Posts by brightgull95

You really don't have much ground to stand on here. If what you're describing is actually true—that an entire left lung is filled with fluid—then anyone who doesn't immediately perform a puncture in that situation is a total incompetent who needs to have their medical license revoked, specialist or not. Maybe the oncologist mentioned it back when the pleural effusion was negligible or just tiny, and if that was the case, then sure, they were right. But if the effusion had reached the point where a puncture was clearly necessary? Well, draw your own damn conclusions.

mistybison45 said:A short clip about POTS, with American subtitles.

A video where people living with it describe what it's actually like to deal with dysautonomia.

So, has anyone actually donated yet? Because let’s be honest, they really went all out making this first documentary look incredibly moving—they clearly have a top-tier marketing team working behind the scenes. But then you get to the end, and it says they've only managed to scrape together a measly $949,811 over the last five years. Not even a full million! That is frankly pathetic considering how many people have built entire careers off this cause; they need to be pulling in way more than that. Especially now that they've portrayed POTS as this all-powerful thing, making some uninformed person think it is the magic cure-all for every single ailment.

wiredpuma5 said:Thank you so much for the info.

My tachycardia eases up when I'm lying down (75-85 bpm, maybe hitting a low of 65 at night), but as soon as I stand up—boom—my pulse jumps to 95-110. It stays like that all day while I'm sitting or standing. When I'm moving around (like walking), my heart rate is elevated, but I don't feel it nearly as much. My blood pressure is low. It can hit 100/48, and once I stand up, it goes to about 100/75. So, based on everything, I think it’s less about my heart and more about my brain.

It would have been a lot more helpful if you had actually answered the questions asked, because they were phrased quite precisely and concisely. It's like asking someone if it's raining, and they respond by saying the streets are wet and it's cloudy. But whatever, no big deal.

Based strictly on what was just written, POTS still seems possible, though it's looking less and less likely. It's more probable that the sympathetic and para- (does anyone remember that Pokémon?) -sympathetic nervous systems just can't reach an agreement on who's in charge. While your vagus nerve (the parasympathetic side) crashes your blood pressure and keeps it low, the sympathetic system kicks in due to that low pressure (which drops even further once you stand up). The carotid sinus gets stimulated, cranking up the heart rate to ensure blood flow. Even if the pulse technically crosses that magic threshold of 100 bpm—meaning it technically falls under the definition of tachycardia—110 bpm isn't massive. However, if there are accompanying symptoms that point toward POTS, then yes, it’s significant.

The brain is actually even less to blame in all this than the heart. The autonomic nervous system originates in the medulla oblongata, and then—at least regarding the sympathetic side—it continues through various ganglia distributed throughout the neck, chest, and abdomen. There are some along the spine, too.

Anyway, go ahead and get that TTT (tilt table test, I just looked up the exact English term again) done. Depending on the results, we might actually have some answers, especially if it comes back positive, since it has high specificity (around 80-90%). Its sensitivity is a bit lower, though (60-75%), so a negative test doesn't completely rule out POTS. All in all, you're a little bit smarter now than you were four hours ago, and best of all, none of this cost you a single cent. Or any other currency, for that matter.

wiredpuma5 said:I’ve gone through everything—literally piles of lab results stacked up—and on paper, it all looks fine. No mono, nothing. Just that whole nightmare with sepsis and ARDS. That was it. Everything else? The Holter monitor came back clear, my ECG is fine, the stress test was normal, and the echocardiogram showed nothing out of the ordinary. Just... nothing.

That’s not just a minor win—that is a massive victory! I am being dead serious here. When you look at the mortality rates for both conditions, they can hit as high as 80% depending on how old you are. Honestly, looking at everything else you've had to endure, I truly hope this is the one good thing that finally offsets all the absolute garbage life has thrown your way.

wiredpuma5 said:It’s honestly such an uphill battle over here when you're trying to get a "modern" diagnosis like CFS, fibromyalgia, or Dysautonomia. It feels like the medical establishment just isn't ready for it. But from what I've gathered so far... Out West. Honestly, they’re just throwing diagnoses around like confetti at this point. It’s absolute chaos. At the end of the day, you have to stop waiting for someone to hand you a roadmap. You need to take matters into your own hands, figure out what's actually happening, and try to manage these symptoms yourself. Stop looking to them to fix everything for you.

