# questions



## joplin1975

I'm coming up on my annual WBS and while I've tried to be pretty relaxed about this whole thing, now that it's within a month, it gets my brain going. So, I have some semi-random questions.

1) In May, my TSH was 0.54 (0.5-5.5) and my free T4 was 2.0 (0.8-1.8). At that point, my endo (who is campaigning for Miss Conservative Treatment 2012) was "concerned" that the free t4 was slightly out of range, but did not change my dose. I also called my surgeon at that point to get his point of view (because he is fantastic). He said he wasn't overly concerned with the free T4 number, provided I felt good, and said that, ideally, he's like to see the TSH around 0.1-0.3, but that he thought that would probably happen as I continued to lose weight, so he didn't recommend a dosage change either.

Last week, my TSH was 0.78 (same range) and my free T4 was 1.5 (again same range). My crazy endo (who I saw yesterday) thought the numbers looked "great" but I admit I'm a little paranoid that my TSH went up (albeit slightly) and not down. My surgeon is out of town for the week, so I can't rely on him.

I acknowledge I've been very, very busy this summer and, because I'm feeling better, I'm working out a lot more and generally more active. Also, we did all our own hay this year, so moving and stacking 700 bales of hay wears you out. That could all be the reason...still, would you be concerned at all?

2) So I was told by my radiologist last year that I should expect to need another round of RAI this September. Fine. They don't ask me to do a LID, but I was kicking around the idea of just putting myself on the diet, just to be thorough. Yesterday, my endo told me that she has a dose of Thyrogen reserved for me. Given my "struggles" *coughshemessedupcough* she didn't want me going hypo again. The idea of not going off my synthroid sounds great -- I had enough hypo for a lifetime, thankyouverymuch! And, if it were "just" an annual scan, I'd be ok with it. But since it is expected that I'll need another round of RAI, does anyone know if Thyrogen is as effective as "going hypo." I've googled it and all I can find is that it seems to lessen the symptoms of RAI (which is good, because it kicked my butt the first time around), but I admit I'm paranoid and want to see, in writing, that it won't be somehow less effective. (Yes, I'm over thinking this!)

3) And now for the totally weird, random question of the day: does all this thyroid stuff, even if things are evening out for me now, have the potential to throw other endocrine/hormonal things out of whack. Again, I feel great. But, um, er...I've gotten really, really bulky. I've always been athletic. I've always been on the shorter side (5'4" although I tell everyone I'm 5'5"  ). I've always had a shorter, sort of more muscular kind of build, but lately I feel like some kind of hulk-like caricature. My calves have gotten so big that I have to have my show boots custom made because even the men's ex-wide size doesn't fit. I had to throw out a few work blouses, because the fitted capped sleeves don't fit around my shoulders/biceps any more. My husband was giving me a shoulder massage the other day and was all "whoa"...and the worst of the worst was I was in my high school friend's wedding last month, wearing a halter dress and some of my old friends -- who meant it as a joke -- told me to lay off the steroids. 

I asked my endo yesterday and she said it was just my body type and it was probably because I was finally feeling good after a decade of being not so good and therefore doing more. That might make sense, but I was a college athlete and even when I was in top-top shape, I never bulked up like this. Mind you, I've lots a good 15 pounds since surgery, so its not fat-bulk. And I totally think women with muscles are awesome, but, honestly, I feel like a freak show. My husband is concerned about things like pituitary problems and was upset my endo didn't look into things more.


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## Andros

joplin1975 said:


