# Lid



## llhg71 (Apr 6, 2011)

I will have thyrogen shots next week and a scan after that. My Endo. didn't act like I needed to follow the LID diet. He felt that I just needed to stay away from high iodine items like fish. Why do some doctors want you to do the diet and some don't?


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## Octavia (Aug 1, 2011)

I don't know. Some docs just don't "believe in it" so to speak. My doctor did not suggest the LID to me, but I did it on my own simply becase I wanted the best possible chance of success for my RAI treatment. I also did it for my 1-year scan. The way I see it, it's not going to hurt, and it might help.


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## llhg71 (Apr 6, 2011)

Hmmm... My diet will coincide with Christmas dinner and that really bites!


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## Octavia (Aug 1, 2011)

That does bite.


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## joplin1975 (Jul 21, 2011)

My first WBS and RAI, I did not use thryogen and did not do the LID. My surgeon, at the time, said there's not reliable evidence in the literature* that showed it was really worth it. His feeling (again, at the time) was "You just had surgery for cancer...why make things any harder than needed?"

For my second WBS, I used thyrogen. This time around, my radiologist said that there was good evidence regarding the efficacy of thyrogen, however, he just wanted to make sure that we were working with the best possible information, so he mandated LID if thyrogen was used.

Side note...my college roommate got married smack dab in the middle of my LID period. I was a bridesmaid and wanted to have fun, but I was really careful about food and brought my own meal to the reception. I told my nuclear medicine tech that I had done this and she was all "WHAT?? I'm not suppose to say this, but I wish someone told you that if you were REALLY good during the rest of the 14 days, you could have cheated with one meal."

* I did a search myself and there is a fat ton of conflicting articles out there.


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## Abcdefg (Mar 16, 2012)

I've been on LID 15 days now. It sucks. Beyond words actually. Had Thyrogen shots yesterday and today, I123 drink, and scan is Friday. I have to say it's been the worst 2 weeks of my life. I have not done well on this diet. I'm run down, constantly hungry and wanting real food. If it wasn't for the encouraging posts on this site, I might have thrown in the towel.

Ps. the instructions the doctor gave me conflicted with Nuc Med's. They told me today I only had to avoid salt and seafood... not everything the LiD guides say. Damn. But they did add they want me to stay on it through Xmas? Not happening though lol. TG test is Sat morning, then I'm going for bacon and eggs! Pointless to do any more lid if they're not giving me a treatment dose.


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## Octavia (Aug 1, 2011)

Abcdefg, if your scan shows clear, there's no reason to stay on the diet any longer. I found out my results about an hour after my scan...hopefully, you can do the same and have guilt-free bacon and eggs!

Or...did they say you had to stay on it until after your TG labs?


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## joplin1975 (Jul 21, 2011)

But, for your sake, I really, really hope they get you a treatment dose. Even if that means LID a bit longer.


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## Abcdefg (Mar 16, 2012)

Octavia said:


> Abcdefg, if your scan shows clear, there's no reason to stay on the diet any longer. I found out my results about an hour after my scan...hopefully, you can do the same and have guilt-free bacon and eggs!
> 
> Or...did they say you had to stay on it until after your TG labs?


Ya until after the TG labs on Sat.

And no, I won't get the results right away. The dr is away over the holidays, plus the tech told me they won't be writing up the reports until the 28th. No treatment dose is scheduled at all.

I had a look at the requisition (the tech briefly showed me) and it said

"Thyroid adenoma with raised Thyroglobulin. Suspect ectopic thyroid tissue"

Stupid dr . No wonder they've made it non-urgent.


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## joplin1975 (Jul 21, 2011)

Suspect ectopic thyroid tissue but no RAI scheduled??

This is insane. I'm sorry...


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## Octavia (Aug 1, 2011)

Abcdefg...did you get an RAI treatment dose after your completion thyroidectomy?


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## llhg71 (Apr 6, 2011)

I feel for you Abcdefg. I started this diet on 12/10 after my doctors appointment. Because of a hangup with insurance, my thyrogen shots won't be delivered until today. This does not leave enough time to do everything. So I don't start my shots until 12/26 and my scan isn't until 12/31. So that's 21 days of this stupid diet.


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## Octavia (Aug 1, 2011)

llhg71 said:


> So that's 21 days of this stupid diet.


I think I did 21 days the first time I did the LID. By that time, it was no longer just the LID. It was the LIDFH. (Low Iodine Diet From you-know-where!)


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## Abcdefg (Mar 16, 2012)

Octavia said:


> Abcdefg...did you get an RAI treatment dose after your completion thyroidectomy?


Nope, no RAI ever. I've been in limbo the whole time. Ugh.

Scan this morning, then TG tmr. I hope to never do this again anytime soon. The Thyrogen shots HURT. Both my hips are still aching.. Plus I had nausea pretty bad the first day.

Almost done this diet though... one more day.


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## llhg71 (Apr 6, 2011)

Wow Abcdefg! Who is coordinating your care? I can't understand why it's taking them so long to do the process. I had my TT on 8/25/11 and my RAI treatment completed by 10/15/11.


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## Abcdefg (Mar 16, 2012)

llhg71 said:


> Wow Abcdefg! Who is coordinating your care? I can't understand why it's taking them so long to do the process. I had my TT on 8/25/11 and my RAI treatment completed by 10/15/11.


And therein lies the problem. NO ONE is coordinating anything. The Rad Onc messed up, and my testing and treatment have been stalled since.

Update though: had my scan this morning. Took almost an hour. I left after, and 2 hours later they called me wanting me to come back in the afternoon for more pics . I was leaving for work, so I'm scheduled tomorrow morning instead. I'm guessing my uptake was high.


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## joplin1975 (Jul 21, 2011)

Abcdefg said:


> And therein lies the problem. NO ONE is coordinating anything. The Rad Onc messed up, and my testing and treatment have been stalled since.
> 
> Update though: had my scan this morning. Took almost an hour. I left after, and 2 hours later they called me wanting me to come back in the afternoon for more pics . I was leaving for work, so I'm scheduled tomorrow morning instead. I'm guessing my uptake was high.


Not super surprising, but still...boo. Hope things go ok today!


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## Abcdefg (Mar 16, 2012)

They did 3 scans on me. Another WBS, a SPECT CT, and a CT. They saw something, or they wouldn't have done so much .

Won't get the results for a while (probably in the mail, since I requested the reports and pics).

I'm going to try to enjoy xmas and forget about it for a while.

Happy holidays everyone


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