Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lump On Left Side Of Neck


ohsotired

Recommended Posts

ohsotired Enthusiast

Let me start off by saying that I have no idea if this is related to my Celiac, so this may not belong here.

Yesterday I discovered a lump (feels like two smallish ones actually, but they move together when I push on it) on the left side of my neck. It's quite tender when I push/prod/poke, and if it's not two separate ones, it's about the the width of two fingers (long) and one finger width wide.

My first thought was lymph node, but I'm not sure it's in the right place for that (can you tell it's been a long time since I've had enlarged lymph nodes?) I've been tested for thyroid issues based on symptoms (ones that I still have) but of course the numbers came back within range (there were never any thyroid anti-body tests run, though). I'm not sure this lump is in the right place for thyroid though.....

Ok, so I'm rambling. Who do I go see? My PCP? (My PCP is the one that said thyroid was fine based on numbers alone.)

I've had a visit to a rheumatologist and an endocrinologist on my to do list for a while now - do I go to see one of them?

I've got enough weird things going on that I don't think I want to take a 'wait and see' approach with this......

Thanks in advance!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



OptimisticMom42 Apprentice

My son gets all kinds of swelling in his neck, shoulder and underarm so I'm not sure there is a right or wrong place for lymphnodes. Maybe ask your PCP to refer you.

SallyC Newbie

Your symptoms indicate thyroid issues. Doctors told me for 30 years that my levels were fine and never cared anything about my symptoms. I am sickened that I lived so long feeling like crap. I have had one benign lump surgically removed and recently had another come up. I am done with doctors telling me my bloodwork is fine.

After running across www.realthyroidhelp.com I was encouraged. I did research in my area and am working with a Nutritionist. I am 90% better with ALL my symptoms. I am on natural supplements for my thyroid and the lump on my neck is slowly shrinking. Also she worked with me on my vitamin deficiencies due to celiac and hormonal issues. I am better! I encourage you to find a doctor who will listen and don't rule out alternative medicine. It has worked for me.

Mother of Jibril Enthusiast

I would strongly encourage you to see an ENT (ear-nose-throat) specialist. It's possible that the lumps are nothing, but it could also be an infection, autoimmune, or even cancer. Cancer is the least likely, however... if that's what it is you want to catch it now! Last fall I had a lump in the exact same place that wasn't going away even after two rounds of high-strength antibiotics. A biopsy said it was non-malignant, but to be safe (since my ENT told me that lymph node biopsies have an accuracy rate of only 75-90%) I had it removed... and it was perfectly, perfectly normal. Now I can breathe easy knowing for SURE it's not cancer :) People with celiac disease have an increased risk of lymphoma.

ohsotired Enthusiast

OptimisticMom - RE: lymph nodes - You're right. I just looked up lymph nodes, and they're all over. So that might be what this is.

SallyC - I've suspected thyroid issues for a while now, based on symptoms and family history. I really like my PCP, but when I questioned her about just going by the numbers, she got a little huffy and referred me to an endocrinologist (which is a good thing, but I could tell she didn't think I needed to see one). She's a great listener and is mostly open-minded, but I was discouraged with the "your thyroid numbers are fine". I may go looking for another doc that is willing to look at the whole picture rather than just numbers.

MOJ - Maybe I'm dense, but why an ENT for this? I always associated ENT's with things like hearing problems, deviated septum's and tonsillectomies. They deal with things like this?

I'm aware of the increased risk for lymphoma with Celiac disease - that's why I don't want to 'wait and see'. :unsure:

Mother of Jibril Enthusiast
MOJ - Maybe I'm dense, but why an ENT for this? I always associated ENT's with things like hearing problems, deviated septum's and tonsillectomies. They deal with things like this?

I'm aware of the increased risk for lymphoma with Celiac disease - that's why I don't want to 'wait and see'. :unsure:

The great thing about ENTs is that they're kind of half-way between a PCP and a specialist. Mine, for example, was able to order tests for Sjogren's syndrome AND do surgery to remove my lymph node. Your problem might be related to your thyroid... but what if it's not? It might be a waste of valuable time going straight to an endocrinologist (although I would keep the appointment if you already have a referral).

That's just my experience. My PCP was the one who referred me to the ENT... specifically about the lymph node... and he turned out to be very, very helpful. I was pleasantly surprised :)

taweavmo3 Enthusiast

I have a swollen lymph node on my left side, I've had it for years. I first noticed it in my teens, when it was at its largest. I saw an endocrinologist for it, and had a biopsy for non-hodgkins lymphoma, which came back clear. I was then released, and just told to watch it. This was 20 years ago, it has gone down some since going gluten free, but hasn't gone back to normal.

