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Fat Thigh-Roid Woes: Grow up, Goiter!

Post Published: 13 August 2010
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Category: Column, Fat Thigh Roid Woes, Graves Disease Symptoms Column
This post currently has 32 responses. Leave a comment

A few years ago, when my doctor thought I was Hashimoto all the way, I had been on meds for about six months when she called me and told me I needed to come off meds immediately cause I had Graves.  Obviously, she didn’t test specific antibodies for each, she just ASSUMED I had Hashi…dumbass.  At the time, I hadn’t noticed anything out of the ordinary, maybe I’d been moving faster but I thought it was because I had more energy than before cause my thyroid was working!  Yay!!

I also didn’t pay much attention to how I was regularly choking while eating, and people around me assumed I was choking because I have a tendency to inhale my food like a rabid dog.

I went to another endo cause the doc who said I was first Hashi, now Graves, was a giant whore and I never wanted to see her again.  This new endo said something like, “You’re not Hashi, never were according to these blood tests and DAMN have you seen the size of your neck??”

All I had to do was move my eyes a little south and see the fluffy pillow wrapped around the front of my throat.

“But…I’ve always had a fat neck.”  Honestly though, I don’t remember my neck ever being THIS fat.  I just thought it was because I’m a Taurus, my body is fluffy by nature, and anytime I’ve read anything on astrology about my freakin’ sign it says, “You bulls love food so make sure you watch your weight, you also love sensual things and rich desserts – oh, and you also have a tendency to have a large neck.”

She continued, “Do you hear a ‘whoosh’ sound from blood flowing in your ears?”

Could my fat neck be the reason I was choking on air, and felt like I was head down in oncoming waves at the beach?  I imagined a monkey sitting inside my brain, wearing a graduation cap, doodling on a chalkboard while baring his teeth and screeching at me.  He’s pointing from the chalkboard to me and slapping his face, so furious he can’t communicate with the idiot wearing the dunce cap in the corner.

How in the world could I have not noticed something like this before?  Now that I saw it, that’s all I saw.  From that moment on, I obsessed about my goiter.  I left the house wearing scarves so people wouldn’t notice my neck.  What made me assume people would notice when I HADN’T NOTICED??  I made constant references to my “thick football neck”.  I drove people INSANE while looking over pix from parties, just to say “look at how lovely my goit looks”.  I busted open a bunch of photo albums with pictures of me over the years…fat neck fat neck fat neck…..AHHH…and I discovered I always had a little lump at the front of my neck.  From the time I was young.  I remember doctors mentioning it in passing, but I never thought to check it out.  However, now it was absolutely GIGANTIC.

All of the sudden, I’m noticing it on everyone around me.  If I see anyone on tv, on the news, or wherever and if they appear nervous and have a goiter – all I want to do is somehow get into contact with them and say “visit your doc NOW”.  Whenever my eyes wander to a stranger that has bulging eyes, goiter, and shaky hands – I resist the urge to sit them down and have a long, lengthy, and tearful discussion about thyroid disease.

I’m trying to figure out the purpose of all this…why do I care?  I’ve had other ailments before, but when people exhibit similar symptoms my first reaction isn’t “oh snap, she has this…”  Why am I noticing these goiters everywhere I go??

I’m self-analytical to the point of exhaustion – but I can’t figure out the purpose of being so aware of goiters on other people.  Maybe the answer is staring at me in the face, but I wanted to know if this was specific to me, or…how many of you are noticing goiters on others now that you’ve noticed your own?  Have you ever said anything to anyone, or wanted to say something?

I know that if I was to ever walk up to someone on the street, or while meeting someone in passing, and rattle off about a goiter, bug eyes, and diarrhea – I’d either get shot or locked up in an asylum, so…I refrain.

So, I sit and think.  I think about this:  Do I have some sort of societal obligation to others now that I’ve been through this horrible nightmare?  Can I generate good “karma” by giving someone else a heads up?  Am I crazy to think this way?

I know it’s very common for people to get diagnosed as being manic depressive or bipolar if suffering from Graves, and it could take years before an actual Graves diagnosis is made.  Many of you have probably been in this situation, so if you could help someone else avoid the same fate, would you?  Of course, how do we know the stranger or acquaintance in question actually has Graves or hyperthyroid and if they do – how do we know they aren’t being treated?  Well, we don’t, simple as that, but is it so bad just to…say something…anything??

