 32 and have been diagnosed with Hashimoto's thyroiditis back in December. I was diagnosed with hypothyroidism when I was young (1991) but no one said anything about Hashimoto's. From what I understand, Hashimoto's is the condition which causes hypothyroidism?? Or is it possible to be hypo without having Hashimoto's?? I'm confused.

Also, after getting test results my doc mentioned that my thyroid is likely deteriorating and that if my TSH goes up, I will have to go to two separate pills every day as I am already on a high dose (200 mcg Levothyroxine). Does anyone have experience with this?

TIA!
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Old 03-09-2011, 09:38 PM   #1260
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Hi all! Boy, am I glad I came across this thread!

I'm 32 and have been diagnosed with Hashimoto's thyroiditis back in December. I was diagnosed with hypothyroidism when I was young (1991) but no one said anything about Hashimoto's. From what I understand, Hashimoto's is the condition which causes hypothyroidism?? Or is it possible to be hypo without having Hashimoto's?? I'm confused.

Also, after getting test results my doc mentioned that my thyroid is likely deteriorating and that if my TSH goes up, I will have to go to two separate pills every day as I am already on a high dose (200 mcg Levothyroxine). Does anyone have experience with this?

TIA!
I am on 212mcg of Levothyroxine so I take a 100mcg and a 112mcg because 200mcg is as high as the synthoid/levothyroxine goes.
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