Multiple Problems 2+ Years After Tt

Hello guys,

 I just registered because I was hoping someone would be able to tell me what to do now.  I had a total thyroidectomy in Oct 2004 and RAI in Jan 05.  Everything was as good as can be expected (no major complications, felt generally ok).  Then, randomly, around the end of 06 I started to develop strange problems with no explanation as of yet.  I began to have swelling just under the adam's apple about 1in above my scar.  This was initally painful and uncomfortable.  The pain went away, but I still have trouble swallowing/breathing.  Next, about 3 mths later, I had a swelling of salivary glands in my left side.  They also hurt for a while but now do not (still swollen though). Then, I began to hear squirting sounds inside my neck - usually only when physically active.  I also felt massive pains in the right side of my neck just above the chest (around the ligament connecting to it).  Sometimes it was so bad I would simply double over and clutch myself for a few minutes.  The pulse on area is really really strong.  When I tried applying pressure to it two weeks ago, I felt the worst pain yet, and the squirting sound started again.  I felt dizzy and called 911 as I didnt trust myself to drive to the hospital like that.

 Once there, I waited 8 hrs to see a Dr (gotta love the ER).  By this time I felt better (still bad) and was told I likely sprained my neck - while sitting on a couch mind you - and prescribed a damn motrin pill.  I flew home to FL and had an MRI done and my blood work done as well.  There are no longer any days that go by where I feel normal.  I have to clear my throat constantly, and I frequently have trouble breathing.  I burp from the sides of my neck (this is unnerving btw) instead of the stomach.  When I eat spicy food now I hiccup uncontrollably for a few minutes.  I cannot do any physical activity as even walking up my 3 flights of stairs to the apartment makes my heart go crazy (when I look in the mirror I can very easily see my heart beat in my neck just above the chest).  I am seriously approaching the end of my rope as this has been going on for a while now.

 

The MRI said I had swollen lymph nodes and scar tissue, but no one has suggested a solution.  My doctor wanted me to see a psychologist which did nothing but anger me - I did not just decide to make this up 2 years after surgery.  I seriously do not know what to do anymore (have also had a laryngoscopy, CT scan, and ultrasound).  My quality of life is severely diminished right now (no physical activity, discomfort much worse when laying down so sleep is tougher, pain, etc).  

 

Anyone have any ideas?

 

-Ryan 

I am so sorry you are going through so much.  It must be so hard to think that after going through all you've been through so far that you still aren't done yet.  I have been trying to search for some of the things you have been talking about and haven't had much luck.  I did find this link:

http://www.drugs.com/forum/173898-post3798.html

 Have you taken any medication that you didn't mention?  I am not exactly sure of all the uses for this drug but maybe you might have taken it at some point?  If this is completely useless I am sorry.  I have been searching all over the internet for something to help you with.  Please take care of yourself and I hope someone has some real answers for you. 

 

On 5/16/2008 lrquake wrote:

I am so sorry you are going through so much.  It must be so hard to think that after going through all you've been through so far that you still aren't done yet.  I have been trying to search for some of the things you have been talking about and haven't had much luck.  I did find this link:

http://www.drugs.com/forum/173898-post3798.html

 Have you taken any medication that you didn't mention?  I am not exactly sure of all the uses for this drug but maybe you might have taken it at some point?  If this is completely useless I am sorry.  I have been searching all over the internet for something to help you with.  Please take care of yourself and I hope someone has some real answers for you. 

Hey thanks for helping!  It has been extremely frustrating, especially with doctors trying to push the psychological angle instead of focusing on treating me.  As for what drugs I am on: only synthroid (.175-.200mg,  been tough to nail exactly what dose I should take).  I used to smoke (not cigs) occasionally but stopped as it seems to make it - slightly - more uncomfortable.  Aside from that, antibiotics a while ago and just the thyrogen tests.  

 I really appreciate you trying to help me, I am hoping my surgeon (who should be getting the new test results shortly) will have something to tell me that isnt: You look fine.  This seems like a great community and I am glad I stopped by here! 