Think back to before you knew you had Graves, how would you have reacted if someone came up to you and said “Funny story…starts out with me having a fat neck….”?

Should we feel any sense of duty to help others possibly suffering from Graves or hyper?  Or should we just stay out of it?

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32 Responses to “Fat Thigh-Roid Woes: Grow up, Goiter!”

  1. Amanda says:

    I too am a neck watcher. My nodule is visible, now, and I seem to be the only one who sees it. But I know it is there, and it is possible for others to have this. So I talk to people and look them straight in the neck. Weird of me right? It would be nice to be able to spot, advise and help someone. So far nothing. I also highly doubt that I would be brave enough to say anything, and worried that my spastic social behavior would make we want to point. So please hope I don’t spot one.

    Though I have wondered if maybe I am “hoping” someone else has this, so I can say “ah-ha.. you have it too!”. I am kind of stupid and evil like that.

    Amanda

    • Nicole Wells says:

      Hey Amanda,

      It’s totally NOT stupid and evil to do that! I think it’s just us wanting to find someone who understands, and accepts us living with this disease. I totally understand where you’re coming from.

      xoxo,

      N

  2. The Engineer says:

    After doing a field study on ultrasound machine used for thyroid imaging, I have developed a habit of watching the people necks. So far I was able to see several thyroid abnormalities, but it is a real challenge to let the person know about his or her thyroid troubles!

    • Nicole Wells says:

      Hey Engineer,

      Have you ever started to say something to someone and held yourself back? I haven’t been able to get myself to that point, but one day when I open my mouth I shall report a status update to all of you. Hopefully, I won’t walk away with a black eye : )

      Take care,

      Nicole

  3. Jennifer says:

    I also have joined the neck watcher society. I’m not sure if I would talk to a stranger about what I perceive to be their goiters, but I definitely would talk to a friend or even a casual acquaintence. I’ve been hypo and self-conscious about my goiter since high school (30 years) and I’m meeting more people all the time with thyroid problems. It’s just amazing how many of us there are!

    I just had a biopsy (sonogram aided FNA) today, so I’m on pins and needles (no pun intended) waiting for the results. The past couple of years, I’ve had increasing tenderness and pressure in my neck and something’s definitely going on.

    Interstingly enough, my kind new endo told me a month ago my thyroid wasn’t that big and that I just had a layer of fat over it, causing it to look worse than it is. This, after every doctor for 30 years has remarked on how large my goiter is. Oh, and just days before he ordered today’s biopsy after seeing something that concerned him on my sonogram and CT scan results – do you think he’ll apologize to me now that he’s been proven wrong by the tests? My guess is no.

    What really got my attention in your posting was the question your dr. asked – “Do you hear a ‘whoosh’ sound from blood flowing in your ears?” I started having that happen the last few months and have not gotten a good idea on what it means. What did she tell you? I’d really appreciate any information anyone can provide me on this.

    • Lori says:

      Jennifer – the “whoosh” sound is called a bruit, which is caused by increased blood flow through the thyroid. A bruit is the sound heard by stethoscope. It usually goes away as the goiter size decreases.

      During a routine physical exam, docs check for bruits in other areas of the body also. You might have noticed a doctor listening with a stethoscope on the sides of your neck during an exam. When they do this they are checking for carotid bruits, which might indicate carotid artery disease.

      I hope this helps.

    • Nicole Wells says:

      Hi Jennifer,

      A layer of fat over the goiter? Gahhh, I don’t even know if I believe anything coming out of a doctors mouth anymore. A goiter feels completely different than a layer of fat, and it’s pretty easy for me and anyone with goiter experience to tell the difference. Stupid docs.

      Good luck with your biopsy results, I hope everything works out for you!

      Lori – thanks for letting both of us know what the “whoosh” actually was – my doctor told me it had something to do with my neck being so large, and letting in so much blood, but I didn’t know the actual name or that you can get it anywhere on your body.

      xoxo,

      N

  4. Kristi Moll says:

    I do notice people’s necks all the time now. My goiter is huge, and some people in my family like to point it out every time I see them. My grandpa, gotta love him, says “your neck hasn’t shrunk yet” every time I see him. I am wondering for any of you out there that have had a large goiter with grave’s and gotten RAI, did it shrink afterwards? Just wondering if I am going to be stuck with this forever. As close as we have gotten, I wouldn’t miss it’s overbearing weight on my neck. Stupid goiter.

