# Thyrogen questions....



## teri2280 (Feb 7, 2012)

:anim_38:Has anyone on here used thyrogen in preparation for upcoming RAIs? Saw my local endo today, and he suggested it so I don't have to go hypo before. This is sounding VERY good to me, as I've always been normal when it comes to the hypo vs. hyper aspect. My only issue is finding out an out of pocket cost from my insurance company. Endo says that each dose (2 needed) are about 1200 bucks a pop, but when I called my insurance company about it, they said it's over $6000 for 3 doses. I'm confused as to the 3 versus 2 doses, and also wondering about how bad my insurance company is raping me. LOL. I mean, if my doc's cost is 1200 a dose, that should be $3600 for 3, not over 6K!!!


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## teri2280 (Feb 7, 2012)

Oops, I so meant for the punching smiley to be at the end!


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## Octavia (Aug 1, 2011)

No....no experience with it here. I was hoping to get to use it this time around, but no such luck. My doc won't use it for the first post-diagnosis RAI treatment, or the first one-year follow-up. So I'm in my "going hypo" phase right now in preparation for my scan next week.

That is CRAZY expensive, though. I can see why an insurance company might not want to cover it, since there's a free alternative.


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## joplin1975 (Jul 21, 2011)

Thyrogen is or, at least, was pretty hard to come by. The producers recently released a statement which discussed its increased availability. So, there's not going to be too many people out there with experience, I'd bet.

Octavia -- what are your doctors concerns about using it during the first couple scans? I doubt we'll get any thyrogen by the fall, but I was just curious.


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## teri2280 (Feb 7, 2012)

I got a call from the insurance co. this morning. Seems like they gave me the price for the self injection prescription only, not the dr injected in office procedure. Waiting on codes from doc's office to get the accurate price.

I have to echo Joplin, Octavia.....Why no on the thyrogen? This is my post-diagnosis treatment, and my endo is all for using it (assuming that my out of pocket cost is reasonable, and that we can actually get the stuff- it's not something he keeps on hand, so it'll be ordered when I tell them to go for it), but I'm guessing that's because throughout this whole ordeal, I've never once been hypo. Well, I might have been for a bit right after my TT, but I got meds in me the next day, so didn't feel the symptoms. He told me that if the o-o-p cost on thyrogen is 200 or less per visit, to go for it, as it'll be worth that to just not go hypo.


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## joplin1975 (Jul 21, 2011)

For what its worth, going hypo isn't awful. Really, it's not. Yes, you get tired and foggy-headed, but its temporary and passes quickly. I never missed a day of work or anything like that.


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## nodakmom (Oct 15, 2011)

My endo wants to get Thyrogen for her patients here and hasn't been able to (I'm not sure what the hold up is, she made it sound like it was a nuclear med issue in our hospital). I did check with my insurance if it is covered and was told it is but not under prescriptions, under medical so the deductible and coinsurance would apply. I thought about contacting my pharmacy to see what they say & if they can order it, but I think it would have to be Rx'd by my dr. for BCBS to cover it.

I'm with joplin though, I had to be hypo for my initial RAI. I never started synthroid after my TT so I was hypo 4 weeks. The brain fog and lack of energy were the worst, but I too never missed a day of work due to being hypo.


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## teri2280 (Feb 7, 2012)

nodakmom said:


> My endo wants to get Thyrogen for her patients here and hasn't been able to (I'm not sure what the hold up is, she made it sound like it was a nuclear med issue in our hospital). I did check with my insurance if it is covered and was told it is but not under prescriptions, under medical so the deductible and coinsurance would apply. I thought about contacting my pharmacy to see what they say & if they can order it, but I think it would have to be Rx'd by my dr. for BCBS to cover it.
> 
> I'm with joplin though, I had to be hypo for my initial RAI. I never started synthroid after my TT so I was hypo 4 weeks. The brain fog and lack of energy were the worst, but I too never missed a day of work due to being hypo.


That's not too bad. My doc made it sound like I'll be a complete zombie for 5-6 days once my levo wears off. I wish they'd never even started me on it post tt, and I could be doing the RAI about now, but they were only 99% sure before pathology that it was cancer, so I guess I'm stuck. 

My doc seems pretty confident that he could get the thyrogen if we go that route, but something about it might take a while since it comes from either Australia or France. I could see your hosp's issue with nuclear medicine - My doc told me that the thyrogen is made out of nothing but nuclear burn out, basically. Stuff they get for free, and then charge upwards of 12K per dose. Gotta love the health system.


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## joplin1975 (Jul 21, 2011)

Naw, you won't be too bad. I only mention it because if the thyrogen is 1) cost prohibitive or 2) hard to come by, I, personally, wouldn't go bonkers trying to find it. It would be a nice option for all of us, but don't kill yourself trying to get a hold of it.


