Full Body Scan & Thyogen Injections - Help me figure out this problem

nevergiveup51
nevergiveup51 Member Posts: 40
edited March 2014 in Thyroid Cancer #1
Hi, everyone. Hoping someone can help. Was diagnosed with Papillary thyroid cancer with 10% tall Cell, spread to 4 lymph nodes. Did RAI May 8th and now I have to 6 month full body scan. Question is my doctor wants me to get the thyogen injections on December 6 and 7 and I heard it is better to do the low iodine diet while being off sythroid. You get a better reading from the scan. I am trying to get my physician to allow me to do this but they are fighting me every step of the way. They do it this way and that's it. Does everyone agree with me about doing the diet rather than the injections?

Also, My Doctors office scheduled my full body scan for December 10, 2010. I want to change this until after Christmas and my doctor is saying no. My thought is that it doesn't make a difference because even if they found anything, they wouldn't be able to do anything until after the holidays so what is the difference. When I was first diagnosed it was December 22, 2009, needless to say my Christmas was extremely sad with a tremenous amount of stress. I just rather not go though this. Does everyone think it is safe to wait until after Christmas?

Thank you in advance.
Debby

Comments

  • sfl67
    sfl67 Member Posts: 55
    #2
    Debby,
    I did the Low Iodine
    Debby,

    I did the Low Iodine Diet, Thyrogen injections, etc. the middle of September for my annual follow-up after a Hurthle Cell Carcinoma diagnosis July 09. I did the LID two weeks prior to the week long procedure and discontinued my meds only three days before the injections. I did the injections Mon. & Tue., trace dose of RAI on Wed. full body scan on Thur. and labs drawn on Fri. I remained on the LID throughout the week of testing. I wasn't given the option of not doing the Thyrogen, possibly because the high dose of Synthroid I take suppresses the cancer growth. I think when meds are discontinued it is 6-8 weeks off before the procedures can be done, but am not sure. My cancer does not respond to the radioactive iodine, so my doctor ordered a PET/CT scan in hopes my cancer would show up in contrast when the two tests were meshed together, unfortunately this not not happen. My Thyroglobulin levels indicate a recurrence but it is not showing up on full body scan or PET/CT. I had those tests last week. I think personally I would like the tests over before the holiday so I would not be dreading that throughout, but that is your decision. I know the doctor tells me to go home, not worry and live my life to the best of my abilities, and I know that is easier said than done. I feel as though this cancer has more power than I want to give, but I haven't found a way to put it out of mind.

    Wishing you well and hope you find what works best for you.

    Shelia
  • nasher
    nasher Member Posts: 505 Member
    #3
    yes it is probably better to
    yes it is probably better to be on LID and off Synthroid for the diagnosis.. BUT and its a big but... Synrthroid takes about 6 weeks to get out of your system.. the first time you had your test you were probably on Cytomel or the like that mostly is gone at 2 weeks.. I know 2 people who went the 6+ weeks off Synthroid.. personaly unless the test comes up inconclusive i say do the shots. If you calculate it from now do you want your christmas off synthroid and on the LID?

    I would want to know eithor sooner than wondering.

    I did my RAI on May 5th and have my endo visit on the 3rd of december... if he gives me the option i will go with shots and i will go with ASAP.

    personaly i would rather not go through any of the 3+ medical appointments i have a week for various conditions but thats life and i plan on continuing to live a long life
  • sunnyaz
    sunnyaz Member Posts: 582
    #4
    Thyrogen Injections/LID
    First of all, it's a MUST to do the Low Iodine Diet two weeks before you take the Scan dose of RAI. The reason for this is to starve your Thyroid cells of any Iodine so that they will take up the RAI when it is administered. I took the Thyrogen injections so that I could stay on my Synthroid so I don't understand why they want you to do both. The diet has nothing to do with the injections, the injections are so that you can stay on the Synthroid. Maybe you misunderstood what they were telling you?

    Get the scan over with. I had a scan in September and it didn't show anything except that my Thyroid cells took up the RAI. Then an sonogram showed a cancerous node the next month. The same node that was there when I had the sonogram in May and then biopsied in June. The surgeon missed the node in my sugery and it didn't show on the scan. The purpose of the scan is to see if the Thyroid cells took up the RAI. It doesn't show tumors. Now I am facing my third surgery before Christmas. Don't wait for the holidays to do your scans and treatments. There are always more holidays if you take care of yourself. If you don't, they will be limited. I hope this helps and gives you a bit of insight.
    SunnyAZ
  • nevergiveup51
    nevergiveup51 Member Posts: 40
    #5
    sunnyaz said:

    Thyrogen Injections/LID
    First of all, it's a MUST to do the Low Iodine Diet two weeks before you take the Scan dose of RAI. The reason for this is to starve your Thyroid cells of any Iodine so that they will take up the RAI when it is administered. I took the Thyrogen injections so that I could stay on my Synthroid so I don't understand why they want you to do both. The diet has nothing to do with the injections, the injections are so that you can stay on the Synthroid. Maybe you misunderstood what they were telling you?

