# Frequently swollen neck lymph nodes and neck



## Nicole1973

I wanted to talk about the VERY frequent swelling of my neck and clavicle lymph nodes, including my neck swelling up. My neck swells up so much it looks like a huge double or third chin. The swelling usually stays for a couple days to one week, then goes down. A lot of the neck swelling is staying now. I am actually quite embarrassed about it. My lymph nodes swell up then disappear.

At least the doctors are taking this seriously now. It's been going on for five years. They kept saying I had a virus infection. How one person could have that many virus infections is beyond me LOL!

Anyone else out there with Hashi's that have this problem??


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## Andros

Nicole1973 said:


> I wanted to talk about the VERY frequent swelling of my neck and clavicle lymph nodes, including my neck swelling up. My neck swells up so much it looks like a huge double or third chin. The swelling usually stays for a couple days to one week, then goes down. A lot of the neck swelling is staying now. I am actually quite embarrassed about it. My lymph nodes swell up then disappear.
> 
> At least the doctors are taking this seriously now. It's been going on for five years. They kept saying I had a virus infection. How one person could have that many virus infections is beyond me LOL!
> 
> Anyone else out there with Hashi's that have this problem??


You definitely need an ultra-sound of your thyroid. If you have clavicle lymph nodes swollen, that is "definitely" something that should be seriously approached.

And also FNA of those swollen lymph nodes.


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## Nicole1973

I had an ultrasound done in December 2011...Thyroid was normal size and diffusely heterogeneous. GP and endo aren't concerned with the ultrasound...what else is new...


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## Andros

Nicole1973 said:


> I had an ultrasound done in December 2011...Thyroid was normal size and diffusely heterogeneous. GP and endo aren't concerned with the ultrasound...what else is new...


Nicole, as you know, I and many others are worried for and about you. You have only been here a short time but you are a "family" member now.

I am going to tell you what works in these cases. You are going to have to start screaming cancer to your doctors. No one wants to use the "C" word but I can guarantee you , you will get action.

Can you do it? No one should have swollen clavicle lymph nodes and if they do, something is very wrong. I don't want to worry you but I do want you to get some attention from your doctors.

If we could be there with you; we would be.


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## Nicole1973

Dear Andros - thank you for your kind words. It means a lot to me. Sending hugs thru the computer.


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## Andros

Nicole1973 said:


> Dear Andros - thank you for your kind words. It means a lot to me. Sending hugs thru the computer.


{{{{{Niclole1973}}}}}


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## Nicole1973

Question...if it's the big C word...don't my lymph nodes/node need to be swollen all the time? Mine go up and down.

Neck swelling goes up and down as well, but some of it is staying (like directly under my chin).


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## Andros

Nicole1973 said:


> Question...if it's the big C word...don't my lymph nodes/node need to be swollen all the time? Mine go up and down.
> 
> Neck swelling goes up and down as well, but some of it is staying (like directly under my chin).


That is a very good question and maybe some of our posters who did have lymph node invasion can answer it for you.

I hope so.


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## joplin1975

Nicole1973 said:


> Question...if it's the big C word...don't my lymph nodes/node need to be swollen all the time? Mine go up and down.
> 
> Neck swelling goes up and down as well, but some of it is staying (like directly under my chin).


I had *microscopic* invasion of three lymph nodes. My surgeon asked me to get a full neck ultrasound prior to surgery so he could "flag" any suspicious nodes and, via the u/s, none were found. The cancer was only discovered during pathology -- because of the size of my tumor, did a prophylactic central neck dissection.

He did mention, during the surgical consult, that in more advanced stages, you could see/feel nodes swelling, but I was under the impression that the swelling would be rather constant?


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## Nicole1973

So it is possible that nothing showed up on my thyroid ultrasound (normal size at the time of the ultrasound but diffusely heterogeneous)...there still might be something there? Ahhh so frustrating. I wish I had millions of dollars and could go to a private MRI clinic!


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## joplin1975

Nicole1973 said:


> So it is possible that nothing showed up on my thyroid ultrasound (normal size at the time of the ultrasound but diffusely heterogeneous)...there still might be something there? Ahhh so frustrating. I wish I had millions of dollars and could go to a private MRI clinic!


Well...yes. I could be wrong, but I don't think even a MRI would help. They just have to get in there and look at the tissue, unfortunately. Not only did my cancerous nodes not show up in the u/s and RAIU, I also had three small cancerous nodules on the right side (cancer was primarily on the left lobe) and no cold spots were noted on the right side on the RAIU either. It's a tricky little bugger.