> I'm coming up on my annual WBS and while I've tried to be pretty relaxed about this whole thing, now that it's within a month, it gets my brain going. So, I have some semi-random questions.
> 
> 1) In May, my TSH was 0.54 (0.5-5.5) and my free T4 was 2.0 (0.8-1.8). At that point, my endo (who is campaigning for Miss Conservative Treatment 2012) was "concerned" that the free t4 was slightly out of range, but did not change my dose. I also called my surgeon at that point to get his point of view (because he is fantastic). He said he wasn't overly concerned with the free T4 number, provided I felt good, and said that, ideally, he's like to see the TSH around 0.1-0.3, but that he thought that would probably happen as I continued to lose weight, so he didn't recommend a dosage change either.
> 
> Last week, my TSH was 0.78 (same range) and my free T4 was 1.5 (again same range). My crazy endo (who I saw yesterday) thought the numbers looked "great" but I admit I'm a little paranoid that my TSH went up (albeit slightly) and not down. My surgeon is out of town for the week, so I can't rely on him.
> 
> I acknowledge I've been very, very busy this summer and, because I'm feeling better, I'm working out a lot more and generally more active. Also, we did all our own hay this year, so moving and stacking 700 bales of hay wears you out. That could all be the reason...still, would you be concerned at all?
> 
> 2) So I was told by my radiologist last year that I should expect to need another round of RAI this September. Fine. They don't ask me to do a LID, but I was kicking around the idea of just putting myself on the diet, just to be thorough. Yesterday, my endo told me that she has a dose of Thyrogen reserved for me. Given my "struggles" *coughshemessedupcough* she didn't want me going hypo again. The idea of not going off my synthroid sounds great -- I had enough hypo for a lifetime, thankyouverymuch! And, if it were "just" an annual scan, I'd be ok with it. But since it is expected that I'll need another round of RAI, does anyone know if Thyrogen is as effective as "going hypo." I've googled it and all I can find is that it seems to lessen the symptoms of RAI (which is good, because it kicked my butt the first time around), but I admit I'm paranoid and want to see, in writing, that it won't be somehow less effective. (Yes, I'm over thinking this!)
> 
> 3) And now for the totally weird, random question of the day: does all this thyroid stuff, even if things are evening out for me now, have the potential to throw other endocrine/hormonal things out of whack. Again, I feel great. But, um, er...I've gotten really, really bulky. I've always been athletic. I've always been on the shorter side (5'4" although I tell everyone I'm 5'5"  ). I've always had a shorter, sort of more muscular kind of build, but lately I feel like some kind of hulk-like caricature. My calves have gotten so big that I have to have my show boots custom made because even the men's ex-wide size doesn't fit. I had to throw out a few work blouses, because the fitted capped sleeves don't fit around my shoulders/biceps any more. My husband was giving me a shoulder massage the other day and was all "whoa"...and the worst of the worst was I was in my high school friend's wedding last month, wearing a halter dress and some of my old friends -- who meant it as a joke -- told me to lay off the steroids.
> 
> I asked my endo yesterday and she said it was just my body type and it was probably because I was finally feeling good after a decade of being not so good and therefore doing more. That might make sense, but I was a college athlete and even when I was in top-top shape, I never bulked up like this. Mind you, I've lots a good 15 pounds since surgery, so its not fat-bulk. And I totally think women with muscles are awesome, but, honestly, I feel like a freak show. My husband is concerned about things like pituitary problems and was upset my endo didn't look into things more.


Hmmmmmmmmmmmmmmmmm, on the endo!!

I do believe that it would be wise to get estrogen and testosterone checked. Consider also, over production of androgen by the adrenal glands.

The impression I get re Thyrogen that it is used for follow-up testing but not for treatment w/radiation.

It would be good to call the radiology department about this or your oncologist.

remnant of normal thyroid tissue and microscopic residues of malignant tissue. glowPrior to radioiodine remnant ablation, serum TSH elevation is necessary to promote uptake of radioiodine by thyroid cells or thyroid cancer cells. Elevation of TSH may be achieved by withholding of synthetic thyroid hormone medication after thyroidectomy, with subsequent rise of endogenous
more..............
http://www.thyrogen.com/healthcare/about/thy_hc_clinical_pharmacology.asp

And, I would love to know if you find the answer to that one!


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## Octavia

joplin...all good questions, and here are my thoughts:

1a: Did this doctor win Miss Conservative Treatment 2011? So she's going for a two-fer? 

1b: As for the labs, I think I'd stay put for now and see if you're trending one way or another over the next couple of months.

2: My Radiation Oncologist who specializes in thyroid cancer will only use Thyrogen AFTER the 1-year scan is clear. I don't know if that's based on scientific studies of efficacy or just his best judgment given his knowledge and experience. My 1-year scan was clear, so I will be "eligible" for Thyrogen next year. But Andros makes a good point about not using Thyrogen to go hypo for actual RAI treatment. Given that your doctor is fairly certain you'll need another treatment dose, I think I would feel safer going with the good-ole-fashioned hypo route. (I know, I know...ugh!)

3: OUCH on the steroid comment. Yikes...but evidently, it's not just you--others are noticing as well. I think I might bulk up a bit if I stacked 700 bales of hay, but you know your body, and I suspect you've done this before (the hay baling), and it's different now. IMHO, it would be worth some lab tests to check your other hormone levels. But to truly answer your question, I have no idea whether thyroid issues would have an impact on other hormones. It stands to reason that there *may* be a connection, and I think you should trust your gut on this...something may not be quite right.


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## joplin1975

Octavia said:


> joplin...all good questions, and here are my thoughts:
> 
> 1a: Did this doctor win Miss Conservative Treatment 2011? So she's going for a two-fer?


Yes, she won it in the Miss Universe pageant and is going for her second crown. :tongue0013:



> 2: My Radiation Oncologist who specializes in thyroid cancer will only use Thyrogen AFTER the 1-year scan is clear. I don't know if that's based on scientific studies of efficacy or just his best judgment given his knowledge and experience. My 1-year scan was clear, so I will be "eligible" for Thyrogen next year. But Andros makes a good point about not using Thyrogen to go hypo for actual RAI treatment. Given that your doctor is fairly certain you'll need another treatment dose, I think I would feel safer going with the good-ole-fashioned hypo route. (I know, I know...ugh!)


