Hi, (sorry long post)
I am really glad I'm not alone with the thymus thing! Also I think there are a couple of others on the board too with similar experiences....At the end of Apr/beginning of May they found a mass in my chest, just behind the sternum with a CT of the chest - (i have thyroid nodules and hypo symptoms, but am negative for anti-bodies so I don't think it's hashis but I wonder sometimes)....anyway, was yours found on regular x-ray? Since then I've had an MRI and two opinions from oncologists. They say it is consistent with residual thymus and will repeat the CT scan in August to be sure there are no changes....I was encouraged that both oncologists said the same thing (they are in different cities) - but it was one of the most scary months of my life - I am greatly relieved now however....I too am having pressure at the base of my throat, trouble swallowing, shortness of breath, and a choking feeling - the endo thinks my seven nodules are too small to be causing this (I would like him to have them in his neck and try to swallow! so that's why he ordered the CT of the chest. Other things can cause this choking business, like some mass or tissue in the chest, acid reflux, easophegeal (sp) spams, and anxiety! (Like I don't have anxiety with all this going on)...anyway they sent me also for a dysphagiagram which is a fancy name for a swallowing test with x-ray and I passed that one - next stop is an ENT on Tues....I am 40 yrs old - For most people the thymus gland atrophies and dissapears by age 20 - how old are you? But for some a residual tissue remains - as is the case for me - who knows maybe my body needs it - it's function has something to do with immunity - I don't think it's causing the choking because the choking feeling started in January and if it's thymus, I think it's been there longer than that and would have caused it before....so anyway - I am still in the process of figuring all this out - but wanted to share my experience with you....my understanding is thymus is okay to leave in place - how big is yours? I think mine was like 8 mm but I don't know the other dimensions - it appeared as an L-shape thing on the CT scan....Please let me know if I can help in any way - After what I went through I would like some good to come of it if I can help someone else....also because of the location - it is rather difficult/dangerous to biopsy or remove so that's why I agreed to the check it again in three months plan....
PS I also have hoarseness all the time...
Interesting. I too have hashi's and my doc suspected a thymus problem due to how low my "goiter" is in my neck. when my thyroid swells, I get lots of pain about 1.5 inch below my collarbone and towards the right side of the middle of my chest. I always thought it was my thyroid swelling up and causing pressure on my neck muscles causing that type of transient pain under the collar bone. Im still at a loss what it is though. I know I have a goiter where a goiter should be but that doesnt explain the pain in my upper chest when my thyroid swells up. I too get couging, wheezing really bad from that area....its not like a wheeze in the lungs cause my lungs are clear...its coming from either my thyroid area or really low in my neck. Interesting.
I had X-ray that came back "inconclusive" for mass, lungs clear of active disease.
Barium swallow came back unremarkable.
Do either of you have the bump in the center of the chest? I have been researching the Thymus and it's role in autoimmune. It's very interesting information. Can see a definate link where it would play a roll in the thyroid destruction.
I am really nervous about the whole situation, I heard removal was a bit tricky. With the compression problems I am having and collar bone displacement more than likely mine will have to come out.
We'll have to keep each other updated as it all progresses. I go for the Ct with contrast on the 14th. A bit nervous as to what the iodine will do to my thyroid. I am at the hashi stage right now where I am mostly Hypo.
When my thyroid swells I feel a bad pressure under the collar bone. Feels like a big ballon inflating under there. The chest pains are off and on right in the center beneath the visable lump.
Its all interesting and yet at the same time SCARY.
How old are you? - If it is thyroid tissue behind the sternum (substernum goiter) - it's my understanding they can take it out a little easier since it's connected to the gland in the neck - sort of pull it out from the neck area rather than a more invasive procedures...
I had two CT scans in three weeks time and I swear it made my goiter better...but no doctors agree with me - they say the amount of iodine is too small to have that affect on it....but I am a believer...
My mass wasn't a visible bump on the chest - so that it different - but I do have chest pains that I don't know if they're heatburn or thymus or what....
My understanding is that CT is the best way to identify this sort of mass....please let me know how it comes out - and don't freak on the radiologist's report - get the scoop from your referring physician...Radiologists have to put everything on there is MIGHT possbily be - so take that right to the MD and get his/her interpretation...I didn't do that and went crazy for several days trying to decode the radiologists' lingo....my report was anterior mediastinal mass....they suspect thymus tissue....
Will be thinking of you!
Take care and please let us know....
I am 36. They don't think it is the Thyroid. He is almost sure it's Thymus.