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## Nicole1973

I am going to post some pictures of the swelling I get under my chin and neck. I don't have any pictures of my intermittent swollen lymph nodes although you can see it a bit in this first picture.














































The below picture is me without swelling...


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## Nicole1973

joplin1975 said:


> Well...yes. I could be wrong, but I don't think even a MRI would help. They just have to get in there and look at the tissue, unfortunately. Not only did my cancerous nodes not show up in the u/s and RAIU, I also had three small cancerous nodules on the right side (cancer was primarily on the left lobe) and no cold spots were noted on the right side on the RAIU either. It's a tricky little bugger.


What made your doctor decide to go in there and take a look at the tissue?


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## joplin1975

My FNA was conclusively cancer (papillary) and given the size of the nodules known to be cancerous (the largest was imaged to be 2.5 cms, but ened up being 3.2), my surgeon recommended a total thyroidectomy rather than a partial. Once he was in there, it was clear that gland was heavily diseased, hence his decision to remove five lymph nodes from each side for pathology.

I have to tell you that my path report noted evidence of "chronic thyroiditis" and generally characterized the gland as a complete disaster. Despite that and the large nodules, I never had swelling like you have had in those pictures. In fact, my husband is a PA and it wasn't until after my GYN noticed the lump in my neck that he realized there was any thickness. In fact, I had to lean back and swallow for him to see it. And I have a fairly thin neck. As others have noted, something tells me you have a lot of other things going on...much more than a disagreeable thyroid. I really hope someone can give you answers soon!


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## Andros

Nicole1973 said:


> I am going to post some pictures of the swelling I get under my chin and neck. I don't have any pictures of my intermittent swollen lymph nodes although you can see it a bit in this first picture.
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> The below picture is me without swelling...


Nicole, can you palpate the swollen lymphs under your chin? By the way, you are gorgeous! "Inside and out!" Hang in there; we are doing our level best to get you to where you are going w/this!!


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## Nicole1973

There is one lump I can feel and move around...when I pointed it out to my doc she said it was one of my parathyroid glands...my understanding is that they are the size of a grain of rice. This is definitely larger than a grain of rice.. more like a gum ball. But it seems like it wasn't even noticed in the ultrasound...i guess because they were just looking at my thyroid gland and not the rest of my neck/throat?

This is the only lump that stays all the time. The other are nodes on the side of my neck and clavicle area that come and go.


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## Nicole1973

Andros said:


> By the way, you are gorgeous! "Inside and out!"


Aww shucks thanks. I certainly don't feel 'gorgeous' these days!


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## Andros

Nicole1973 said:


> There is one lump I can feel and move around...when I pointed it out to my doc she said it was one of my parathyroid glands...my understanding is that they are the size of a grain of rice. This is definitely larger than a grain of rice.. more like a gum ball. But it seems like it wasn't even noticed in the ultrasound...i guess because they were just looking at my thyroid gland and not the rest of my neck/throat?
> 
> This is the only lump that stays all the time. The other are nodes on the side of my neck and clavicle area that come and go.


That's the thing; geez!! Thank you for answering. A lot of this stuff does wax and wane depending on whether the thyroid is in a flare and if the antibodies are being active.


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## allie7

Hi Nicole,

Did you ever get a diagnosis? Do you still have swollen neck lymph nodes?

I have had them for at least 3 years and my neck looks very similar to yours.

I am seeing a doctor next month.

One of my suspicions is an allergy to dental fillings. I get red streaks just under

my jaw on each side, directly in line with my 2 rear molar fillings that i had replaced

in 2008.

Anyway please get back to me if you can and take care.

Best wishes,

Allie


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## Yvette15

Hello Nicole
I've been experiencing the same swelling and symptoms, doctors can't figure out what causes the swelling. I've had CT, MRI, US and everyone is clear, did you ever find out what caused it?


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## BigOrange

I had a swollen lymph node under my jaw on the right side. They did a cat scan then a needle biopsy which showed inflammation. He removed it and two small ones as well and they were just full of inflammation. I am still seeing the Surgeon because he doesn't know why it was full of inflammation. I was going to attach a picture of it but the pic is to big and I don't know how to make it smaller.

I got a swollen gland on the left side that was real sore but it went away.

I am attaching a picture of the scar after surgery to show the location.


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## joplin1975

Did they just biopsy you lymph nodes or has anyone looked at your thyroid?


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