Substernal Thyroid/Goiter

[WisconsinLW]

Hi - 42 year old female,
I have been on thyroid meds since 1996.  Over the last few years I have often felt pressure on the right side of my chest, radiating down my back - usually by end of day.  Within the last month or so things have gotton worse (pressure on RIGHT side of chest only, feel like I have a lump in my throat, squeezing feeling on my right side of neck, coughing, don't feel well while lying down, strain on my voice, upper back pain at end of day - RIGHT side).
  I had an US done in 1999 and another one last month (8/07).  The report stated that my "gland appears diffusely more heterogeneous in today's study."  I have a mutinodular goiter with "no discrete nodule on the left side." "One well circumscribed discete nodule is identified at the right upper throid lobe that measures approx. 7-8 mm in maximum diameter, without definite interval change."  The right thyroid lobe measures 4.5 x 1.5 x 1.3 cm (calculated volume of 4.9 mL).  The left lobe measures 1.0 x 4.2 x 1.2 cm (volume of 2.6 mL).  Isthmus measures 0.1 cm in thickness.
My (FP) Doctor said - we'll keep an eye on it.  Yet, no explaination of my symptoms and how to relieve them.  So then he suggested that I have a X Esophagram and GI done - which was pretty much normal but stated "There is a minor extrinsic mass effect upon the right side of the piriform sinu, at the C4-5 level.  This may due to the enlarged thyroid."  
I then did some more research and my symptoms pointed me in the direction of a sub-sternal thyroid/goiter.  I have been quite uncomfortable the last month!!  
So my questions are:
(1) Do you think I have a sub-sternal thyroid?  Do the differing (right versus left) measurements confirm it (no comment was made by my Doctor regarding the differences).
(2) Do I need to confirm it with a CT?  If not - what test confirms it?
(3) Could this pain eventually go away, can it shrink back to normal?? (ie) Does stress play a part with the symptoms?

I feel a bit strange doing this research/'self diagnosis' - but it is bothersome enough that it is affecting my well being.  I just can't accept we'll keep an eye on it as an answer.

Any feedback is greatly appreciated!!!
Thanks

[Venora Moonwind]

I had a sub sternal goiter. they had to go through my sternum to get it out. if you are having problems breathing and get a choking feeling it probably is a sub sternal goiter, You cnat shrink it.it must come out thorugh surgery. sometimes they can take it out through the TT incision. Dont wait to get this taken care of. Mine was tennis ball sized and had pap cancer in it.
Love Venora

[imedicmommy]

One more thing, It is up to you to be an advocate for your own health. No one knows you better than you and no one will work as hard for you as yourself. I'm lucky, I have really good docs that listen well to what I have to say and are responsive to my questions but there are several on this board who have not been so lucky. I say keep reading and questioning. Doctors don't know everything, that's why they call it "practicing medicine" and anyone who thinks they do know it all is dangerous in my opinion.

[imedicmommy]

I had a substernal goiter which was first seen on something as simple as a chest xray. I didn't have compressive symptoms but I did have a cough and chest pain. It was also visible during a chest CT.  As I understand it, and I'm not a doc, the differing measurements don't have a lot to do with it. Your right side is slightly larger than the left but not the worst I've ever seen. The thyroid can simply grow down the esophagus and into the chest so I don't know if your measurements have anything to do with it.
On a personal note, I had a huge goiter on the right side 8 x 6 x 11 cm that the docs were so concerned with that it took until CT's before 2nd surgery for them to figure out something was going in my chest as well. It's well worth getting checked out as the thyroid can deviate your trachea and esophagus and since the sternum is a bony structure if it continues to grow it could cause compression of your airway and major blood vessels. Like I said mine showed up on a simple chest xray so that might be a suggestion you could make.
I had completely normal labs.

I hope this helps a little bit and good luck!

[borninquisitive]

I can't offer help here but I certainly think you would be having difficulties, considering. From what I understand 4.2 in size (one dimension) is considered "normal."
Yet, you have quite a nodule. My recommendation would be to post to Dr. Lupo regarding this. Early on the week-ends seem best to post. I think you need a professional opinion. If you go this route, share your most current labs (TSH, FT3/4, antibodies etc.) and medication.
It just seems to me that your Dr. is in the dark.

Best!
~Kate