# Does thyrogen affect Tg levels?



## teri2280 (Feb 7, 2012)

I know that each and every one of us is different, but I am comparing myself to someone else. We were both tested for Tg 6 months after RAI. Person x was .2, I was 1.9. I MIGHT have been tested with thyrogen in my system, I'm not sure. (Planning on trying to find out on Monday when I have a nice heart-to-heart with "Retards-R-Us"'s secretary, but hard telling how THAT will go!) Is it possible that mine is higher because of the thyrogen??


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## Octavia (Aug 1, 2011)

I don't know. Sorry.


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## teri2280 (Feb 7, 2012)

Darn. Still trying to make some sense of how Tg can go from <.5 to 1.9 with no worry from a doctor. I understand that in some cases it doesn't show 0 right off the bat, but the fact that it's going up has me worried, especially in just 3 months. (Everything I'm finding on the net says that most doctors are content as long as it shows a downward trend.) And, I didn't really word the first post right, but I think you know what my thinking is behind this. (And yes, I'll admit I might be grasping at straws, but if I can find something that says thyrogen DOES make Tg go up, I'd feel a lot better!) I did some research last night, and can't find anything to support my "thyrogen = higher Tg" theory, but I can't find anything that disproves it either. Gonna try some more tonight, and I guess I'll see what the secretary says when I'm in for bloodwork tomorrow. If I'm still getting the run around, or she swears it's fine, then I'll find some way to contact my surgeon. (Who left Cleveland Clinic for some place in either Washington or Oregon, but I'm sure a few minutes on google will at least provide a phone number.)


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## Octavia (Aug 1, 2011)

Teri...refresh my memory. Did you have RAI treatment after your TT? If you didn't, that may explain it, as the TT is not a perfectly "clean" surgery, so some thyroid cells are left behind. If that's the case, those cells can make Tg.


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## teri2280 (Feb 7, 2012)

Yup, surgery in March, RAI (no thyrogen, as he was having trouble getting it) and a WBS in July, and another WBS (this one without RAI, but my first with thyrogen) in Dec.


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## teri2280 (Feb 7, 2012)

If I remember correctly, the first WBS was 10 or 14 days after RAI. Not sure which one, but if I'm thinking correctly, what I had wasn't the "norm". Like norm is 14, mine was 10, or vice versa....


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## teri2280 (Feb 7, 2012)

Regardless, the first Tg test "in question" was drawn on Sept. 4. I remember that clearly, because I had the blood drawn exactly one week before the appt. on 9/11 where we scheduled Dec's body scan.


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## Octavia (Aug 1, 2011)

teri2280 said:


> If I remember correctly, the first WBS was 10 or 14 days after RAI. Not sure which one, but if I'm thinking correctly, what I had wasn't the "norm". Like norm is 14, mine was 10, or vice versa....


ah, yes...I remember now. I remember thinking that your scan was "an eternity" after your RAI. I believe that most of us here had a scan within 3 or 4 days of the RAI. It does seem like your doc takes a rather non-standard approach on some things. My concern was/is that the vast majority of the RAI would have left your body by the time your scan was performed. I may be wrong on that thinking, but I was definitely concerned.

So...what's done is done. I know you are working on finding out more detail about your labs, etc.

Couple of questions for you:

1. What is your follow-up plan for 2013--are you waiting until December for your next scan, or will you be having one in the summer, a year after your original scan?

2. What kind of doctor/specialist is managing this care plan for you? Is it an endo? And how confident are you in this person's care?

I see a radiation oncologist, and while he creeps me out in a pedophile sort of way, he is very knowledgeable and experienced with thyroid cancer specifically. I wonder if you have someone like that in your community???


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## teri2280 (Feb 7, 2012)

1) I was told after this last scan he wanted to see me in 6 months. (Just a regular office visit and bloodwork.) I told them I'd call back in April or May to set that appointment - I wanted to wait til a little closer to set the appointment, as I have no clue what's going to be going on then. I have no clue if the appointment that they scheduled "for me" (the one(s) I had no clue about being scheduled) IS this appointment, or what. As far as another scan, I have no clue (but will be asking when I have that little heart-to-heart with my doc's secretary here in a couple of hours)!!

2) I see an endo. An old endo, who doesn't run frees, and laughs AT you when you suggest them. (Been there, done that.) I mention the old part, because I have a problem with both super old and super young docs. Old ones, I don't like because I feel that with all of the new technologies, they had to re learn them. Super young ones, I don't like because I don't want to be one of their first "guinea pigs". I know the technologies change literally every day, and drs are ALWAYS learning the new ways, but I'm more confident with someone who's been doing it for 20 years than I am with someone who's been doing it for 40+. I'm weird like that. LOL.

