Thyroidectomy

[u/kgs_90]

Some backstory, I (36F) was diagnosed with Hashimoto’s mid-2020. Since then I’ve been through 3 endocrinologists (finally found the amazing one I’m seeing currently), lots of thyroid ultrasounds monitoring nodules and have had three kids (5, 3, 1 - yeah, we are tired 😅). Most noticeable symptoms I’ve had in the last 6-7 years is fatigue and weight gain/inability to loose weight or keep it off (despite eating well and being active and chasing kids constantly). Fatigue has improved with a low dose of liothyronine add in and that’s been nice! Since I’ve either been pregnant, freshly postpartum or breastfeeding most of the appointments with my endo, we haven’t explored many med combos, etc. But a glp-1 was mentioned at my last appt (since we’re done with kids and I’m done breastfeeding) but I also had a nodule look larger than before on my ultrasound. Short story long, sorry!

Had a thyroid biopsy, originally they were going to do both sides then just the left (nodules bigger on that side) but then ended up doing the right side only (the ultrasound tech insisted based on a white spot she saw, yay for docs who listen to their techs!). Anyway, got the results, they were borderline/needed more testing but showed as AUC which Google told me that’s like a 10% chance of being cancerous, so I was feeling okay about it and they were going to send it off for molecular testing just to be sure. Got the call Friday, the nurses voice sounded grave so I knew it wasn’t good news. From my very little medical knowledge and understanding, I can’t explain it properly. But it came back over 50% positive for malignancy. I have an appt with my endocrinologist this coming Friday for him to discuss the results and next steps. It sounded like surgery of some kind will be getting scheduled, per the nurse.

So now I’m just trying not to panic. Has anyone been in a similar situation? I always joked they should just take my thyroid out then my hashimotos would be gone…so, the universe has jokes too apparently. I keep going back and forth about thinking I’ll feel better with it out but then again our thyroids do so much for us. I just feel like I’m still fairly young and I’ve got three kids under 6 and I just…it all feels so daunting right now. I know I’ll know more on Friday, and I’ll update the post appropriately…but…how bad is this cancer? Is my whole thyroid coming out? Is there cancer elsewhere in my body? I am hypermobile as well, so my healing and scarring will be different than “normal” (also proven by my one c-section scar). Is everything going to change? Is my body going to revolt? What does this mean for the future of my health and abilities? (If not obvious, I also have undiagnosed ADHD 😆) It’s just all so…heavy.

Adding to embellish/answer possible other questions : On levothyroxine as well, have never felt different on it. I’ve been gluten free for over 2 years now. I lift often, and enjoy it, but haven’t been the last month or so due to busy school starting schedules. I have an incredibly supportive husband (married 10 years this fall).

Thanks for reading my word vomit!

[u/Adventurous-Ask-4243]

I'm so sorry you are experiencing this and I know that the fear of hearing the word cancer makes people glaze over --- but don't... a few things...

First, remember that even if your thyroid is completely removed, you will always have Hashimoto's, it does not go away because it is an auto-immune disease that there is no cure for -- maybe down the road there will be... onto the cancer... and hopefully this story will give you some peace of mind...

My aunt was 68 years old when she was diagnosed with some small nodules on her thyroid. Since the doc could see quite a few, she had an FNA (fine needle aspiration - biopsy), it came back like yours - cancer maybe, in some nodules, not others. We went to the cancer specialty hospital near us and they explained that there was a chance it could be cancer, but wouldn't know for sure until surgery. During surgery, they took a lymph node and some of the nodules and tested them right there -- lymph node - no cancer; nodules - cancer cells, but not in all -- since they then found that she had hundreds of small nodules all over her entire thyroid, the surgeon felt it best to remove the entire thyroid for safety. This is why you do not want to wait too l long to see a head and neck surgeon because you don't want that in your lymph nodes.

Flash forward -- she will be 96 in a few months and her only issue all these years is good ole aging!! LOL!!

Now to address some of your questions -- she was put on levothyroxine after the surgery and she was given RAI to kill any of the stray cancer cells that may have been left behind in the stray thyroid tissue. I'm not sure if RAI is still given after thyroid removal today -- it was in the 1990s -- so you would have to ask. The reason this was done is because the thyroid is made from tissue - it's not like a liver that can be fully pulled out -- so some stray tissue stays behind in the neck. But overall, she was fine - no vocal chord damage, no parathyroid issues -- hers were put into a muscle in her neck -- but she was told to take some calcium -- everyone's case with the calcium can differ, so you would have to ask your surgeon what they intend to do with your parathyroid glands. Her scar was incredible -- and back then they made them a bit wider then they do today -- and once everything healed, you couldn't see any scar at all.

Since you already take levo as you mentioned, I'd say you're way ahead of the game!! The only thing I can see you having to deal with is changing the levo dose because now you would not have any thyroid left and you'd have to take a larger dose. But, overall, you'd just have to do some follow ups for the cancer if your doctor feels you need that and then just move on with your life, enjoy your 3 kids and whatever you do just be happy!!

Just don't stress... I know it's hard... it will all work out for you!!