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  • Multinodule goiter with normal TSH

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    Old 03-20-2009, 04:32 PM   #1
    Nixtribe
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    Multinodule goiter with normal TSH

    I have been suffering with tightness of my throat/neck for quite some time now. About a year ago, two nodules were found on the left side of my thyroid...because of a large family history of thyroid cancer I have been checked throughly for cancer..biopsys the works. At my latest ultrasound I was told that now the left side of my thyroid is much more swollen, the nodules are pretty much the same. So now I am told I have a goiter. I have had all the typical hypo symptoms forever now. I went back to my endo today and he told me my only option is surgery to remove the thyroid due to the fact that my tsh is normal. For some reason that sounds very extreem to me and I am going to make an appointment for a second opinion.

    My main question is: Don't docs treat goiters with normal tsh with thyroid medication to help to reduce the size and keep it from growing? My head is spinning thinking this is my only option for relief when meds havn't even been tried yet. Any comments, advice will be welcome. Thanks in advance!!

     
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    Old 03-20-2009, 04:43 PM   #2
    loralei
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    Re: Multinodule goiter with normal TSH

    yeah, my mom had a goiter an they were able to shrink her nodules with RAI. Her neck feels much better now. I guess it does not work for everyone, but it's worth asking about.

     
    Old 03-20-2009, 05:00 PM   #3
    Nixtribe
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    Re: Multinodule goiter with normal TSH

    Quote:
    Originally Posted by loralei View Post
    yeah, my mom had a goiter an they were able to shrink her nodules with RAI. Her neck feels much better now. I guess it does not work for everyone, but it's worth asking about.
    I don't think the nodules are what is bothering me..it is the goiter or swollen thyroid. They keep checking/biobsy the nodules and so far they are nothing to worry about. Gahhh...I am just tired of dealing with this, now they say to remove it and I am not sure if that is the right thing to do.

     
    Old 03-20-2009, 06:10 PM   #4
    loralei
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    Re: Multinodule goiter with normal TSH

    Quote:
    Originally Posted by Nixtribe View Post
    I don't think the nodules are what is bothering me..it is the goiter or swollen thyroid. They keep checking/biobsy the nodules and so far they are nothing to worry about. Gahhh...I am just tired of dealing with this, now they say to remove it and I am not sure if that is the right thing to do.
    My mom seems to have confused nodules versus a goiter. She called enlarged nodules a goiter. So to her, the goiter was the nodule. Basically the RAI made her whole neck smaller.

    Definitely try all the alternatives possible before you remove your thyroid. If you do take it out, it's not the end of the world, it just takes a while to adjust. But it should be a last resort. You said you've had biopsies on your nodules? If your neck keeps getting bigger, that can indicate cancer. Did they check you for Hashimotos?

     
    Old 03-20-2009, 06:41 PM   #5
    Nixtribe
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    Re: Multinodule goiter with normal TSH

    Quote:
    Originally Posted by loralei View Post
    My mom seems to have confused nodules versus a goiter. She called enlarged nodules a goiter. So to her, the goiter was the nodule. Basically the RAI made her whole neck smaller.

    Definitely try all the alternatives possible before you remove your thyroid. If you do take it out, it's not the end of the world, it just takes a while to adjust. But it should be a last resort. You said you've had biopsies on your nodules? If your neck keeps getting bigger, that can indicate cancer. Did they check you for Hashimotos?
    I was checked for hashi a few months ago when they did my last labs...cancer gets checked every 6 months. He did do new labs today..so maybe something will show up

     
    Old 03-20-2009, 06:46 PM   #6
    Oleander53
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    Re: Multinodule goiter with normal TSH

    Hello, I had a multinodular goiter with completely normal labs.... I probably had symptoms for a good 5 to 7 years before it was discovered. I also developed a tighteness in my throat area and a pressure which eventually led to finding the nodules.

    It took SEVERAL Ultrasounds before someone actually called it a goiter!!!! It really makes a difference who is reading your ultrasound and is experienced with thyroid disease.