I googled radiation oncologist in my area. There is one, and he is actually located on the side of town that I work on (a super plus if I'd have to have bloodwork right after work! lol). There's also a "regular" oncologist/internist who is listed as doing thyroidectomies, so it's probably safe to say that she'd do this stuff too. (Kinda ticks me off, considering that my endo only gave me names of people 3+ hours away, but oh well.) Both of them are 48, one graduated in 1990, one in 1992. (Much better than the 67 year old that graduated in '71, in my book!) The oncologist/internist actually treated my grandfather's pancreatic cancer back in 1997, so I know the name. (Don't think I ever met her though, at least not that I remember.)

Octavia, if you don't mind, could you check out these 3 links, and give me your opinion on who to call first? They're all pages on healthgrades.com, and the first one is my current endo (who isn't even listed as an endo, but an internist...???). I really don't want to go start switching things up so soon, but I've been through way too much crap with this doctor, and my stress level right now is through the roof. Even if I don't end up seeing one of them regularly, I'd still like to get a 2nd opinion, especially on the whole Tg going up thing. (That's the biggest worry right now. Here's the links:

http://www.healthgrades.com/physician/dr-leroy-schroeder-yv56l (My current one)

http://www.healthgrades.com/physician/dr-stephen-lutz-x42gn (Radiation Onc.)

http://www.healthgrades.com/physician/dr-sharon-cole-xbwmd (Oncologist)

Thanks!!!


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## Octavia (Aug 1, 2011)

Teri, they both look like they could be good options. If it were me, I would call both offices and see if they treat/manage thyroid cancer patients. If not too much of a financial burden, I wonder if you could make an appointment with both of them and see which one seems to be more knowledgeable and experienced, as well as collaborative. You could also check with members of a local thyroid support group to see who manages their care - it may be one of these two, or it may be someone totally different.

I agree with you about your stress level being too high with your current doctor.


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## joplin1975 (Jul 21, 2011)

My understanding is that thyrogen can minimally elevate thyroglobulin, in the sense that any remaining cells will be stimulated and could, again minimally, but out extra thyroglobulin.

As we mentioned before, having a scan 10-14 days after your thyrogen shot defeats the purpose. Thyrogen peaks at ~72 hours and you need the scan in that time frame, otherwise it's (then scan, that is) useless.

I would be concerned about the increase in thyroglobulin.

(PS, I'm reaaaaallly not trying to be the PC police here, but it'd be a lot easier for me for me to read your posts if you'd, pretty please, stop using slurs. My brother is a great guy. He's also, clinically speaking, retarded. I can't express how painful that word can be when used in that manner. Please see www.r-word.org)


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## teri2280 (Feb 7, 2012)

Alright. Had blood drawn today for TSH, T3, T4, and Tg. (My endo does NOT run frees.) My Tg has to be sent to USC because of my antibodies, but I should know tomorrow or Wed what everything else is. My chat with the endo's secretary went fairly well. She said (and pointed out in my file) that the TSH had indeed been ordered for back in December. Why they didn't test it is beyond anyone, but she said I'll have no charge for the bloodwork today. She is going to look into why the Tg has gone up over time. The .5 reading that I was told came from September was actually from back in January-February (before I had my thyroid removed, which makes ABSOLUTELY no sense to me, considering I still had my cancerous thyroid then!). That said, it's still gone up. March was 1.2 (after my TT), June was 1.4 (before RAI), September was 1.5 (after RAI, but I didn't have thyrogen for it), and December was 1.9. The secretary is looking into whether the 1.9 was drawn before or after I took the thyrogen. If I don't hear from her by the end of the day, I'm supposed to call her tomorrow morning.

My new concern is this:

Feb Tg- <.5 (Before TT)
March 1.2 (after my TT and on 175 synthroid, but had only been on it for a couple of weeks if that) 
June was 1.4 (before RAI, no thyrogen, but definitely hypo since I could FEEL it) 
September was 1.5 (after RAI, was also slightly hypo, with a TSH of 2.11)
December was 1.9

I saw these for myself and wrote them down while I was there. How in the world was my Tg lower while I still had my thyroid than it is now??? Again, my endo's secretary is looking into this, but I'd like some other thoughts.


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## teri2280 (Feb 7, 2012)

Joplin- Not a problem. I honestly was so hot that I'll be the first to admit that I totally wasn't thinking!! They did earn some brownie points back when I realized that the TSH and stuff was indeed ordered for December, the lab just didn't run them for whatever reason. Saw it for my own eyes. I'll admit that I'm still pretty hot over all of this, but now it's just a "simmer" instead of a "full boil".


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## Octavia (Aug 1, 2011)

teri2280 said:


> How in the world was my Tg lower while I still had my thyroid than it is now??? Again, my endo's secretary is looking into this, but I'd like some other thoughts.


Might it be related to your Tg antibodies?


