Curious about Cytomel & RAI

kac
kac Member Posts: 5
edited March 2014 in Thyroid Cancer #1
I was recently diagnosed with papillary cancer and have had a total thyroidectomy in 09/04. I am currently taking Cytomel for 3 weeks and then am supposed to go off of it for a week before my RAI. My oncologist did not give me any idea of how I should expect to feel over the next 3 weeks while I am on Cytomel or how I will feel during the week I am off. I know that I am feeling really tired right now and a little emotional/edgy. Will this get worse? I haven't worked in a month (I have a very stressful/demanding job and am on S/T disability). And I don't know when I should expect to go back to work. Can anyone shed any light for me? I really appreciate your support and feedback!!

Comments

  • cherrie
    cherrie Member Posts: 38
    Hi I am a thyroind cancer patient since 1988 (18yrs old) and when I went for my first scans I was left 6 weeks without any thyroid meds and no cytomel. But then that changed they would take off my thyroid meds for 6 weeks but the first 2 weeks the dr gave me cytomel. Last yr I had my third RAI treatment. I feel really miserable being off my meds especially last yr I was taking 300mgs of synthroid so my body feels the need for the meds right away. I can tell you that at that time my sugar drops(it doesn't mean it will happen to you,because everybody is different) you will fel very very tired,light headed even kind of sick to your stomache,and maybe headaches. Remember I am telling you how I feel. If you want to know more you can right back to me to this sight or to caburtonpr@yahoo.com
    I hope my info helps,Take care
  • kac
    kac Member Posts: 5
    cherrie said:

    Hi I am a thyroind cancer patient since 1988 (18yrs old) and when I went for my first scans I was left 6 weeks without any thyroid meds and no cytomel. But then that changed they would take off my thyroid meds for 6 weeks but the first 2 weeks the dr gave me cytomel. Last yr I had my third RAI treatment. I feel really miserable being off my meds especially last yr I was taking 300mgs of synthroid so my body feels the need for the meds right away. I can tell you that at that time my sugar drops(it doesn't mean it will happen to you,because everybody is different) you will fel very very tired,light headed even kind of sick to your stomache,and maybe headaches. Remember I am telling you how I feel. If you want to know more you can right back to me to this sight or to caburtonpr@yahoo.com
    I hope my info helps,Take care

    Thanks for your feedback, Cherrie. I have been having headaches and even trouble sleeping (even though I am REALLY tired!). It is nice to know that I am not the only one! Thanks again for your thoughts. My prayers are with you!
  • cherrie
    cherrie Member Posts: 38
    kac said:

    Thanks for your feedback, Cherrie. I have been having headaches and even trouble sleeping (even though I am REALLY tired!). It is nice to know that I am not the only one! Thanks again for your thoughts. My prayers are with you!

    I'm glad that my info has helped you. Take care and remember you will be all right. My prayers are with you. If you need somebody to talk to I am here.
  • ccb
    ccb Member Posts: 3
    I just had a complete thyroidectomy and stopped my cytomel last week. So far I'm ok. Sluggish, but nothing real terrible. A little sensitive too, but not totally depressed. Don't worry
  • kac
    kac Member Posts: 5
    ccb said:

    I just had a complete thyroidectomy and stopped my cytomel last week. So far I'm ok. Sluggish, but nothing real terrible. A little sensitive too, but not totally depressed. Don't worry

    Thank you for your story. It really helps to hear how other people are doing that are in your situation. This is new to all of us! God bless you and good luck with your recovery!!
  • fairchild4
    fairchild4 Member Posts: 2
    I too am on Cytomel waiting to get a RAI full body scan. I had a total Thyroidectomy in April of this year. I was diagnoised with papillary cancer after surgery. My Oncologist said that I was cured and need no other treatment. A Thyroid ultrasound three weeks ago showed swollen glands and blood test a high amount of Thyroid cells. My Primary care doctor referred me to an Endocrinologist. I am taking 25mgs of Cytomel twice a day, and 1000mg of calcium twice a day. My endocrinologist told me "if you think you are feeling bad now on 0.1 of Synthroid, wait until you switch over to Cytomel." He didnot lie. I am tied,edgy and sluggish, but I am hanging in here. You are not alone. Keep your head up. My prayers are with you
  • fairchild4
    fairchild4 Member Posts: 2

    I too am on Cytomel waiting to get a RAI full body scan. I had a total Thyroidectomy in April of this year. I was diagnoised with papillary cancer after surgery. My Oncologist said that I was cured and need no other treatment. A Thyroid ultrasound three weeks ago showed swollen glands and blood test a high amount of Thyroid cells. My Primary care doctor referred me to an Endocrinologist. I am taking 25mgs of Cytomel twice a day, and 1000mg of calcium twice a day. My endocrinologist told me "if you think you are feeling bad now on 0.1 of Synthroid, wait until you switch over to Cytomel." He didnot lie. I am tied,edgy and sluggish, but I am hanging in here. You are not alone. Keep your head up. My prayers are with you

    This is an update to my previous response. The correct dosage of Cytomel that I am taking is 25mcg twice a day, not 25mg. Sorry. I hope you are feeling better. Take care
  • kac
    kac Member Posts: 5

    This is an update to my previous response. The correct dosage of Cytomel that I am taking is 25mcg twice a day, not 25mg. Sorry. I hope you are feeling better. Take care

    Thanks for your story and update. I am feeling pretty good - I am on Day 6 of being off Cytomel preparing for RAI. I am feeling a little tired and depressed, but nothing too bad. I have my bloodwork done on the 18th to see if I am ready for RAI. I am keeping my fingers crossed that my TSH level is high enough to have it and get it over with! Good luck with your recovery!
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