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ItsTheSarcasm

833d

I had a total thyroidectomy january 2021, found out it was Hurthle Cell Carcinoma. Struggled with my body absorbing meds, and I’m still being weaned down on the synthroid (they were purposely overmedicating me to bring my tsh down). Since my surgery, I have ZERO energy. Walking makes me exhausted. And it completely sent my depression all over the place. Is….is this my new normal? This is so far from who I was the morning of my surgery…

Top reply
    • ItsTheSarcasm

      770d

      My tsh has been finally steady for a few months (actually was too low at some points-but they were over dosing me on the synthroid because of the aggressiveness of hurthle cell, they didnt want it to have anything to thrive off of because of the angioinvasion), but once i had it down a few months-the anemia kicked in. And i have no idea why. I was taking iron pills for about a month to try and raise the level myself-they wanted me to avoid getting transfusions if possible-and i felt so unbelievably sick. Ive stopped now for almost 2weeks. Im still exhausted, but i dont feel sick like i was-hunched over, wanting to throw up. It was awful. I go in a few weeks for another blood check and if its still low-theyre gonna give me the thyroid medicine with the t3 included in it. And if im still anemic, i might just push for a transfusion…”top me off doc. Lemme start fresh” 😂😂

    • ItsTheSarcasm

      770d

      My tsh has been finally steady for a few months (actually was too low at some points-but they were over dosing me on the synthroid because of the aggressiveness of hurthle cell, they didnt want it to have anything to thrive off of because of the angioinvasion), but once i had it down a few months-the anemia kicked in. And i have no idea why. I was taking iron pills for about a month to try and raise the level myself-they wanted me to avoid getting transfusions if possible-and i felt so unbelievably sick. Ive stopped now for almost 2weeks. Im still exhausted, but i dont feel sick like i was-hunched over, wanting to throw up. It was awful. I go in a few weeks for another blood check and if its still low-theyre gonna give me the thyroid medicine with the t3 included in it. And if im still anemic, i might just push for a transfusion…”top me off doc. Lemme start fresh” 😂😂

    • Dede1981

      778d

      I know how you feel for months I didn't think mine was ever going to go down and this last time I had my tsh checked it went from 9.34 down to 0.92, I'm still trying to figure out if I actually feel better or not

    • ItsTheSarcasm

      780d

      They said it was just showing signs of thyroid cancer. And i opted for surgery because none of the biopsies resulted clear enough “too bloody”. And i had a friend of mine thats a doctor look at my report to better understand what the hell the ultrasound said and his face swayed my decision to have the tt as opposed to go for a biopsy attempt again, so…just the regular ‘ol thyroid cancer.

    • Kimmiemae

      786d

      Hello. Can I ask what type of cancer you thought you had before thyroid removal?

    • ItsTheSarcasm

      833d

      Thank you both! Yeah, i was on tirosint liquid for a bit while i was waiting for my body to absorb it, but my insurance wouldnt cover it so it was getting too expensive because i was taking such a high dose. Because hurthle cell is such a rare form of the thyroid cancer, and its so aggressive, theyre being super aggressive with making sure my tsh stays under 1. Because if any new thyroid cells grow, it will grow back as the cancer and it already has spread into my blood vessels so it can show up anywhere in my body. Im still on 150mcg of synthroid and im just……done feeling this way.

    • JessieMila

      833d

      Hi! In my experience it took awhile before the doctors found the right medicine and dosis that worked for me…talk to your doctors when is not working and lots of patience… My body didn’t absorb well syntroid so I got switched to Tirosint and that made a huge difference I don’t feel tired and have more energy

    • TiffanyAnne

      833d

      Hi there, I’m sorry you’re going through this. I’m not familiar with Hurthle Cell Carcinoma and obviously NOT a doctor. BUT from my experience, once they get your syntheoid back up to a normal level, you will start to have more energy, less depression etc. Be an advocate for yourself and get your TAH checked regularly. Some doctors try to say anything below 5.0 is “normal” but I and many others feel much better around 1.0. I hope that helps!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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