    I chose to have mine suppressed by medication. I am on Armour and now on Armour and Cytomel...I have been medicated for 2 1/2 years now. My nodules are still there but my goiter is much smaller. Many books say suppression does not work but for me it has worked well so far.

    Also my Endo says my multinodular goiter is from Hashi's..... so make sure you have your antibodies tested. Mine are very low within normal range but he says I have it.... sooooo

    It is interesting.......so many people have said " your face is so much thinner". It is not my face, it is my neck. Yet no one could feel it or see it before? Really weird if you ask me.

    So I hope that helps. I am due for my Ultrasound and labs so I will let you know if I am still suppressed well......... By the way my medications barely made a change in my lab values....my thyroid just was not functioning well.

    Oleander

     
    Old 03-20-2009, 07:47 PM   #7
    Nixtribe
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    Re: Multinodule goiter with normal TSH

    Quote:
    Originally Posted by Oleander53 View Post
    Hello, I had a multinodular goiter with completely normal labs.... I probably had symptoms for a good 5 to 7 years before it was discovered. I also developed a tighteness in my throat area and a pressure which eventually led to finding the nodules.

    It took SEVERAL Ultrasounds before someone actually called it a goiter!!!! It really makes a difference who is reading your ultrasound and is experienced with thyroid disease.

    I chose to have mine suppressed by medication. I am on Armour and now on Armour and Cytomel...I have been medicated for 2 1/2 years now. My nodules are still there but my goiter is much smaller. Many books say suppression does not work but for me it has worked well so far.

    Also my Endo says my multinodular goiter is from Hashi's..... so make sure you have your antibodies tested. Mine are very low within normal range but he says I have it.... sooooo

    It is interesting.......so many people have said " your face is so much thinner". It is not my face, it is my neck. Yet no one could feel it or see it before? Really weird if you ask me.

    So I hope that helps. I am due for my Ultrasound and labs so I will let you know if I am still suppressed well......... By the way my medications barely made a change in my lab values....my thyroid just was not functioning well.

    Oleander

    Thanks...that helps a lot! I am going to see if I can find another doc to see if I can get another opinion. Is it unusual to find an endo that will try meds for this type of goiter? I have been on the run around for such a long time...they found the nodules a year ago..but I have felt the symptoms for much longer than that..to the point that I have been told to seek therapy, it's all in my head. At least now they can't tell me it is in my head! Thanks again.

     
    Old 03-21-2009, 08:43 AM   #8
    Oleander53
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    Re: Multinodule goiter with normal TSH

    I want to caution you to make sure you get a FNA or have them do a Scan to see what is in the Mass to make sure it is not something else. Make sure it is just a goiter.

    Then seek a 2nd opinion......if your condition is benign there is no reason you cannot try medication.

    I actually saw several Doctors before I was satisfied with my treatment.

    Let us know what happens and see if they did any antibody testing.

    O

     
    Old 03-21-2009, 10:45 AM   #9
    tired47
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    Re: Multinodule goiter with normal TSH

    Hi! I too have "normal" TSH, but low Free T4,T3 and multinodular( remaining )lobe thyroid. I went to 4 endo's before I found an endo who did an ultrasound on thyroid.
    I had the left half removed almost 3 years ago for growing/benign nodules that made it difficult to swallow, constant choking sensation. I wish I had found this endo first, maybe I could have avoided surgery and started meds to stop growth of nodules that were removed.

    I had so hypo symptoms but was dismissed because my tsh was "normal".
    It is sooooo frustrating to be told it is all in your head... when I know how I used to feel- normal and just want to feel that way again.

    Don't give up... I just started synthyroid ( low dose) for suppression. I go for repeat ultrasound in 4 months to see if the "nodules are shrinking". Good luck to you!

    Last edited by tired47; 03-21-2009 at 10:47 AM.