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## Octavia (Aug 1, 2011)

I don't know why my doc doesn't want to use Thyrogen for a patient's first two scans. I asked about whether I could use it, they said no, and I said okay. I had bigger fish to fry at the time, so it was a "pick your battles" kind of thing.

I took my last Levoxyl (Synthroid) on March 21. It is now April 11. I get my labs done April 16th to make sure my TSH is high enough. I am a little tired, but seriously, not bad at all. I've been working 60 to 70 hours a week, and that will continue through next week. The hypo is not bad for me...there are worse things!


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## teri2280 (Feb 7, 2012)

Just called the doc's office and told him to just do the old way. BCBS is giving me the run around about what they'll cover on it, even though my deductible is already met. Heck with it. It's turning into a headache already and def. not worth it, especially if I'm not going to be a COMPLETE zombie by going hypo. I just kinda hoped to skip the whole hypo aspect if I could, since I've never been, but if it's not too bad, I'll just deal with it, and warn my bosses that I just might be a bit more "flaky" than normal.


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## Andros (Aug 26, 2009)

teri2280 said:


> I got a call from the insurance co. this morning. Seems like they gave me the price for the self injection prescription only, not the dr injected in office procedure. Waiting on codes from doc's office to get the accurate price.
> 
> I have to echo Joplin, Octavia.....Why no on the thyrogen? This is my post-diagnosis treatment, and my endo is all for using it (assuming that my out of pocket cost is reasonable, and that we can actually get the stuff- it's not something he keeps on hand, so it'll be ordered when I tell them to go for it), but I'm guessing that's because throughout this whole ordeal, I've never once been hypo. Well, I might have been for a bit right after my TT, but I got meds in me the next day, so didn't feel the symptoms. He told me that if the o-o-p cost on thyrogen is 200 or less per visit, to go for it, as it'll be worth that to just not go hypo.


I also don't see why the patient cannot go on Cytomel (T3) and stop about 2 weeks or even 10 days before the scan?

But then on the flip side; better safe than sorry. I "can" see that!


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## Octavia (Aug 1, 2011)

teri2280 said:


> Just I just kinda hoped to skip the whole hypo aspect if I could, since I've never been, but if it's not too bad, I'll just deal with it, and warn my bosses that I just might be a bit more "flaky" than normal.


LOL! 

That's a good way to think about it!


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## nodakmom (Oct 15, 2011)

teri2280 said:


> warn my bosses that I just might be a bit more "flaky" than normal.


That's what I did lol. I do have the advantage of my supervisor also having thyroid issues so she totally understands and is supportive. I laughed at myself a lot for being 'flaky'.

Andros makes a good point. My Dr has already told me if we can't get Thyrogen for my WBS sometime this summer that she will put me on Cytomel for a couple weeks so I'm not so hypo so long.


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## teri2280 (Feb 7, 2012)

UHH I have some more questions. Thanks to google. (Doc's not gonna like me lol. He HATES that I google med stuff, but screw it, it's a Sunday and I can't call him.

From the New York Thyroid Center:

6 weeks before RAI, stop taking T4 (Levo, et al.) and start taking T3 (Cytomel).

2 weeks before RAI, discontinue T3

1 week before, start LID.

So my question is this: Why in the HE!! is my doc having me stop my Levo without starting Cytomel, AND starting the LID already?? I don't even have a freaking DATE yet!! I spoke to my endo's secretary on Fri, and she told me to stop the Levo. I'd already taken my Friday dose, and forgot to skip it yesterday, so today is day 1. I manage all of my prescriptions online, and I walk right by there I don't know how many times a week (I work at Walmart, and use Walmart pharmacy), and there are ZERO prescriptions waiting for me. The 2 most recent is the Levo refill I ordered Thurs and the antibiotic my PCP gave me for bronchitis. UGH. SO hating the fact that there's only one endo in my area!!
And what's the point of starting the LID 5 weeks early???!!!!???? Correct me if I'm wrong, but wouldn't low iodine for 6 straight weeks mess me up just as much as the 2 weeks of being hypo will?!?! For crying out loud, low iodine leads to goiters, which got me into this mess in the first place! (The goiter, not necessarily the low iodine, but I think it's something I'm going to check out.)

Ugh. Sorry for the venting guys. I'm at my wits end right now after having found out that this goiter was "diagnosed" back in 2011 and nothing was done about it (just TSH checked, and that was "normal"). In the back of my head I've got the theory that it could have been a benign goiter that could have been shrunk a year ago with synthroid or levo, that developed cancer because of all the extra space up there. Had that stupid b**** of a doctor just run some imaging, there's a possibility that I wouldn't even be going through ANY of this right now.

*ADD* 
Feel free to correct me if the above info about the weeks preceding RAI are incorrect. And yes, I'm calling my doctor tomorrow and requesting an iodine test BEFORE I start the LID.


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