I would have thought an endo would be the way to go....but Jibril's mom makes a good case for an ENT too. Hope you get some answers, and try not to worry too much!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ohsotired Enthusiast

MOJ - Thanks for elaborating on that for me. That does make sense to me. I suppose my first stop should be my PCP, although I am concerned that I might get a 'wait and see' from her.

I don't have an appointment with an endocrinologist yet - unfortunately, I have procrastinated on that and sort of talked myself out of it based on my PCP's attitude. <_<

tweavmo - Thanks for chiming in. I'll try not to worry too much, but that's something I seem to be really good at - worrying. :rolleyes:

Lisa16 Collaborator

I got swollen lymph nodes in my neck too. I think it is celiac related.

I panicked and went in and they ran a bunch of tests-- the doctor said it was one of the major nodes in the neck. Nothing. Then the swollen nodes went away.

They come back from time to time. I wouldn't worry unless the person has them for a long time.

GFinDC Veteran

Hi,

I think an endo would be fine really. For that matter your primary physician could probably order an ultrasound of the throat for you. For location reference, the thyroid gland is centered on the throat, right about where an Adam's Apple is in men. And then spreads around to both sides of the throat from there. I think they say the caner rate is 10% or less for thyroid nodules. I have a couple nodules and a cyst. The doc (endo) injected the cyst with alcohol and killed off some of the thyroid cells. It is much smaller now. The nodules he wants to monitor every 6 months or so via ultrasound. I've had the cyst for a couple years now.

Open Original Shared Link

cyberprof Enthusiast

It could be a lipoma. Open Original Shared Link

~Laura

ohsotired Enthusiast

GFinDC - I think I'm going to end up at my PCP's office for starters and see where that goes.

The location of the lump is almost a straight line to the left (and up just a wee bit) of where my Adam's Apple would be if I had one. :) It's no bigger and no smaller today, but a bit more sensitive to touch I think.

cyberprof - thanks for the link. I'll check that out too.

GFinDC Veteran

Hi Ohsotired,

That sounds like it would be in the thyroid area. I had a FNA, (fine needle aspiration) for my cyst. The doc uses a very small needle to take a sample of the tissue. No anasthetic needed, it wasn't painful at all.

  • 2 weeks later...
ohsotired Enthusiast

UPDATE: I finally saw my PCP today, and of course the lump has gone down. When I started this thread it was almost almond size, and today it's more like the size of a pea.

However something new started in the last couple of days. I had a difficult night the other night, and got almost no sleep, because every time my pillow or blanket touched my neck, it felt like someone had a hand around my throat. Which provoked anxiety in thinking that I couldn't breathe. That sensation lasted pretty much all day yesterday, and has recurred today, but is now gone.

I'm still thinking thyroid, but doc said she thought lump was lymph node. She wasn't interested in discussing thyroid with me, as my labs were 'normal' back in October. After discussing all my other symptoms with her (all point to thyroid/adrenal issues) she referred me to a rheumatologist. <_<

Amazing how quickly one can become frustrated with doctors and want to give up. That's where I'm at today.

I'm just tired of being so dang tired. I know someone here can relate........

JesikaBeth Contributor

Hey Hon! It's Jessica (Live2BWell) ~ Well I was unable to get into my old account, so I had to start a new one, here I am! LTNS! I've missed you!

Then I was unable to send you a personal messege, so here I am ;-)

How have you been? It's been a while! And ofcourse, I lost your phone number (again) - life's been crazy. I am glad you went to the PCP. I look forward to getting back in touch!

Hopefully you can messege me, but if not add me as a "friend"

You can also e-mail me jesikabeth@yahoo.com

Talk with you soon, many (( Hugs ))

ohsotired Enthusiast

Hey woman! Glad to see you back here!

Sent you an email, but can't PM you. Think you have to have X number of posts before you can send/receive PMs now.

Holler at me any time!

GFinDC Veteran

I was wondering how you were faring! Well a smaller lump sounds positive anyway. So did the doc order an ultrasound? That's what my doc did for my thyroid. The ultrasound is cheaper and a better option than an MRI per my doc. I hear you on the tired thing. My doctor said my thyroid tests were normal too. He also said he wouldn't prescribe thyroid hormones unless I had the surgery to remove my thyroid. He said there is a chance of overdosing and stressing the heart. I don't want to have the thyroidectomy so I went and got some thyroid sups at the store. They are helping me a lot with the fatigue, sleeplessness, digestion, sore joints, mental confusion, almost passing out etc. etc. I was glad to find they had thyroid available in the store like that, no prescription needed.

ohsotired Enthusiast

GFinDC - I wish I could say she did something, but seriously all I got was a referral to a rheumy. I would've welcomed an ultrasound, as it would have been something proactive. *sigh*

I'm glad you found something that seems to be helping you; I wouldn't want to have a thyroidectomy either unless it was absolutely necessary.

