# I'm new - Haven't even officially been diagnosed.



## Mnmomof3 (Oct 23, 2011)

Hello,

At a doctor appointment last week it was accidentally discovered that my thyroid was enlarged. The doc ordered some blood work and they came out abnormal. My TSH is <0.03. The T3 and T4 were just outside the upper range for normal. My doc assured me that there is a problem and I will be having an ultrasound next week. I am scared for sure. But I am also hopeful that finding this problem and figuring out how to treat it will make me feel better eventually. The odd thing is that I have been having tons of symptoms that can be attributed to thyroid disease but that is NOT what I was at the doctor for in the first place. Many of the symptoms I have been experiencing - well, I just wrote them off as getting older, being foggy because of my busy life and lack of sleep, dry hair and hair loss due to our well water, etc. And I honestly could live with all of those symptoms but the very, very worst thing I have been experiencing is mood changes. I have absolutely changed a ton within the last several months and quite honestly, it scares the bejeezus out of me. My husband and I just celebrated our 1st anniversary (my second marriage, his first) and lately I have been so irrational and mean to him that I just can't even believe it. My personality up to this point has been a very laid back, easy going, easy to get along with, patient person. But I am not that way anymore...at least not most of the time. I have 3 kids from a previous marriage and somehow I manage to spare them from my worst behavior...at least I don't usually direct it at them. I do however occasionaly treat my husband poorly in front of the kids. Up until just a few days ago I had no idea why my personality and general disposition has hanged so much. After an incident where I didn't act myself, e.g. I was mean, impatient, ill-tempered, etc. I have spend hours pondering why I have acted the way I did. I have even contimplated just taking off and never coming back--surely everyone involved would be better off without having to see me act like this. I have never had any mental health issues in the past...this seriously only started within the last few months. So I am almost relieved to find out that I have something, anything that might help explain some of this. Of course I am stressed out about what I might learn after my appointments next week but I am still hopeful that I might get some answers that would help me to understand some of the unpleasant things I have been going through lately. Oh, and I should mention that I have been spending a fair amount of time worrying that I may have thyroid cancer. I am an almost five year oral cancer survivor who tends to let her mind jump right to the most serious problem before having all of the answers - in the years since I have become cancer free I have mellowed out a ton with my worrying but when I have another health concern I tend to become a smidge anxious - I believe that it just may come with the territory.

I have been reading this forum a little bit tonight and thought maybe it would relieve a bit of stress if I could just share my story. I don't have a specific question for you guys (I do have a zillion questions but I figure most of them will be answered by my doc next week) but I was more than anything trying to introduce myself and just share whats going on with me. Thanks for reading..Amy


----------



## Octavia (Aug 1, 2011)

Amy, welcome! You are so lucky that your doctor found the enlarged thyroid and ordered the labwork!!!! And you are definitely not alone in your personality changes, but the good thing is that you recognize the problem. You are very much on the right track toward getting better. Your lab results show that you are hyperthyroid, as you probably know.

Keep us posted!

Oh, and as for being worried about thyroid cancer, here are my thoughts: for most of us, thyroid cancer did not result in abnormal labs or an enlarged thyroid. Based on my limited knowledge, it usually shows up as a nodule that may or may not be visible (as a lump) in the front of the neck. Ease your fears for now, and wait and see what your ultrasound shows next week.


----------



## Andros (Aug 26, 2009)

Mnmomof3 said:


