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Old 02-13-2006, 08:22 AM   #1
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kenzlane HB User
Angry Help needed...I have no idea what is going on?????

Okay I will make this long winded story as short as possible....I went to the ENT in Dec 2005 cause i have major problems with my Sinuses. My mother died of Lung Cancer 8-17-04 & she didn't go to the dr until it was too late, not thinking that I had cancer but I just quit smoking in Sept 2005 & have lost weight, want to get my health in order...blah, blah, blah. So I am at the ENT office & he checks me out, sinsuses, yes, major problem but fixable with sinsus surgery (determined after a series of tests were taken). During this inital appt, he fills my throat, asks me if I have thyroid problems. I told him "no, not that I know of" Well he schedules me to have a ultrasound of my thyroid just to check things out. Okay, got the CT scan of my sinsus & Ultrasound of my thyroid. Well, it seems that I have a goiter on my midportion of the right lobe of my thyroid. Okay what does that mean? He proceeds to tell me that it is inconclusive & that we have to have a fine needle aspiration for further testing. Okay lets do it. I go & get this done. Well, My ENT's script was for this nodule, the dr that was performing the FNA told me that I have TWO large multinodule goiters & he wants to sample them both. Okay, fine do what you have to, I want to know what is going on. I get the results back - the 1st one that was the midportion is consistent with hyperplastic/adenomatoid nodule arising in the background of lymphocytic thyroiditis ----(WHAT DOES THIS MEAN?????) Recommend that I get repeat sampling of lesion if there is an increase in size.
2nd one - this is in the lower pole portion of my right lobe - consistent with hyperplastic/adenomatoid nodule with hurthle cell changes arising in the background of Lymphocytic thyroiditis.(WHAT DOES THIS MEAN???) Again same recommendation to get repeat sampling if increase in size.
I go to the ENT to get these results & he tells me that he can't tell me anything....I asked him if it was cancerous, he said I can not tell you that it is or it isn't....WHAT KIND OF ANSWER IS THAT???? Please bear in mind that my mother has passed away from LUNG CANCER AGE 55. I know that this has nothing to do with what I am going through but come on....you can't tell me if I have or have not got the BIG "C". I've got two little girls 4 & 5 - if I got cancer CUT IT OUT!!!!! THe ENT gives me MORE tests....need to get a blood test to see if my thyroid is working properly & to get another ultrasound to see if the multinodule goiters have increased in size. I go & get these tests. The ultrasound showed no growth in size & the blood test results showed up normal: These are my numbers:

Thyroxine - Normal range 4.5-12.0 - mine were 7.3
TSH - normal range 0.49 - 4.67 - mine were 3.89

I have no clue what these numbers mean but reading some of the posts I realize that these could be BOOK #'s for normal ranges...I am so confused. But it gets better....

I call my ENT for my test results & he is on vacation. I rec'd a call from my family dr's office & they told me my results. My family dr wanted me to get the THYROID UPDATE SCAN. Well the ENT secretary called me & told me that he said there is no change, let's follow up in 8 mos to a year & we will redue all of the tests....hmmmm, my family dr wants me to get further tests to find out what is going on & this guy wants me to come back in a year...***!!! I go & get the tests anyway, this is my body, my life, my responsiblity. The ENT's office calls me again, I tried to explain the situation to them again, that it wasn't deteremined if I have cancer or not, I want an answer, I want to know what is wrong with me....so with all my complaining I have an appt on the 28th with the thyroid dr. Well, about 20 mins ago, I called my family dr to get the results of the uptake scan that I got on Feb 7th. one word "MORONS" - She gets my folder & tells me that I have a multinodule goiter. Are you kidding me...I know that. I need to know if there are hot, warm or cold spots on the nodule. I think she was SHOCKED that I was asking for such a detailed answer. She told me "yes, there are COLD Spots but within normal limits?" Okay - great now what does that mean....I am beside myself & getting angrier at the minute when I realize that I can't get an answer. I feel like I am on the telephone with the computer & can't get a human. Can someone give me some insight on what I am suppose to do or what they would do it they were me? Right now as I stated before I am really upset & angry & can't think straight. I need some direction. Oh, just now ENT office called me, my appt with the thyroid dr is on 2/28 - 2 weeks away, the secretary told me that they do not have the results yet (BS) & that the dr would review all details with me at my appt. I was very nice cause I don't think you get anywhere or any answers when you are mean. HELP ME PLEASE!!!!

 
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Old 02-13-2006, 09:49 AM   #2
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Natalie00 HB User
Re: Help needed...I have no idea what is going on?????

I am so sorry for what you are going through. Doctors, especially specialists, take forever to get results from and get appointments. They don't seem to realize that while they are takin their time, the patient is freaking out at home waiting for the results.

Any chance you can get a 2nd and 3rd opinion from other ENT specialists? I never take the word of one doctor anymore. If you are really worried, by all means see more doctors and get more tests run.

Let us know how it turns out.