    Get the scan over with. I had a scan in September and it didn't show anything except that my Thyroid cells took up the RAI. Then an sonogram showed a cancerous node the next month. The same node that was there when I had the sonogram in May and then biopsied in June. The surgeon missed the node in my sugery and it didn't show on the scan. The purpose of the scan is to see if the Thyroid cells took up the RAI. It doesn't show tumors. Now I am facing my third surgery before Christmas. Don't wait for the holidays to do your scans and treatments. There are always more holidays if you take care of yourself. If you don't, they will be limited. I hope this helps and gives you a bit of insight.
    SunnyAZ

    Thank you everyone for your
    Thank you everyone for your comments. Its helped a great deal. One thing I don't understand is why couldn't my doctor or the office manager explain it to me just like you woman have done. It's just that simple. Instead the office manager was extremely rude and basically called me an idiot for not doing the injections. The best way to describe her, and I hope no one is offended, is a B I T C H. The thing is that I went into my doctors office yesterday and I asked him if it was alright to change the appointment, he asked me a few questions, checked my neck and chest, told me that my ultrasound was good. He just couldn't tell anything from my blood work because I have antibodies. He then went to the office manager and told her to change the date of the scan.

    First thing in the morning I will call and ask her to change it back, shes not going to be happy but who cares other than my blood pressure.

    The other reason I want wait is because the last time I had the scan something showed up behind my heart and on the side of my scalp. I'm just scared. Unfortunately, all of you understand that feeling. One thing that I think of when I get down is my Uncle - he is 89 years old and he has been dealing with all types of cancer, has had many operations in matter of fact he just had eye surgery today and he is still with us, making us laugh. So this is why I know deep inside we are going to be alright and living on for a long while

    Tonight I am going to pray for all of you including me.

    Thanks again, Debby
  • Jenny L
    Jenny L Member Posts: 1
    #6
    Thyrogen Injections
    I was actually part of the trials for Thyrogen by the NIH. I have had whole body scans both ways. I can tell you from my experience that Thyrogen injections are considerably less invasive than going off Synthroid. All of my family, friends & coworker would also agree. I am not a fan of being exhausted all the time, always feeling cold, weight gain, having my hair fall out & oh yeah making people cry because my external filter on what is appropriate to say out loud gets turned off.The Holidays will be more enjoyable knowing your status. I could never really turn off the questions in my mind. Whatever decision you make will be the right one for you.
  • nevergiveup51
    nevergiveup51 Member Posts: 40
    #7
    Jenny L said:

    Thyrogen Injections
    I was actually part of the trials for Thyrogen by the NIH. I have had whole body scans both ways. I can tell you from my experience that Thyrogen injections are considerably less invasive than going off Synthroid. All of my family, friends & coworker would also agree. I am not a fan of being exhausted all the time, always feeling cold, weight gain, having my hair fall out & oh yeah making people cry because my external filter on what is appropriate to say out loud gets turned off.The Holidays will be more enjoyable knowing your status. I could never really turn off the questions in my mind. Whatever decision you make will be the right one for you.

    Decision I made
    Thank you Jenny. Finally today I was able to change it back to the original date. December 6 and 7, 8th I go for the pill and the 10th is the Scan. It took a lot out me today because the nurse/office mgr in charge at first said I will not change it again, you are not my only patient and I don't have the time. I said to her that that this is my life and this is your job, everyone has difficulties with their jobs but that doesn't mean you don't do it. I won't bore you with the rest but I did do it. And your right, every morning I wake up with tears in my eyes, I just can't get it out of my mind so it is better I do the scan and know.

    Thank you and everyone for taking the time to answer my question. I just love communicating with all of you. You help people so much.

    Debby

    PS: I will let you know what happens.
  • sunnyaz
    sunnyaz Member Posts: 582
    #8
    nevergiveup51 said:

    Decision I made
    Thank you Jenny. Finally today I was able to change it back to the original date. December 6 and 7, 8th I go for the pill and the 10th is the Scan. It took a lot out me today because the nurse/office mgr in charge at first said I will not change it again, you are not my only patient and I don't have the time. I said to her that that this is my life and this is your job, everyone has difficulties with their jobs but that doesn't mean you don't do it. I won't bore you with the rest but I did do it. And your right, every morning I wake up with tears in my eyes, I just can't get it out of my mind so it is better I do the scan and know.