    • Nicole Wells says:

      Hey Kristi,

      My goiter has definitely shrunk with RAI, and my neck looks normal. It was so big at one point I was convinced neck stretch marks were in my future.

      I’d asked the docs if my neck would shrink, and they never wanted to give me a straight answer. My guess that it varies on what “normal” is for everyone.

      Take care and don’t fret : )

      Nicole

  5. The Engineer says:

    Kristi, I asked the same question several patients. One of them (28 years old) had her goiter disappear after RAI.
    I have vitiligo patches on my hands, but I don’t feel embarassed because of that.

  6. HDinOregon says:

    I am not a neck watcher myself, but I am a word watcher, and I must say “Thigh-Roid” is a most superb creation. Well word-smithed! Well done!

    Thanks so much for the enrichment of my vocabulary. Love it!

    Your truely,
    HD

    • Nicole Wells says:

      Hi HD,

      Thank you! Would you believe I came up with it while staring at my fat thigh in the mirror a few months post RAI? Cause yeah, that really did happen : )

      xoxo,

      Nicole

  7. thy_r88gous says:

    wow, i just have to say i dont know the answeres to you questions but i think the same way. ive had Gd for a little over a year, it started with my eyes. and they say i have a goiter but i dont see it, i just see many many chins lol. anyways i recently got a job and i wait on at least a hundred people a day (today was 128) and i see “symptoms” everywhere in many of my customers and i cant get up the nerve to tell them because i am trying to get rid of them before they notice my symptoms, but i can tell you i would have liked someone to have told me long ago.

    i did have one customer ask if i was being treated for my thyroid disease and i thought that was kind of rude. because when i replied she acted like she knew everything about thyroids because she had hypo years ago.
    i also had some crazy guy tell me that my one eye was the size of a sea turtle, so…………. i dont kknow the answer to these questions, if you figure it out let me know, lol.

    • Nicole Wells says:

      Hi Thy-r88gous,

      Who THE HELL told you your eye looked like a sea turtle?? What a jackass. The eye situation upset me more than the goiter situation, and it still does. I’m super sensitive about it, even though I laugh and call myself “Quasimodo”. I mean, I have no other way to get through it besides laughter.

      I’ll definitely let you know if I figure out the answers to the questions I’ve asked, and please let me know if you ever get the nerve to say something to a customer. I’m curious to find out if there is really ever a good way to bring up the topic.

      Take care,

      Nicole

  8. Rosemary says:

    I wish people had mentioned it – no one ever did except my doctors and even they missed the mark. I got my TSH tested at age 9 (back in the 1980s) because of a goiter, but the levels were normal, so no action was taken. My doctors for the next decade would notice in our initial visit that I had a goiter, and I would say “oh yes, I got tested for that when I was 9 and my levels were normal.” And they would just say OK and move on. It wasn’t until I was 21 and living in Canada (originally from the US) that I had a doctor say “OK – let’s retest you!” and referred me to an endo who followed through until we had a firm Hashi’s diagnosis. Too bad about the weight gain, long cycles, dry elbows, bumpy arms, sensitivity to cold… i was even on Rx meds for a while for the skin conditions. All cleared up when I went on meds! And of course my goiter went down – finally I could wear turtlenecks and swallow pills!

    • Nicole Wells says:

      Hi Rosemary,

      I’m glad a doctor finally went in for another test. It’s appalling that most of the docs you saw were fine with a checkup you had at 9 years old.

      I’m so glad you brought up the turtleneck thing, I couldn’t wear ANY shirts that hugged near my neck, or necklaces that were too tight. It’s so weird, isn’t it?!

      xoxo,

      N

  9. The Engineer says:

    The swallowing test with neck extended in most cases will discriminate between the layer of fat and swollen thyroid. The swollen thyroid will go up while swallowing, but the layer of fat will not move. Also on the side view the swollen thyroid will bulge out while the fat will not protrude. On the other hand the thyroid nodules may be hidden if the person has short neck or the thyroid gland is substernal. In that case the “Pemberton sign” (sp) can be used to detect substernal goiter.
    One patient got diagnosed with thyroid nodule in very odd way. She noticed that she used to get weird hiccups while wearing a dress with a tight neck band. It turned out that she had a thyroid nodule which irritated a recurrent nerve while being pushed by a neckband, thus causing hiccups.