> Hello,
> 
> At a doctor appointment last week it was accidentally discovered that my thyroid was enlarged. The doc ordered some blood work and they came out abnormal. My TSH is <0.03. The T3 and T4 were just outside the upper range for normal. My doc assured me that there is a problem and I will be having an ultrasound next week. I am scared for sure. But I am also hopeful that finding this problem and figuring out how to treat it will make me feel better eventually. The odd thing is that I have been having tons of symptoms that can be attributed to thyroid disease but that is NOT what I was at the doctor for in the first place. Many of the symptoms I have been experiencing - well, I just wrote them off as getting older, being foggy because of my busy life and lack of sleep, dry hair and hair loss due to our well water, etc. And I honestly could live with all of those symptoms but the very, very worst thing I have been experiencing is mood changes. I have absolutely changed a ton within the last several months and quite honestly, it scares the bejeezus out of me. My husband and I just celebrated our 1st anniversary (my second marriage, his first) and lately I have been so irrational and mean to him that I just can't even believe it. My personality up to this point has been a very laid back, easy going, easy to get along with, patient person. But I am not that way anymore...at least not most of the time. I have 3 kids from a previous marriage and somehow I manage to spare them from my worst behavior...at least I don't usually direct it at them. I do however occasionaly treat my husband poorly in front of the kids. Up until just a few days ago I had no idea why my personality and general disposition has hanged so much. After an incident where I didn't act myself, e.g. I was mean, impatient, ill-tempered, etc. I have spend hours pondering why I have acted the way I did. I have even contimplated just taking off and never coming back--surely everyone involved would be better off without having to see me act like this. I have never had any mental health issues in the past...this seriously only started within the last few months. So I am almost relieved to find out that I have something, anything that might help explain some of this. Of course I am stressed out about what I might learn after my appointments next week but I am still hopeful that I might get some answers that would help me to understand some of the unpleasant things I have been going through lately. Oh, and I should mention that I have been spending a fair amount of time worrying that I may have thyroid cancer. I am an almost five year oral cancer survivor who tends to let her mind jump right to the most serious problem before having all of the answers - in the years since I have become cancer free I have mellowed out a ton with my worrying but when I have another health concern I tend to become a smidge anxious - I believe that it just may come with the territory.
> 
> I have been reading this forum a little bit tonight and thought maybe it would relieve a bit of stress if I could just share my story. I don't have a specific question for you guys (I do have a zillion questions but I figure most of them will be answered by my doc next week) but I was more than anything trying to introduce myself and just share whats going on with me. Thanks for reading..Amy


Amy; you have some very real concerns here since you are a cancer survivor and will continue to be, I hope and pray.

Oh, yes................you need the ultra-sound. Given your history, I am surprised they did not order RAIU (radioactive uptake scan) which is far better than an ultra-sound which has a tendency to miss stuff.

You definitely sound hyperthyroid so indeed, there are emotional and personality changes.

Graves', neuropsychiatric
http://www.ngdf.org/cms/modules/files/uploads/7699.PDF

Also, get familiar w/these symptoms just in case:
Thyroid Storm
http://www.clivir.com/lessons/show/thyroid-storm-symptoms-causes-and-treatment.html

And this test could be useful:

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Whenever you get any lab results and want to post them here, please include the ranges as different labs use different ranges!


----------



## Mnmomof3 (Oct 23, 2011)

Thank you all for your comments and wisdom. This seems like a very welcoming board and I appreciate that. When I was going through my cancer journey I found that having a place like this to go helped me a ton so I am thankful to have found this forum to help me along with my new issue. I will read the links that you all have provided and educate myself as much as possible before my appointments this week. Most of my friends and coworkers think I am crazy to read so much on the interent about medical concerns I have but I stand by it. When I had cancer none of my doctors took it seriously....I was bounced around from doctor to doctor and the only reason I was finally diagnosed is because of my persistance and insistance that they perform a biopsy. If I didn't have all of the knowledge from my research I would perhaps not be here today. Thank you again - I will be back. Amy


----------



## Andros (Aug 26, 2009)

Mnmomof3 said:


> Thank you all for your comments and wisdom. This seems like a very welcoming board and I appreciate that. When I was going through my cancer journey I found that having a place like this to go helped me a ton so I am thankful to have found this forum to help me along with my new issue. I will read the links that you all have provided and educate myself as much as possible before my appointments this week. Most of my friends and coworkers think I am crazy to read so much on the interent about medical concerns I have but I stand by it. When I had cancer none of my doctors took it seriously....I was bounced around from doctor to doctor and the only reason I was finally diagnosed is because of my persistance and insistance that they perform a biopsy. If I didn't have all of the knowledge from my research I would perhaps not be here today. Thank you again - I will be back. Amy


Amy; there is no question but what we have to be the captains of our own ships here. Ins. co. are dictating a lot of aspects of our medical care and sadly, there are a lot of misinformed docs out there too.

On the bright side though, just to keep the scale in balance; there are some very very terrific docs out there also. And when we find one, we hang on!


----------



## Serenia (Sep 27, 2011)

Your mood swings are a common symptom of Graves disease (being Hyperthyroid). Its called Graves rage 

I too went through that right before I went into Thyrotoxicosis and was diagnosed with Graves. I was really giving sh*t to my husband too.


