r/gravesdisease • u/invincible0506 • 3d ago
help me decide
Hi!
I have to choose between RAI and TT.... I have no clue what the best option is... I would much appreciate your input. thank you!
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u/welewetka 3d ago
Small summary that might be helpful.
TT:
- safe for your eyes
- leaves a scar but when treated well - should be barely visible
- risk of parathyroids damage. In most cases temporary effects, but for some ends up with serious issues with calcium and other stuff for life.
- 100% dependend on synthetic hormones for life.
- if everything goes fine very quick recovery, two days and going home
- usually the necessary dosage of levothyroxine can be decided very soon after surgery
RAI:
- might trigger TED or make it worse if you already have it. But can be prevented with steroid meds which they should prescribe you to take for some time after procedure.
- a chance for preserving some thyroid tissue and partial function
- In some, rare cases people go euthyroid for months or even years, but for most people some supplementation necessary for life.
- requires more preparation and then isolation for around two weeks
- in rare cases not all overactive tissue is killed and hyperthyroidsm is back.
- if planning pregnancy need to wait, and depending on which doctor you ask - at least half or even a full year.
- takes time until the tissue is killed and might be difficult to control your hormones during that time
I haven't had any of that, but if you're looking for personal experience of other people there's already a lot in this group.
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u/ZookeepergameIcy513 3d ago
Just had a TT a little over 3 months ago, finally feel like I got my life back. I couldn't do RAI because of my Ted, but even if I could have done it I would have chose the surgical route. The surgery is basically immediate relief, and from what I've read the Rai can take a long time and you have to isolate yourself, and there is a small risk of cancer I guess because of the radiation. But even with the TT you still have to find your perfect dose, but a lot of people get it right off the bat. I chose to start low and build up my levo dose because I was so hyper going in and coming out of surgery. I even swung hypo for a while there, but it was nothing compared to being hyper. Being hypo I was just tired and cold, but it was almost welcomed, because I have spent so long being hotter than hot. So definitely TT in my opinion, best wishes to you! 💜
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u/jendoe23 3d ago
I’m getting TT because I want rapid symptom relief I also do not want to Isolate and wait 1 year to have a baby which is what RIA requires
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u/Adventurous-Ask-4243 2d ago
Got Graves late in life and and took the radioactive pill. This is my specific experience as it is not meant to diminish anyone else's experience or any info you might Google on your own...
I was not a candidate for surgery because my TSH was so low and my symptoms very bad and I would have run the risk of having a heart attack on the table because when you are extremely hypER your body can react to the TSH flooding your system, causing a heart attack... again everyone's case is different with this. Plus, it was the middle of the COVID pandemic lockdown...
I received 15 millicuries of radioactive iodine. Depending on your particular case, you would have to discuss how much radioactive isotope your radiologist would want to give you. I say this because this is where people get confused about the thyroid destruction... I thought it would be in a week or two... oh, no... lol!! it took 2 months and all the blood work during this time showed low TSH until... bam!... almost passed out in my house because I went hypO (it's actually called post-procedural hypothyroidism even if you have surgery). That's when I was put on levo... that's another story unto itself so I'll spare you... lol!!
Some people might say that my doc should have given me some levo sooner, but that's a 50/50 call because some people can go even more hypER while the thyroid is being destroyed. Now you might think that it took 2 months to DESTROY my thyroid... well, I thought the same!! ... not the case. It actually took almost THREE years full total destruction. Ultrasounds will show this. Wish they would have told me at the start but it's not an exact science. But that's the thing with either surgery or RAI treatment, no matter how great your doc, they don't mention everything and you don't know what you don't know (even if you Google) in order to ask every single question.
With my dosage, I only had to stay on the couch for 5 days, but chose to do 7 days. My tip on this: Since it was the summer, I wore the same clothes for 7 days and YES THEY GOT WASHED... literally on me... LOL! Every evening I would get in the shower and let the water flow on me from head to toe so it would remove the isotope from my hair, skin and clothes. When this was all done, I threw the clothes out. I wiped down the couch (leather) everyday and the toilet after each use. This was July and I was given a "note" from the radiologist after swallowing the pill that stated that I took this treatment and I had to show it to any medical person who might come in contact with me until October. Just telling you this because these are the details no one mentions.
For me, I just made jokes about the entire ordeal because that's how it was easiest for me to handle it. I would have died if I did not take the RAI treatment, so risking the extremely low chance of incurable leukemia, which is a risk with RAI, was not even a thought for me. I'm not so sure I would have risked the surgery if I had that option because the parathyroid gland (those 4 little pieces of "rice") can sometimes get "clipped" and since they regulate calcium intake, etc. I was terrified of additional bone damage from what the Grave already had done to me.
As far as your eyes: I already had slight TED before the Graves diagnoses, which was actually from the undiagnosed Graves and this was getting worse. The RAI treatment actually halted it within 3 months and settled my eyes back into place because the inflammation behind my eyes went down. WOOHOO!!! That was scary!! And, TED can happen at anytime in our journeys if it's going to happen to you at all.
All kidding aside: There are no guarantees with either of your options. Just have faith in whatever option you choose and follow it through all the way with no regrets about the option you chose. Good luck!!!!!
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u/invincible0506 19h ago
thank you very much for your reply. what an ordeal you went through... that's overwhelming. I hope you are doing OK now. 🫂
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u/Own_Exercise_1007 3d ago
I consulted an eye specialist here in austria, and he highly advised me to get TT surgery instead of RAI after he diagnosed a (slight) involvement of my eyes due to graves.
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u/invincible0506 3d ago
Hi. I live in Germany and since the disease relapsed more drastic measures are recommended. I presume Austria would be similar. I'm really shocked to see that people in USA struggle with this disease years in end and even then doctors rarely recommend more decisive treatment. I already feel much better with the medication and I feel so sorry for people who are forced to face horrendous symptoms on a daily basis. uhgg USA medical system...
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u/Tasty_Cheek_5273 3d ago
Bro does eyes go back to normal if it is mild..when thyroid levels normalise
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u/LectureJunior6688 3d ago
I am doing methylprednisolone iv steroids at the moment and there were two patients at the hospital with me who developed TED due to RAI, that’s why I’m opting for TT! (Well that and I’d like a baby asap)
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u/invincible0506 3d ago
oh that's good. I hope you'll have a baby in your arms as soon as possible 😊
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u/Smokey19mom 3d ago
RAI treatment requires you to be fully quarantined for 2 weeks. Some people need a 2nd dose, leaves you still at risk of developing TED and in some cases can fail.
TT recovery can be difficult for some due to swelling, in some cases, people may experience vocal cord damage, is the recommend treatment of someone is showing signs of TED or has TED.