 
Old 02-13-2006, 10:25 AM   #3
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Join Date: Jan 2006
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NikkiNak HB User
Re: Help needed...I have no idea what is going on?????

Hello-

Wow I am really sorry you are going through this. Unfortunately I am learning that alot with thyroid problems brings on battles. You have definetly come to the right place as there is alot of knowledge on this board and tons of support.

An uptake scan would be a good test for you.It will show how the thyroid is functioning and the dr.s can get more insight into what is going on. "Hot" nodules usually mean hyperthyroidism/graves."Cold" nodules may be cancerous but don't panic ( I know that is hard not to do)until you have results as it could be nothing. I would go for that test and discuss your sistuation with your endo. Also did you have any anti-body tests done? That would also be a good test to see if there is an underlying autoimmune disease such as hashimotos or graves causing goiters/nodules. I would suggest purchasing "Thyroid for Dummies" as it will give you a little more insight into what you are dealing with and ?'s you can ask your endo to be aa little better prepared. We will all be here to support you and give advice on treatments. Hopefully someone with a little more knowledge will jump in shortly.
Welcome to the board and keep us posted.

Nikki
__________________
DX. Toxic Multinodular Goiter (now growing rapidly) & Hyperthyroid from autoimmune Graves Disease

 
Old 02-13-2006, 11:03 AM   #4
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illmakeit HB User
Re: Help needed...I have no idea what is going on?????

HI Kenzlane, welcome to the board
Well, I'm not the one with more knowledge, but have had a few of the same experiences.
Quote:
Originally Posted by kenzlane
Again same recommendation to get repeat sampling if increase in size.
I go to the ENT to get these results & he tells me that he can't tell me anything....I asked him if it was cancerous, he said I can not tell you that it is or it isn't....WHAT KIND OF ANSWER IS THAT????
I understand your frustration! I had nodules - one large one and other small ones - FNA couldn't tell them for sure cancer or not (only about 10-15% are cancerous). FNA's can not always tell either. Just the way it is. Since yours has not changed in size, I think this is GOOD! Even if it is cancer, most are VERY TREATABLE and CAN BE CURED. It is the most curable cancer of all. AND cancer of the thyroid is usually very slow growing so it is not as urgent as other cancers. I had to wait until after surgery to see if my was benign -it was. I had TT because mine was so large and was starting to bother me (it was getting larger). I decided to get it all out - just in case. If I were you, I would wait on that. I got a second opinion and then found this board. Did a lot of research and help from the great people here - and read through a lot of the old posts.

I don't have answers for labs - don't know much about them yet. As far as doc's go, yeah, there are a lot or morons out there. Just check the old posts and see!! As far as the hot, warm or cold spots on the nodule I believe they don't always tell you anything - I think mine were cold and no cancer.

Meanwhile, use this time to research. Educate yourself some more. I have been all over the web reading everything I could - I mostly stay away from commercial sites but a few do have some merit. I have used the hospital sites etc. and mainly just did a search for thyroid and came up with a lot of info. Also thyroid nodules and so forth. We can't post websites without permission, but there are a few in the information archives that are good. Sometimes the page isn't there any longer but take off the end and just go to the main site.

The library may have some books that may help also. There are a number of good books about thyroids - maybe a search of this site for the word "book" will give you some of the names. I haven't found thyroid for dummies at my library. I did find Mary Shomon's book and am reading it now.

Good luck and come back with any questions - some of these people are quite knowledgable and they are all very sympathetic. Most have "been there"! And I think everyone here has been very frustrated at some time, and we know how it feels for the docs to just act like they are a god.

Take care.
__________________
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88

 
Old 02-13-2006, 11:56 AM   #5
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midwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB User
Re: Help needed...I have no idea what is going on?????

Hi kenzlane...
Try to calm yourself. You have plenty of time to figure this all out. Your first step should be to get that Thyroid for Dummies book. It will teach you the basics and help you understand more of what you're told at the upcoming appointment. It will give you confidence to ask the right questions. That's important.

As for the nodules in a " background of lymphocytic thyroiditis". I interpret that to mean that you have an autoimmune thyroid disease otherwise known as Hashimoto's thyroiditis. This may be giving you symptoms that you've been thinking are so insignificant that you haven't sought treatment, and it even might be responsible for those sinus troubles. Look in our "Information Archive" at the top of the thread title list for a comprehensive list of the dozens of symptoms that are associated with the condition.

As for the cancer possibility... I'm not the best person to ask, but there are many here who have experience in that area. I do know enough that "Hurthle cell changes" are a troublesome sign. It's true that no doctor can tell you at this moment whether your thyroid is cancerous or not, so don't go off on him on that account. The very good news is that even if you would happen to have a cancerous nodule, you have plenty of time to explore your treatment options and find the very best thyroid cancer specialist you can. Only about 10% of thyroid nodules are cancer, and thyroid cancer is very slow-growing, hardly ever metastasizes, and is 90-something % curable. Take your time with this, and put the panic away.

Your high-normal TSH says that your gland is on its way to failing. If you have symptoms, that's why you do.

