What Comes After Graves’ Disease Treatment? #shorts
McCall McPherson talks to someone who had Graves' disease at 20 and became bedridden. After radioactive iodine treatment, they spent a decade with worsening hypothyroid symptoms. Doctors promised the procedure would fix everything, but without proper ongoing management, the aftermath was devastating.
So most people that are diagnosed with Graves' disease, they go in and they're like, listen, you need to get a thyroidectomy immediately, nothing else. Tell me how the next phase unfolded for you.
Well, by the time I had a diagnosis, I, I was really the typical high-achieving, like, push myself to the limit, which didn't pair well with the autoimmune disease that I had. And then it got to a point where I didn't know what was wrong. I convinced myself perhaps I was just going a little bit crazy because you just Get in this weird place where you're having insanely high heart rate and you're like, this must just be panic. And so I went back home. I actually just went there to stay until I figured out what was wrong because I couldn't really get out of bed or anything. Mind you, I was what, 20 years old? So at that point I was already basically bedridden. And the ideas thrown around were initially thyroidectomy, which I just really didn't want a surgery. We also tried— I did get on beta blockers. Alongside the Adderall.
So confused.
It's so weird. I was doing things like injecting myself with B12 every day because my B12— it was like so weird. There were so many different things that they were trying until the point where— and I think this is going to surprise a lot of people, and I've said this before— I was trying a lot of their suggestions until the point where there was no other option for me, where they said, this is getting pretty life-threatening for you, you need to do radioactive iodine or thyroidectomy. It's not like Hashimoto's. Where you can like deal with it in time, Graves' can escalate really quickly and it's scary. So I just went with their advice and did the radioactive iodine. And I think that was the start of a really bad path for me. That kicked off a decade of intense sickness and more conditions, more diagnoses. Had I known what I know now, of course I might have done the— I would've tried to do things differently. Whether or not I would've succeeded without any treatment, I don't know. But what I will say is that wasn't necessarily a solution for me. The symptoms in many ways got worse and more intense, or they just flipped a switch to hypo symptoms in the most intense way. And I was completely bedbound still. So it was not ideal.
Your story parallels so many people with Graves'. A misdiagnosis, eventually get the diagnosis and they dangle this carrot of, if we just take out your thyroid, if we just ablate it, if we just stop it from functioning, life's gonna be so much better, right? Everything's gonna be fine. And so people do it. They're scared. This is like threatening. Not to say it's not the right solution, but the concept and the construct that everything's gonna be easy once we get this done is such a lie because life is so incredibly challenging. If you arrive on the other side of that surgery or procedure or whatever it is, and you don't have already the team in place that knows how to progressively manage thyroid, it, it's a swing into the other world, but it is devastating, right? Yep.
It sucked. It sucked.