# a month on LID??help please



## crimebuff (May 25, 2012)

I was just told that I have to be put on LID for at least a montth because they won't schedule my RAI until the TSH is below 100 (isn't that high?) and then it might take 2 weeks because they don't have rooms at the hospital available-and I would have to stay 2 days-does this make sense to you guys?? I told them that I thought that was insane but they-Sylvester Cancer Center have the thyrogen. Clveland Clinic does not require you to stay home, but I am on a waitlist for thyrogen-#9 on the list but I don't have to start LID yet. What would you do?I have well-differentiated papillary cancer-clean lymph nodes-cleveland protocol sounds better to me...


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## teri2280 (Feb 7, 2012)

Longer time on LID, hospital for 2 days, and you'd get the thyrogen for sure at Sylvester, while CC is less time on LID, no hospital confinement, but no guarantee that you'll get the thyrogen? Honestly, being one of those people who just couldn't handle going hypo, I'd do Sylvester in a heartbeat! I personally think that not having to go through hypo-hell is worth a couple of days in isolation or a couple more weeks on LID.

I was on LID for 7 weeks pre-RAI, for whatever reason. Granted, my first 3 weeks, I got permission from my surgeon to "cheat". She said that my endo was being silly having me start it that early, that she would have had me start it 4 weeks out, and it wasn't detrimental the first 3 weeks, but to really follow it for the last 4. I didn't cheat big time, but if I was craving milk, I'd pour a sip or 2. In hindsight, the LID isn't as horrible as it sounded. Was it a pain? Yes, because I didn't realize just how many things contained soy, but it wasn't super HORRIBLE. I'm a dept. mgr. at Walmart, so I have the connections to find out if iodine is used in any capacity in their meat processing. (It's not, for the record.) Did I get sick of having chicken and frozen veggies for dinner every night? Yes, especially when the hubby and I are totally addicted to Betty Crocker boxed potatoes! But it wasn't super bad. The worst part for me was honestly the timing of everything. Memorial day was the Monday before my RAI, so I was SUPER careful not to mess up the LID. That kinda sucked as there were a couple of parties we could have gone to, but stayed away from because we knew I couldn't have the hot dogs, or didn't know what store the hamburgers came from, etc.


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## Octavia (Aug 1, 2011)

Okay, wait a second... what do they want your TSH to be? You say less than 100...is it that high now? If so, you don't even need the thyrogen.

Can you double-check your post? It's confusing to me. If your TSH is already over 100, then you're ready for RAI TODAY, and you certainly don't need any thyrogen. If you made a mistake, and what you meant to say is they want your TSH to be over 100 before they'll schedule your RAI, then you won't need Thyrogen at that point. Any...just need some clarification. 

What dose of RAI are they planning to give you?


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## crimebuff (May 25, 2012)

Sorry my post was so confusing;I am confused myself.The doctor's assistant said my TSH had to be below 100 after being on a LID for 2 wks weeksand then they
would schedule the RAI when they had room availability-don't know what my tsh level is now-TT 3 weeks ago and startd synthroid 2 days later-no blood tests yet. Please explain about what my levels should look like before RAI and how thyrogen fits in.Thanks


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## teri2280 (Feb 7, 2012)

Octavia said:


> Okay, wait a second... what do they want your TSH to be? You say less than 100...is it that high now? If so, you don't even need the thyrogen.
> 
> Can you double-check your post? It's confusing to me. If your TSH is already over 100, then you're ready for RAI TODAY, and you certainly don't need any thyrogen. If you made a mistake, and what you meant to say is they want your TSH to be over 100 before they'll schedule your RAI, then you won't need Thyrogen at that point. Any...just need some clarification.
> 
> What dose of RAI are they planning to give you?


Agreed! I mis-read your post, thinking you said they want your TSH over 100.


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## teri2280 (Feb 7, 2012)

LOL. We were typing at the same time. I'll let Octavia answer your questions.... I see she's still online, and she's been around this stuff way more than I have. (I know what my endo shot for, but my endo isn't the "norm", by ANY means.  )


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## Octavia (Aug 1, 2011)

Okay...here's what I believe:

My doc's requirement (and I think this matches others on this forum) was that my TSH had to be OVER 30 for me to get the RAI. This required me to be off my Synthroid for 2-3 weeks. (At 3 weeks off Synthroid, my TSH was 104...plenty high enough!) The longer you're off Synthroid, the higher your TSH will be, and the higher your TSH, the more hypothyroid you are. Normally, your TSH should be under 1.0

The Thyrogen is a drug that "artificially" raises TSH, without you having to go hypothyroid for 2-3 weeks. 
- If you take Thyrogen, you'd only need to stop your Synthroid for a few days (not weeks) IMMEDIATELY before getting the Thyrogen shot. 
- If you stop your Synthroid for 2-3 weeks, you should not need Thyrogen. It's one or the other.

The LID has absolutely nothing to do with TSH. The LID simply depletes your body of iodine so your cells become very thirsty for iodine...and the only cells that will absorb iodine (RAI in this case) is thyroid cells. Therefore, the cells that absorb your RAI treatment will be thyroid cells, and those thyroid cells will show up in your body scan images. In addition to making those cells visible in the scans, the RAI should kill them off. That's the point...to kill off any remaining/rogue thyroid cells so they don't spread cancer. Occasionally, some cells don't get killed off by the RAI...they stick around and multiply. That's why we have to go through the scan a year later (and a year after that, and so on), to look for any remaining cells. If there are any there, then they'll need to be killed off with additional RAI.

Hope that helps!


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## joplin1975 (Jul 21, 2011)

Again, agreeing with Octavia. My guys minimally wanted my TSH to be 35-40 range. After 14 days, it was in the low 70s.