----------



## Andros (Aug 26, 2009)

Serenia said:


> Your mood swings are a common symptom of Graves disease (being Hyperthyroid). Its called Graves rage
> 
> I too went through that right before I went into Thyrotoxicosis and was diagnosed with Graves. I was really giving sh*t to my husband too.


I have often wondered how many people are incarcerated because of undiagnosed Graves' Disease.


----------



## webster2 (May 19, 2011)

Andros said:


> I have often wondered how many people are incarcerated because of undiagnosed Graves' Disease.


I often wondered if I should have been committed to the asylum during that time. It was not pretty.


----------



## Andros (Aug 26, 2009)

webster2 said:


> I often wondered if I should have been committed to the asylum during that time. It was not pretty.


Ditto that.


----------



## Mnmomof3 (Oct 23, 2011)

Thank you all for your comments here. It really does make me feel a bit better about what I am going through. It is very comforting to know that I am not the only one who has ever expereinced this rage. Just today my husband irritated me. Shouldn't have been a big deal at all. But I flew right off the handle. I said mean things that I don't really mean. But at the time I just can't control it. It is very discouraging. After things settled down my hubby asked me if I feel like I am in control of my emotions when I have those outbursts. The answer to that is ABSOLUTELY NOT! I am not physically violent and don't ever seem to be tempted to be, praise God. But the hurtful things that come out of my mouth are so shocking to me. The thing is that later, after the moment has passed I completely realize that what I said was horrible and it hurts me so much to know that I am hurting someone.

I had my ultrasound and the results showed "multinodular goiter with no specific abnormalities". I know that the road ahead is a long one and this isn't going to be easy but I cried tears of relief when I got these results. I am just so thrilled to know that there is actually a physical cause for what I am going through. I have an appointment on Monday with an endocrinologist and will hopefully find out more about what other tests and treatment options that will be in my future. A quick funny side note: we had a Halloween party to attend last weekend. After finding costumes for my 3 kids I am just not willing to spend much on a costume for myself - and that is kind of an excuse because I am just not that big on dressing up. I decided for the party I needed something though so I bought a cute t-shirt that says "Witch in Training". I topped it off with a witches hat and a gittery pink broom. When the hubby saw what I was wearing he said "Witch in training, huh? I was thinking you could probably teach the class". I honestly do see the humor. He wasn't trying to be hurtful and I know that - we are just doing the best we can to get through this and I think if I couldn't laugh, I'd be crying......a lot! I will post again when I know more information. I am sure when I start learning more about what the Endo suggests for treatment I will have lots and lots of questions. Thank you all again for your support. Amy


----------



## Andros (Aug 26, 2009)

Mnmomof3 said:


> Thank you all for your comments here. It really does make me feel a bit better about what I am going through. It is very comforting to know that I am not the only one who has ever expereinced this rage. Just today my husband irritated me. Shouldn't have been a big deal at all. But I flew right off the handle. I said mean things that I don't really mean. But at the time I just can't control it. It is very discouraging. After things settled down my hubby asked me if I feel like I am in control of my emotions when I have those outbursts. The answer to that is ABSOLUTELY NOT! I am not physically violent and don't ever seem to be tempted to be, praise God. But the hurtful things that come out of my mouth are so shocking to me. The thing is that later, after the moment has passed I completely realize that what I said was horrible and it hurts me so much to know that I am hurting someone.
> 
> I had my ultrasound and the results showed "multinodular goiter with no specific abnormalities". I know that the road ahead is a long one and this isn't going to be easy but I cried tears of relief when I got these results. I am just so thrilled to know that there is actually a physical cause for what I am going through. I have an appointment on Monday with an endocrinologist and will hopefully find out more about what other tests and treatment options that will be in my future. A quick funny side note: we had a Halloween party to attend last weekend. After finding costumes for my 3 kids I am just not willing to spend much on a costume for myself - and that is kind of an excuse because I am just not that big on dressing up. I decided for the party I needed something though so I bought a cute t-shirt that says "Witch in Training". I topped it off with a witches hat and a gittery pink broom. When the hubby saw what I was wearing he said "Witch in training, huh? I was thinking you could probably teach the class". I honestly do see the humor. He wasn't trying to be hurtful and I know that - we are just doing the best we can to get through this and I think if I couldn't laugh, I'd be crying......a lot! I will post again when I know more information. I am sure when I start learning more about what the Endo suggests for treatment I will have lots and lots of questions. Thank you all again for your support. Amy


Aw; that is a cute story and I am glad you guys can find some humor in this awful mess that you are going through.