Define. The West. Always talking about "the West" like it’s some unified, flawless ideal, when in reality, it's just a collection of different interests constantly bumping heads. It’s all much more complicated than the headlines want you to believe.I don't have that impression, even though I work at that exact same place. I honestly don't know what they're thinking over in the West lately. It feels like everything is just spiraling out of control.Unless there’s some massive payday tied to handing out that specific diagnosis—I mean, if doctors can milk a certain set of procedures just to line their pockets—then sure, maybe that explains why my colleagues over in the West are so damn eager to label everyone with it. Or, I don't know, maybe they’re actually doing legitimate scientific research in that field? If not for one of those two reasons, then honestly, I don't see the motivation at all.

Look, you don't really need that specialized dysautonomia clinic right out of the gate. Honestly, unless by some miracle they actually perform tilt-table testing—which, frankly, I’ve never seen them do, though I haven't exactly gone digging for the answer either—it's probably not worth your time yet.

wiredpuma5 said:Hey there.

I won't drag this out too much, but I have to ask: does anyone know if there are actually specialists in the States who can properly diagnose POTS—you know, dysautonomia?

I don’t know if anyone here has actually gone through this yet, but in my experience, talking directly to the patient is at least half the battle when it comes to getting an accurate diagnosis. So, I have to ask: how exactly did you all end up with a suspected case of POTS in the first place? Was it just a gut feeling from a doctor, or was there actual clinical reasoning involved? Also, has anyone here actually sat through a tilt-table test yet? I want to know what that's like.
Is this just your own personal hunch, or is there actual data behind it? I need to know: does the heart start racing—just for a few seconds—immediately after you change positions, like moving from sitting or lying down to standing up? Or does it take a few minutes to kick in? Or perhaps it takes much longer? And more importantly, are these bouts of tachycardia happening completely independently of body position? Also, was any of this actually captured on a 12-lead ECG? Just throwing those questions out there to start with.

wiredpuma5 said:According to my cardiologists, there’s absolutely nothing wrong with my heart. They look at the charts, see everything is "normal," and move on. But they aren't the ones living this reality! My tachycardia is absolutely destroying my quality of life, and frankly, even the medication isn't doing a damn thing to stop it. It's infuriating to be told you're fine when you feel like your body is failing you every single day.
Every single time, my results come back perfectly normal. So, what happens? They immediately try to ship me off to a psychiatrist, only for that doctor to just bounce me right back to my cardiologist. It’s constant ping-ponging between specialists, and frankly, I'm sick of it. I'm not getting any better, and I'm tired of being passed around like a hot potato while everyone plays the blame game.

Listen, my colleagues—specifically those who aren't psychiatrists—might actually be dead on here, and honestly, I think they’re right. It’s a good thing, too. That tachycardia you get just from shifting your position (which is basically POTS, isn't it?) is nothing more than... Heart reaction. It’s just... it's performative. It’s someone acting out of some sense of obligation or pity because they think they *should* care, rather than something that actually comes from the heart. There's a massive difference between genuine empathy and just going through the motions because someone else is watching. One is real; the other is just noise.

wiredpuma5 said:Who am I even supposed to talk to about this? Seriously, who is the go-to person here?

Thanks.

Has anyone here actually gone through with a tilt-table test yet? If you have, I’m looking for someone who’s actually done the work—if you've got the results in hand, please reach out. Specifically, if you have a 12-lead ECG and your medical history points toward POTS, then I am more than happy to step in and offer some guidance. I've been looking into this, and I'm ready to share whatever insights I can helpfully provide.

Kyle Nelson2 said:At least I actually made an effort to provide a real answer, unlike those convoluted ramblings of yours used to mask (or maybe not) your sheer arrogance.

The only question you’ve actually—and I mean correctly noted here—put any effort into answering is one about yourself that has absolutely nothing to do with the original inquiry. Precisely. But when I was actually stuck in a bind, you didn't give me a single useful thing.

Go ahead, feel free to insult me. I know that's the kind of hit you need in life just to feel even remotely better for a split second. Honestly? I'll just laugh it off because watching this is actually entertaining. 😳

Chris Mitchell4 said:If anything, I can say that behind me there were two easy conceptions and two school pregnancies—and my cycles have always been regular.

Of course, we’re looking at PCOS—a condition that any seasoned clinician would instinctively jump to, almost reflexively crossing it off their list of differential diagnoses before even finishing the intake. The ovaries aren't to blame, the thyroid isn't the culprit—at least, not for now. There really isn't much else left on the table. But honestly? That's probably for the best.

Chris Mitchell4 said:My primary care physician evaluated the results and concluded that everything looks perfectly normal—there’s absolutely no need for any further testing or investigation. ☕

The LOM assessment was actually quite spot on, and—unless those symptoms I mentioned earlier are seriously eating away at you—I’d say their conclusion is perfectly valid.