    Thank you and everyone for taking the time to answer my question. I just love communicating with all of you. You help people so much.

    Debby

    PS: I will let you know what happens.

    Good For You!
    Debby,

    It's wonderful that you stood up to the B_ T_ H. I happen to be in a similar position at a Dr.'s office and I can tell you that her behavior is inappropriate. I handle patient care all day long. It's what we do and she should be reported. I am sure her boss would want to know about her attitude, I know mine would. If I ever heard of any of my MA's treating a patient like that, their job would be in serious jeopardy.

    Please keep your chin up and have faith. I am getting ready to go through my third surgery and I can tell you it's not easy. Pray, love, laugh and don't waste a minute of any day accepting a negative attitude. Life is what you make it. I love the term "when life hands you lemons, make lemonade." Or there's another one from Funny Bunny, "when life hands you lemons, squeeze the juice into the eyes of your enemies." This one happens to be on one of my binders at work. Use this one for the Nurse at your doctor's office even if you only have to visualize it and get a good laugh. I am praying for you!

    SunnyAZ
    Julie
  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    #9
    nevergiveup51 said:

    Decision I made
    Thank you Jenny. Finally today I was able to change it back to the original date. December 6 and 7, 8th I go for the pill and the 10th is the Scan. It took a lot out me today because the nurse/office mgr in charge at first said I will not change it again, you are not my only patient and I don't have the time. I said to her that that this is my life and this is your job, everyone has difficulties with their jobs but that doesn't mean you don't do it. I won't bore you with the rest but I did do it. And your right, every morning I wake up with tears in my eyes, I just can't get it out of my mind so it is better I do the scan and know.

    Thank you and everyone for taking the time to answer my question. I just love communicating with all of you. You help people so much.

    Debby

    PS: I will let you know what happens.

    Hooray for you!
    Debby...I just wanted to give you a pat on the back for standing up to that nurse. I had a very similar situation with my ENT doctor's nurse and I love your response to her, I will remember that if I ever run into another health care 'professional' that treats me unkindly. The last thing a person needs when they are sick is to have an attitude thrown at them that is undeserved...I hope you are doing well now. Really that nurse should be reported, for other patients benefit and herself...a learning lesson, if she is humble.
    I just did the thyro shots and scan 2 weeks ago, they had me on LID for only 1 week though., my scan came back clear, I am very happy with that. I also was diagnosed with another cancer (completely different)6 months before the thyroid cancer. The thyroid cancer was found by accident on a PET scan follow up after radiation therapy. I still haven't gotten a clear scan from that and am having to deal with that still.Hang in there and never give up! Love that!
  • tracyrode
    tracyrode Member Posts: 1
    #10
    nevergiveup51 said:

    Decision I made
    Thank you Jenny. Finally today I was able to change it back to the original date. December 6 and 7, 8th I go for the pill and the 10th is the Scan. It took a lot out me today because the nurse/office mgr in charge at first said I will not change it again, you are not my only patient and I don't have the time. I said to her that that this is my life and this is your job, everyone has difficulties with their jobs but that doesn't mean you don't do it. I won't bore you with the rest but I did do it. And your right, every morning I wake up with tears in my eyes, I just can't get it out of my mind so it is better I do the scan and know.

    Thank you and everyone for taking the time to answer my question. I just love communicating with all of you. You help people so much.

    Debby

    PS: I will let you know what happens.

    Injections and RAI
    Debby, I'm glad to hear you got everything set. Would you share your experience with the injections and RAI as soon as you're able? I do the injections the 13th and 14th with the pill on the 15th, and I'd love to hear your observations.

    Thanks and best wishes for your treatment,
    Tracy

    (thyroidectomy 10/18; papillary with follicular variant - all 18 lymph nodes clean)
  • nevergiveup51
    nevergiveup51 Member Posts: 40
    #11
    tracyrode said:

    Injections and RAI
    Debby, I'm glad to hear you got everything set. Would you share your experience with the injections and RAI as soon as you're able? I do the injections the 13th and 14th with the pill on the 15th, and I'd love to hear your observations.

    Thanks and best wishes for your treatment,
    Tracy

    (thyroidectomy 10/18; papillary with follicular variant - all 18 lymph nodes clean)

    My Experience
    Hi Tracy:

    Monday and Tuesday I went to the hospital to get the injections and it was painless, a little pitch. They have to give it in a muscle and I chose the biggest muscle I have - my rear. I didn't experience any side affects at all. Today I went for my Radioactive pill and so far so good. I just can't wait to eat regular food. Friday is my scan, it takes about 1 hr. I'll let you know how that turns out.

    Good luck to you too. Debby

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