    • Nicole Wells says:

      Hey Engineer,

      You just answered a question I’ve always had in the back of my mind! I had no idea hiccups could be caused by a goiter or anything neck related, because before I had RAI I was hiccuping DAILY. Until I just read your post, I figured it was something to do with Graves and just a weird body reaction – but no idea it was my actual goiter that could have caused hiccups nearly 3x a day. It was a nightmare.

      Thank you so much for all the info you’re giving us!

      xoxo,

      N

  10. Graves Situation says:

    I’ve wondered about saying something to strangers, too. I have recently done some business at work with a young-ish man with probably the most protruding eyes I’ve ever seen. Part of me wants to be sure he’s under a doctor’s care; another part doesn’t want to embarrass him about something so obvious he has to have been (I hope) to every doctor in town. What’s the right answer?

    • Nicole Wells says:

      Hi Graves Situation,

      Does he have other symptoms of Graves Disease as well? I have no idea what to tell you on how to approach this, or if you even should – all I can say is that if it were me I’d casually mention my own symptoms hoping to see some spark of recognition in his eyes.

      It would be a touchy subject regardless since you’re doing business with this person, so you never know…

      Good luck and let us know if you ever mention anything to him!

      xoxo,

      Nicole

  11. Donna says:

    Nicole,

    I am a neck watcher too, I can’t help myself. I’ve been that way sense the lump in my neck was diagnosed. I have never really approached anyone about their neck because I have not seen anything yet that warranted it but I would, I could not live with myself if I did not. As my lump grew and my doc said it was probably just sinus drainage I had people ask what was up with my neck and it pushed me to get help so I feel obligated. I was not offended in the least. At least 5 or 6 people approached me, some complete strangers. I always wonder if people see me staring at their necks and if they are ofended but so far no negative results.

    I talk to anyone who will listen about thyroid disease though. I seek out opportunities. I wear my DT t-shirt with pride and if someone makes a comment I pursue it. I’ll never know for sure if I helped anyone but it’s still very fulfilling to me. This disease is confusing and awareness is key!

    Thanks for writing this. It will encourage others become neck stalkers, oops, watchers, lol!

    Donna

  12. Great article, Nicole!

    I look back at pictures that were taken six years before I was diagnosed with thyca and I see my thyroid bulging out of my neck. How did I not notice it before? How did my family and friends miss it?

    Now, I too am goiter-aware. I always check out peoples’ necks, which makes me sound completely creepy, but it’s the truth. I’ve never had the nerve to point out someone’s goiter to them, though. I’ve never felt like it was the appropriate thing to do, but I don’t know if that’s the right approach or not. Maybe I should tell people their thyroid is bulging out of their neck. What if they don’t know? Would it make a difference?

    Thanks for this great post!

    xoxo,
    Joanna

  13. The Engineer says:

    Soon after finishing the ultrasound project, I‘ve been searching the dating site and found a person with thyroid nodule. Despite the possible unpleasant consequences I wrote PM to her asking if she is aware of that condition. In her reply she admitted of having a nodule, but she was surprised about how I spotted that. I wrote her back then explaining that I did a field study test of a ultrasound machine and then developed the “neck watching” habit after that