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## Octavia (Aug 1, 2011)

Helpful information about Thyroglobulin from this website: 
http://labtestsonline.org/understanding/analytes/thyroglobulin/tab/test

***************************************
What does the test result mean?

Small amounts of thyroglobulin are normal in those with normal thyroid function. If thyroglobulin concentrations are initially elevated in a person with thyroid cancer, then it is likely that thyroglobulin can be used as a tumor marker. Thyroglobulin levels should be undetectable or very low after the surgical removal of the thyroid (thyroidectomy) and/or after subsequent radioactive iodine treatments. If levels are still detectable, there may be normal or cancerous thyroid tissue remaining in the person's body, indicating the need for additional treatment.

Based on the results of a thyroglobulin test, a doctor may follow up with a radioactive iodine scan and/or radioactive iodine treatments to identify and/or destroy any remaining normal thyroid tissue or thyroid cancer. Thyroglobulin levels are then checked again in a few weeks or months to verify that the therapy has worked.

If the level of thyroglobulin is low for a few weeks or months after surgery and then begins to rise over time, then the cancer is probably recurring.

If a person develops thyroglobulin antibodies, then the thyroglobulin test results may be falsely elevated or decreased, depending on the testing method used. Results must be interpreted with caution. The presence of the antibodies lessens or eliminates the usefulness of the thyroglobulin test as a tumor marker.

************************************

So...because of the presence of Thyroglobulin antibodies in your blood, I question the usefulness of the Tg test.


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## teri2280 (Feb 7, 2012)

Octavia said:


> Might it be related to your Tg antibodies?


Sure was! The .5 was what the local lab read, the jump was when we started sending it to USC. (Just got off the phone with the secretary lol.) Yes, it's SLIGHTLY going up, but the endo isn't worried about it yet, as it hasn't gone up much at all, considering the "true" readings.

He wants me to do another Tg with Thyrogen in June. If it's close to the same, another body scan in December, sooner if the Tg jumps way up.

As far as my whole no TSH test not equaling a true scan result, she said they don't always order the "normal" thyroid panel for a scan. He typically just checks the normal numbers once a year. (Which I find kind of odd for a newbie to hormone replacement, but ok, whatever.) I guess it's up to me to make an appt if I feel off. I explained to the secretary that scenario kinda sucks for someone in my situation, as I don't know how good I "should" feel. I was on the hypo side of things for a long time before surgery, and while I feel great now, I don't know if I should feel better, or if I feel TOO good, and that it's always taken feeling better to make me realize I felt bad in the first place. She said that as soon as she gets my lab results from today (with the exception of the Tg of course), she'll let me know, and we'll go from there.

PHEW. I feel LOADS better about this now. I'm even starting to think of just sticking it out with him and seeing what happens in the coming months. I really don't like the idea of going to someone new who doesn't already know my journey, and overall my issues have been with his staff, not him personally. It's all been stuff that his staff should have done that they didn't. Granted, it sucks, but like I said before, he knows what I've gone through already, and that makes it worth it to attempt to ride him out a bit...


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## teri2280 (Feb 7, 2012)

And December was 1.7, not 1.9. I couldn't read his handwriting lol. Overall, my Tg has only gone up by .5, not the 1.4 I'd originally thought. I'm sure there are also certain factors that can contribute to that, and I'm willing to bet that if I worked at USC, I might get a different read on a sample of blood than someone else looking at that same sample. Not a big enough of a jump to show a concern, I don't think... Now, if the Tg from today jumps up to 4.0 from 1.7, yeah, I might just flip a lid, but if it's a .1 or .2 rise, I'm not going to be too concerned.


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## jenny v (May 6, 2012)

You might also mention the staff problems you've been having to the doctor when you see him face to face again. Most docs usually want to know if their staff isn't doing a good job because that will drive patients away and that's not good for business.


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## Octavia (Aug 1, 2011)

Teri, I agree with your thinking above, FWIW. And your June-December plan sounds like a good one to me.

As for the periodic lab testing, once I found my "sweet spot" for meds (which didn't take long), my doc pretty much said "see you in a year." Of course, if I started to feel "off" (which I did), I could call (which I did).

Breathe easy!


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## teri2280 (Feb 7, 2012)

Octavia said:


> Teri, I agree with your thinking above, FWIW. And your June-December plan sounds like a good one to me.
> 
> As for the periodic lab testing, once I found my "sweet spot" for meds (which didn't take long), my doc pretty much said "see you in a year." Of course, if I started to feel "off" (which I did), I could call (which I did).
> 
> Breathe easy!


Breathing easier, that's for sure!!  My issue with the whole year thing is that we haven't found that "sweet spot" yet. I felt pretty darn good when I had a 2.11 TSH. I feel GREAT now, but like I said, it's more in hindsight, and I just feel better than I did at 2.11. We'll see. It'll be interesting to say the least to see what the numbers are from today!


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