Gotcha, thank you for that. I don't LIKE going hypo, but it's totally manageable. My goal is to be healthy, so you gotta do whatcha gotta do. I think what I'll do is call my surgeon next week and see if I can track down the email for my radiologist. If both of them (I adore both) are ok with it, super. If they have any hesitations, forget. We'll do it the old fashioned way. 



> I do believe that it would be wise to get estrogen and testosterone checked. Consider also, over production of androgen by the adrenal glands.


Great, thanks. Getting set up with a new GP who seems open to lots of suggestions so I wanted something in my back pocket, in the event that answer was "normal!"


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## joplin1975

In the event that anyone else was curious...

I just got off the phone with my kick butt radiologist. He fully recommends using thyrogen for the scan and possible treatment. Interestingly, however, he is mandating a LID if thyrogen is used. *shrug* He seemed very confident about this approach, I trust him, so we're going forward with it.

I get my 1st injection on the 24th, my 2nd on the 25th, thryoglobulin & pregnancy test on the 26th with a tracer dose...scan on the 28th with another therapy dose if needed.

Now accepting Cancer Be Gone vibes. :tongue0013:


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## Octavia

Fantastic! Nice to see that more docs are going the Thyrogen route.

Sending CBG vibes your way!!!!


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## Julia65

Good luck! I will send some vibes too.


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## webster2

Sending many CBG vibes to you!  I see many hay bales in your future!


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## Andros

joplin1975 said:


> In the event that anyone else was curious...
> 
> I just got off the phone with my kick butt radiologist. He fully recommends using thyrogen for the scan and possible treatment. Interestingly, however, he is mandating a LID if thyrogen is used. *shrug* He seemed very confident about this approach, I trust him, so we're going forward with it.
> 
> I get my 1st injection on the 24th, my 2nd on the 25th, thryoglobulin & pregnancy test on the 26th with a tracer dose...scan on the 28th with another therapy dose if needed.
> 
> Now accepting Cancer Be Gone vibes. :tongue0013:


Where can I deposit my Cancer Be Gone Vibes?" Do you have a little box we can fill up for you?

Many hugs and good wishes. It "will" happen!


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## jenny v

Awesome!!

If it helps, my co-worker who had her thyroid out due to cancer last year also did the exact same thyrogen plan you described (including 2 weeks on the LID diet prior to her RAI) and it worked perfectly.


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## kagealy

Hey Joplin,

I hope all is going well with your testing. I'm praying for a clean scan for you.

I'm right behind you with this whole process. I am scheduled to get thyrogen and have my scan done in October.

Best wishes!


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## joplin1975

Thank you!

We'll know Friday. 

The thyrogen has meant two extra trips to the hospital (for the injections) and a bit of a headache (I'm told that's normal) but otherwise it's been smooth sailing.


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## webster2

Thinking good thoughts for you!


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## Andros

joplin1975 said:


> Thank you!
> 
> We'll know Friday.
> 
> The thyrogen has meant two extra trips to the hospital (for the injections) and a bit of a headache (I'm told that's normal) but otherwise it's been smooth sailing.


Good to hear you have had the scan and I pray for continued "smooth sailing!"


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## Octavia

Best wishes, joplin! And let us know how the Thyrogen works, will you? In particular, I'm curious about whether you'll feel hypo at any point.


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## joplin1975

Thanks guys. I'm in the hospital now..waiting for my pregnancy test to come back (bawahahahahaa!) before they give me my tracer dose.

In case anyone was interested, I just got my blood work results back from yesterday. Just to replay the tape, I had my first thyrogen injection on Monday and the second one on Tuesday (yesterday). About 15 minutes after my second injection, I had my blood drawn: TSH was 102.something, T4 was 1.69 (higher end of reference range was 1.49), thyroglobulin was <0.3 (reference range is <20) and TgAB was <20 (reference range <40).

I feel slightly off...a mild headache, a little fatigued...but nothing awful. And I honestly can't say whether its the thyrogen or just general fatigue (just got back from a trip and am having a busy week at work). My biggest complaint is that my back side is rather sore from the shots. :tongue0013:

Assuming I am not pregnant (and, whooooo boy, that would be a trip!), I'll get my tracer dose today and scan on Friday. Worse case scenario, I only have six more days of the low iodine diet!


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## Octavia

Wow! Thanks for the update!

That seems like it could be a good sign that your thyroglobulin is <3, possibly?

