# ****ed off



## crimebuff (May 25, 2012)

I am new to this cancer diagnosis after having a TT 2 weeks ago. I can't believe ther is no thyrogen available-what is with that?? The Cleveland Clinic can't even come yp with a specific time they will have it for me- since there's no way i'M GOING HYPOTHYROID( DEPRESSED AND FAT ENOUGH NOW NEVER HAVING BEEN HYPO. oops-sorry for the caps-my fingers slipped. Anyway I'm going to look for another hospital to do my RAI. Wish me luck!


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## joplin1975 (Jul 21, 2011)

I hear ya -- believe me, I do (TSH in the 120s for weeks on end). But take a deep breath and try to calm down a bit. I know this is a pain in the arse. I do. I've been there and it's not fun. Not at all.

That all said, going hypo is not the end of the world. Yes, you feel tired. Yes, you feel a little down. Yes, you gain weight. But when it's all over, it feels like a blip in the grand scheme of things.

Thyrogen is hard to get no matter where you are. The manufacturers did make a press release saying it would be more readily available in 2012, but that doesn't seem to have come to fruition. At least not yet.

I gained a total of 27 pounds and am now losing the weight pretty rapidly. I hate to sound patronizing, because I do understand how it feels when you are "in" it, but it does get better. My advice is to not go on a wild hunt for thyrogen. Make some calls, see what you can get, but if its not available, get the RAI ASAP and get it over with.


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## webster2 (May 19, 2011)

I agree with Joplin. Get the RAI, and begn the next step. I spent most of the winter & early spring hypo. Things are much better and I have lost 10 pounds. So far, the weight coming off hasn't been as quite as difficult as I had imagined.

Hang in there, it is all part of the process it seems but there is light at the end of the tunnel.


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## teri2280 (Feb 7, 2012)

I too wasn't hypo EVER before my TT (at the Cleveland Clinic to boot - who was your surgeon, and where are you from???). To be totally honest with you, going hypo for RAI wasn't all THAT horrible. Granted, I had to take FMLA from work, that I'd originally NOT intended, but that was more due to my bosses not being understanding whatsoever than it was due to the hypo symptoms. I was planning on just using 3 vacation days and my 2 days off, but it unfortunately didn't work out that way. Was I tired more than normal? Yeah, a bit. More easily irritable? Oh yeah, but I'm pretty easily irritated anyway lol. My only other side effect of being THAT hypo was, uhh, feminine issues (spotting fairly heavily - I've been on depo for almost 4 years and haven't even LIGHTLY spotted in that time ONCE much less anything heavier), but it's beginning to get back to normal after just a few days back on my Levothyroxine. I totally noticed the difference going hypo did to me, but it's something that, had people been a little bit more understanding about, I wouldn't have needed the 2 weeks off of work.

My endo suggested the thyrogen. He told me ahead of time how rough it is right now to get his hands on, but that he could get it, although even he wasn't sure how long it'd take him to get, and suggested I check with my insurance co. to make sure they'd cover it. He had previous patients whose insurance wouldn't cover it, and he wanted me to make sure before he got it so he wouldn't be stuck with the cost and not knowing when/if he'd be able to use it. (Can't say I blame him on this one. LOL.) My insurance company told me that the doc's office would be able to tell me if it was covered or not, my doc's office said it would have to be the insurance company to tell me. Just getting the run around for that little bit was enough (combined with the time issue - it's possible that I had thyca for a over year already BEFORE my TT in March - HOPEFULLY not, but it's one of those possibilities that I'll never know the answer to) for me to say, "Screw it, let's get this going, I'll just go hypo." Like I said, even with "normal" levels, I'm fairly easily irritated. 

While I was on medical leave, I took some much needed time to just relax. In the first 3 months of 2012, I have had a pap smear where my gyno found a lump, a PCP visit where he ordered blood tests and an RAI uptake scan of my thyroid, a thyroid ultrasound, an initial visit with an endo who does NOT have a good reputation around town (to say the least!), the stress that this endo is older than dirt (I prefer younger doc's, and this guy treated my grandmother's diabetes, and she DIED 30 years ago this August), a referral and consultation with a kick a$$ surgeon (Milas) at CC (who, incidentally, was the ONLY one who thought it was cancer, with a 99.9% chance, at that), a total thyroidectomy, and a "true" cancer diagnosis, so the time off to de-stress was MUCH welcomed by my body (and hubby!). Granted, I was off on FMLA for 3 weeks following my tt, but most of that time I was still stressing the path report that I hadn't received, what was going on @ work, etc. I wasn't able to truly relax until this round of FMLA. I did some projects around the house (spraying weeds, light landscaping, and finished restoring an old wishing well that my step-dad made years ago), and other than some super irritated moments with the hubby, I was relatively "normal".

