I think I may have Hashimotos Disease / Thyroiditis

[Joni686]

For a couple of months now swelling would come and go in my neck.  The best way to describe the area is (if I had an adams apple it would right under it).  In the last 3 weeks it has been swollen and hasn't gone down and I almost constantly feel like I am going to choke or my airway is being cut off a bit.  I googled and found an article about thyroid nodules and Hashimotos Disease and it describes EXACTLY what I have been going through.  I was also dx'd last week with hypothyroidism.  Is there anyone out there that can tell me if they have this and if they feel like they are choking?  Is this dangerous?  I have lupus and have been in a flare with two hospital visits this year regarding the lupus attaking my heart.  I am wondering now if it isn't also attacking my thyroid.  Does anyone have any experience with Hashimotos or thyroiditis?
Thanks,
Joni

[mercygracious]

Hi Joni,

I haven't got to talk to you in a while.  I am sorry you are still having these problems.  My most recent problem is this pulse I feel in my head and body and I feel like I am moving all the time.  It is scary.  I don't understand what is going on!  I feel your pain in regards to doctors and what they put us through.  It is unbelieveable to me some of the STUPID stuff they come up with!!!  I think they need to go back to school.  I recently went to a Rheumy at a very prominent local hospital and thought I was going to finally get some good treatment.  Well, was I ever wrong.  This lady did nothing for me except try to make me feel stupid and she asked why I was there to see her as my symptoms sounded more neurological in nature.  I told her that is what I thought but that I had recently learned through other docs and reading material that this is not always the case as with vasculitis.  With vasculitis your symptoms can be more neurological in nature especially in regards to what area it is attacking DUH!!!!!!!!!  SHE BEING A RHEUMATOLOGIST SHOULD HAVE KNOWN THIS BETTER THAN ANYONE!!!!!!!  BUT, SHE ACTED AS THOUGH SHE DIDN'T .  She preceded to tell me that I didn't have CNS Vasculitis.  Well, guess what.  I never said I did.  I never said anything.  But, I do believe I have some type of vasculitis and it would be her JOB TO FIGURE OUT WHAT KIND!!!!  I AM SO TIRED OF DOCS PUTTING WORDS IN MY MOUTH AND ACTING LIKE I DON'T KNOW WHAT MY BODY IS TELLING ME!!!!!  I THINK WE ARE ALOT SMARTER THAN THEM IN A LOT OF WAYS EVEN THOUGH THEY ARE THE ONES WITH THE DEGREES.  I HAVE BEEN TO MANY DOCS THAT HAVE ACTUALLY ASKED ME IF I WAS A DOCTOR OR NURSE BECAUSE I KNEW SO MUCH ABOUT A PARTICULAR SUBJECT!!!!!  THAT IS PRETTY AMAZING!!!!!  TOO BAD THEY DON'T KNOW WHAT THEY SHOULD SO THEY CAN HELP DO WHAT THEY ARE GETTING PAID TO DO!!!!!  I AM LAID OFF FROM MY JOB AND HAVE NO INSURANCE .  I WENT TO A DOC THE OTHER DAY AND TOLD THEM I HAD JUST PAID ALOT OF MONEY UP FRONT ....AT THE DESK....MONEY THAT I DON'T REALLY HAVE TO JUST THROW AWAY ON SOME DOC THAT COULD CARE LESS ABOUT ME OR WHAT I AM GOING THROUGH.  I LET HIM KNOW THAT I DIDN'T APPRECIATE IT AND THAT IT WAS OBVIOUS THAT HE DIDN'T CARE TO HEAR WHAT I HAD TO SAY.  WELL, HE MADE ME CRY AND I HATED THAT.  HE ACTUALLY HAD THE NERVE TO ASK ME ALOT OF STUPID QUESTIONS LIKE WELL WHAT IF YOU DO HAVE SOMETHING, THEN WHAT?  THEN HE ASKED ME WHAT IF THESE TESTS CAME BACK ABNORMAL THEN WHAT?  THEN HE PROCEEDED TO TELL ME THAT EVEN IF YOU GET A DX MEDS CAN MAKE YOU SICK AND LA LA LA!!!! WELL, DUH.....BUT I STILL WANT TO KNOW WHAT I HAVE JUST LIKE ANYONE ELSE.  UNTIL I FIND OUT WHAT I HAVE IT AFFECTS EVERY ASPECT OF MY LIFE LIKE JOB AND FAMILY.  UNTIL A PERSON GETS A DX THEY HAVE VERY LITTLE HOPE OF EVER GETTING ANY KIND OF UNDERSTANDING FROM ANYONE ABOUT ANYTHING.  THAT IS JUST HOW IT IS.  CAUSE NO ONE BELIEVES YOU.  THEY SAY "WELL, YOU'VE BEEN TO ALL THESE DIFFERENT DOCS SO YOU MUST NOT HAVE ANYTHING".  I CANT BEGIN TO TELL YOU HOW ANGRY THIS MENTALITY MAKES ME.  Well. thanks for letting me vent once again!!!!!UGH!!!!!!!!!