     
    Old 03-22-2009, 07:18 AM   #10
    Nixtribe
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    Re: Multinodule goiter with normal TSH

    Quote:
    Originally Posted by Oleander53 View Post
    I want to caution you to make sure you get a FNA or have them do a Scan to see what is in the Mass to make sure it is not something else. Make sure it is just a goiter.

    Then seek a 2nd opinion......if your condition is benign there is no reason you cannot try medication.

    I actually saw several Doctors before I was satisfied with my treatment.

    Let us know what happens and see if they did any antibody testing.

    O

    The doc I am seeing now did antibody testing and told me it was normal. Although I usually try to get copies of all of my records...he just had the nurse call me with results and I didn't get a copy of them. That was several months ago...I just had blood work done again this past Friday, so I will let you know what they say this time. I have not had a scan, but the cancer doc that did all that said there was no reason to have a scan. So I suppose that means there is nothing to worry about there.

     
    Old 03-22-2009, 07:26 AM   #11
    Nixtribe
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    Re: Multinodule goiter with normal TSH

    Quote:
    Originally Posted by tired47 View Post
    Hi! I too have "normal" TSH, but low Free T4,T3 and multinodular( remaining )lobe thyroid. I went to 4 endo's before I found an endo who did an ultrasound on thyroid.
    I had the left half removed almost 3 years ago for growing/benign nodules that made it difficult to swallow, constant choking sensation. I wish I had found this endo first, maybe I could have avoided surgery and started meds to stop growth of nodules that were removed.

    I had so hypo symptoms but was dismissed because my tsh was "normal".
    It is sooooo frustrating to be told it is all in your head... when I know how I used to feel- normal and just want to feel that way again.

    Don't give up... I just started synthyroid ( low dose) for suppression. I go for repeat ultrasound in 4 months to see if the "nodules are shrinking". Good luck to you!

    thanks so much for the encouragment. I have been to many docs so far, but this is my first endo...up until now they kept saying the nodules were not big enough to cause any choking feeling. I was sent to gastro doc who put me on expensive meds for reflux for 6 mos...no change...I told them in the begining I don't have reflux. I think because I am a big person, they think I must eat unhealthy, and or late at night because that is all I would hear is change my diet. I eat very healthy foods...not much sugar, and I eat early and do not eat for several hours before I go to bed. Now they can see that my thyroid is still getting bigger...I have ruled out the reflux with the tests and by taking the medicine with no change.

    It is very frustrating to go back after jumping through all the hoops put before me and then told surgery is my only option...!!! Well 6 months ago they didn't even want to admit it was my thyroid!!

     
    Old 04-06-2009, 04:03 PM   #12
    vivfla1
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    Re: Multinodule goiter with normal TSH

    Quote:
    Originally Posted by Oleander53 View Post
    Hello, I had a multinodular goiter with completely normal labs.... I probably had symptoms for a good 5 to 7 years before it was discovered. I also developed a tighteness in my throat area and a pressure which eventually led to finding the nodules.

    It took SEVERAL Ultrasounds before someone actually called it a goiter!!!! It really makes a difference who is reading your ultrasound and is experienced with thyroid disease.

    I chose to have mine suppressed by medication. I am on Armour and now on Armour and Cytomel...I have been medicated for 2 1/2 years now. My nodules are still there but my goiter is much smaller. Many books say suppression does not work but for me it has worked well so far.

    Also my Endo says my multinodular goiter is from Hashi's..... so make sure you have your antibodies tested. Mine are very low within normal range but he says I have it.... sooooo

    It is interesting.......so many people have said " your face is so much thinner". It is not my face, it is my neck. Yet no one could feel it or see it before? Really weird if you ask me.

    So I hope that helps. I am due for my Ultrasound and labs so I will let you know if I am still suppressed well......... By the way my medications barely made a change in my lab values....my thyroid just was not functioning well.

    Oleander

    Many ultrasounds. Many drs shrugging me off. This is exactly what happened to me;however, the medication I am on had to be increased and it is causing me heart palpitations, but the difficult swallowing is better-most days.

     
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