The nice thing about thyrogen is that you don't have to go hypo. The bad thing is, it's still not super easy to get a hold of, and may NEVER be. With the price of it, (around $1200 an injection is what my endo told me, but I haven't had it and don't have a concrete bill for it), it just is NOT something that endos keep on tap, especially if they have no clue if their patient's insurance is going to cover it. More than likely, IF they were to get a few injections worth built up, so few ins. co's actually DO cover it, that their "stockpile" would probably expire before they could use it. My husband is an independently contracted (read: self employed, but working for someone else) auto body guy by day, so I understand not buying a bunch of parts that you don't know if/when you'll use them. They just cost unnecessary money. Granted, if you have a job come in where you need them, you'll have to wait a bit to get the part, but in body work, at least, the wait isn't enough to make or break the amount of money he'll make on the job. On the other hand, spending $200 on a bumper just to have it on hand and turn out to not need is just stupid.


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## teri2280 (Feb 7, 2012)

*Add* Honestly, I haven't noticed any weight gain. (PLUS I'm on depo, so I've got a double doozy!) Granted, my scale is broken and I need to get a new one, but I haven't noticed at all any changes in how my clothing fits me. I went off my Levo and switched to Cytomel on 4/23, and by 5/5 was off ALL meds, didn't start back up until the afternoon of 6/1, after my RAI.


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## crimebuff (May 25, 2012)

My endo is at Cleveland Clinic in Florida and my surgeon is from Univ of Miami/Sylvester Cancer Center-actually the head honcho there-and he had said they had the thyrogen there so I called him today but haven't heard back yet-I know he thyrogen will be covered by Medicare so I'm not worried about that. My cancer was encapsulated and supposedly had not spread so I'll wait a bit more for the thyrogen-I'm glad most of you didn't have a problem going hypo-at least not too much of one- but I've never been hypo before the TT yet the probable effects of being hypo seem to just exagerate my normal stuff-tendency to depression, gain weight etc.I'll go hypo if I HAVE to I guess, but
I don't think I'm giving up on the thyrogen yet. And if Miami gets it, I have to convince them to give me only 50 mc of radioactivity as my endo at Cleveland agreed-don't know whether that'll be a problem or not.


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## joplin1975 (Jul 21, 2011)

Good luck! As I recall, no one on the boards have had much luck in getting their hands on thyrogen recently, but my endo seemed confident she could get me some this fall.


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## teri2280 (Feb 7, 2012)

crimebuff said:


> My endo is at Cleveland Clinic in Florida and my surgeon is from Univ of Miami/Sylvester Cancer Center-actually the head honcho there-and he had said they had the thyrogen there so I called him today but haven't heard back yet-I know he thyrogen will be covered by Medicare so I'm not worried about that. My cancer was encapsulated and supposedly had not spread so I'll wait a bit more for the thyrogen-I'm glad most of you didn't have a problem going hypo-at least not too much of one- but I've never been hypo before the TT yet the probable effects of being hypo seem to just exagerate my normal stuff-tendency to depression, gain weight etc.I'll go hypo if I HAVE to I guess, but
> I don't think I'm giving up on the thyrogen yet. And if Miami gets it, I have to convince them to give me only 50 mc of radioactivity as my endo at Cleveland agreed-don't know whether that'll be a problem or not.


Oh yeah, I totally forgot that they had campuses in other states. Sorry, I saw CC and got excited LOL. (Being in Ohio, the CC is a hosp. that you hear a lot from ANY sort of cancer patient.)

If you're content on waiting for the thyrogen a bit, go for it. 
BUT (warning: I'm one of those people on these boards who are pretty much brutally honest lol) if I were you, I wouldn't wait too long. I'm not saying not to give it a month or so if you're comfortable in doing so, but I wouldn't give it a year, either. Just remember that there are no guarantees that your surgeon got 100% of it out, and if there's any still in there.... well, to be honest, I can't tell you for sure that it won't be able to spread. (I can't tell you for sure that it will, either, though!)

Ok, done preaching, promise.


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## teri2280 (Feb 7, 2012)

joplin1975 said:


> Good luck! As I recall, no one on the boards have had much luck in getting their hands on thyrogen recently, but my endo seemed confident she could get me some this fall.


Yeah, both my endo and the nuclear med tech told me that for my scan next year, it's pretty much a given. (THANK GOODNESS!)


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