 

On 5/16/2008 sargonnis wrote:

 

On 5/16/2008 lrquake wrote:

I am so sorry you are going through so much.  It must be so hard to think that after going through all you've been through so far that you still aren't done yet.  I have been trying to search for some of the things you have been talking about and haven't had much luck.  I did find this link:

http://www.drugs.com/forum/173898-post3798.html

 Have you taken any medication that you didn't mention?  I am not exactly sure of all the uses for this drug but maybe you might have taken it at some point?  If this is completely useless I am sorry.  I have been searching all over the internet for something to help you with.  Please take care of yourself and I hope someone has some real answers for you. 

Hey thanks for helping!  It has been extremely frustrating, especially with doctors trying to push the psychological angle instead of focusing on treating me.  As for what drugs I am on: only synthroid (.175-.200mg,  been tough to nail exactly what dose I should take).  I used to smoke (not cigs) occasionally but stopped as it seems to make it - slightly - more uncomfortable.  Aside from that, antibiotics a while ago and just the thyrogen tests.  

 I really appreciate you trying to help me, I am hoping my surgeon (who should be getting the new test results shortly) will have something to tell me that isnt: You look fine.  This seems like a great community and I am glad I stopped by here! 

I think you should continue looking to find someone who will help you!  It's crazy that they can see swelling and for you to have such symptoms and not have someone give you answers.  I'd demand every test that you could have (if your insurance pays).  I don't blame you for being insulted for being told to see a psychologist---I would be insulted, too, if my doctor suggested that.  You have had thyroid cancer for heaven's sakes....not a pmple!   They need to help you.  See an oncologist if you have to---mine seems more aggressive than my endo + surgeon.   Good luck and keep us posted!!   Tara

 

 

So what exactly is the deal with thryoid cancer patients seeing an endo and not an oncologist?  What's the diff? 

By the way....does anyone know about taking antibiotics while on the LID?  I have a swollen lymph node in my cheek for some odd reason--so I was prescribed an antibiotic--and endo said it was okay to take antis during LID if they did not have iodine in them but I just want to make completey sure.  Any ideas on this or has any one done/heard of this?

I don't see why antibiotics would interfere with LID.  There's no iodine in them.  To answer your question about endos or oncologists, I have heard some people see one or the other.  I think the endos deal with the treatment for thyroid cancer much more frequently. .  And they are the ones to get our synthroid dosages right and do the testing.  I have seen both my endo and oncologist just to see if they are on the same page.   They are and that's a comfort.  I would say to do whatever you are comfortable with and who you have the best rapport with.

Well that's good to know. 

I was just never referred to an oncologist....just the endo....

I guess there's no use in getting a second opinion...:)....feel like absolute u know what so they must be right!

Guess I will take my antis--which I don't want to really take 'cause I am sure they will make my stomach upset--and try to fix that problem. 

Sigh.  Deep Breath.  It will be okay.

I would suggest that you get another surgical opinion. Your post surgical healing seems less than ideal. Describe your symptoms to the new surgeon. The suggestion that you should see a psychologist is ridiculous and insulting.

 

On 5/16/2008 lrquake wrote:

Well that's good to know. 

I was just never referred to an oncologist....just the endo....

I guess there's no use in getting a second opinion...:)....feel like absolute u know what so they must be right!

Guess I will take my antis--which I don't want to really take 'cause I am sure they will make my stomach upset--and try to fix that problem. 

Sigh.  Deep Breath.  It will be okay.

 

Thyroid cancer is quite different than most other cancers.  Oncologists can handle the cancer side of your treatment; RAI, WBS and drastic treatments if the spread was agressive.  But an endocrinologist speacializes in the maintanance of your organs; spleen (diabetes), thyroid, liver etc.  The oncologist does not specialize in treating you and monitoring you for the rest of your life.  The endo has to make sure your hormones react properly so your body doesn't know your organ is missing; oncologists are not trained to do that.  If you go to an oncologist, their job is over once you've had your WBS and no serious uptake was observed.  If there is obvious uptake, spread, then they will continue with the treatment for cancer, but your endo still has to handle the blood tests and hormone maintenance.

You are absolutely doing the right thing consulting with a new surgeon. Good luck to you!