[Joni686]

OK, I got a call today from my Internest today that just reminded me of how ridiculous doctors can be.  They evidently didn't find anything in the ultrasound on my neck.  YES, IT TOOK THIS LONG FOR THE DOCTOR TO GET BACK TO ME SINCE THIS ORIGINAL POST.  And I had to call them and they didn't even have the results, they had to call the hospital and get them rather than be on top of things and have them in my file.  If I hadn't have bugged them about the results I wouldn't even have them yet.  But besides all that.  The doctor had the nurse tell me that they found nothing in the ultrasound and that I can take, if I want, Ibuprophen or Tylenol for it.  I said, "You mean I should take Ibuprophen for the swollen neck and lump sticking out of my throat?".  "First of all she should know I can't take Ibuprphen because I am on 400mg. of Celebrex a day and secondly, how is that going to help the KNOT I HAVE STICKING OUT OF MY NECK AND THE SWELLING OF MY ENTIRE NECK?"  If I didn't know that I can't take ibuprphen with celebrex that doctor would have me frying my liver right now.  And how in the world she thinks that Tylenol would make a knot in my neck (THAT IS STICKING OUT THAT EVERYONE CAN SEE EXCEPT HER I GUESS) go away and stop choking me, I just can't comprehend.  I have liked this Internest, she is nice and talks with me but I have wondered about her experience since she mentioned being in that practice for four years.  I believe now that she is inexperienced.  I spend all day trying to ignore my neck swollen and I toss and turn at night trying to get in a position where I can fall asleep and not be choking.  I wake up and it;s the first thing I notice.  I FEEL LIKE I AM BACK IN THE BEGINNING WHERE I HAD TO CONVINCE A DOCTOR SOMETHING WAS WRONG WITH ME.  Doesn't having lupus attack your heart count for some attention to the rest of your body?????  I feel like I am back to square one at finding a good doctor.  I am going to see my PCP on Thursday.  She is awesome but there is just so much that she can do.  Once again, I am so let down by these so called specialist !

[Joni686]

Hey girl,
I just wrote you on another form but thank you so much for the kind words.  You are a sweetheart and you help me a lot as well.  I am so happy you got your weekly dose of inspiration.  It is soooo important to stay strong and know who you are and what you believe.
I have back and forth with kygirl.  She is very sweet and has good input as well.  I so enjoy my special friends here on medhelp.  I kind of got away from this site for a while.  I didn't have a working laptop and I can't sit in the study at the desk, it is just too hard on my hips and back.  But now I have two laptops.  lol  So I can lay on the couch or in bed and be in touch.
I had a very nice day today but this evening I am having a very strong choking feeling.  I have been putting it off but I am about to take a xanax and go to bad.  I hate to give into medications like that but I know I will not sleep without it with this swollen neck.  I took a measuring tape and measured my neck and wrote it down and I am going to start doing that and keeping track.  Now if I can just figure out if it is a food I am eating, my thyroid or just the dang lupus.
Anyway, I am about done for the night.  Do you work or are you at home during the day?  I am disabled so I am home.  Maybe we can talk more tomorrow.
Nite

