WBS results today-sorta good news?

WBS is finally done. Cancer didnt spread outside of my neck but there are some areas within the neck and lymph nodes that showed uptake from the tracer dose. I go back tomorrow at 1 pm for RAI, 150 dose. Doc said that usually does the trick but as we all know, only time will tell. As I have papillary with tall cell variant -less than 25% according to path rpt, my doc advised me at my post op that he would watch me more closely. I haven't talked to him yet today. I wasnt surprised that cancer is still present, so I feel ok about the results since I prepared myself to hear that. I just am relieved it did not spread further.

Nuclear med doc also stated that as soon as I swallow the dose tomorrow, I can go off LID (say whaaaaaat???)..... I was expecting to stay on for 48 based on what I have read... any thoughts on that from my fellow thyca fighters? I was just happy to know that I could eat pizza in a few days, but if I can have it tomorrow, it will be like my birthday, Christmas and the Sabres winning the Stanley cup all rolled into one day (im a big hockey fan, lol). I was advised I'd get written instructions tomorrow but to go get lemon candies today and even regular lemons too, and use those for 5 days. I saw sugar free lemon candies at the store the other day,,, they did not say they were sour, but I assume just lemon in general is good. I am mostly concerned about the losing taste side effect more than anything so I want to be extra careful about that. If anyone has any other tips or suggestions, I would love to hear-tho I will be googling up a storm later. I asked about the salagen and nuc doc said I would have to f/u with my doc for that.

last question-I am scheduled to start levothyroxine 125, this sunday- this will be my first time ever on thyroid meds. Since my TSH was already so high (162, as of 10/8, so probably even worse now) how long before I feel even a small bit of relief? I am trying to estimate when I can return to work.

thanks!!

nikki

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Good for you! My endo said I could stop the lid once I take it too.

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I would be careful about eating pizza with a dose of 150mCi. Many people report nausea with RAI and it tends to be dose-related. I didn't have nausea but I did spend 4 days in bed with flu-like symptoms and very little appetite. My dose was 162mCi. Did your doctor not want to give you a short-term boost with Cytomel? It will probably take a good 3 weeks to a month for your T4 to get high enough to allow you to feel better. Take it easy and be good to yourself. I hope it all goes smoothly for you.

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I would stay on it a couple days after the pill- couldn't hurt and a couple of more days are not the end of the world.
Great news!

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Just spoke with doc office and they confirmed ok to go off diet after getting pill tomorrow. When I asked if I could resume taking my multi vitamin(it contains iodine) nurse said to wait til after post scan... I wasn't aware I was doing another one. She said nuclear med dept will schedule it tomorrow when I go in for next week Thursday- 1 week after rai dose. Guess that's to make sure uptake is good. But won't reading be compromised if I'm not on LID? I'm going to ask all these questions to doc at hospital tomorrow of course, as I know they're the professionals but I like to do my own research too. It seems each doc has different protocol on how this part goes anyway. And just when I thought I was out of the confusion stage of having 7 different answers to the same question. Lol

Nuc doc did say to make sure I eat before I come in for rai to ensure my stomach lining is protected. While I want pizza ASAP I will gauge how I feel tomorrow before eating anything. I'm making homemade chicken soup now with herb ox no salt no sodium bouillon packs to be safe :) Cabro I asked about cytomel and the salagen any doc said no to both. I'm just hoping for a good enough boost to get rid of my foggy brain so I can somewhat function at work. I don't wanna miss much more time if possible. I'm out of sick time as of last week so my bank account is gonna be getting mighty stressed soon . My ADD meds are helping but not by much

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As best I can remember, I went back to work doing 12 hour ER shifts within a week or two after my RAI but it was at least a couple of months before I could do much more than go to work, then go home and go to bed. One thing to bear in mind is that there is an lag between when you start a given dose of thyroid replacement and when it starts to actually have a perceptible physiological effect.

Take things once step at a time. I think it's a nearly universal tendency for folks to want to be better before they're actually capable of being better so I advise erring on the conservative side in calculating a return to work estimate. Hope all goes well with you.

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the pizza probably will not taste as good as it looks, nor as you imagine. your taste buds will be "off" from being on the LID and from the RAI. this could take a few months to correct itself.

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Pizza was the thing I craved the most and beingcelestial is so right! It didn't taste nearly as good as I had hoped. I was really tired and felt pretty lousy by the afternoons the week after RAI isolation was over. I ended up working part time for two weeks. My mind was pretty messed up. When I had some olives, and I couldn't taste the salt, I knew my taste buds were pretty shot. can't wait til they get back to normal. Still looking forward to enjoying some pizza soon! Good luck.

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Well I swallowed my glowie pills at about 1:30. 2 pills-dose ended up being like 141.5 nuclear med doc said they ordered 150 but there's a 10% swing and it's ok. Of course, because no one can ever give the same darn answer, the doc today said to stay on the diet for the rest of the day. So even tho my doc ( the same over conservative doc that said to do LID for 6 weeks before WBS) and the nuc docs from yest said I could go off as soon as I took the pill I'm gonna stay on the LID til tomorrow. Tho I will admit I had 1 mini Reese peanut butter cup about 30 mins ago. I couldn't resist and it didn't disappoint lol it tasted even better than I remember. I hope to not have many issues with my salivary glands and taste buds. So far, since my TT and up til now I just have a "bad taste" in my mouth and sometimes water tastes bad. I just put a slice of lemon which helps. I am assuming my TSH is prob nearing 200 at this point so overal I'm just kinda jello-y and def feel "drunk" most of the day. I ll prob stay out of work through next week and go back on the 28th but we ll see. I m done fighting the inevitable, people were surprised I went back 2 weeks after my surgery and made it til last thurs. Just hoping I feel some sort of even minimal relief once I start my meds even tho I know it'll take time to really get working.

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you only have to do the LID for 2 weeks. if you are diligent, that should be enough time to get the iodine low. many drs. recommend staying on the LID for 48 hours (2 additional days) after the consumption of the RAI 131. check out my post "RAI Restrictions". I typed it from the paperwork that the RAI officer gave me.

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