preparation for RAI: total withdrawal from Synthroid..or..Thyrogen

jyinger
jyinger Member Posts: 10
in Thyroid Cancer #1

My TT was two months ago.  They found cancer in both sides of the thyroid, but none in the lymph nodes.  But, to be safe, the Dr has scheduled RAI for me  Feb 2.  In preparation for the RAI, I am scheduled for a month of low-iodine diet while at the same time going completely off the Synthroid so that I am completely hypothyroid.

I am ok with the LID, but I have read on this forum how miserable hypothyroidism is, and as a 73 year-old man, it sounds like a very bad idea.  I have also read that there is an alternative:  stay with the Synthroid and then, the Monday and Tuesday before the RAI, they give me injections of Thyrogen.  And I have read the results of a number of studies which conclude that the Thyrogen theraply is just as effectve in preparing the body for the RAI therapy as driving the body into a hypothyroid state.

My Dr seems reluctant to recommend Thyrogen, and I wonder if it is just be cause of its high cost.

Comments?

 

Jon 

Comments

  • Williamryan
    Williamryan Member Posts: 37
    #2
    RI-131 and thyrogen shot

    Jon,

    The RI-131 is the initial treatment for killing off any residual thyroid cells after your thyroid has been removed.  The thyrogen is used when your doctor performs the annual screening to identify if there are any thyroid cancer cells still remaining.  With the thyrogen shot, you don't come off the synthroid and you can maintain your usual diet.  The LID is no issue.  The hyponess of coming off of synthroid can be challenging.  Limit your activities and get plenty of rest.  I felt very lathargic, not tired as in sleepy, just no energy. 

    Hope this helps, Bill

  • jyinger
    jyinger Member Posts: 10
    #3
    Williamryan said:

    RI-131 and thyrogen shot

    Jon,

    The RI-131 is the initial treatment for killing off any residual thyroid cells after your thyroid has been removed.  The thyrogen is used when your doctor performs the annual screening to identify if there are any thyroid cancer cells still remaining.  With the thyrogen shot, you don't come off the synthroid and you can maintain your usual diet.  The LID is no issue.  The hyponess of coming off of synthroid can be challenging.  Limit your activities and get plenty of rest.  I felt very lathargic, not tired as in sleepy, just no energy. 

    Hope this helps, Bill

    preparing for RAI

    Thanks Bill.

    My endo Dr is on leave, and her replacement has approved the thyrogen shots.  The RAI is scheduled for Feb 5, with the thyrogen shots Feb 3 and Feb 4.  I am all ready to start on my LID diet---are you saying it's no longer necessary? 

    Jon

  • Williamryan
    Williamryan Member Posts: 37
    #4
    jyinger said:

    preparing for RAI

    Thanks Bill.

    My endo Dr is on leave, and her replacement has approved the thyrogen shots.  The RAI is scheduled for Feb 5, with the thyrogen shots Feb 3 and Feb 4.  I am all ready to start on my LID diet---are you saying it's no longer necessary? 

    Jon

    Jon,  Correct, the LID diet

    Jon,  Correct, the LID diet is no longer necessary.  Although to obtain a more accurate reading, I would limit your iodine intake, but don't go overboard.  At least that's what my Endo told me and everything was good.  Tx. Bill

  • jyinger
    jyinger Member Posts: 10
    #5
    Williamryan said:

    Jon,  Correct, the LID diet

    Jon,  Correct, the LID diet is no longer necessary.  Although to obtain a more accurate reading, I would limit your iodine intake, but don't go overboard.  At least that's what my Endo told me and everything was good.  Tx. Bill

    preparing for RAI

    Bill:  Thanks again.

    I was kind of looking forward to the LID--I like the no salt, lots of fruits and veggies, unsalted nuts (which I already love), etc.  And I already have found bread (at Sprouts) that has no salt and none of the usual dough enhancers, etc.  It's pretty good, actually.

    The major sacrificies for me were going to be the no skim milk, and no yogurt.  So...maybe I'll go ahead with the modified LID and just allow myself maybe a glass or two of skim milk and one small frozen yogurt every day.

    btw  How was your after-the-RAI experience?  Some of the stories here are pretty discouraging.  

    Jon

  • amorriso
    amorriso Member Posts: 185
    #6
    jyinger said:

    preparing for RAI

    Bill:  Thanks again.

    I was kind of looking forward to the LID--I like the no salt, lots of fruits and veggies, unsalted nuts (which I already love), etc.  And I already have found bread (at Sprouts) that has no salt and none of the usual dough enhancers, etc.  It's pretty good, actually.

    The major sacrificies for me were going to be the no skim milk, and no yogurt.  So...maybe I'll go ahead with the modified LID and just allow myself maybe a glass or two of skim milk and one small frozen yogurt every day.

    btw  How was your after-the-RAI experience?  Some of the stories here are pretty discouraging.  

    Jon

    Stick with the LID

    Thyrogen shots make the RAI process so much easier. The LID makes your body super ready to absorb it. Some will say it's not necessary, others will insist on it. I did it both times and am glad I did - even though none of my doctors here told me too.

    do some reading and decide for yourself what is best for you

  • bouncer
    bouncer Member Posts: 30
    #7
    amorriso said:

    Stick with the LID

    Thyrogen shots make the RAI process so much easier. The LID makes your body super ready to absorb it. Some will say it's not necessary, others will insist on it. I did it both times and am glad I did - even though none of my doctors here told me too.

    do some reading and decide for yourself what is best for you

    I had done a month of LID

    I had done a month of LID (after an earlier 2 months of LID, when they found the surgeon had left some thyroid in), and just as I was called for RAI, I was told to come in both days of the weekend before, so I could have the Thyrogen shots, which had not been available over here for some time.

    The actual RAI was no problem (carried out in a lead lined room in hospital (UK), with a three day stay).

    Following RAi, the only problem I have is an odd sensation in my neck/throat, like I have something stuck there. The Oncologist told me it was similar to a radiation burn, as I had a high dose of RAI, which should settle down in time (still there after nearly 2 years).

    Told last year that I am clear of cancer - whatever that means - but still have annual scans to keep an eye on it.

     

     

  • Anduwil
    Anduwil Member Posts: 1
    #8
    RAI

    Jon -

     

    i am in day 2 of RAI and I must say I feel rather poorly. Feel like I have the flu. I was diagnosed with papillary thyroid cancer the beginning of Nov, had complete thyroid removal on Nov 11. Immediately started feeling better, and before the LUD and stopping my Synthroid, felt better than I had in ages. Fortunately just one 1 cm nodule, no lymph nodes were affected. Started the LID the day after Christmas, and I guess I did a really good job, because my TSH level was 149.1 when I was given the RAI!  No wonder I felt so badly, so quickly, during the two weeks prior to the RAI!  I have been given a low dose of RAI so it could be worse. All I can say is I am really glad this will soon evening me. The nausea and fatigue are not enough to make me avoid food - just not real excited about it. Just want to sleep and of course very cold. I know I am fortunate that this should be the extent of my journey and know how much worse things could be...but sure doesn't help the yucky feeling right now!

     

    the way I feel, Jon, is that if this increases my chances of putting this all behind me, 3 weeks of discomfort is worth it. id rather error of the side of more to make the treatment work,than risk having to got hrs any of this again this too shall pass!!!!

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