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EndocrineWeb Community Advice

I am a female and was diagnosed with hyperthyrodism about 3 1/2 years ago. I had all the symptoms and my thyroid was twice the size it should normally be. When i first saw an Endocrinologist he suggested to take the radiation pill and get rid of the thyroid i wasnt to happy with that so i got a second opinion and the second Endo did blood work and ultrasound and said it had 7 nodules growing on it but they were benign so he decided to put me on medication. (Methimazole)started with 7mg pill once a day until my hormone levels started getting better. I saw the Endo every 3 months for the next 2 1/2 years and was getting better he brought the medication down to 5mg to 5 days a week then to 2.5mg 3 times a week until i stoped December of 2010. About less than a year ago i started to notice i have a difficulty swallowing i brought my concern to the Endo and he did another ultrasound but shows my thyroid still large but nothing wrong. Then in a visit to my sleep study doctor i mention it to him since he brings up my thyroid looking big so he decides to have me do an esophgram where it shows my esophagus in my neck looking like an hourglass from the top is 23mm and in the center is 13mm. He says that thats whats making it difficult to swallow. he talks to my Endo and theyre concern to see that so they send me to get a ct scan done and that shows that my thyroid wraps around my esophagus. Both my Endo and the sleep study Dr never seen this before because when the thyroid grows it stays in front or on the side it never closes like a "donut" (term they used). Now they both want me to see a throat surgent to get his opinion on how to do surgery. But im afraid because they never seen a case like this!! Has anyone out there heard or is going through something like this? PLEASE let me know?

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For the last year I have been in and out of the hospital because my throat swells and its hard to breathe and swallow, just last night I had asthma attack and had an x ray of my chest and the radiologist said he has seen something funny on my x ray and should see my doctor as soon as possible. I have noticed a swollen area on thr right side of my throat more and more in the last few months.

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Dear bcbg611 - I hope by now you have found an excellent surgeon to deal with your thyroid. this situation may not be a common occurance- but by no means is it "rare"- basically- it was just ignored too long.

"thats whats making it difficult to swallow. he talks to my Endo and theyre concern to see that so they send me to get a ct scan done and that shows that my thyroid wraps around my esophagus. Both my Endo and the sleep study Dr never seen this before because when the thyroid grows"

I certainly feel your frustration and fear. I have found physicians too often base their diagnosis on the 'easiest' way out. I suppose if they would have discovered your thyroid overgrowth in the years prior, it may not have progressed to the stage of "donut".

Take comfort, however- a good surgeon can take care of this. I also had a "prolific" thyroid- however it not only was around my esophagis, but also compressing my windpipe. My surgeon went in "blind" and discovered it after he openned me up. The surgical notes revealed that he had to literally "separate the tissues"- peel my thyroid off the other two, without damaging my voice or my parathyroid.

The medical community puts information out in the public that we need to advocate for ourselves- sounds good. However, to get the physicians to listen- patients must be willing to be catagorized as "unstable", "histrionic", "depressed" and any other number of negative notes in our permanent medical records prior to them following up on our complaints.

The difficulty with breathing was due to my obstructive sleep apnea. Difficulty swallowing- my hynial hernia. I explained it was more than that- it was getting worse....
Thank God that when my endo did a follow-up ultrasound, the thyroid had continued to grow enough to decide to remove it.

TThe only reason I think he decided to move forward was because he realized I was becoming "unstable" (angry that no one was listening") and his medical liability was hanging out.

Surprise, surprise- when I awoke from surgery- I COULD BREATH!!!! The surgeon said my thyroid was so large it was scary- it was behind my collarbone and they were unable to palpate it externally. The void was so large he had to drain the area at least 3 times with a needle post surgery in his office.

I would've thought 'someone' would have said- "sorry for making you feel like you were insane (and for writing it in your medical notes)". "glad you didnot give up- there could've been very negative consequences" They are unable to admit they were wrong- lest they become "liable" for malpractice.

As patients we have to be willing to be "labeled" to get the appropriate care- someone please make me feel warm and fuzzy about this...

My Official confirmed diagnosis' following many dismissals and "labels"- (first symptoms/diagnosis)
Ideopathic Polypheripral neuropathy (1987/2005)
Cervical Cancer (found 'during surgery')
Grossly enlarged thyroid (found 'during surgery')1994/2007
Fibromyalgia- diagnosed after minimum of 4 years of being
willing to to be labeled ANYTHING they wanted until
they found what was wrong with me- I was a pain in
their a@#.(???1968/2008)
I still suspect there is 'someting' else going on due to
my remaining unexplained symptoms- they never tested
for Graves- and by george- the unexplained symptoms?
that's right... fit like a glove with Graves. (??1986-? ??)

So my message- Do not quit!!!!! Only patients know what "normal" feels like to themselves- listen to your body when it has changed. Even if it is a slow disent. My fibro was a very slow wasn't until one day i looked back at how i felt 10 years prior that i realized i was in 'real' trouble and it wasn't due to 'normal aging' (that is dr BS- unless you are 90).

once again-DO NOT QUIT- patients-
your lives may depend on it.

Zebras create the sounds of hoofs too.

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