Avatar universal

so i am 3 days in after my rai treatment, and im starting to doubt myself.

my endo says surgery is too risky, this is the only option, its a one shot deal.it will only destroy the nodule on your thyroid.  I go to nuclear medicine, and the dr there says my endo lied to me, that this will most likely destroy my thyroid, which the way is completely healthy except I have a nodule on it, and oh because its a toxic nodule it hates radiation and that this may not take and might have to do a second dose. then again if I have surgery, they would be removing a partial thyroid. either way im loosing something!!!! so basically what im asking is, did I make the right choice in doing the rai treatment, or should I of fought my endo on surgery? oh btw this nodule made me have a hyperactive thyroid, they thought I had graves disease at first, even funnier story, im not a skinny girl at all. im 175lbs. I mean I did loose some weight I did weigh 225, so yay me, but still. I don't know if that info helps any.
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Avatar universal
Hi abirk1930,

I'm sorry you are having to deal with this.  I've never had hyperthyroidism or RAI, but I had thyroid surgery (a thyroid lobectomy and then a second surgery to finish removing my thyroid due to thyroid cancer).  

Hyperthyroidism is treated with RAI, surgery, or sometimes anti-thyroid medication can help,  I think doctors treat hyperthyroidism more aggressively than hypothyroidism because the symptoms of hyperthyroidism include an increased heart rate (tachycardia) and atrial fibrillation (where the heart beats irregularly) and both these symptoms can be quite dangerous.

Surgery and RAI  either remove or destroy a significant portion of your thyroid gland, so whether you did the surgery or RAI, you might end up needing to take supplemental thyroid hormone if you don't produce enough.  I hope your doctor discussed the potential side effects with you and the potential for needing to take thyroid hormone.  (My thyroid was completely removed, and I now take a supplemental thyroid hormone - it is tricky getting to the right dose, and having "some" natural thyroid function remaining is probably easier to manage than no natural thyroid function.)

From what I can find, the RAI may not completely destroy thyroid function.  Depending on the dosage of the RAI, you may not need to take supplemental thyroid hormone but some people do.  Surgery has many risks (including damage to the laryngeal nerves that control your voice and damage to the parathyroid glands which could cause problems with calcium regulation) as well as risks associated with general anesthesia... the surgical risks are all very low, but they do occur in some people, which is probably why a lot of doctors prefer using RAI over surgery to treat hyperthyroidism.

As to whether you made the right choice -- it's too late to go back now and not worth stressing yourself over it, and I don't think there is a right or wrong choice in this case.  Hopefully someone who has made a similar decision can help answer your question as well, but if it were me, I'd probably have chosen the RAI myself because surgery seems to be riskier.  (I ended up having to stay in the hospital for a night after my second surgery because my parathyroid glands were not working properly, luckily I think they were just temporarily affected by the surgery and are working fine now).

I hope you feel better soon, and good luck with the RAI treatment.
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I mean, I know it's too late now, I just wish my endo would of told me everything instead of me finding out from a complete stranger. I was so angry, I even cried. I mean besides this nodule on my thyroid. I actually have a healthy thyroid, and to find out that 75% of the time the thyroid is destroyed in the process...thats a high percentage. I guess I'm just alone in this, I don't know anybody else who has gone through this, the only other person I know has hypo and she said I was stupid and could of just been monitored. I kinda snapped on her, because she don't know my whole situation. Ugh here I go again venting or ranting or whatever. Thank you for your input. It was helpful. And 2 surgeries!!!!! Yikes!!!! Good vibes are being sent your way!!!!! I hope good things come your way and they start regulating your meds and stuff!!!! Mine is just beginning!!!!
I've never been hyper, so I don't know what it feels like (I've had hypo symptoms long before I knew it was thyroid related or I had a thyroid problem).  I believe some hyper symptoms are much more dangerous than most hypo symptoms (of course super low thyroid function is also very very dangerous), so it's not really the same thing as treating hypothyroidism, which often can be monitored and treated with supplemental thyroid hormone.  I do know tachycardia and atrial fibrillation are major concerns with hyperthyroidism, and it's possible doctors want to treat it very quickly.  (I waited 2 months for my first thyroid surgery and then another two months for the second, in my case that was fine because thyroid cancer usually grows very slowly).  RAI might have been the faster treatment option for you, depending on your endo or local hospital surgery schedule, and if the decision was wait a few months for surgery or do RAI as soon as possible, your doctor might have thought you needed treatment quickly.

I'm sorry your doctor lied to you and basically gave you no choice.  I think a little bit of extra time to explain the different options and why he or she felt RAI was the best choice would have been very helpful, since RAI does damage the thyroid and having to take thyroid hormone afterwards is a pretty likely outcome (with either surgery or RAI).  I definitely don't think you are stupid!  I had a ton of hypo symptoms for decades and didn't realize they were thyroid related... stuff happens and then we deal with it.  There are people on this site who can relate to what you are going through.

I'm glad I got treatment when I did, and luckily for me, my thyroid cancer hadn't spread outside of the thyroid and all I needed was the surgery to treat it.  (Papillary thyroid cancer has an incredibly high survival rate with an excellent prognosis, so by the time it was diagnosed, it had already been removed from my body and I wasn't that worried about it).  It took a while to get to the right hormone level for me, which honestly has been the hardest part of the two surgeries, but I'm 8 months from the second surgery and I think I'm feeling mostly normal now  (I had a TSH and freeT4 blood test about every month, and I'm a "bad absorber", so it took longer than it should have to get my hormone levels to "normal").  It's not great to have two surgeries, but I recovered pretty quickly from both of them.  I'm a runner, and I was back running 2 weeks after each one.  I'm running in a marathon in 10 days, so I'm doing what I want to do and things are getting back to normal.

Good luck with your treatment, and I hope things go well for you.
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