whole body thyroid scan

I got a total thyroidectomy in June of this year. My endo stated that he did not think I needed RAI. Fast forward to now, I am getting ready to do a body scan as a follow up. I will be going off my synthroid today. My endo said that right after the body scan I can take my medication again. I have an appt scheduled to see him a week after my body scan to go over the results.

My question if my body scan is positive, don't I need to be hypo to get treatment? I would hate to go through the whole process of being hypo, do my scan, take my hormones later that same day, and then see my doctor a week later and tell me I need RAI, and to go another 6 weeks being hypo since I took my synthroid for a few days. Should I not take my synthroid or cytomel until I get my results back from body scan?

Can someone help explain me understand?

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thank you butterfly501 for responding. :)

when i saw him and asked him what the follow up treatment would be, he mentioned a body scan. since that visit, i have done more research and noticed articles saying tg & ultrasound is good. my guess why he chose body scan is maybe to check if there has been any spread to distant areas? i did have a ct chest xray several months before by another doctor and informed him of this. still he seems set on the body scan.

ya i am scared of the exposure even if it is small, if the test really isn't needed especially.

i called my insurance and left a message asking about thyrogen. will see what they say.

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butterfly, do you happen to know if the WBS can distinguish between cancer cells and non cancer thyroid tissue? thanks.

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yes my tumor was small. i will look at the ATA guidelines. thank you.

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What was the size of your tumor?

Mine was 1.5 and it was recommended that I go through treatment. It was explained to me, by my doctor that anything 1 or under is considered very small and no further treatment is required, anything between 1 and 2 was considered a "gray" area and treatment is recommended, but I had the right to opt out. Given my family history of cancer (niece, mother, and aunt) we felt it was best to go through the treatment.

I go off of my Synthroid on Sunday (Dec. 16th), Jan. 1st start LID, Jan. 7th scans, Jan. 10th receive RAI, and follow up scans on January 17th. I will have two years of follow up scans and then be considered cancer free.

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Well here is a recent story worth reading to original poster

http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/di scussion/if-you-are-unsure-about-rai-read-this/

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biomedee- i read the story, that is good to know. it does give me some piece of mind that the WBS can be life saving. thank you for posting the article! :)

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auntie32- mine was less less 1. so you will go off synthroid tomorrow.. you sound at the same time as me. but i calculated that you will be off the synthroid for just under 4 weeks. i have been reading anywhere from 4-6 weeks it takes to be off synthroid and do WBS. i am curious why your doctor made it under 4 weeks? i have been worried about stopping my meds. my doc said 4 weeks on cytomel and 7-10 days off cytomel, then body scan. at first i was going to do 6 weeks just to make sure my tsh was high enough, but now i keep taking my pill and holding it off.. maybe just go off my thyroid pills for just 5 weeks.. ugg so much to think about. if i get approved for thyrogen, then will probably go that route, but haven't heard anything back from my insurance yet. thank you.

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I am the writer of that story! Thanks BiomedEE for referring joy15 there:)

I just cannot say often enough how passionate I am about this There is so much you will learn from a WBS that you cannot learn from an ultrasound or thyroglobulin levels. Even my stimulated thryogloblin is undetectable, but that node is clearly taking up RAI. Its just not producing thyroglobulin.

You are so right in how efficient it would be if you could have your scan read immediately and get RAI the same day if needed. That's how my protocol went but it required the cooperation and availability of a lot of people.

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hi kathryn,
thanks for writing :). your tsh to do the whole body scan needs to be over 30? is that right? that is what i read somewhere. if that is the case, i wonder why doctors make us do a standard 6 week protocal i have heard. cause if your over 30 in 3 weeks, that would suck to have to just do another 3 weeks for nothing. unless the exam gets more and more accurate the higher the tsh gets. not sure. joy

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Hello -

My doctor said that anything under 1 did not require RAI treatment... but since mine was condsidered in a "gray" area at 1.5 treatment was recommended, I will go through the WBS on January 7th. My nurse set up the timeline and scheduled everything. She also explained what can or may happen while being off the meds. I have an aunt that went through these treatments with the same doctor and completely trust their expertise as this is all they do. Having a history of cancer in my family (only in recent years - aunt, niece and mom) I have to completely agree with Kathryn... The WBS will give a better picture of what exactly is going on. While you are blessed that it was 1 or under, you will want that peace of mind that everything is being done for you and your body!

I will say this, since my surgery on November 14th I am pretty sure that I have after I hit the 3 week mark began to become hypo because of some of the symptoms I was having. So I know the synthroid they have me on is not enough right now. I am already more tired than normal, hot one minute, cold the next and just recently started having some leg cramping... all very normal from what I have been told and read.

