Thyroglobulin very high

[Kcolem]

I am a 42 year old female, that was diagnosed with papillary thyroid cancer at the age of 15. It was in my lymph nodes also. In 2009 thyrogubulin antibodies came back in the 300 range and in January 2012 came back at 1168. Dr said wait 6 mo .. Could other conditions cause this, or to low TSH, or should I be concerned cancer has returned. And should I be waiting?

[Kcolem]

Thank you for the insight...I hope to get good new in future. Thank you again!

[redheadaussie]

If you are having rising TgAb's you do need to get checked out.  No other condition raises TgAbs except thyroid tissue or recurrence of thyroid cancer. It is wise to get your thyroglobulin tested by using Thyrogen. A thyroglobulin test on its own will more than likely be negative with TgAb's floating around. They tend to cancel out the thyroglobulin results. Having Thyrogen will raise your TSH and then they can check for any rising/raised thyroglobulin.

Having said all that, it IS possible to have 0 thyroglobulin levels and high raised TgAb and still have recurrence.
Personally I would be making sure this testing is done. You might well have microscopic cells producing thyroid hormone which may not be cancers, but since your history is papillary cancer I would be seeking a thyroid cancer specialist.
Cheers!

[SherBear50]

Thank you for responding.  I will figure out how to check the archives.  I am hoping to only have just a 1-time occurrence, but now that I wear a Medic Alert bracelet if it happens again then hopefully either me or my husband or close relatives will notice that I'm 'declining' and we can contact the rheumatoid Doc who dispenses the type of meds (steroids) that this autoimmune, steroid-responsive disorder requires and I will get fast treatment.  I also am keeping much closer watch on my Thyroid numbers now too.  This has been a very strange happening to me!  I would love to help another person who may be in the midst of misdiagnosis (as I was when hospitalized - at first they thought I was a delusional drug addict in withdrawals or something; And they sort of refused to believe me until my husband made it to my bedside - He had to drive from another State since I was travelling - and only THEN did they open their mind to different possibilities; Granted they didn't have results of the full range of tests that came later, but it was very disconcerting to be treated as sort of a 'shady' person or a person who they seemed to feel was not reporting honestly, though I was)  This was all like a trip through 'Alice & Wonderland'..... I mean, to actually wet my bed?  And to hallucinate?  I never thought that I would experience those things, esp at only age 53!  If I were to here that this happened to someone else I would also be suspect of them at first I guess.   Thanks again

[Kcolem]

I had both thyroidEctomy and Radioactive Iodine(2x, once after first surgery and about 9years later). And it's the thyroglobulin antibodies that are at 1168.

[goolarra]

Did you have a TT and/or RAI?

Thyroglobulin and thyroglobulin antibodies are two different things.  It's your TGab that's elevated, correct?

[goolarra]

I've heard of it, but that's about the extent of my knowledge.  As you said, it's rare, and I don't recall any current forum members who've had it.  Have you searched the archives?  There may be some old posts in the archives, but, unfortunately, the members may no longer be actively participating.

[SherBear50]

I recently learned that my thyroid antibodies were off the charts >1000, after a recent ER hospitalization after experiencing some very strange symptoms (psychotic symptoms mainly).   Fortunately my Doctor knew that I am not a "psycho" type person and so he asked me to test my blood for the presence of Thyroid Antibodies and it came back positive as noted above and I was given a diagnosis that is VERY RARE, of "Hashimoto's Encephalopathy".  
I already had Hashimoto's Thyroiditis, but "H.E." is much more serious, very rare, and very often mis-diagnosed.  This explained ALL of the very strange symptoms that I had, which caused me to drive myself to an Emergency Room in the middle of a drive across several states while driving to visit family members.  Over a period of several days or more I became incredibly sleepy and unable to stay awake in my car, always having to pull over and 'nap'; mental confusion; expressive and written aphasia; jerking type movements at some times; ataxia; and the symptoms worked their way into actual hallucinations of a type (hard to explain without sounding like a total psycho goofball which I am really not) as well as auditory hallucinations, etc.    I was found to have a very high Thyroid at the time, unbeknownst to me, as I was taking my Synthroid, but for some reason my Thyroid numbers had sneaked up to between 11.5 and 12.0  !!      People with Hashimoto's Thyroiditis are supposed to stay at around 1.0, I think and I had accidentally slipped up to almost 12.0.  Shocking.  This made me have to be hospitalized for almost a week while they tried to figure out what was wrong with me.  Lot's more to say, but long story short is that after upping my Synthroid for a few weeks, I slowly began to feel better and brought my Thyroid numbers down to between the 1.0 and 2.0 range,  and now I feel 100% better, am back to 'normal' per my husband and family members and I lost 16 pounds in less than 2 months without even trying.  
Has anyone else ever heard of "Hashimoto's Encephalopathy"?   Please contact me!  Thank you!