Thyroglobulin

[lindatcat]

I had a total thyroidectomy in May, 2005.  I had my thyroid removed because of a polyp.  Biopsies were unable to conclusively rule out cancer (and my mother had papillary thyroid cancer and a total thyroidectory several years previous to this).   Upon examination of the thyoid they found 2 small spots of carcinoma (the polyp turned out to be nothing).  I had RA therepy and have a thyrogen (sp?) test every year.   I am currently on 150mcg Synthroid.

I am always tired, my hair falls out and I have muscle weakness and tinnitus.  I saw my endocrinolgist today.  He tells me that this has nothing to do with my thyroid.  Here are my latest labs:

TSH-HIGHLY SENS = 0.027
FREE T4 = 1.4
THYROGLOBULIN AB <20
THYROGLOBULIN 0.3

He said that my thyroglobulin was now being detected (previously it had not been) and this meant that the cancer could be recurring.  He now wants me to go back to my radiation oncologist as well as having another ultrasound done.  He said that my symptoms are more "hypo" than "hyper".  He says that my TSH must remain suppressed.

Does this sound right to everyone?  Is there NOTHING that can be done to make me feel better?  2 doctors have now told me that I have to live with this.  Is this right?

Any input appreciated.  Thanks.  Linda

[gimel]

I think you also need to know the level for free T3.  FT3 is the most active thyroid hormone and it largely regulates metabolism and many other body functions.  It is four times as potent as FT4.  Some patients have trouble converting T4 to T3 so it is important to know both of the "Frees".

[lindatcat]

Hi, thanks for the response.  My radiation oncologist told me that my thyroglobulin was previously undetecable and now it has increased to .3.  She said this is really nothing to worry about but they want to know why it's increasing.  My biggest concern right now is the fact that I don't feel good and I can't seem to find a doctor who's willing to help me.  

[nissah46]

Hi Linda, Your TSH is well suppressed which is what you want to keep the cancer from returning. The thyroglobulin measurement is identical to mine, and I was told that mine was considered undetectable. The doctor said it may never get to 0.  Has yours been at 0.3 since 2005, or was it lower back then.  
Trish

[lindatcat]

Thanks for the feedback.  I already have a call in to the oncologist and will set up an appt for the ultrasound once I talk to her.

What I really want to know is if my levels look "normal".  Should I feel this bad if they are?  2 doctors are telling me that they can't do anything for me because I look good on paper so they have no reason to adjust my meds.  My oncologist told me to to to my endo, my endo told me to go to my gyno, my gyno told me to go to my pcp and my pcp told me to go to my endo.  I've changed endos.  Still no luck.  Where do I go from here?

[MANmom]

Sounds right, if your TG levels rise it could be recurrence, possibly in any thyroid tissue left behind or perhaps your lymph nodes...have an ultrasound and check in with the oncologist.  You can't be too careful.