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Old 02-10-2009, 11:06 AM   #331
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I had my thyroid removed in June and we are still working on the dosage. She needs to increase it slowly because when she tried to do it more quickly I didn't feel well. Right now I am up to 150 mcg. I'm hoping that this does the trick.

As far as the low iodine diet, I did it. It wasn't fun at all. Right before I had the treatment they decided I didn't need it based on the body scan so I did it all for no reason!
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Old 02-10-2009, 06:13 PM   #332
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It's been two years since I had my cancerous thyroid removed. I did the radioactive iodine diet and it was alright. I remember eating alot of potatoes, hamburger, unsalted peanuts, and, oh yea, kosher wafers (nasty). I think I was able to use kosher salt for seasoning. Once you have a list of what you can eat, it's not that big of a deal. I did wolf down a big meal when it was all over with, though. The worst part was being a prisoner in my own home for over a week! My wife took good care of me while I was radioactive.

I had my last blood work done this past year using thyrogen shots and I'm all clear (as far as they can tell). Praise God.

If you're going through the process now, trust in the Lord and remember His many promises to love us and to watch over us!

FYI...I take 175mcg/day. I'm about 6'2" 200lbs.
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Old 02-10-2009, 06:34 PM   #333
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I also have no thryoid and I take levoxy, 244 mcg/day (two of the 112 tabs). For whatever reason I was able to drop from around 350 on synthroid when I switched. My endos have liked to keep my TSH < .1 b/c of the cancer.
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Old 02-26-2009, 10:52 AM   #334
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I just found this thread and boy am I glad. I am hypo. Let me give you a brief history. Was diagnosed with Hashimoto's thyroiditis when I was in my early 30's. I am now 63. Never had much of a problem all those years until about 4 years ago I started having a problem breathing, climbing steps and my heart was beating fast. My thyroid dr had just changed my meds about 3 weeks before. The doctor sent me for all kinds of tests thinking something was wrong with my heart. About 10 tests and 2 weeks later they found out that I was getting too much thyroid. I was taking .150 7 days a week. So they knocked off 1 day and all symptoms went away. Was fine again until last July when my family doctor noticed my last tsh test was on the low side, .4. So he dropped me from .150 6 days a week to .137 7 days a week. Take meds for 6 weeks then get a blood test. 6 weeks later it was .18. (I felt he was going the wrong way with the meds but I figured he was the dr. not me) So then he dropped me down to .125 7 days a week. 6 wks later blood test was .11. He put me back on .137 to try again. I asked to have all the tests done, not just tsh. I just got bloodwork back last night. Tsh now .04! MY t-4 total was 13.4 high (range 4.5-12.5) My Free T4 index was 4.2 high (range 1.4-3.8). My T3 total was ok 128. my t3 uptake was also ok 31. my t-4 free was ok too 1.6. I don't see the doctor again until next week and they won't tell me anything on the phone. I have no idea what all these numbers mean. Can anyone help? Sorry, guess not such a brief history. Thank you

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Old 02-26-2009, 11:20 AM   #335
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I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.

I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc.

I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?

Any insight, TIA.
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Old 02-26-2009, 11:33 AM   #336
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Why do you need to stay overnight for the RAI? I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.
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Old 02-27-2009, 09:50 AM   #337
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Quote:
Originally Posted by KAMLEM View Post
Why do you need to stay overnight for the RAI? I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.

Each individual state has restrictions on whether you can leave the hospital after a high dose RAI treatment or you must stay.

In Virginia, if you have more than 29.9 mci of radiation, you must stay overnight. When your radioactive levels decrease to a certain level, you can leave.

Some states don't have this restriction and they let you leave right after you have a high dose treatment. The problem is that after these treatments, you emit an elevated level of radioactivity that can be harmful to children and pregnant women if they are within 6 feet of you.
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Old 02-27-2009, 09:53 AM   #338
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Quote:
Originally Posted by luvmarypoppins View Post
I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.

I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc.

I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?

Any insight, TIA.

Here is the insight on this.

A few years ago, they did a study with people who scanned and had RAI after being off their meds and they tested against giving them Thyrogen shots and having the RAI. The RAI was less effective for those having Thyrogen shots. Treatment results were better if a person was removed from their Synthroid.