May the tracer dose find nothing! :hugs:


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## joplin1975

Octavia said:


> That seems like it could be a good sign that your thyroglobulin is <3, possibly?


I really, really hope so! My radiologist was pleasantly surprised...not that we are counting any chickens before they hatch, but its certainly a good sign. 

Thanks Octavia! I'll update on Friday.


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## jenny v

Sending good thoughts your way, joplin!

Your TSH went from 0.78 in August to 102?? That's crazy (and good)! Those thyrogen injections are amazing.


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## joplin1975

jenny v said:


> Your TSH went from 0.78 in August to 102?? That's crazy (and good)! Those thyrogen injections are amazing.


Yup. I have every reason to believe my TSH was probably somewhere in the same neighborhood as the August numbers, since I haven't changed anything and don't feel any different. Crazy, uh?


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## joplin1975

So...

*100% clear!!!!*

No uptake on the scan. He also did an u/s just to see if any nodes were enlarged and they were all of normal size.

So, I left the hospital and bought myself a milkshake. Yummmm dairy...



So, that means I need to pass on the sparkly teal & purple box in which you can deposit Cancer Be Gone Vibes to *kagealy*, yes?


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## jenny v

AWESOME!!!

Congrats, I'm so happy for you!


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## Andros

joplin1975 said:


> So...
> 
> *100% clear!!!!*
> 
> No uptake on the scan. He also did an u/s just to see if any nodes were enlarged and they were all of normal size.
> 
> So, I left the hospital and bought myself a milkshake. Yummmm dairy...
> 
> 
> 
> So, that means I need to pass on the sparkly teal & purple box in which you can deposit Cancer Be Gone Vibes to *kagealy*, yes?


OMG!! Totally thrilled here!! You did it! This is marvelous news and surely a weight lifted from your shoulders!!


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## Abcdefg

That's fantastic news!!!!!!hugs4


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## Octavia

joplin1975 said:


> So...
> 
> *100% clear!!!!*
> 
> No uptake on the scan. He also did an u/s just to see if any nodes were enlarged and they were all of normal size.
> 
> So, I left the hospital and bought myself a milkshake. Yummmm dairy...
> 
> 
> 
> So, that means I need to pass on the sparkly teal & purple box in which you can deposit Cancer Be Gone Vibes to *kagealy*, yes?


That just brought a tear to my eyes!!!! I am SOOOOO happy for you!!!!!

Way to go, joplin (and docs!)!!!!!

hugs4


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## Texaschick

Joplin darlin' CONGRATS!!!!! God is good!!!! I am soooooooooo thrilled for you!!!!! I think you are going to have a wonderful weekend!!!! I KNOW YOU ARE!!!! Prayers, hugs and applause for you!!!!!!!


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## sleepylady

Congrats Joplin! Glad to hear your results were awesome! I hope the milkshake was chocolate!


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## webster2

Excellent news!! Congrats!!!! So happy for you!


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## joplin1975

Thanks, all! Is appreciate all your good thoughts along the way. 

Oh yes, the milkshake was chocolate. My husband took me out for dinner where I consumed a revolting amount of cheese. It's all good in our world. xoxoxo


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## webster2

Cheese, chocolate, and cake are my three favorite food groups! Enjoy your good news!


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## kagealy

Wow! Great news! I am so happy for you! What a relief it must have been to hear that news! I hope you celebrated all weekend long!


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## sa103

Joplin1975, I was searching to find out when your last scan was, when I realized your yearly had just past. I am sooooo happy that everything came out 100% clear for you!!!!
What a relief : ) Yay!!!


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## joplin1975

Thanks! I am happy!


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## sa103

Joplin 1975, I'm curious to find out what your diet has been like throughout the year. Do you follow any diet lifestyle in particular? I too had 100 mCi and any and all diet tips from you now that you are all clear are of great interest to me as I too one year from now want to hear like all of us do that we are all 100% clear. I realize that everyone is different, but, nonetheless it will make me feel better to know how your diet may have played a role in all of this. Thanks in advance!


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## joplin1975

I really don't.  I'm not as disciplined as our other posters.

I belong to Weight Watchers...I use it to more or less calorie count. I'm just used to the system, so it's easier for me. I eat lots of protein...I'm not gluten-free and I'm not carb-free, but I do try to keep carbs to a minimum. Outside of limiting carbs, I try to make a conscious effort to get my daily fruit & veggies servings...but that's all.

I'll also say I'm not entirely convinced diet had much to do with my good scan. I actually think I got a little lucky given that 1) my therapy dose last year was not as high as my radiologist would have like and 2) my TSH was not properly supressed after surgery.


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## sa103

My radiologist wanted 150mCi and I didn't feel comfortable with that so I negotiated that down to 100MCi, hoping I made right decision as well. Ok, well I certainly do appreciate your honesty, thank you!!


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