Body Scan

CindyC
CindyC Member Posts: 27
edited March 2014 in Thyroid Cancer #1
I had Papillary Carcinoma diagnosed Nov. 1999 and have had Body Scans each summer since. Has anyone had this happen to them. Two years ago I had to have another RAI treatment as activity was found. I am wondering when this will all end. The hardest part is going off the Synthroid and getting so tired again. Cindy

Comments

  • Rustifox
    Rustifox Member Posts: 110
    #2
    Going hypo for our scans or treatments is hard, Cindy. Only someone else who has been there, like we have, truly understands how mind and body are impacted by this.

    In about 20-40 percent of us, we do need a second treatment, or more, to get all of those cells, so you are not alone. Some sites estimate about 25% of us will have either persistent or a recurrence of the thyca - but it is still treatable, even if it happens many years down the line.

    I have a personal web page here with a bunch of links that might help you, too, and feel free to email if you feel you'd like to talk a bit. I'm going hypo right now for a treatment later this month, too, so if nothing else we can comfort each other about how to deal with some of the symptoms. You aren't alone, and I do understand not wanting to go off the hormones. I find it is really important not to try to push ourselves too hard when we are hypo, as it makes it so much worse. Be kind to yourself, ok? Again, feel free to email if I can help a bit.
  • gacbacker
    gacbacker Member Posts: 14
    #3
    I was diagnosed in spring of 2002 and had a body scan every year for 2 years, with intense laboratory monitoring. You are not alone in needing more than one treatment of I-131. May I ask what type of physician is managing your thyroid condition? I would contact an endocrinologist. When I had my first body scan, I too had to go off my synthroid and felt horrendously tired. By the time it was time for my next scan, they had came out with a product called 'Thyrogen'. It is a medicine that kind of produces an elevated TSH in your body without taking away your thyroid medications...meaning that you can still take your thyroid medications and get a scan with as accurate of results as when you do not take your medications prior. Scheduling for thyrogen usage is typically like this:
    Say you are scheduled for your scan on Thursday. On Monday and Tuesday, you would go to your doctor's office and receive an IM (intra-muscular) shot (in the gluteal, where it has been found to be absorbed best) each day. Wednesday is an off day and then Thursday you go in and get your scan. The only downfall is that thyrogen is incredibly expensive...over $1,000. Check with your insurance for coverage. Even if it wasn't covered, I still would have gotten it and paid out of pocket- well worth it. Best of luck to you.
    Nikki
  • nod_on86
    nod_on86 Member Posts: 1
    #4
    gacbacker said:

    I was diagnosed in spring of 2002 and had a body scan every year for 2 years, with intense laboratory monitoring. You are not alone in needing more than one treatment of I-131. May I ask what type of physician is managing your thyroid condition? I would contact an endocrinologist. When I had my first body scan, I too had to go off my synthroid and felt horrendously tired. By the time it was time for my next scan, they had came out with a product called 'Thyrogen'. It is a medicine that kind of produces an elevated TSH in your body without taking away your thyroid medications...meaning that you can still take your thyroid medications and get a scan with as accurate of results as when you do not take your medications prior. Scheduling for thyrogen usage is typically like this:
    Say you are scheduled for your scan on Thursday. On Monday and Tuesday, you would go to your doctor's office and receive an IM (intra-muscular) shot (in the gluteal, where it has been found to be absorbed best) each day. Wednesday is an off day and then Thursday you go in and get your scan. The only downfall is that thyrogen is incredibly expensive...over $1,000. Check with your insurance for coverage. Even if it wasn't covered, I still would have gotten it and paid out of pocket- well worth it. Best of luck to you.
    Nikki

    Hi Nikki, I just talked to my Dr. today and we are now setting up for my first thyrogen process. They are recommending 3 doses every 72 hours prior to the iodine dose and scan. Do you know the difference between the two procedures and if the patient has a choice between them? I would much rather have it all done within a week instead of spreading it out over a week and a half.
    The nurse is checking with my insurance to see if they will cover it. However, even if they don't I think I will pay out of pocket, I have been through two hypo's !!!

    Thanks for any info, Don

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