thyroglobulin 411

teamwink

I just got results from my bloodwork during RAI treatment (about 5 days into it) and the thyroglobulin levels are detectable, at 5.7. I'm a bit freaked out and my endo does not like me asking questions, so I thought I'd ask... how bad is this? I never received any results from my scan, so I am totally in the dark...TSH was at 3.28 is that is relevant (?)

MLG

A year ago my bloodwork was
A year ago my bloodwork was a little higher than that number. I had a body scan, ultrasound, biopsy, PET/CT and they all showed nothing.
My doctor didn't like the number, but nothing else he could do since all my scans showed nothing.
Now it has been a year and am due for my next yearly body scan at the end of September.
(It's been 3 years since my TT w/lymph node removal. He said I will have to have yearly body scan for up to 5 years since the cancer spread to my lymph nodes.)

Michelle

alapah

labs
A Tg level of that amount at this phase of the RAI cycle it probably doesn't tell much. When was your surgery? Is this your first RAI?. A detectable Tg doesn't necessarily mean cancer - it indicates that there is still thyroid tissue/cells remaining in your body. Seems to me the RAI is in the process of doing it's job so, for now, it'll be hard to tell what the Tg number really means. Ideally, post RAI (like six months from now) your Tg will become undetectable. RAI works in your system for a long time.

For thyroid cancer patients, the ultimate goal is to get Tg readings of zero or close to it. Do you know if you have thyroglobulin antibodies? This is important because Tg antibodies can skew the results of Tg tests. Endos familiar with thyroid cancer will track trends in your Tg - changes upward indicate concern. Do you get copies of your labs? It's important to keep copies of them yourself.

For thyca patients TSH should also be low - lower than 1 for sure. However, if you're just getting back to meds after being hypo for the RAI preparation, then that TSH level of 3.28 may not be that much of a concern. My endo tells me it takes about 6 weeks for synthroid to build up in your system so you may have to wait that long to get labs that really gauge how suppressed you are on meds.

It's crappy to have a doc that won't address questions. Any chance you can can that doc and find another?
Best to you

teamwink

alapah said:

labs
A Tg level of that amount at this phase of the RAI cycle it probably doesn't tell much. When was your surgery? Is this your first RAI?. A detectable Tg doesn't necessarily mean cancer - it indicates that there is still thyroid tissue/cells remaining in your body. Seems to me the RAI is in the process of doing it's job so, for now, it'll be hard to tell what the Tg number really means. Ideally, post RAI (like six months from now) your Tg will become undetectable. RAI works in your system for a long time.

For thyroid cancer patients, the ultimate goal is to get Tg readings of zero or close to it. Do you know if you have thyroglobulin antibodies? This is important because Tg antibodies can skew the results of Tg tests. Endos familiar with thyroid cancer will track trends in your Tg - changes upward indicate concern. Do you get copies of your labs? It's important to keep copies of them yourself.

For thyca patients TSH should also be low - lower than 1 for sure. However, if you're just getting back to meds after being hypo for the RAI preparation, then that TSH level of 3.28 may not be that much of a concern. My endo tells me it takes about 6 weeks for synthroid to build up in your system so you may have to wait that long to get labs that really gauge how suppressed you are on meds.

It's crappy to have a doc that won't address questions. Any chance you can can that doc and find another?
Best to you

thank you
I appreciate the response - I had the TT in Feb but waited for the thyrogen to do RAI and just finished in August. My thyroglobulin was undetectable before RAI, so I hope it gets back there now I'm looking for another doc, and I will be thrilled to be with one that is more supportive. This board has been far more helpful than my endo!

nasher

teamwink said:

thank you
I appreciate the response - I had the TT in Feb but waited for the thyrogen to do RAI and just finished in August. My thyroglobulin was undetectable before RAI, so I hope it gets back there now I'm looking for another doc, and I will be thrilled to be with one that is more supportive. This board has been far more helpful than my endo!

thyrogen
thyrogen is set to increase your TSH

my hypo route and such for RAI my TSH got over 100
my 1 year scan thyrogem my TSH got to 93 and a week later was at 7.56 still

pulling up my medical recoard to see my TG prior to RAI
Thyroglobulin 2.41 27 apr 2010. (rai May 5 2010)
Thyroglobulin <0.10 13 May 2011 (with clean scan)

prior to RAI there is no way to tell how good or bad it is... it shows there is thyroid tissue left (who knows if it had cancer cells or not) it should take about 6 months for the Thyroglobulin to decrease do to the radiation.

... I spotted a trend I do not like ... I didnt notice it but my TSH is slowly going up... i dont know how low my Endo wanted to keep it but its becomeing less so.

24 Jun 2011 Thyrotropin 0.010 Low
26 Jul 2011 Thyrotropin 0.040 Low
29 Jul 2011 Thyrotropin 0.050 Low

this is they type of trend the doctors will never see since as long as it is less than 0.34 they will say oh yea thats low cause of TSH supression. And they may not even notice when it goes into the normal range cause heck its a normal. If it keeps trending up I may send a message to my ENDO before my next visit asking him about this. its just something easly missed that we need to watch for.

dont worry about asking questions about bloodwork it is completly confusing.

yes this board is helpfull in figureing things out so you can get better answers from your endo and better quality of life by takeing charge.

yes the doc may be concerned that your thyroglobulin level went up or it could have been a more sensitive test or who knows.

as for results from the scan you will have to physicaly ask for results and they will probbaly put them on CD for you (have to sign a release of medical info too)

also start asking for printed copies of all your labs so you can track them.

wish you luck finding a good doc they can be few and far between...

Right now I have a good PCP a good Nurologyst a good ENDO and a semi ok ENT doc that i see... but come december 1 I will not be able to see any of them and will have a whole new set of doctors to deal with.

oh the reason you doc probably dosnt want you asking questions is they are overbooked and have x min to see you and your makeing them late...Thats why as much as posible i bring printed lists of my questions makes it much quicker.

alapah

teamwink said:

thank you
I appreciate the response - I had the TT in Feb but waited for the thyrogen to do RAI and just finished in August. My thyroglobulin was undetectable before RAI, so I hope it gets back there now I'm looking for another doc, and I will be thrilled to be with one that is more supportive. This board has been far more helpful than my endo!

search for new endo
I do hope you can find a better endocrinologist! One thing I'd suggest is making sure you connect with one that specializes in thyroid issues and, even better, in thyroid cancer - or at least someone that is well versed in thyroid cancer. Endocrinology is a broad sort of speciality - and some seem to focus primarily on diabetes, for example. My doc is not necessarily a thyroid cancer expert but she does keep up with the latest research and she is well versed and connected to specialists out of state who do focus on thyroid cancer so she has a good network going. I lucked out because I was referred to her by my ENT - I didn't have to search around.

teamwink

alapah said:

search for new endo
I do hope you can find a better endocrinologist! One thing I'd suggest is making sure you connect with one that specializes in thyroid issues and, even better, in thyroid cancer - or at least someone that is well versed in thyroid cancer. Endocrinology is a broad sort of speciality - and some seem to focus primarily on diabetes, for example. My doc is not necessarily a thyroid cancer expert but she does keep up with the latest research and she is well versed and connected to specialists out of state who do focus on thyroid cancer so she has a good network going. I lucked out because I was referred to her by my ENT - I didn't have to search around.

non detectable to detectable?
I guess the other confusing thing is that my levels have always been undetectable until RAI. In fact, the day before I got RAI, the levels were undetectable. I can't seem to get a straight answer on why this would be the case - I mean, it was less than one week difference here. Totally confused!