I had papillary carcinoma last year. Received radiotheraphy and radioiodine and whole body scan was ok. Tg levels have been good for the past year at 0.7.
I drove 5 hours today to have my small dose of radioiodine before the whole body scan 3 days later. I was told not to eat for one hour but i could drink. I had already eaten 2 hours prior to that so it wasnt a problem.
I had stopped thyroxine for slightly more than a month and have avoided all seafood, cabbage, spirulina, jelly, seaweed. I pray i did not leave anything out cos this was the list given to me by my oncologist and i followed it religiously, except for one or two mishaps (very minor).
3 hours after drinking the radioiodine, i decided to have some food. I accidentally had two sips of flavoured milk that contained jelly in them (that i did not know of!!!) and a bite of beef burger that had cabbage in it. I'm probably being very silly but it this going to interfere/ compromise my scan results 3 days later? It is driving me crazy and i can't stop thinking about it. Please advice. I don't think i can sleep tonight cos i've tried so hard to keep away from the forbidden foods that i don't want a last minute mistake to jeopardize it.
i apologize to those who might feel that my posting is unnecessary but i really need help cos i'm uninformed and from a third world country. Plus, if my scan is clear 3 days later, life would potentially return to being more normal. The past year was an emotional and financial turmoil, being diagnosed with cancer and losing my job.
I had RAI last month and I understand COMPLETELY what you are concerned about. I didn't want to do ANYTHING to compromise the RAI since the cancer had turned my life so upside down - I thought of RAI as the last battle in the war.
You'll be fine. You didn't have much of the forbidden food and your TSH levels won't be affected for your uptake.
Please let us know how the scan went. My doctors advised to stay off the meds and on the diet for 24 hours after then to double up on my synthroid for 5 days. Has your doctor advised something similar?
thanks for all your concern....i appreciate it...although i still wished the kind doctors here would have responded to me during my time of need. I was refreshing the pages every hour and could not sleep...perhaps i was too hypo..
i just came back after a whole day of travelling....the good news is, everything is clear. I guess technically, i'm cured. But the scan was so clear that i wonder if it had anything to do with the accident that happened. There was no uptake and residual at all. The scan was done at a separate place and my oncologist was on leave today but he will call me tomorrow. I took 200mcg right after my scan results but my normal dose it 250mcg. I'll be starting my normal dose from tomorrow morning onwards unless my onco tells me otherwise....He might also advice me to up my dosage to 300mcg cos my last blood test showed TSH of 0.37, which is ok but could be lower.
i guess its a happy day for me but i'll have to see what my doctor tells me tomorrow....thanks again everyone...
I'm glad your scan was so clear. Mine was not (probably have to repeate at a higher dose in 6 months). I'm so happy when I hear about good scans!! I hope that you can get enough Synthroid into your system to enjoy your holidays!!
thanks a lot for asking....my oncologist called me to congratulate me on being cured...but i've read that there are many instances where cancer can return even after decades (hope i'm not being too pessimistic)..i'm still thankful nevertheless..its been 3 days since i resumed my thyroxine but i guess it'll take a little longer for the hypo to subside cos i'm still feeling pretty weak and muscle sore..
about your scan, i don't think you need to worry cos it is expected that your scan after the first radioiodine to not be clear. Thats the whole point of radioiodine in the first place, that is to kill the remaining thyroid tissue after thyroidectomy. Your scan will show uptake because the remaining thyroid tissue has taken up the radioiodine. From what i understand, the first scan is an important indication of whether there are any metastasis (cancer spread) to other parts of your body. You should only expect a clear scan 6-12 months after your first scan, just like mine, where all thyroid tissues are suppposed to be destroyed.
i don't know if i'm correct with this info but this is as far as i know....hope it helps and pls feel free to correct me if i'm wrong...
Oh, one more thing. Please visit the patient-to-patient forum on this web site. There are a lot of people on there who have been through what you have. Sometimes thyroid conditions can make us feel completely alone in this world as there just isn't a lot of attention paid to them. I didn't even know where my thyroid was before I had to have it removed!