It wouldn't bother me as bad if it wasn't causing the deformities to the chest and collarbone area, and the choking sensations are awful.
Anyway I will keep updating as I find out more. I was hoping it might have been part of the scholiosis(sp) I was Dx'd with as a tot. But the curve is so minimal. I had the Internist check it yesterday before he called the Radiologist to discuss my case and the next steps to take. He checked and said it's still just a slight curve but nothing that would cause the changes to the chest areas.
The hurry up and wait game is so frustrating some times. It's harder when one doc sends you to a new doc and you start all over again.
There isn't a whole lot of info out there about the treatment for this. I am gonna ask if maybe steroids would shrink it??
Thanks for all the concern. I will keep you all updated. I was hoping I could find someone who has gone through the whole thing and knows what is in store.
Someone pointed me to this information that I found very interesting.
"Brinkane A, Bellamy J, Leroy-Terquem E, Levy R.
We report an association between a thymus tumor and autoimmune thyroiditis. This association is probably related to loss of immune control secondary to loss of thymus integrity. A 48-year-old woman was hospitalized for thoracic pain. Her past history included thyroiditis treated by L-thyroxin for two years. The chest x-ray demonstrated a mediastinal opacity which was confirmed by computed tomography. Surgical resection was performed and histological analysis of the surgical specimen confirmed the diagnosis of lympho-epithelial thymoma. Thyroid immunity tests demonstrated the presence of anti-peroxidase antibodies confirming the diagnosis of Hashimoto's thyroiditis. Chest x-ray and CT-scan are indicated in patients with autoimmune thyroiditis to search for a thymic mass. Conversely, search for autoimmune thyroiditis is warranted in patients with an identified thymic mass."
Info found at Pubmed. CAN I POST A LINK TO THE ARTICLE????
I will keep digging for info and post what I find In hopes to help all of us whom are going through similar situation.
Last edited by lilchardae; 06-10-2005 at 01:08 AM.
I didn't notice anything after the CT - but then I had a second one about a week later and I did notice that my swollen neck shrunk! My endo said it isn't enough iodine to affect the thyroid - but maybe having two of them was! And it was confirmed with ultrasound - but my endo thinks the synthroid finally shrunk it after 1.5 yr of treatment - maybe- I don't know if it messed with my levels, but my nodules and thyroid did indeed shrink! I recognized myself in the mirror for about two weeks - however, I think it did throw my hormones for a loop - I was under a lot of stress though so hard to say what was what - but I did miss my period - since I'm on the pill - that was highly unusual for me - so it told me my hormones were doing something/adjusting - I'm not pregnant - but my husband was getting ready to leave for a long period of time and I'm under extreme pressure at work - so it's quite possible that all that stress caused the flux in hormones - the last time I missed a period - it was stress....
Are they doing the neck and chest? That's what I had - wasn't bad at all really - I had a good technician who was very reassuring....they had me put my arms up over my head and resting on a pillow for the chest part and then put them down for the neck part....they will help make sure you are comfortable - but if you not - tell them - it doesn't really take long - not anything as long as an MRI....The iodine gives you a sort of warm feeling - but it goes away pretty quick - it's not unpleasant or painful...does that help? Please let me know what they say - when do you follow up with the doc that ordered the CT?
Dr just said CT scans with contrast. He and the radiologist chatted on the phone during my dr. appt. on the 8th. They just said be there Tuesday.
My next appointment isn't until July but Doc said he promised he wouldn't leave me hanging till then. Will let you know what I find out. I wish they could give you a bit of info when they did the scans. Sure would make the wondering easier.
Yeah - they don't tell you anything during the scan - I guess there's some law about that or something - but please do let me know what your doc says - we can compare notes....I will keep you in my thoughts and prayers!!
I am hoping to know by the weeks end. It's a strange situation to be in. On one hand you sit here hoping they don't find anything and in the same breath you want something to show that helps explain all the problems.
Very sticky situation Everyway you look at it.
Will post tomorrow after the scan. Maybe this thread will help others as well.
CT scan Finished. I went in there, They started IV. Ran me through the Scanner. Injected Iodine, Warm feeling started up arm from Iv moved to head, neck, chest, Then I felt like I was peeing my pants. Ran back through Scanner and I was Done.
Very strange feeling. Not painful at all just strange. Kinda made me feel like I was just waking up. A bit groggy and weak. My neck is swelling a bit now and voice is changing again, but nothing to unbearable.
Now we wait. They said about 48 hour and Doc should have the reports.
Wasn't no where as bad as I expected. Will see If it messes up the thyroid numbers at all.