Kidney issues

Jose Miller3 said:Are you guys still buddies?

Haha, only if you hold my hand while I finish this milkshake!

jadesailor14 said:haha, sure—if you’re gonna hold my hand while I chug this shake

you better... 😍

yup!

John Adams4 said:I’ve got Graves' disease myself, and honestly, I didn't even find out until I was mid-vacation in Florida. One minute I'm just trying to enjoy the sun, and the next, my heart is absolutely hammering—like, hitting 130 or 140 beats per minute—so they rushed me straight from the ER to get bloodwork and a scintigraphy scan. Just one of those things, I guess.
So, here’s the deal... I finally got my first round of test results back. Just staring at them now.
So, I just got my lab results back, and holy hell... my T3 is sitting at 7.63 nmol/L. Looking at the "normal" range they printed on the paper—which is supposedly 1.29 to 2.60—I’m basically off the charts. Like, way off. It’s one of those things where you stare at the numbers, wait for them to make sense, and then realize your body is basically running like a Ferrari with the engine screaming at redline while you're just trying to sit on the couch. Everything feels... frantic? If that makes sense. Just a total system overload. Not exactly the "peace and quiet" kind of vibe I was hoping for today.
So, I just got my lab results back, and... yeah. My T4 came in at 201.1 nmol/L. Looking at the reference range they provided—which was 71.2 to 161.0—I’m officially sitting well above the line. It's not even a close call, really. Just floating up there in the "definitely out of bounds" zone. Honestly, seeing those numbers makes me feel like my internal thermostat is just broken and cranked up to max capacity. Not exactly the news I was hoping for, but I guess that's just how it goes sometimes.
So, I just got my lab results back, and... yeah. TSH is sitting at 0.016 mIU/L. Looking at the reference range—which is supposed to be somewhere between 0.465 and 4.68—I am basically cratering. Just staring at these numbers like they’re some kind of cryptic omen. It’s pretty much zero. If you’ve ever dealt with thyroid stuff, you know that feeling of looking at a decimal point and realizing your body is currently running a marathon while you're just trying to sit on the couch. Everything feels a little off, everything feels a bit too fast, and now I have this tiny little number to explain why. Just one of those things, I guess. Life comes at you fast.
So, I spent an entire year playing chemist with my own body. I was stuck on this endless cycle of Thiamazol—you know, the stuff that basically tells your thyroid to shut up and stop pumping out hormones—plus Levothyroxine, which is just the synthetic hormone you have to take because your system isn't doing its job. It’s a total balancing act, honestly. Just constant back-and-forth trying to keep everything from spiraling.

So, I went in for that first scintigraphy scan, right? Nothing much to report there—just some increased uptake in the right lobe. Then came the second one, and well, they actually found something this time: two tiny little nodules, one at 2mm and the other at 4mm. Both supposedly benign, apparently. Just more stuff to keep track of, I guess.
So, I’ve been off the meds for four months now. Honestly? Feeling a hell of a lot better. My hormone levels have finally leveled out and hit the normal range, which is a massive relief. I'm still getting my bloodwork done every three months just to stay on top of things, though. And those issues with my eyes—they’ve definitely backed off, which is good, but they haven't totally cleared up yet. Still lingering there, just... hanging around.

Look, over the course of this past year, I’ve been playing a little too much doctor with myself—just dosing up on meds here and there without much guidance. But honestly? Before you even think about touching anything, you really have to get your head around the symptoms. You need to know exactly what we're talking about when it comes to hypo- versus hyperthyroidism. It's a massive difference, and you don't want to be guessing.
I kept a close eye on all the symptoms—for me, it was stuff like my vision getting weirdly sharp one minute and then blurry the next, gaining weight out of nowhere, just being completely wiped out, sleeping all day, hair thinning, feeling super jittery, and that racing heart thing. Honestly, I could tell exactly which phase I was in just by how I felt, which helped me tweak my medication dosage accordingly. Of course, I wasn't just guessing; I stayed on top of everything with regular checkups and blood work through my doctor.

P.S.: Dealing with this autoimmune inflammation stuff... meanwhile, those nodules have definitely grown. My doctor insists they aren't surgical territory yet—she ran an ultrasound just a couple of weeks ago—and apparently, the antibodies have cleared out of my labs. For now, anyway.

Thanks. You pretty much hit the nail on the head, honestly. Maybe I should add one more thing to the pile, though...

So, look, you’re dealing with an autoimmune thyroid issue—which, let’s be clear, is a whole different beast than a tumor. You’ve got those so-called thyroid-stimulating antibodies (TSA) basically impersonating the TSH hormone, which just goes into overdrive, cranking up the production and release of your T3 and T4. And you already mentioned the eye stuff—that ophthalmopathy where the antibodies start messing with the muscles around your eyes. Then there’s the skin issues some people get, like that doughy, swollen texture on the shins. Plus, all the classic hyperthyroidism symptoms... the racing heart, being wiped out constantly, insomnia, hair thinning, digestive issues, messed-up cycles, night sweats, and the mental rollercoaster ranging from pure mania to full-blown psychosis. Honestly, you laid it all out perfectly. It's a lot.

You even mentioned it yourself—your T3 and T4 levels were through the roof while your TSH was bottomed out. It makes total sense, actually. Those antibodies of yours are basically playing dress-up as TSH, tricking your pituitary gland into thinking it’s already got plenty of thyroid hormone on hand. So, via that whole negative feedback loop thing, your system just shuts down the production of TSH entirely. It's a mess, honestly.

