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Hi everyone,
Iām in my early twenties and will likely be having a total thyroidectomy (TT) due to cancerous nodules and lymph nodes.
Iām feeling nervous about the surgery itself, but Iām even more anxious about what comes afterward.
It seems like everyone has a different experience with recovery and adjusting to life post-TT, so Iād really appreciate hearing about your journeys. Any tips, recommendations, or advice you can share would mean a lot to me!
Thanks in advance for sharing your experiences! š
40 F. Almost a decade of watch/wait with annual ultrasounds/biopsies. Huge nodules in my left side, mostly cystic fluid (Hence all the incessant biopsies- I once watched the team drain an entire needle full of fluid (the swelling went down and felt great). DXed with hashimotos/pcos in my early 20s. Took thyroid medicine (synthyroid). Last year, had an ear infection that refused to go away even with oral and topical antibiotics. Sex drive went away (I'm usually horny as a teenage boy), and my energy levels felt like untreated hypothyroidism. My hormone levels were within range...so...I was suspicious of having cancer (I felt a sense of dread and just plain awful). It didn't help that I was doing a PSW course as well so it was 900% crazy.
Got into my annual ultrasound. Techs went from joking to deadly serious and I just knew it was bad news bears. Got a phone call a week later from my endocrinologist, and he basically begged me to see a surgeon. Got into surgery a month later. Took half my thyroid, got it dissected and it was ptc. Had an massive allergic reaction to the adhesive on the tape holding my stitches shut so basically was told to remove them 2 days before. Kept my parathyroids intact but they were stunned for a couple of days...
Surgeon went in for the rest of it a month later. I managed to get a minor infection, popped my stitches a bit. Got wound care for 3 weeks, the nurses packed my tunneling wound daily and they had to use silver nitrate to burn away some extra flesh (that HURT more than the packing). Got the all clear a couple of months later and the surgeon adjusted my synthroid a couple of times. (Only time I was hyperthyroid, that feels worse than my usual hypothyroidism.)
Since my lymph nodes were clear, and no other markers were present, my endocrinologist decided against RAI.
Now I'm working on losing weight (other health issues - yay endometriosis/pcos) and regaining muscle. Eating high protein and low carb and much more veggies. My endocrinologist was happy with my weight loss - secret was weightlifting, lmao. My last check in with my endocrinologist was pretty much all clear so that was a big ass relief.
I would say my TT was easier than most, it was just miserable to wait for the surgery and my symptoms were just terrible fatigue. I was exhausted after the surgery as well - I mostly prepped dinners sitting down. But I had to take care of my parents too (they had major health issues as well so it was just a bunch of ill people trying their best, lmao)....
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