I hope this information helps... it can be scary and sometimes reading so many different scenarios on here can be scary as there seems to be NO standard protocol for treating TC. So as new as I am to TC, I also feel confident in the decisions for my care that have been made so far... my niece and mom battled very, very difficult and rare cancers and they are both survivors, lots of questions were asked and decisons were made in that process. I am treating my condition no differently than they have theirs, just for my own peace of mind. Remember, your condition is not like anyone elses. What works for one may not for another. Asking lots of questions, advocating, educating yourself and having pro-active doctors are key. I was NOT happy when I was told that I would need treatment, but I trust that these doctors that specialize in TC are doing this to ensure the best course possible.

Tomorrow is the day that this journey through the treatment begins, I am ready to kick some major butt... like those that have gone before me, cancer has picked the wrong person!!! I serve a God bigger than this, so I will do my job and let HIM be in control! :)

PLEASE keep us posted on your WBS... praying for many good things to come!!! :)

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hi auntie32,
thanks for your story. it is nice that u have confidence in your doctors and they seem very knowledgable on ty. sorry to hear about your family history, sounds like strong women you got there in your family.

i would love to keep getting updates on your experience going hypo since you are getting off hormones tomorrow.. especially since we will be going through the same experience at the same time. it is hard but i know we can make it. just scary when you don't know how your body's gonna react and the unknown when going hypo. some ppl have minor side effects, others severe. so should be interesting, at least i am aware of what to possibly expect so that at least makes me feel better and not totally clueless. yes keep praying, it helps.

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I don't know of any evidence that a TSH higher than 30 produces better results. I wish you both - joy15 and Auntie32 - a well-elevated TSH in a short time and a successful treatment. You are both in my prayers.

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hi cabro, thank you for your well wishes!

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joy15 and Auntie32 - I had TT 12/7/11. I took Cytomel for 3 wks, then stopped until after WBS, when I began Synthroid & Cytomel. Yes, I was hypo for awhile, but nothing I couldn't handle. LID only for 10 days, then ablation RAI on 1/4/12 (151 mCi), followed by WBS on 1/11/12. My first f.u. was an ultrasound in June 2012. My annual f.u. will be a WBS first week of Jan 2013. For my WBS I will receive labs on Mon, 2 injections of Thyrogen on 2 consecutive days, rest one day, then have labs & WBS on Fri. Note: only a 'tracer dose' of RAI will be given for this f.u.

You may be getting a tracer dose of RAI since the WBS is a f.u. That's just enough to show if there is any uptake in thyroid tissue anywhere, but not a 'killer' dose. You may know this already, but it didn't seem clear in reading the post, so wanted you to know my experience.

It's been one year since my surgery. It's taken time to adjust meds dosage correctly, but I'm feeling pretty darn good! I went from Synthroid 150 mcg to 137 to 125 to 112 mcg. I also took Cytomel 5 mcg twice a day for six months, weaned myself to once/day, then endo took me off Cytomel 6 wks ago. I think I'm where I need to be now with meds, unless the Thyrogen & WBS in Jan shakes things up!

Good luck to you both!

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thanks wifeintexas. just want to make sure i understood what u wrote.. so u started taking synthroid and cytomel before the rai on 1/4/12? that was one thing i was unclear about, when someone does a follow up wbs, when do you start back on your synthroid? until after you get rai if the wbs is positive?

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In my case, my RAI was almost one month after my surgery. I went on Cytomel (T3) but not Synthroid (T4) when I went home from hospital. I think I quit the Cytomel when I began LID, 10 days before RAI. I began Synthroid & Cytomel 3 days after RAI and 3 days before WBS. I didn't get my WBS report until I saw endo one week after WBS. In my case, we weren't expecting to see a perfectly clear WBS, as it's normal to see some uptake in the thyroid bed so soon after ablation RAI. However, the one year WBS I'll be having in 3 wks will only have a tracer dose of RAI. Since I'm taking Thyrogen before the scan, I won't be off my meds this time. And I don't have to do the LID this time, just avoid seafood for couple of days before scan, doc said. However, knowing me, I will probably do it anyway for a few days before, as it wasn't too bad for me last year.

I don't think you need to worry about starting back on Synthroid before you get a clear WBS report. It doesn't sound like your dr expects to see any uptake on your scan, meaning it will be clear. But if anything does show up, he will monitor your blood labs, too. There doesn't seem to be any reason you'd need to be hypo for 6 wks. Especially true if you can get Thyrogen. Maybe your doctor can set it up with your insurance for you. I am on Medicare and they will pay for me.

Best wishes and try not to worry about it being positive. Worry isn't good for you. Stay calm & think good thoughts!

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hi wifeintexas, thank you for all the helpful info! good luck on your wbs in 3 weeks.

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