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Old 05-06-2010, 12:58 PM   #691
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Originally Posted by mrsklamc View Post
So you guys must feel like the thyrogen is worth it, since you do it?
The first time I was not given any options since I had almost died, the coma, and bowel obstruction, 4 operations etc. They said my body couldnt take it. (Being off synthroid) Really only the onc. nurse talked to me, she said something weird, like Oh wow, I cant believe you are getting this. Its really expensive. (PTL we have good insurance, thank you dh!) We just usually use this for older people who cant take being off the med that long etc. I guess my body qualified as "old" then.

Now it just seems really like that is all the rad. onc. does anyway. I am assuming since the sheet is already preprinted and it seems to be the thyroid cancer "protocol" for this hospital as I saw somethig on the website. Stating using thyrogen allows our patients to have normal function/quality of life while undergoing testing, or something like that, blah, blah etc.
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Old 05-06-2010, 01:01 PM   #692
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The idea of it making me nauseous just makes me nervous I guess. If it were just a couple weeks, I can spend that holed up at home. ...I will just have to talk to my doctor as we get closer and see what she wants to do...

Had bloodwork today and passed out cold! Just checking my levels...don't go back til the first part of July so we'll see.

Thanks for the feedback so far on the thyrogen.
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Old 05-07-2010, 02:00 PM   #693
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So I found out that I am Hypothyroid...surprise surprsie they have started me on Synthyroid and I'll go back for my retest in 4-6 wks and the goiter's and cyst will be repeat FNA and ultrasound in 4-6 mts.

I've been seeing an oncologist for my lymph nodes througout my neck had a repeat CT Scan to see if they have gone down at all but they have not changed so go back to see him on the 19th for a consultation on what the next step is.
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Old 05-07-2010, 04:47 PM   #694
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So I found out that I am Hypothyroid...surprise surprsie they have started me on Synthyroid and I'll go back for my retest in 4-6 wks and the goiter's and cyst will be repeat FNA and ultrasound in 4-6 mts.

I've been seeing an oncologist for my lymph nodes througout my neck had a repeat CT Scan to see if they have gone down at all but they have not changed so go back to see him on the 19th for a consultation on what the next step is.
I hope the Synthroid relieves your symptoms.
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Old 05-10-2010, 08:04 AM   #695
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Just wanted to know if anyone on the LID ever had severe foot/leg cramps. I know this is from lack of potassium. Mine was so bad sat. night. I was screaming in pain. I had to eat 2 bananas and then when I went to bed Dh had to bring me a huge glass of OJ and 2 percocets leftover from my surgery last year. Usually I eat a banana every morning, but sat. morning I ate oatmeal only.

Oh and I didnt have the popcorn or salsa as I was feeling nauseous.

But I did have some Hagen Daz raspberry sorbet. Checked the ingredient list and it was acceptable. Yummy.
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Old 05-10-2010, 10:08 AM   #696
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I found the nausea to be mild, not debilitating, but it just made you not want to do anything. I never got close to having "dry heaves" or vomiting.
Christine, This is the perfect description of what my nausea feels like. I appreciate everyone's posts to this board because I was prepared when I started feeling the effects of the shot. It's not awful but if I hadn't read about the possible side effects here I would have been concerned when I started feeling queasy.
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Old 05-10-2010, 10:16 AM   #697
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Originally Posted by luvmarypoppins View Post
Just wanted to know if anyone on the LID ever had severe foot/leg cramps. I know this is from lack of potassium. Mine was so bad sat. night. I was screaming in pain. I had to eat 2 bananas and then when I went to bed Dh had to bring me a huge glass of OJ and 2 percocets leftover from my surgery last year. Usually I eat a banana every morning, but sat. morning I ate oatmeal only.
Sorry you are having cramps. I haven't experienced any problems with the LID but I can imagine that a lack of potassium (or any nutrient) would be a common side effect.
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Old 05-10-2010, 07:02 PM   #698
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Well Thyrogen #1 shot and pregnancy test down. I was feeling a little "foggy" headed before. But I did cook dinner for myself.

Anyone hear of this either? I had to sign a paper stating that I "observed" the thyrogen injection and saw there were no particles in it. She said that must be done because of something that is out on the internet????

Also I forgot to ask them to weigh me, as I am wondering how much weight I lost. I will ask tomm. if my mind remembers

And remember I said I was asking for the zofran, just in case. Well I only saw the nurse and she got the script from the rad onc. - so generous of her, I got 4, yup TOTAL zofran pills. Thanks! I hope I dont have to use them etc.
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Old 05-11-2010, 05:01 AM   #699
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About 6 months ago, I did read that there was some problems with Thyrogen. That there were particles in some of the batches and that is was something like pharmaceutical waste. I didn't get the impression that it was a hoax or anything like that. I just though to myself "Geez...what's up with everything these days."

I have been off my thyroid meds for 5 days now. I am preparing for a "stimulated Tg" test since I don't want to use Thyrogen. I'm going to try to make it for 3 weeks. I wonder if I can. I was in my early 30s the last time I did withdraw from meds. I'm a lot older and crankier these days. Uuuggggh..I just hate dealing with this FOREVER it seems.
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Old 05-11-2010, 04:49 PM   #700
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Christine how is it going?