[mercygracious]

Hey Joni,

Good to hear from you.  I hope you are feeling better today!!!!!!  I certainly hope that is not the case but it is a possibility.  Have you seen an ENT?  Maybe they could be of some help in that area??  I guess it is worth a try anyway.  I hope it is just your thyroid though.  You really have a great attitude for what all you are going through.  You give me and lots of other people inspiration like you wouldn't believe!  I sure hope these docs can get you to feeling better real soon!!!  Today for me was a better day as it is the Lord's day and I got my weekly dose of hope and inspiration from HIM!!!!  He is all I have and I get my strength and comfort from Him and Him alone.....and you!!!  God Bless You!!!  

PS Did you talk to kygirl yet or read her posts?
Mercy

[Joni686]

Hey girl,

You read my mind exactly.  I am thinking that maybe because the vasculitis and inflamation is around my heart and last week my C Reactive Protein was still up I probably am swelling in my neck and throat tha same as my heart.  Thanks for thinking of me.

How are you?

[mercygracious]

Joni,

Your feelings of choking in the throat and neck area could also be the lupus or vasculitis as well.  If the thyroid meds help then we can get a better understanding of what is causing this.  Good Luck!!

[mercygracious]

Hey Joni,

How are you doing today?  I haven't gotten to talk to you in a while but I hope you are doing better.  I experienced the Hashimotos and low thyroid in the beginning of 2006.  I didn't know what it was but I knew it was just another of the many symptoms that I have been acquiring throughout the years.  I started feeling like a lump was in my throat sometimes and had a little difficulty at times swallowing.  Also, whenever I would cry it hurt soooooo bad!!!!!!!  It felt like both sides of my throat were literally being pulled apart!!!!!  I was scared.  That is when I went and had a physical done and he said I think I know what may be causing your symptoms.  Well, yes it is true that it may have been causing those symptoms but I had many symptoms that I knew were not attributed to a thyroid disease as this doctor stated.  He wanted to get credit for coming up with a diagnosis but I knew otherwise.  Anyway, he put me on too much thyroid med and I knew he did.  I started breathing real fast and had trouble sleeping and was very weak with no energy (very lethargic)  so I told him and he cut it down by 1/2.  Well, that was still too much so at that point I took matters into my own hands which we as patients have to do alot of and I cut it down to the bare minimum.  That got my levels back to normal but they were falling so much that I knew that if I stayed on the thyroid meds that I would then have an overactive thyroid instead of underactive .  So I stopped my meds even though my Endocrinologist told me to continue to take them.. I swear I don't think these doctors know what they are talking about half of the time.  I wish they would all go back to school for our sakes.  At one point when I was taking too much thyroid med I felt like I was having a heart attack all day at work.  I felt like an elephant was sitting on my chest literally and I ended up going to the ER that night.  They did an EKG and said well this must be stress.  I said no it isn't stress it is from the thryoid meds because I had read that thyroid meds could mess with your heart and such.  Well, they didn't acknowledge this at all but I knew what it was.  The next day I went off the meds.  My thyroid has been normal since.  Sorry for the long story but I hoped it helped.  Hey, also you need to talk to kygirl59!!!!  She has vasculitis not sure what kind as I just read her posts today.  She is taking Cytoxan and her hair is falling out.  I told her I wanted to hear what she had to say about Vasculitis.  I also referred her to the Vasculitis Foundation website which is loaded with good info.  You need to check it out as well!  I think the three of us together probably have alot to discuss and especially you and her!!!  I am glad I found both of you on here!  She stated she has lived with Vasculitis for years and has been on and off therapy.  She didn't mention taking the Imuran but I told her she needed to look into it.  Check out her posts on here!  Hope you are having a good day today.  I am having a hard time dealing with life!  I have no emotional support from anyone and that is why I am so thankful to find the both of you.  I hope we can all learn and help each other!!!  Talk to you soon, okay!!  :)