You posted that you are in a third world country yet it sounds like you have wonderful health care professionals. (And you have South Park - a bonus!) :-)
I hope that your life can return to normal next year. Hopefully you have been able to find a job and it sound like you are cancer free! What a wonderful way to start a New Year.
that is great news.I knew that darned mouth full you ate would be ok.
I do hope you come on over to the unmoderated side and share your story.I was so very encouraged in your post to utahmomma.
I get my RAI next week.
Take care and see you on the other side.
I've read that you experienced the same diagnosis I did: papillary carcinoma. My cancer was so small (4mm) that they didn't feel I needed RAI immediately after. But after three years my TSH levels tripled after only a few months (on 200mcg of Synthroid).
I also have a HUGE family history of thyroid cancer (four sisters - three with papillary carcinoma). It's a bit frightening since I'm the oldest and I'm (only) 40. My youngest sister (24 at the time) had Stage II with lymph node involvement. She has been through three courses of RAI. I knew that I was having a problem as, on top of the rising TSH, my thyroid area began to swell.
My full body scan showed a large amount of "highly aggressive thyroid tissue" (i.e. cancer) in the thyroid area. I'm sure I'll need another dose but that's the breaks. :-)
My big dose of RAI was 15 November and I'm nearly feeling human now on the Synthroid. However my TSH level days before the RAI was 75.9 (after only being off the meds for three weeks) so I know I had a long way to go to get the TSH around 1.0.
Give it about a month before the body aches, fatigue, etc. calm down. Yes, I have heard of recurrences years later but you are on top of your condition and I'm sure you will be getting your TSH levels checked regularly. We can't prevent recurrences but taking charge of the situation will help stop them in their tracks!
Since there aren't a lot of men on these forums I am curious. Did you get the horrible "hot" flashes too?
i don't really understand what hot flashes are....
i'm from Malaysia, Chinese by race and my oncologist is 4 hours drive away from me and the place where i get my scan done is 5 hours away. I did not rely on the doctors for info. I had to get them myself by reading up extensively. Even the doctors were surprised with my (limited) knowledge. Apparently, not many ppl take such initiatives. There is only one oncologist in the city where i live (which is supposedly the second largest city in my country)and he is understandably very busy and not able to give much attention to patients. Healthcare is also expensive but thank heavens for insurance. All in all, we don't have it as good as u guys in the U.S. You ppl should be sooooo thankful. I never did feel alone though...I have an amazing wife that has been supportive all these while as i'm sure it has been hard on her too.
As for Southpark, i know of no one in my country that watches it...i'm the only one i know of that loves it and can actually understand the humour behind it. I get it via downloads (i hope i'm allowed to say this here) and have never missed a single episode....there are also various shows that i absolutely love from the US...will tell u more if u wanna know....cos its a bit off topic...
I'm glad you took charge of your health and got the surgery and RAI. Oh, trust me, we have some really horrible doctors in the U.S. too - just more of them to chose from. :-)
"Hot Flashes" are unexplained, overwhelming feelings of intense heat. They make you start to sweat, you usually turn reddish, you want to start taking of clothes (not advisable when it's way below freezing like it is here today), sometimes it's hard to breathe, and you wake up drenched in sweat. This usually happens to women during menopause but it also happens to a lot of women after thyroid surgery/RAI.
Since there are so few men on the thyroid forums I was just curious if it hits men as bad as it does women.
Hopefully we will see you on the patient to patient forum soon!
My comment is to congratulate you on being proactive in your health. My doctors have told me numerous time to "stay off the internet", but they don't tell me a darn thing!!!!! If we don't do it for ourselves, it's doubtful that anyone else will!!
Eric, I'm surprise to find a Malaysian Chinese on this thread. I'm Malaysian Chinese too, had RAI in Aug 05 and it didn't do much good to me and still going through Graves' Disease. I'm currently residing in Cambodia so care from endocrinologist is somehow challenging. I learnt a lot from this forum and has been reading it ever since I found this site.
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