Thryoglobulin Levels And Neck Pain After Tt

Phew, where to start. I am unfortunate to have to us the Vet Affairs health system.  My ordeal began after finding a huge lump in my throat while brushing my hair in the mirror Jan 2007.  I am an Army Vet who had a TT in Aug 2007.  I had a papillary carcinoma.  Because the surgeon thought it was well contained I did receive the RAI and for months now my health has markedly declined.  I have a lot of pain down the sides of my neck with swelling and very bad pain in my collar bones.  I am being treated for "muscle spasm" because that is the only thing they can equate the pain too.  I am taking pain meds, muscle relaxers and my Levo. .175 (after going from.125 post TT, to .150 feeling like a slug, then my present dosage) and feeling worse week by week.

 1st question for anyone who knows about thyroglob. levels.  What is an indicator that it has spread?  Mine are at 5.9.  My pain and swelling does feel like it is in my lymph nodes that travels to the tips of my fingers in flashes. What else do I have to look for as an indicator for the spread?

 I had a CT scan with contrast die for my neck and shoulders yesterday and just feel horrible after it.  A part of me hopes that something does show up I can stop feeling like nobody understands how bad I feel. I am stuck in a health system that I feel has not taken my cancer battle very seriously.  I am only 32 years old and I am not working due to the pain and feeling bad, I had a great job running a staffing agency after a stellar military career.  I have had to drop everything to fight for my health.

 I also still have vocal paralysis and a restricted airway, unable to play any sports which are a great stress reliever for me.  Vacuuming my house house makes me feel like I want to pass out.  I also battled really bad hypocalcemia after the TT and that has finally tapered off.  I feel like every bad side effect from this has happened to me and the hits keep coming.

 I just want to know if it has spread, because until I find out my life is completely on hold.

 Any advice would be great-

Shay 

First I am so sorry that you are feeling so poorly!  It is pretty stressing to be told you have cancer and then be treated like it is no big deal because it is an easily cured cancer.  What they don't tell you is the dramatic way your life will change because of how horrible you feel after going through it all.

If you had the RAI you should have an undetectible level of thyroglobulin in your system or it can be and indicator that the cancer has returned.  If you didn't have the RAI then there is no reason to even do the thyroglobulin test because there is no way to get 100% of the thyroid tissue during surgery.  Any remaining tissue would cause you to have an elevated thyroglobulin.  My understanding is that the thyroglobulin test is only valid if you have had RAI.

I would try to seek out a patient advocate for the VA.  I know some agencies have actual patient advocates that work on their behalf.  Nothing irritates me more than our veterans getting substandard care! 

Good luck and I hope they find out soon what the problem is!

Hello, I had a total TT a year and a half ago. One month after that my Thryoglobulin was at a .2 which my Dr. was very happy with. She told me that we have to keep that at a 0 so the cancer doesn't come back,but that the RIA was still in my body and would kill the rest off.

Well I had to go to a new Dr. he took my blood and now it's at a 2.4. I was like oh no its back. He did a body scan didn't see anything checked my blood again a few months later and it's still at a 2.4. So yes I'm very worried and I understand why you are. I haven't felt the same since surgery.  My story is long but I'll just keep at your topic of TG level. Don't just sit back and let them tell you things . If you don't feel something is right it isn't. GOOD LUCK ! REDWV67 *_*

On 3/8/2008 REDWV67 wrote:

Hello, I had a total TT a year and a half ago. One month after that my Thryoglobulin was at a .2 which my Dr. was very happy with. She told me that we have to keep that at a 0 so the cancer doesn't come back,but that the RIA was still in my body and would kill the rest off.

Well I had to go to a new Dr. he took my blood and now it's at a 2.4. I was like oh no its back. He did a body scan didn't see anything checked my blood again a few months later and it's still at a 2.4. So yes I'm very worried and I understand why you are. I haven't felt the same since surgery.  My story is long but I'll just keep at your topic of TG level. Don't just sit back and let them tell you things . If you don't feel something is right it isn't. GOOD LUCK ! REDWV67 *_*

SORRY IT'S RAI ......RED

I am very sorry about your pain, and I feel you friend.  I myself was diagnosed @ the end of 2006 with stage 3 thyroid cancer, and I have had 2 radical neck dissections, where they cut me from ear to ear, removing 45 lymph nodes.  22 on one side, and 23 lymph nodes on the other side. I was in surgery for the leftside of my neck for 12 hrs, then two wks later they did my right side of neck and they opened up the left again to make sure they got it all.  I had radioactive Iodine and now am having to do the scan in a month again. Being off of the Synthroid is the worst. I just want you to know that sometimes I feel like no one understands why I am still in so much pain. I go about my day by taking my pain medication faithfully every few hours, because as soon as it wears off, I feel the choking feeling and I feel like someone is sitting on my neck. It feels like the blood is all rushing to my face, and to top it off, I will not let anybody touch my left side of my neck or my cheek and shoulder. Almost 1 1/2 years later my left side still feels like it was all burned.  I don't take muscle relaxers, but am on the pain medication.  If it weren't for the Pain med I would not even get out of bed.  I did go back to work 3 months after surgery. I worked for 1 year 1/2 and now took a break again to prepare for this body scan and RAI. Really am sad to go through it again.

Hi,

Your message was written in February, so by now you proably have new information. How are you doing? I am writing because my daughter had thryoid cancer one year ago. She had a total thyroidectomy and RAI treatment. Her blood work and full body scan at one year was normal, but she still has neck pain and now she feels tingling to her finger tips, as you describe. I am wondering if you have any information about the cause of this sensation?

Again, I hope you are doing well. 

Joann