From the reading I've done, even though my labs are 'normal' I still could be very hypothyroid and suffering from adrenal fatigue. So I guess I keep searching until I find a doctor that will treat based on symptoms and not just labs.

Sounds like you need to find a new doctor, too. ;)

  • 4 weeks later...
noglut4me Newbie
Your symptoms indicate thyroid issues. Doctors told me for 30 years that my levels were fine and never cared anything about my symptoms. I am sickened that I lived so long feeling like crap. I have had one benign lump surgically removed and recently had another come up. I am done with doctors telling me my bloodwork is fine.

After running across www.realthyroidhelp.com I was encouraged. I did research in my area and am working with a Nutritionist. I am 90% better with ALL my symptoms. I am on natural supplements for my thyroid and the lump on my neck is slowly shrinking. Also she worked with me on my vitamin deficiencies due to celiac and hormonal issues. I am better! I encourage you to find a doctor who will listen and don't rule out alternative medicine. It has worked for me.

can you tell us more info. The doc said my levels were fine too and yet I have all of the hypo signs.

What symptoms did you have and what supplements did the nutrionist put you on. Did you get started on iodine?

I am so glad to hear you are doing better. That is encouraging!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - bold-95 replied to Mrs Wolfe's topic in Related Issues & Disorders
      10

      Cartilage and rib pain.

    2. - Scott Adams replied to CJF's topic in Traveling with Celiac Disease
      5

      European travel with Celiac Disease

    3. - CJF replied to CJF's topic in Traveling with Celiac Disease
      5

      European travel with Celiac Disease

    4. - Oldturdle replied to CeliacPI's topic in Related Issues & Disorders
      7

      Lymphocytic Colitis with Celiac

    5. - Scott Adams replied to maryannlove's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Yasso frozen yogurt bars - be careful


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,422
    • Most Online (within 30 mins)
      7,748

    Tracy LK
    Newest Member
    Tracy LK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • bold-95
    • Scott Adams
      It's great to hear that the trip went well, and the general consensus I hear about gluten-free travel in Europe, including my own experiences, is that it is much easier done in comparison to traveling and eating gluten-free in the USA. 
    • CJF
      Safely home from my recent trip to the UK. I had zero gut issues while traveling around this pretty country. Our tour leader was very good at making sure the 2 of us with gluten issues on our tour were well taken care of.  We often got our meals before the rest of the group and adaptations to the menu for us were well thought out and very tasty. I just wish restaurants here in the USA took as much pride in making food that everyone can enjoy. Many of the hotels and pubs we ate at had numerous options that were safe for us with wheat/gluten restrictions to eat.  
    • Oldturdle
      I am 73 years old and was diagnosed with Celiac disease, and started the gluten free diet 4 years ago.  This past spring,  I experienced sudden onset diarrhea, which was persistent for several weeks, before I had a colonoscopy.  I was told my colon looked normal, but the biopsy showed microscopic lymphocytic colitis.  I was asked at that time if I was still experiencing the diarrhea, and when I said yes, I was prescribed an 8 week course of Budesonide, which included the weaning off phase.  Budesonide is a steroid, but it is allegedly specific for the bowel, and has very few systemic side effects.  I must say, I experienced no side effects, except a couple little spots of persistent psoriasis went away.  I have one week of treatment left, and other than one loose stool very early in treatment, I have had no further bowel issues.  I was told that 80 percent of people go into an extensive, or even permanent, remission after taking Budesonide.  During the colonoscopy, two polyps were removed, and one was precancerous.  I know that colon cancer risks are higher in people with Celiac disease, so it was recommended that I have another coloscopy in five years.      Like your husband, I probably had untreated Celiac disease for years.  It makes one wonder if the chronic irritation and inflammation could lead to the development of microscopic lymphocytic colitis.  This disease is usually diagnosed in people over 50 years old, and occurs approximately in one out of every 1,000 people.        Incidentally, If your husband is prescribed Budesonide, it can be purchased significantly cheaper by using GoodRX.
    • Scott Adams
      Thanks for sharing this! Talk about frustrating! It is complicated enough to try to keep track of which products are safe, but the concept of the same product sold at 2 different stores--one that is certified gluten-free and one that isn't--that is exactly why having celiac disease is still so difficult, and it is so easy to make mistakes!
×
×
  • Create New...