There is no "book" for normal ranges because every person has a set point of levels where they feel well. It's like this: You have one shoe size that fits within a "normal" range of women's sizes. You wouldn't feel comfortable in a 6 if you wear a 9. Even though your present thyroid levels fall within a "normal" range, doesn't mean the "fit" is right for you. Your thyroid may be providing you with a size 6 when you need a 9. Make sense?

I hope that made some sense to you, and I hope it helped calm your nerves somewhat.

You have my sympathy on the loss of your mother. My dad succumbed to lung cancer too. From what I've learned, it still might have been too late for both of them even if they had checked it out sooner. Lung cancer is just that way. Very poor survival rate, even when caught early. But thyroid cancer - and I am not assuming that you do have it, mind you - is not like lung cancer. Rest assured there.

 
Old 02-13-2006, 01:05 PM   #6
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Join Date: Feb 2006
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kenzlane HB User
Re: Help needed...I have no idea what is going on?????

wow...I have been on other boards about other things but this was amazingly quick with the replies....Thank you!
I have been trying to read everything that I can on the internet, searching the web saving sites to reference later but I really need questions to ask my ENT. I am not going to do anything else until my appt on the 28th but I want to be prepared. I want a list of question, I want a plan of action & if I don't like what he says then I go to the next ENT. I am still gonna get a 2nd opinion regardless but I would like all my ducks in a row 1st if you know what I mean.

Thank you Natatie - I will keep post update after my appt on the 28th, I am sure that I will need direction as to what to do next.

Nikki - Thanks for your advice as well. I did get the uptake scan & results were that my cold nodules were within normal limits...ugh. I can't stand when they have a range. It really should be a yes or no answer as everyone is different. - I need to check into the anti body tests - thanks much! I got a gift certificate to Borders for xmas - gonna go up to the bookstore & get that book.

Illmake it - Thank you very much as well. I have been reading everything that I can - it is overwhelming...I didn't even know what the thyroid did now I do, I guess this is how we learn. When it affects us, we dig for information until we know everything possible. I am keeping a positive attitude however friends/family get frustated that I don't know what is wrong with me & that drives me insane. I am doing everything that I can at the present time with the knowledge that I have. I know that they are only offering "their opinion & what they would do if it were them" speeches cause they care about me - how do I handle that??? It isn't happening to them, it's happening to me & I am okay I just get angry when these people (dr's) that we look up to as if they were god for an answer & they look at you & have NO CLUE.

Midwest1 - Thank you! I am getting the book, done deal. I am gonna look up all the information I can in the archives, I need to compile my list of questions for the dr. I want to be overly prepared for my visit on the 28th.
The hurthle cell was what killed me, I looked it up on the web & this is bad that is why I am going crazy. I know that everyone says that only 10-15% is cancerous but someone has to be in that 10-15% right? I am keeping a positive attutide that all this will work out I just can't stand waiting. Yes your whole shoe size thing makes sense - I totally agree just because what is normal for one person doesn't mean it will be normal for another but I guess that is why there is a range. I am really sorry about your Dad. I also agree that it was too late to treat she was stage 4 & only lived for 3 1/2 mos. It was/still is horrible. Sometimes I think that I am in a fog, times like this make me really miss/need my mother. There was a quote that I read - you never get over being a child as long as you have a mother ~sarah crue jewel - I am an adult now & it sucks.

Thank you everyone! I will be back! This is the best site that I have been on ever!!!!

 
Old 02-13-2006, 01:36 PM   #7
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Join Date: Dec 2005
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illmakeit HB User
Re: Help needed...I have no idea what is going on?????

Hi Kenzlane,

I apologize, I didn't even mention how awful it had to be losing your Mom. It is so sad, she was so young. It must have been a terrible time for you.

Yeah, the people on this board ARE wonderful. Some have been here a long time and just hang around to help us newbies! SO NICE!! You were lucky to get responses so quickly. Some of the people are all over the world and in a lot of different time zones.

You hang in there - you sound like you are on the right path - I commend you for taking control! The people around you, like you say, really care and mean well. You might say something like
"That's interesting."
"I'll have to think about that."
"I'll have to check that out."
"That's something to consider."

just some ideas..............

Check back in with questions anytime.
__________________
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88

Last edited by illmakeit; 02-13-2006 at 01:38 PM.

 
Old 02-13-2006, 02:41 PM   #8
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NikkiNak HB User
Re: Help needed...I have no idea what is going on?????

Hi Kenzlane-

Ranges do suck don't they- I am in that same "range" thing right now deciding on graves disease. I also am fighting constantly with my husband because he doesn't trust the things I have learned through my research and on this board. Hang in there because the fight will be worth it in the end. It seems to me everything that comes along with thyroid disease is a battle and you find yourself in it for the long haul whether or not you want to be. We will be here to support you.

Nikki
__________________
DX. Toxic Multinodular Goiter (now growing rapidly) & Hyperthyroid from autoimmune Graves Disease

 
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