Life after total thyroidectomy after papillary cancer

I seem to be having a similar situation. Had thyroidectomy left lobe that was positive for Folicator and Hurdle Cell
I believe our first instinct is the one we should go with and this is certainly no different. Saw local ENT who advised surgery after FNA, went for second opinion to Duke and also to WFBH
All doctors said the same thing. Thyroid has to go if I was going to survive. My gut instincts say no way.
I should never have had the surgery which was November 26.2019. Since the surgery I feel as though I live in someone else’s body as I don’t recognize my own. Heart palpitations, BP out of control, fatigue beyond belief and rapid weight gain
I am short of breath all the time and cannot sleep
My TSH levels have increased dramatically and all the doctors want to go is wait another 6 months before doing anything. This is ridiculous. I think I know my own body better than anyone. I live in it
I don’t fit in the standard mold and quite tired of being put in a category that I do not fit in
I also have Mucinous invasive Carcinoma of the breast. Had mastectomy and reconstruction. This went off without a hitch. God bless those doctors
Now I am feeling like what was the use to go through all that just to have my body and life destroyed by the thyroid and lack of communication and understanding for my body, me. I don’t think you are a nut case, your words for if so then I am with you.
God bless

Sorry, I meant to ask this under a different discussion.
Just joining this group. Diagnosed with papillary thyroid cancer, had thyroidectomy some 20+ years ago. Two questions, after all these years I'm just wondering if I should be using iodized or non-iodized salt? Also, I switched from synthroid brand to generic due to cost. Anyone know if this is a good thing or bad?

So sorry to hear this. I had a total thyroidectomy in 2001 diagnosed papillary carcinoma. I have been doing well since then. I get labs yearly and as needed if not feeling well. I have a good endocrinologist. Just wondering if some of the issues you are having are because the physician needs to adjust your thyroid medicine. Hoping you can start feeling better.

hi thyroidectomyhe, i can understand to a certain extent, but, then again not. i have not had the thyroidectomy yet, said it was papillary carcinoma, then off to get the neck, soft tissue ultrasound to see if it has spread. so where i am at in my mind is.........do i want to go through something that is going to make me feel like you do at this time, i do not like to take medicines, oh, they think i am goood to go for the surgery, never mind my elderly age. i do have vertigo so i can understand your passing out feelings. i am functioning right now and scared to death to not be able to. i mean..........thanksgiving week, i cooked 5 turkeys and 2 cakes. i pushed it, but, i love to do things. so to have surgery or not, to experience what i read others are suffering. my prayers go out to each and everyone that i have read so far. please forgive my childness, but i told the dr. before i left the office, that i feel like a 2 year old and i do not want to do this, she asked me if i was going to have a temper tantrum, i said "no". wishing you the best.

hi blulilbaby, i was watching a video, where they were talking about pig's hormones that they used back in the day. so i was wonder if that might be "tirosint". on the video they were talking about how some people cannot take the modern day thyroid pills and done better with the older ones. so glad all is well with you, only met my endo one time and tried to "relate" to her. hmm, not too relatable.

@lilyann, of course you gave the right answer to your doctor that you weren't going to take a temper tantrum. You want to get down to business with her. But I completely understand that toddler resistence to embracing this whole darn thyroid cancer thing. Who wants to do it, right?

I just want to let you know that here on Connect, tantrums, venting, and just saying things outloud that you can't say with family, friends and docs are permitting here. 🙂

Lilyann, When is your surgery? Do you have questions that members like @mnroni1 @jlanderson76 @nobody @blulilbaby @dho @rzawie24 @destincindy might be able to help answer?

hi colleen, thank you so much for understanding. on the 12th of december, i have to get my voice box checked, then on the 19th of december, i go for the neck and soft tissue ultrasound. i don't mind anything that is not invasive, not looking forward to a tube going down my nose however. scared that i might have one of my coughing spells, and its quite embarrassing for me. then all this grunting and trying to clear my throat. since this pandemic i hated to be around someone coughing and grunting and clearing their throats, i guess i got paranoid. i do have a question and i wonder if they will operate since i have not had my covid shot? please be nice as i have gotten flu shots for years only to be so sick afterwards and i do mean sick and not for a few days. just now starting to feel somewhat human after the last flu shot in 2018, you know the one for the elderly, triple dose. praying for all on all these sites. i read alot on Quora, and oh, my. what some people go through. thank you for listening, i sure needed your answer colleen. i will try to keep that "stiff upper lip".

good morning colleen, i hear the flu is rampant, so i am wondering about any surgeries going on in hospitals. maybe you could let me know if you have heard anything on the subject. thank you so much.

Good questions, @lilyann. Most hospitals, Mayo Clinic included, recommend that patients get vaccinated for Covid and the flu if they are able. However, it is not mandatory. Some people cannot be vaccinated and unvaccinated patients will be treated. If patients are symptomatic, they may be asked to take a Covid test. Most hospitals have re-instated or not lifted the wearing of masks.

Surgery and medical care continues. Here's a statement from Mayo concerning care:
"Mayo Clinic continues to support patients and address their health care concerns during the COVID-19 pandemic and the current flu outbreak. If you have medical needs, please do not delay seeking care, whether it is COVID-19 related or not. Mayo Clinic has taken precautions to ensure we can safely care for you through both in-person and virtual care."
https://www.mayoclinic.org/covid-19/rochester
Imagining a scope going down your now is understandably an uncomfortable mental picture. Of course, you'd expect to have a cough reflex. I'm confident that your care team will keep you comfortable. They do this all the time.

My endocrinologist thinks the same about me. Since TT in May 2019, I have had insomnia then sometimes sleeping up to 18 hours a day, anxiety, cannot tolerate heat and will sweat in 50° weather, or I'm freezing cold, serious memory issues, mood is totally off, no energy, weight gain, nerve compression in my foot, hands numb and hair falling out. Since the TT, it feels like my body is missing something. I have been to a psychiatrist and Psychologist. I do not have a psych disorder. I was put on a mood stabilizer. It has helped with the mood swings. My doc says as long as my levels are right, I should feel fine. He thinks I'm trying to further my disability claim. I am not. I wish there was more research done on people with a TT. I have seen the same complaints in other groups. Why don't the doctors believe what we are saying. It is not being diagnosed with cancer, my body is "off" since the TT. I know I'm forgetting something. Feel free to ask questions.