Well I got thyrogen shot #2 today and havent felt nauseous at all PTL!! Just tired. Hmm, now its a semi foggy headache and ringing in my ear.

I had the nurse weigh me and I have lost 10 lbs. in 2 weeks. Last time I lost 20 lbs in the 2 weeks.

Tomm. they said they will go over the radiation precautions with me when I get the pill. The one nurse already said 3 feet away, double flush the toilet, glad my dh is at a conference. I will just have to stay away from the ds etc.

I am like Pavlovs dogs salivating over food commercials on tv. Worse I sat with my ds in the wendys drive in line. I told him he could get something for taking me etc.
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Old 05-12-2010, 11:39 AM   #701
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Quote:
Originally Posted by luvmarypoppins View Post
Christine how is it going?

Well I got thyrogen shot #2 today and havent felt nauseous at all PTL!! Just tired. Hmm, now its a semi foggy headache and ringing in my ear.

I had the nurse weigh me and I have lost 10 lbs. in 2 weeks. Last time I lost 20 lbs in the 2 weeks.

Tomm. they said they will go over the radiation precautions with me when I get the pill. The one nurse already said 3 feet away, double flush the toilet, glad my dh is at a conference. I will just have to stay away from the ds etc.

I am like Pavlovs dogs salivating over food commercials on tv. Worse I sat with my ds in the wendys drive in line. I told him he could get something for taking me etc.

That's great--you are in the HOME stretch. I wish I wasn't so freaked out about the Thyrogen and the weird reaction I had.

I've been off work for a few days getting my DD moved out of her dorm and then I teleworked yesterday doing some online training. Easy stuff. Today, I got to work and had to do my *real* work. OMG, something is wrong with me. I think I am already feeling the effects of no meds after day 6. Not good. My job is VERY financial and requires a lot of concentration. While, physically, I feel decent, mentally, I've been struggling all day. I really don't think I can make it and do a decent job at work.

Soooo...I've put in a call to my endo to explain what's going on and that it's not going to be a good time for me to do this. I'm either going to have my Tg test done today with only 6 days off meds or I may just throw it all in and try it sometime later. At any rate, I haven't heard back from him and it will be his decision.

The last time I went hypo, I was in my mid-30s. I swear I didn't notice anything until at least 2 weeks into it. I guess getting older makes it harder. I feel like I cannot concentrate on my job or even think. It's like my mind is really slow.
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Old 05-13-2010, 07:12 AM   #702
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So Christine what happened? Just wondering why you are not liking Thyrogen?

Well yest. I got the radiation dose. They still told me stuff like flush the toilet twice, dont let dh sleep with me (glad he is at a conference until tonight) drink tons of water among other things as they dont want the radiation in me or my colon etc. they said. Also the 3 foot rule etc. I am glad I have alot of faith because this is a long weary journey right now.

I am just getting so sick and tired of this. I am glad tomm. is the last day. and tues. I am going to disney, it will be a great anniv. and b day for me and oh did I mention I made about 10 adrs for 5 days. I think I am in Piglet mode and will turn into Pooh by the time we get out of there, oh I am dreaming of places like Kona, Coral Reef, Narcoosees etc.
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Old 05-13-2010, 08:37 AM   #703
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Quote:
Originally Posted by luvmarypoppins View Post
So Christine what happened? Just wondering why you are not liking Thyrogen?
Well, the doctor called back yesterday and I went through it with him. He said that 6 days off meds was just too early for a test. So he wants me to take Cytomel (short acting T3) for 6 days, and then be off all meds another 6 days. Apparently the 6 days on Cytomel will make me feel normal while the T4 leaves my body and then I'll probably feel like poop again for 4 of the last 6 days.

I couldn't pick up the perscription yesterday so I'm having another rough day. On top of it all, I am feeling panicky all the time. This withdrawal is really messing with me.

As for the Thyrogen, on my third round of it back in 2006, I had a weird, freaky reaction to it that last for 3 hours in the middle of the night. I got REAL hot, real red, and my heart rate was about 160 for several hours. Don't want to have that (or worse) happen again, which is why I'm doing it this way.
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Old 05-13-2010, 01:09 PM   #704
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luvmarypoppins: Just wanted you to know that I have a scan scheduled for May 14th too. Mine is at 2 PM. Here's hoping that we both get good results.
Best of luck tomm. My scan is for 12:30 and I doubt that will happen. Probably more like after 1. Hmm, I am thinking one more crappy meal, one banana in the morning, throw in the water to get rid of the radiation and other stuff, hmm, hmm. I will be in disney on tues. sitting on my Polynesian balcony. I have about 10 adrs for 9 days, my dh and I are going to be eating well for my b day and our anniv. So the 10 lbs. will probably be back soon!!
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Old 05-13-2010, 03:02 PM   #705
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Hoping everyone has a beautifully clean scan tomorrow.
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