If you already have all your test results in hand (or even just a few), or if you simply want to get a second opinion on whatever is bothering you, stressing you out, or keeping you up at night—look, I’m here to help. My fee is $0.00 or $0 in any other currency. Just shoot me a private message if you're interested.

So, apparently you need help with both "rocket science" and basic reading comprehension. I mean, let's start with the fact that you actually have to read for understanding here—we are talking about *her*, not him. And by extension, we have to consider the endocrine implications of a very powerful paired organ that can trigger these exact same symptoms. Only if that specific organ is cleared should we mmmmmmaybe turn our attention back to the thyroid. At the end of the day, every organ is interconnected in some way, so besides doing a mountain of reading, actually interacting with people is just as vital.

Your doctor is almost certainly right on this one. Honestly, you really need to sit down and wrap your head around what urinary (and orthostatic) syncope actually entails—once you grasp the mechanics of it, everything will finally click. Hashimoto’s has absolutely nothing to do with this.

Sam Taylor22, you mentioned on some other thread that this isn't exactly "rocket science," so why don't you go ahead and answer your own question?

The TSH level isn't low enough to ring any alarm bells just yet. Honestly, T4 and T3 aren't even the real dealmakers here—you really have to look at the free T4 and free T3 levels. Even so, nothing is low enough to start pointing the finger at the thyroid for everything you're feeling. You absolutely need to consider all the other potential illnesses, conditions, or random life stressors that could be causing these symptoms.

Exactly. I mean, his actual role in predicting any of those illnesses mentioned in the first post remains a total mystery. We’re talking about a compound where study results are completely all over the place and totally contradictory. Go ahead, do your own research and see for yourself.

You still haven't actually answered my question about which Western European countries include homocysteine testing in their routine checkups. But honestly, whatever—you clearly misheard me. It isn't part of any standard protocol. Sure, maybe at a few specific clinics or within certain niche studies, it might be considered "standard," but in everyday clinical practice? Absolutely not. And since those very same studies produce nothing but contradictory results regarding how much you can actually infer about human health based on blood homocysteine levels, I’ll leave it up to you to decide just how (un)important this compound really is.

So, you’re claiming this is a thing? Fine, then tell me—which specific countries in Western Europe actually include homocysteine in their standard blood panels? I’d love to pack my bags and head over there right now, because clearly, I’ve ended up in the wrong place. Where I am, they don't bother with it at all. Not as part of routine checkups, and certainly not even when someone actually needs it for cases where homocysteine is supposedly beneficial.

Brian Jones38 said:I’m sticking with Neutrogen because, honestly, it’s the only brand that actually does anything for me. I feel my best during the summer when it hits those 90-degree days—my hands finally feel like they can breathe. But the second the temperature drops and that biting wind kicks in? It’s game over. The dryness starts, then the cracking follows right on schedule. I’ve been listening to dermatologists since day one, and all they ever tell me is that "this is just your skin type" and that I simply have to keep moisturizing. It is incredibly frustrating! They try to insist there isn't some *hidden* underlying cause for this, but telling me there's nothing else going on feels completely absurd. There has to be something more to it than just "bad luck."

I’ve got my second follow-up appointment with a vascular surgeon in a few days to go over all my test results. During that first consultation, he mentioned there’s specific therapy available to help with circulation—something about dilating the blood vessels and getting things moving again...

I am seriously, truly getting fed up with this. It’s beyond annoying at this point—it is genuinely frustrating.

Look, I hate to be the one to burst your bubble here, especially since you're looking to a doctor for answers, but I’m almost certain the dermatologist is spot on this time. How do I know? Because I’ve been exactly where you are. I dealt with this exact same issue myself. Every single time the temperature dropped, my skin would just give up—my hands would crack until they actually bled. Back in the day, before you could even easily buy Neutrogen around here, I was just slathering on whatever random stuff I could find. Eventually, I realized that liquid soaps were absolutely wrecking my skin more than bar soaps did. So, during the winter—or whenever it got chilly—I made sure to stick strictly to bar soap. The weird thing is, right around the time I turned 25, the whole problem just... vanished. On its own. No idea how or why; I never really gave it much thought at the time. Honestly, there's a chance it might just resolve itself for you, too. But if it doesn't? Well, then you're facing a reality where neither a vascular specialist, an endocrinologist, nor any surgeon or internist is going to be able to help you. This is squarely in a dermatologist's wheelhouse. That's their territory, plain and simple.

