Problems they don't tell you about

andstal Member Posts: 6 Member
edited July 8 in Thyroid Cancer #1

Hello, new here and just diagnosed with thyroid cancer while undergoing eye cancer treatment. The endocrinologist recommends complete removal of the thyroid and does not expect needing any further treatment for the thyroid cancer after surgery. Many people say you can live without a thyroid, no problems. I'm looking for little or unknown effects that the medical community doesn't tell you. Just as I lost my right eye and everyone in the medical community said you can live a normal life with one eye. True, but I can tell you everyday challenges that the medical community doesn't tell you. I just want to be fully aware and fully informed.


  • SarahPetunia
    SarahPetunia Member Posts: 1 *

    Hi - welcome to the club! I've got Medullary Thyroid Cancer, and had a total thyroidectomy in Nov. 2022. The "living with it" side of things really isn't so bad. Only ongoing frustrations are: 2 parathyroids came out with the thyroid, and so far my calcium levels haven't rebounded so I'm taking supplemental calcium (potentially permanently) in addition to the synthroid/levothryoxine, and it can take some time to get the dosage of the levothyroxine just right for you to feel normal/not tired but also not like you have hyperthyroidism. (I'm still trying to get it just right.) That and the annual scans/bloodwork to make sure everything is still fine & that no cancer spread produces a bit of regularly scheduled anxiety. Oh - and you have to take the levothyroxine 45 minutes before you eat or drink anything (other than water) every day, so you just need to adjust your schedule a bit around that. (I take it as soon as I wake up, and then turn the pill bottle upside down, so if I go back to sleep and wake up again later, I'll remember that I took it.) Good luck, and don't worry!

  • andstal
    andstal Member Posts: 6 Member

    Thank you so, so, so, much for the reply. I know it has to be removed and the thyroid medication for the rest of my life. Didn't know about the calcium issue. I'm fine if afterwards, I'm hyperthyroidism so I can have so much energy and lose all my excess body weight!🤣 Yeah, I know that won't happen. I'm just dreading another surgery.

    Thanks again,