FWIW, my Nuc med guy said avoid hospitalization at all costs for RAI. I took a lower dose and may have to go through it all again in September based on his recommendations. I don't know what's the best option, just noting what I was told.

I was also told the LID has recently been found to have no statistically significant effect, ergo I was told not to bother. I sort of regret not doing it, just to maximize the RAI, but who knows...


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## Andros (Aug 26, 2009)

teri2280 said:


> Longer time on LID, hospital for 2 days, and you'd get the thyrogen for sure at Sylvester, while CC is less time on LID, no hospital confinement, but no guarantee that you'll get the thyrogen? Honestly, being one of those people who just couldn't handle going hypo, I'd do Sylvester in a heartbeat! I personally think that not having to go through hypo-hell is worth a couple of days in isolation or a couple more weeks on LID.
> 
> I was on LID for 7 weeks pre-RAI, for whatever reason. Granted, my first 3 weeks, I got permission from my surgeon to "cheat". She said that my endo was being silly having me start it that early, that she would have had me start it 4 weeks out, and it wasn't detrimental the first 3 weeks, but to really follow it for the last 4. I didn't cheat big time, but if I was craving milk, I'd pour a sip or 2. In hindsight, the LID isn't as horrible as it sounded. Was it a pain? Yes, because I didn't realize just how many things contained soy, but it wasn't super HORRIBLE. I'm a dept. mgr. at Walmart, so I have the connections to find out if iodine is used in any capacity in their meat processing. (It's not, for the record.) Did I get sick of having chicken and frozen veggies for dinner every night? Yes, especially when the hubby and I are totally addicted to Betty Crocker boxed potatoes! But it wasn't super bad. The worst part for me was honestly the timing of everything. Memorial day was the Monday before my RAI, so I was SUPER careful not to mess up the LID. That kinda sucked as there were a couple of parties we could have gone to, but stayed away from because we knew I couldn't have the hot dogs, or didn't know what store the hamburgers came from, etc.


You are hypo and should be ready for RAI. These people have to get their act together. I agree with Octavia and Joplin!


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## teri2280 (Feb 7, 2012)

Crimebuff, are you still taking your synthroid? Or have they already had you stop it?


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## crimebuff (May 25, 2012)

I think I'm beginning to get it- the TSH measures the degree of hypothyroid which you must be before RAI. If I'm still on synthroid I will not become hypo no matter how long I am on LID. If that's accurate, I don't know what the doctor's office was talking about. Now I know what questions to ask-you've helped me so much. Going on Thursday to see the doctor at the hospital that requires hospitalization- I guess whoever gets the thyrogen first wins Also, I am only willing to go up to 50 mc based on the new studies that less does the same as more. Cleveland Clinic agreed- don't know whether they will at Sylvester.


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## joplin1975 (Jul 21, 2011)

I can't imagine you'd be hospitalized at 50 millicurries. I would have had to go inpatient if I went 100 or higher, but that was because of state regs which my radiologist said "really don't make much sense."


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## teri2280 (Feb 7, 2012)

joplin1975 said:


> I can't imagine you'd be hospitalized at 50 millicurries. I would have had to go inpatient if I went 100 or higher, but that was because of state regs which my radiologist said "really don't make much sense."


Agreed. I had 100 (well, actually 100.xx, but still...) mci and was able to go home. Had I needed more than 100, I'd have had to have hosp. isolation, though.


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## joplin1975 (Jul 21, 2011)

And yes, you are correct...there's no correlation between going hypo and LID.

Just for all our info, here's some links I've been reading re: LID (I'm trying to decide if I should do it on my own this fall):

http://www.ncbi.nlm.nih.gov/pubmed/20860420
Given that LIDs reduce urinary iodine measurements, increase I-131 uptake, and possibly improve efficacy of I-131 treatment, we currently favor the use of a 1-2-week LID before I-131 therapy or scanning. However, more research is needed to clarify the role of this dietary intervention.

http://thyroid.about.com/cs/newsinfo/l/bllowiodinediet.htm
Overall, the researchers concluded that a low-iodine diet improved the effectiveness of the treatment.

http://jcem.endojournals.org/content/95/1/230.abstract
Conclusions: Our study indicates that the body iodine content is not an important determinant of thyroid ablation, when preparing the patients with either THW or rhTSH.

PS -- note that in the studies which found a benefit to LID, they all referred to "one or two week" diets, not month long diets.


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## crimebuff (May 25, 2012)

Thanks to all of you wonderful posters.I received a call today from Cleveland Clinic - after I harrassed them- and they just ot a lagre delivery of thyrogen so I'm going with them-2 week LID, at home isolation-of couse, nothing oes smoothly-the endo and I agreed on 50mc and my record says 100 so they have to get back to me-with no lymph involvement and the results of that new study that says lower radiation gets same result, I insist on 50. The saga continues...back to the surgeon tomorrow to look at these 4-5 disgusting pimple like (although not red) bumps on the incision-TT 3 wks ago


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## teri2280 (Feb 7, 2012)

crimebuff said:


> Thanks to all of you wonderful posters.I received a call today from Cleveland Clinic - after I harrassed them- and they just ot a lagre delivery of thyrogen so I'm going with them-2 week LID, at home isolation-of couse, nothing oes smoothly-the endo and I agreed on 50mc and my record says 100 so they have to get back to me-with no lymph involvement and the results of that new study that says lower radiation gets same result, I insist on 50. The saga continues...back to the surgeon tomorrow to look at these 4-5 disgusting pimple like (although not red) bumps on the incision-TT 3 wks ago


Yay for thyrogen!!  That wasn't bad as far as wait time at all!!


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## joplin1975 (Jul 21, 2011)

Bumping up for interpret.


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