Brian Jones38 said:I started losing my hair at nineteen. Fast forward to twenty-nine, and I’m basically bald—meaning I’m out there shaving my head every ten days just to keep up. I don't take any medications or anything like that. Should I be getting my hormone levels checked? Wait, you know... I actually haven't given that much thought. A dermatologist told me years ago that my hair loss might be tied to elevated testosterone levels, but I never followed up on it or actually got blood work done to confirm. It's also worth noting that almost every man on my mother's side eventually went bald, too.

Hair loss? Well, let’s get one thing straight right out of the gate: it’s heavily tied to your genetics. Just a little observation, if you can call it that.

Obsessively overanalyzing every single little detail is only useful if you’re actually getting paid to do it. If you’re just some person dealing with a medical issue or a personal problem? It’s a complete waste of time. It never, ever leads to anything productive. I’ve seen this play out time and time again, and it’s always the same useless cycle.

Brian Jones38 said:That’s just how the lab report is titled. I didn't write it myself.

Oh, I know you didn't! I'm just pointing out the glaring lack of logic here. Besides, getting a thyroid biopsy isn't even a standard requirement anymore just to confirm Hashimoto. What I'm actually trying to tell you—subtly, apparently—is that maybe it's time to find a new medical team to handle your Hashimoto diagnosis, don't you think?

Thyroid surgery, yet they’re puncturing a lymph node? Find the error at a level suitable for a preschooler.

Anyway, I won't drone on or beat around the bush: based on what's been written and attached here, Hashishmoto doesn't even seem likely. As for everything else, just leave that to the doctors who will be—more or less pointlessly—guiding you through your treatment as a patient.

Brian Jones38 said:Hey everyone,

Moin, moin!

Brian Jones38 said:I honestly don't even know where to begin, but I’m going to try my best to summarize this whole mess and explain exactly what’s been eating at me.

It’s always better to start from square one rather than trying to pick up somewhere in the middle or jumping straight to the finish line. Honestly, if you aren't building from the ground up, you're just asking for trouble later on.

Brian Jones38 said:I am dealing with some serious issues with my hands lately. The skin is incredibly dry—we're talking painfully dry. It cracks constantly, and honestly, I’ve been dealing with bleeding quite often. I can barely keep this situation under control, and it's only because I'm dumping a massive amount of money into high-end hand creams just to get some semblance of relief.

Look, you aren't exactly breaking new ground here, and you certainly aren't the only one dealing with this. It’s not like this only happens during the dead of winter or when you're out there sweating buckets, either. If the skin on the back of your hand—the side you don't use to slap people, obviously—is constantly drying out and cracking all year round, believe me, you're in good company.

Brian Jones38 said:So, my rheumatologist just sent me off to get some bloodwork done to check on these specific markers. I’ve been staring at this thread for an hour and I am absolutely losing my mind. Seriously, how can people be this dense? It’s like common sense just went out the window for everyone involved here. Let me address what **brightgull95** said first. You honestly think that approach works? Give me a break. It’s completely disconnected from reality. And then we have **Rebecca Chase** chiming in with that half-baked theory—it’s frustrating because it ignores everything we actually know about how this stuff functions. It's not just "complicated," it's fundamentally flawed. And don't even get me started on the comments from **Rachel Brooks63**. Every time I read those posts, I feel a headache coming on. How can you be so certain about something when there isn't a shred of evidence to back it up? It’s pure speculation masquerading as fact, and it's polluting the entire discussion. The level of misinformation being tossed around is staggering. People are taking these tiny, insignificant details and blowing them up into these massive, sweeping conclusions. It’s exhausting. We need to stop entertaining these baseless arguments and start looking at the actual data. If we keep going down this road, we’re never going to get anywhere. It's infuriating! And when I finally got back, she was still feeling pretty unsure about everything, so she actually went out of her way to write up a recommendation for a clinical immunologist-rheumatologist over in Cleveland.

Seriously, what a joke. At this rate, all that’s left is for my immunologist-rheumatologist to refer me to an immunologist, who then sends me right back to a rheumatologist, just to start the whole damn cycle over again. And then they have the audacity to claim that a perpetual motion machine is impossible? Please. The level of dishonesty is just staggering.

Brian Jones38 said:Another thing—just to throw it all out there—about a year ago, I found out I had Hashimoto's thyroiditis. It wasn't even planned; I was just getting a routine abdominal ultrasound when they stumbled upon it. Total accident.