They were trying to get to a point where Thyrogen worked as well as going off your medication. Maybe they have gotten to that point (I haven't kept up with the studies) or maybe they results are close enough that it doesn't matter.

So, this is why you will get conflicting information. Some doctors still don't believe that TREATING they thyroid cancer under the Thyrogen injections is as effective or as good as removing you from your meds and then treating. Other doctors feel comfortable with it.

And certainly, if you have other health risk factors, going very hypothyroid could be detrimental to your health.
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Old 02-27-2009, 10:43 AM   #339
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Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.
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Old 02-27-2009, 03:12 PM   #340
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Quote:
Originally Posted by luvmarypoppins View Post
Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.
Yes, it's probably too late. But, if you trust in your doctor and put your faith there, then you have to believe that you are doing the best that you can do for yourself at this time.

When I was first diagnosed in 1995, there were no support groups, no way to get my hands on any research, NOTHING. It all happened so quickly that I wasn't sure I was with the best doctor but when someone tells you that you have cancer, you don't really feel like you have time to shop around like you're buying a car. So I went with who I ended up with. Overall, I did not get optimal treatment initially and I ended up having successive treatments down the road that probably I could have avoided. But, well, what are you going to do, you know?

I agree that being in the hospital isolation is going to be FAR easier on you then staying at home. Depending on the dose they give you, you will not feel that great so it might be better to be alone. Also, you don't have to worry about tainting the silverware, the toilets, the bath, etc. The hospital will have to deal with that.
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Old 02-27-2009, 06:26 PM   #341
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Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on (line for date)
Thyrogen Injection 2 on (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?

This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes.

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc.

I am only staying overnight for the lst day. That is a thurs., coming home on Friday the 13th and then sat. I am suppose to go for a blood test. at the local lab.

I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and hardly the rad. onc. did. at all.
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Old 02-28-2009, 07:48 AM   #342
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luvmarypoppins....if your not comfortable with any part of your medical team I encourage you to find new ones. We did this with my DH and it was the best thing we ever did. Very hard to do when your in the middle of all this. But you have to deal with them so often and if you don't see eye to eye, or have problems with them it is just going to make things harder. Good luck on all the upcoming things. Wish you nothing but the best.
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Old 02-28-2009, 08:16 AM   #343
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Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on (line for date)
Thyrogen Injection 2 on (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?


Yes, I get the same paperwork when I have my scans. Usually you get a shot on Monday, a shot on Tuesday, you take your RAI on Wednesday and then scan on Friday. That's how it works with a scan. Wednesday is usually when your Thyrogen-stimulated TSH peaks so they like to give the RAI at that point. It is still probably pretty high for a few days.

This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes.

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc.


The diet is tough and conflicting. I never had any type of butter or margarine. There was a Fleischman's product that was deemed okay, but at that point, I just tried to avoid it. By the time you get to the hospital and eat their food, your RAI will be already at work so at that point, your as safe as your going to be with the diet. The key is to try your best and that's all you can do. Just remember that many years ago (when I was diagnosed), the Low Iodine diet wasn't even done. All they told me AFTER I had my treatment was to avoid fast food and seafood. That was it. Plenty of people did fine back then. Anything you can do with your diet is just helping and making it better.

I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and hardly the rad. onc. did. at all.


You know, there's always one jerk in every medical team. I was lucky that the radiology people with me were FABULOUS, it was just my endo and his nurse that plagued me for years. They were okay for the most part, but at times, they caused me a LOT of anxiety. I stayed with them because of their reputation. If this radiologist is one that your doctor trusts, you may have to overlook the bad bedside manner. So long as your treatment is good, you might just have to tolerate it.
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Old 03-02-2009, 09:06 AM   #344
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Well I was sick all week end throwing up with a virus I caught from ds21. So all week end I had absolutely nothing but gingerale and distilled water ice cubes. I am having dh call the rad. onc. today and see if this is o.k. I think I kept the synthroid down yest, but cant be sure. Never a dull moment. Well at least I didnt do the diet for 2 days, but dont know if this is acceptable or not. gheesh, never a dull moment around here lately.
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Old 03-02-2009, 08:31 PM   #345
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Hope your feeling better soon luvmarypoppins. We had that here last week and it's miserable.
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