Sending many blessings your way and do know that we are all here for you when needed.

We will be waiting for more info when you can.


----------



## webster2 (May 19, 2011)

Very cute story, and I agree, if you can see the humor...you'll both get through it. It really does help to know you are not the only one going through this, doesn't it!?!?!  We are here for you!


----------



## Octavia (Aug 1, 2011)

Wow. Not having Graves, I've never experienced the types of rage some of you describe, but from reading about it, I can only imagine the turmoil it causes for you. Although I can't honestly say I can relate to it, I do pray that it's only very temporary for anyone who has to deal with it.

I've said this before, but it's amazing how much control that little gland has over our physical, mental, and relational well-being. (Okay, I'm not sure "relational" is a word, but you get the point...)


----------



## webster2 (May 19, 2011)

Octavia, I would rather deal with cancer than Graves'. Graves' sucks.


----------



## Octavia (Aug 1, 2011)

webster2 said:


> Octavia, I would rather deal with cancer than Graves'. Graves' sucks.


I completely agree...my cancer has been, overall, not too big of a deal. I didn't have horrible symptoms...a little tired, a little pain in the neck (pun intended), but no real emotional symptoms.


----------



## webster2 (May 19, 2011)

Octavia said:


> I completely agree...my cancer has been, overall, not too big of a deal. I didn't have horrible symptoms...a little tired, a little pain in the neck (pun intended), but no real emotional symptoms.


Yup, me too....a bit of a pain in the neck, a little extension to my neck smile but nothing to shake the earth, for sure. Graves', on the other hand, has been a big pain in the lower unit.


----------



## Mnmomof3 (Oct 23, 2011)

Well, here is my update. I will start by saying that I am not too terribly fond of my Endocrinologist. Now don't get me wrong, I believe he is doing all of the appropriate things for me, but his bedside manner leaves something to be desired. I met with this Doc a couple weeks ago. He sent me to have the radioactive uptake scan. After the scan, the Radiologist came into the room and talked with me. He told me that my thyroid is definately misbehaving but that it "looks pretty straight forward". I went back to the Endocrinologist this past Monday. This was the day we were supposed to be moving forward with a treatment plan. I ended up feeling a bit ripped off for paying a copay to only have him tell me that he feels that I should have a biopsy. Okay, I am all for going to do this. But I just wish he would have sent me for all of the testing before I came back. Alright, I am over it I guess . He did run a bunch of blood work but he didn't share the results with me other than to say "you are mildly hyperthyroid". He did say that my TSH was .01 and the other numbers were at the very high end of normal. He stated that he didn't see anything concerning with my scan results and here are my choices: have the thyroid removed; take the radioactive iodine; wait and see; or have the biopsy. I apparently have several nodules with the biggest two being 3.7 and 3.8 centemeters. I questioned the cancer risk because of the size because I read that the larger ones carry the higher risk (I do not believe everything I read however, that's why I asked him). He just kept reassuring that 95% of nodules like this are benign. I have been feeling pretty crappy lately, I am losing hair like crazy and I am having swallowing difficulty. The Endo told me that just because those are symptoms of thyroid disease doesn't mean that is what is causing them. What? I just don't understand that statement. Of course many of the symptoms could be caused by a host of other conditions but wouldn't it seem logical that since my thryroid is out of whack that could be the reason for my issues? It just almost seems like he is dismissive of my symptoms. I will be going for the biopsy tomorrow morning, which incidentally is the 5 year anniversary of the day I had the biopsy for my jaw cancer. That is a coincidence that I could have done without for sure. But I am keeping positive thoughts and hoping for results I can live with. Even if that means a cancer diagnosis. I have an appointment next Tuesday to find out the results. At this moment I am just hoping I can make it to the Tuesday appointment without stressing too much. There really is no sense getting my undies in a bunch over something that may or may not be reality. But that is maybe a bit easier said than done. I'll post more when I know more. Thank you for your support. Amy