Look, it’s great that you’re in remission right now. Really. Let's just hope it stays that way. But, look—you know how this goes. You know there's always that shadow hanging over you where a relapse can just pop up out of nowhere. It’s a cycle, isn't it? Remission, then a setback, then back to remission... it can flip-flop like that for your entire life, even for people who aren't even on the formal treatment track. It's a grind. Unfortunately, this thing is chronic, and there's no magic "cure" button to press once and for all. That's why you can't let your guard down. You’ve gotta keep up with those checkups and stay on top of everything. Constant monitoring is the only way to play the game. 👍

I can't believe I'm even repeating this said:She actually had the nerve to tell that surgeon he wasn't even qualified to be giving out advice like that. Honestly, the audacity.

..........

And honestly, there’s just one more thing bugging me... is it just me, or does it feel like almost everyone who jumped in to reply to my post is dealing with kidney issues too? Seriously, what is it with this group and renal problems?
That's it. That's all there is to it.

Look, when it comes to endocrinology? Yeah, she’s definitely more qualified than some surgeon. Seriously. If you want someone who actually understands the underlying mechanics instead of just hacking away at things, she's the one. Surgeons are great and all, but for this stuff? It's a different league entirely.😉

Look, my kidneys are doing just fine—no issues there. I’m really hoping everything else stays that way too. Fingers crossed.

And look, for the record—nobody’s forcing you to take anything. I’m talking generally here, obviously. Every patient has the right to say "no thanks" to a treatment plan. You can always go out and hunt down a second opinion if you're feeling unsure, but honestly? That just opens up a whole new headache. How are you even supposed to know who's actually right? Is it the first doctor you saw, or this new one? It's a total toss-up.

mistyhound2 said:Unfortunately, this condition is chronic and incurable, which is why keeping up with constant monitoring is so vital. 👍

Nothing is truly incurable...
it might just be currently unsolvable, but science keeps moving forward, doesn't it? 😁

Is asthma "incurable" too? 🙂 😂 😂 😂

mistybear4 said:nothing is truly incurable...
maybe things are just UNTIL NOW unsolvable, but science keeps moving forward, right? .. 😁

And what, asthma is "incurable" too? ... 🙂 😂 😂 😂

Look, I don't even take you seriously, so I wasn't even reacting to your nonsense.😁 (I'm just surprised by how everyone else is reacting to it.)

mistyhound2 said:And look, at the end of the day, nobody is forcing you to take any medication—speaking generally, of course. Every patient has the right to turn down treatment. You can always go out and ask for a second opinion, but then you’re just left wondering who actually knows what they're talking about, the first doctor or the second one.

They could just keep bouncing from a third doctor to a fourth... 😁

mistybear4 said:they could just go see some other guy, or a fifth one... 😁

instead of running straight to Goldstein asking how to cure some incurable disease—as if he’s just gonna wave a magic wand and fix everything in a couple of sentences 😁

mistyhound2 said:Look, I’m not even taking you seriously anyway, so I didn't actually react to any of your ridiculous comments.😁 (I am just genuinely curious about how everyone else is handling it!)

It’s much like what they say about public forums—other people are reading this stuff too, and they might actually fall for the nonsense! That is why some folks go out of their way to provide a well-founded, logical explanation.
And believe me, when it comes to nonsense, there is plenty to go around. 😁

rustymoose54 said:Rather than just asking Goldstein how to cure an incurable disease right off the bat, he’d probably just lay it out for them in a few magical little sentences. 😁

It’s like two guys chatting at a dive bar in Chicago.

"Did you know beer actually contains female hormones?" the first one asks.

"Really? How does that work?" the second one replies.

"Well, if you drink enough of it, you start talking nonsense and driving like an idiot."

😁

rustymoose54 said:Instead of just asking Goldstein how to cure an incurable disease right off the bat... he’d probably just lay it out for them in a few magic little words. 😁

🤣

they can always go see a third, or a fourth...

mistybear4, they could go see twenty people if they wanted. How the hell are you supposed to know which one of them actually knows what they're talking about?

nimbledriver81 said:Like people always say, there are outsiders lurking on these forums who might actually fall for the nonsense, so some folks go out of their way to provide a grounded explanation.
Well, if you're looking for gems of wisdom, you'll find plenty. 😁

Yeah, though it’s honestly pretty pathetic how a few of you self-proclaimed "experts" can't seem to grasp my point... but I suppose there are still some reasonable people left here, maybe with slightly smaller egos, who are actually reading this. 🙂

mistybear4 said:So, there’s these two guys hanging out at a dive bar in Chicago...

"Hey, you ever hear about how beer is loaded with estrogen?" the first guy asks.

"No way, really? How's that work?" the second one replies.

"Well, simple—you drink enough of it and suddenly you're talking total nonsense and driving like an idiot."

😁

man, you basically live on Budweiser at this point, gulping it down every single day... 🙄

I feel like my heart is just being ripped right out of my chest... 😢

mistyhound2 said:It is good news that you have reached remission—hopefully, it stays that way. Though, as you likely know, recurrence is always a possibility; one can find themselves cycling through relapse and remission indefinitely—even for those who haven't sought treatment. It is an unfortunate reality that this illness is chronic and incurable, so regular monitoring seems... essential. 👍

Thanks for the response. 🙂

At the moment, my only real concern involves those nodules that have grown over the last year.