So, someone on the abdominal ultrasound actually flagged that the thyroid morphology looks off? Seriously? Well, there goes the Zaaaakon.

Brian Jones38 said:My specialist told me straight up that my thyroid looks like it’s been chewed on by moths or something. It sounds ridiculous, I know, but that was the description. Since then, I've been through the wringer—blood work, multiple ultrasounds, the whole nine yards. My latest labs show an elevated ATG at 289, and the ultrasound confirms the gland is enlarged. But here’s the kicker: everything is still functioning normally. So, according to the doctors, there is (as of right now) absolutely no need for any kind of medical intervention or therapy. For now, anyway.

All those supplements they use to "prove" a diagnosis of Hashishmoto have one massive, glaring flaw: they aren't even remotely specific. I mean, seriously? Even Anti-TPO, which supposedly boasts a 90% specificity, is questionable at best. And don't even get me started on Anti-TG—with a measly 50% specificity, you might as well just throw your money straight into the trash. It's absolute nonsense.

How that thyroid gland actually looks on an ultrasound is one of those key pieces of the puzzle when you're trying to prove Hashishmoto, but let’s be clear: it doesn't carry nearly as much weight as the clinical presentation, the lab work, or the cytology.

Brian Jones38 said:For the last few months, I’ve been dealing with this constant tightness and a literal lump in my throat. It was incredibly unsettling, honestly. Thankfully, that specific sensation has finally subsided, but the diagnostic process was a whole other ordeal. I had to go through ultrasound imaging and a cytological biopsy to get some answers. The good news? Both tests came back completely clear—no major issues found. However, according to the official report, I still need to stay on top of things by having regular fine-needle aspirations on certain lymph nodes just to monitor them. It’s one of those "wait and see" situations that keeps you on edge, even when the results look okay.

And here we go—right at the crux of the whole damn issue. What exactly was being processed in that cytology report? What was actually punctured? Was it the thyroid itself, or were they targeting something else entirely? Because if they didn't perform a puncture on the thyroid, then someone better start explaining why they were poking around somewhere else!

Brian Jones38 said:Let’s get back to this whole hand issue... Honestly, it’s been eating away at me for 10, 11, maybe even 12 years now. Before that? Absolutely nothing. Not a single damn thing. I never had any issues with them until this started.

If this thing has been sitting there for ten, eleven, maybe even twelve years, why on earth is it suddenly becoming an issue now? Seriously, what changed?

Brian Jones38 said:I'm curious... what on earth am I supposed to make of these elevated values? (See the link above).

That’s exactly why you need to talk to an immunologist-rheumatologist once the standard rheumatologist hits a dead end. That’s the specialist who actually sits down across from you in the exam room. I can’t see you in person, so as someone specializing in a different branch of internal medicine, all I can tell you is that any lab value on the planet can mean absolutely anything—or it might not mean a damn thing at all.

Brian Jones38 said:Are those indicators for Hashimoto or something else?

They aren't confirmed indicators of Hashimoto. For something else? Maybe, maybe not.

Brian Jones38 said:Furthermore, could my hand issues be linked to thyroid dysfunction? My vascular surgeon mentioned it was a possibility during our first consultation, and I'm heading back soon for a follow-up once I have my blood work results.

Look, if a vascular surgeon tells you there's a link, then there's a link, right? Why are you even questioning if it might *not* be connected? Just use some common sense here—you've been dealing with these hand problems for ten, eleven, twelve years, yet the thyroid issue only popped up recently. It doesn't exactly scream "direct connection," does it?

Brian Jones38 said:The specialists in nuclear medicine told me there's no need for therapy (yet).

And they're probably right.

Alright, let me be blunt this time. There isn't one single doctor—as an individual—who can step in and fix everything right now. You won't find them in some outpatient clinic or a hospital somewhere. Because let's get real: there is no such thing as a person who is simultaneously an oncologist, a gastroenterologist, a gynecologist, a radiologist, AND a cardiologist all rolled in one. And that’s assuming they actually know how to do their job properly! Such a person doesn't exist, and they never will. So, look, your mother needs at least four—ideally five—specialists who actually know what they're doing just to figure out the "what," the "how," and the "why" of this whole situation. Especially since that last cardiologist you mentioned—based on what you're saying, anyway—didn't even bother to note that "heart defect" anywhere, which is incredibly suspicious if you ask me.
If any of those doctors who just gave her a cursory glance could have helped with everything she's dealing with, they would have sorted it out ages ago. But at an outpatient level? For someone in your mother's position, that is simply impossible.