----------



## Mnmomof3 (Oct 23, 2011)

Biopsy results in: Benign! To say that I am relieved about this is an understatment. But now my doctor has suggested waiting 3 months before deciding how to proceed. He said that he would like to see how my labs are in 3 months and then he will make a recommendation on whether I should have surgery or if he thinks I should have the radioactive iodine. I agreed to this but now I am questioning if this is the best thing. I am having definate symptoms that I would rather get corrected sooner than later. One of the symptoms that is very concerning to me is the swallowing difficulties. Two of my nodules are close to 4cm and they are definately affecting my swallowing. I told this to the doctor and he said that my symptoms may, or may not be related to the nodules. But I believe that they are. I realize with my oral cancer history that there is always the chance that I have a recurrance in the throat or larynx with that. But....I just had an oral cancer check up in which they put the scope down my throat, etc and gave me an all clear. So I am pretty certain that the thryoid is to blame. I sometimes panic when I try to swallow because I feel like I am going to choke on what I am trying to get down. It is almost a feeling like I have forgotten how to swallow. After I had my biopsy the swallowing got worse for a few days, I assumed do to swelling of the nodules from the trauma they just went through. So my question to you folks is this: do you think I need to get a second opinion or do you think it is reasonable for me to wait the three months for the labs and then find out what treatment he recommends? Thank you for your time. Amy


----------



## Andros (Aug 26, 2009)

Mnmomof3 said:


> Biopsy results in: Benign! To say that I am relieved about this is an understatment. But now my doctor has suggested waiting 3 months before deciding how to proceed. He said that he would like to see how my labs are in 3 months and then he will make a recommendation on whether I should have surgery or if he thinks I should have the radioactive iodine. I agreed to this but now I am questioning if this is the best thing. I am having definate symptoms that I would rather get corrected sooner than later. One of the symptoms that is very concerning to me is the swallowing difficulties. Two of my nodules are close to 4cm and they are definately affecting my swallowing. I told this to the doctor and he said that my symptoms may, or may not be related to the nodules. But I believe that they are. I realize with my oral cancer history that there is always the chance that I have a recurrance in the throat or larynx with that. But....I just had an oral cancer check up in which they put the scope down my throat, etc and gave me an all clear. So I am pretty certain that the thryoid is to blame. I sometimes panic when I try to swallow because I feel like I am going to choke on what I am trying to get down. It is almost a feeling like I have forgotten how to swallow. After I had my biopsy the swallowing got worse for a few days, I assumed do to swelling of the nodules from the trauma they just went through. So my question to you folks is this: do you think I need to get a second opinion or do you think it is reasonable for me to wait the three months for the labs and then find out what treatment he recommends? Thank you for your time. Amy


Personally, I would opt for the second opinion; perhaps an ENT?

I am glad for the benign results but to be honest with you, there is more to the gland than just one nodule or whatever and given your history..............


----------



## Mnmomof3 (Oct 23, 2011)

UGH! I knew I didn't care for my Endo and now I have good reason. The Endo told me that I do not need to see a surgeon. He wanted me to wait 3 months and have my levels checked again. He told me that he didn't believe surgery was an appropriate option for me, etc. Well, I got through Christmas and then placed a call to my primary doc. After me being a little pushy, she referred me to a surgeon, who I saw this past Friday. I told him that I realized that my biopsy was benign but I still wanted his opinion. He said "well, the nodule on your right side is follicular cells and a needle biopsy can not determine malignancy in this type". What? I was speechless. Not only did the Endo not mentioned that at all, he actually discouraged me from getting a surgical consult. I felt that he withheld information from me that would have helped me make the most informed decision that I can. So, I am going to get the total thyroidectomy here in the next couple of weeks. And I have already gotten a referral to a new Endo because I do not intend on every seeing this other guy again.


----------



## Octavia (Aug 1, 2011)

Oh, that's unfortunate. My FNA showed follicular cells, and as you mention, I was told that because they were follicular cells, it was inconclusive, so I needed surgery. Unfortunately, they recommended only a partial thyroidectomy. That partial turned out to show cancer, so I had to go in for another surgery a few weeks later. All is well now, though. (Interestingly, the cancer was papillary, follicular variant, not follicular as one might expect based on the FNA.)


----------



## Andros (Aug 26, 2009)

Octavia said:


> Oh, that's unfortunate. My FNA showed follicular cells, and as you mention, I was told that because they were follicular cells, it was inconclusive, so I needed surgery. Unfortunately, they recommended only a partial thyroidectomy. That partial turned out to show cancer, so I had to go in for another surgery a few weeks later. All is well now, though. (Interestingly, the cancer was papillary, follicular variant, not follicular as one might expect based on the FNA.)


That "is" interesting. You have been seriously challenged with all of this; there is no question of it.

And thank you so much for helping everyone else on this board!


----------