  14. Diann says:

    I found an endocrinologist that I finally thought took me seriously and that I could work with. Guess what? He’s leaving the practice at the end of Sept. Anyhow, I just saw him and at the last appointment he basically discounted everything on the basis that my bloodwork was in normal range. I do have a multinodular goiter. Plus, I have had the thyroid scan and uptake done twice with an uptake of more than double the norm. However, I am told that this means nothing unless the bloodwork is out of range. However, in conjunction, I do have elevated parathyroid hormone. Most of my symptoms are hyper like the racing heart rate, profuse sweating, severe headaches, I get the wooshing blood flow sound in my ears too, but have gained weight and tried very hard to lose. The best I have been able to do is lose a few pounds. This coming from a person who was always thin and people yelled at to put on weight even though I ate normally in my younger years. I still think there is something to the thyroid issues. I can relate to how so many of you feel. Next endocrine visit, I am seeing the senior partner in the practice because I was told by my current endocrinologist that he has lots of experience and is good at figuring out “puzzles” like mine. Sometimes, I wonder how much of a puzzle it is because my body is screaming out with symptoms! I’d be interested in any of your thought or experiences. And, yes, I know my neck is thicker and my face is puffy in appearance. It is not just a weight gain thing. I look swollen and like someone blew up a balloon. My 6 yr. old daughter wanted to play makeover one night and tried to put one of my necklaces on me. It was so tight I thought I was going to have to get the scissors to cut it off.

    • Ms. Nana says:

      I just found out I have a goiter. I was trying to see if there anything I can take or eat to make this shink in my neck.

  15. Ms. Nana says:

    I just found out about my goiter. I was trying to see if there anything you can take to make it shink. Please help me

  16. KTA says:

    Help!

    I noticed under my chin getting very large, and I gained 15 lbs in a very short time. I went to the coldest doctor in the history of medical professions last week, and she did the thyroid blood test which came back 1.8. She didn’t even feel under my chin, only very low down where the gland is. I feel the nodule under my chin, there is also a defined line around my neck above the thyroid gland, and the fat I call it starts above the gland and is clear up to under my chin.

    Is she right, is it just fat? Or should I get a second opinion. I’m a little concerned.

    It’s also painful, I’m very fatiqued, more joint pains, and I have a very fast heart rate. I also have other illnesses, they say RA and Fibromaliga, but again, I think my doctor is missing something.

    I really need some help with this.

    Thank you for any advice.

    Take care to all 🙂
    ** If anyone could offer to look at a photo of me/my fat neck to give advice, it would be so appreciated.

    • Thyroid Geek says:

      In many cases the ultrasound is used for thyroid inspection; however many goiters are visible when patient swallows few times with the neck fully extended, therefore a short video footage is more appropriate for visual inspection

  17. Patty says:

    Hi, My sisters are 50lbs heavier than I, but I am the one with the fat neck. I choke on my own saliva. My neck is alway sore in front. Currently so are the glands on the side, and my ears. I was placed on toprol for a heart rate of 185 when I was at work (holter monitor). I was having trouble sleeping with it pounding in my ears at night as well.
    Now I have this fat neck, migraines, edema in my legs.
    My sisters do not have fat necks, and they are really fat. I don’t recall any doc palpating my neck ever.
    I am hoarse as well, for about 6 years now.

  18. Patty says:

    in addition Medical family Hx Mother Graves
    She had 3 sisters, one no prob. one hashimoto, one graves
    children of those aunts one Hashimoto with storm age 20
    One Thyroidtoxicosis, one CA thyroid, one hyperthyroid.

    • Patty says:

      Fam Hx Graves: Mother
      Her sisters Hashimoto and Graves
      of their children Hashimoto with storm age 30, Hashimoto at age34, CA thyroid at 48 hyperthyroid at age 40. Three of these adult children died in 2010 of ovarian CA.
      My neck gets bigger and bigger, tachycardia, seizure (new last MO.) insomnia, pacing, fibromyalgia, forgetful, irritable, and feel on the verge of a panic attack. Also 3 + pitting edema of extremities (they don’t know why).

  19. Janise says:

    Hello, I’m new to the site and this was the first post I’ve actually seen. I’ve joined but my “stuff” isn’t working yet. It’s bedtime for me but I wanted to post because I had a thought while reading your post: perhaps you are looking at necks for two reasons, now.

    A. You’ve discovered this “new” thing that we aren’t supposed to have in the “first world” because we have iodized salt and food injected with iodine. It sounds alien to you and this leads me to B.

    B. You don’t want to be alone. For some strange reason I am embarrassed about having a goiter. I don’t want to tell ANYONE that my thyroid has gone crazy and is now doing the Incredible Hulk on me, but it is. I’ve not broken out the scarves yet but I rarely go out anyway.

    I may just be projecting my own thoughts and feelings but reading your post that’s what occurred to me, you simply want to feel normal again and like you aren’t alone so you are looking for others like you, so to spreak…

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