Disappearing in plain sight

I honestly don't know how to help myself—I feel like a ping-pong ball being bounced around.
To get straight to the point: I've been struggling with my weight for a few years now. I am incredibly thin, yet every single test result comes back perfectly normal.
I’m at a loss for who to turn to. Lately, even my own doctor has noticed how much weight I'm losing; she keeps sending me for more tests, and to make matters worse, I start work tomorrow... I feel like I'm physically falling apart—it's devastating, both visually and mentally.
What concerns me most over the last few months is that I've started developing lumps in my groin area—swollen lymph nodes, essentially. I have PCOS, and my doctors are trying to convince me that these lumps, which are large enough to be felt like a fist, are actually just my ovaries, and that the pain I'm experiencing is coming from them... (is that even medically possible?)
When I asked an infectious disease specialist if constant pain is possible, she just shook her head. She’s incredibly tight-lipped—I can't get any real information out of her. The last time I asked about getting swabs done, she told me it was impossible because the sheer volume of medications I've taken would mask the results—which isn't news to me. Instead, they just keep passing me from one specialist to another... some of them have even gone as far as saying the previous doctor completely botched my care.
Last year, I was kept on antibiotics for an entire year, which has absolutely wrecked my immune system. Now, I'm just spinning in circles.
Who can I actually talk to?
I didn't want to go before the medical review board, because I simply don't have the nerves to deal with being humiliated—not when they'll likely just clear me to work anyway. It feels like they only take people seriously if they have terminal cancer, basically telling you, "Well, you're going to die soon anyway..." It makes me wonder where the humanity has gone in this system.
I don't have the luxury of choice here; I'm forced to settle for this current situation because I can't afford the private specialists that everyone seems to prefer lately.
I feel like a lost soul on a highway, ignored by every passerby who just walks past—and some even laugh.😢

I honestly feel for you and wish I could offer more than just this: go fight for a referral for a solid internal medicine exam. Someone clearly dropped the ball somewhere. This sudden weight loss combined with the depression you’re clearly battling sounds exactly like what happens when your thyroid goes haywire. Have you actually had your hormone levels checked? It’s entirely possible that it isn't just your thyroid, but some other gland acting up too, so an endocrinologist might be able to give you some actual answers. Ideally, you'd find a way to scrape together enough cash to see a specialist privately and get everything handled right now. Maybe you have friends who could chip in and help out? Look, we're talking about your health here, not some frivolous whim. If you need to take out a loan to cover this, don't hesitate. People take out loans for all sorts of nonsense, yet when it comes to their own well-being, they suddenly become stingy.

Angela Wright said:I truly feel for you and wish I could offer more substantial advice—but honestly, my best suggestion is to fight for a referral for a thorough internal medicine exam. It seems like something was overlooked in your initial screenings. This sudden weight loss and the depression you're battling are classic indicators of thyroid dysfunction. Have you had your hormone levels checked recently? It is also possible that it isn't just the thyroid, but perhaps another gland involved; an endocrinologist might be able to provide some clarity there. Ideally, if you can manage the cost, seeing a private specialist immediately would be the best route. Perhaps some friends could help out with the expenses? This is about your health, not some trivial whim—if you need to take out a small loan to cover the costs, please don't hesitate. People take out loans for all sorts of luxuries, yet they hesitate when it comes to their own well-being.

Thank you for your empathy and support,
The depression is hitting me hard—it really started taking hold right around the time the weight began to drop. My thyroid hormone tests came back normal, though.
I’m not sure if you’ve experienced this, but I sometimes get the feeling that those of us in the workforce are just being processed through a system designed to wear us down...
I won't say where I live, but some private doctors have flat-out refused to even look at my results simply because they come from my county. It leaves me feeling incredibly skeptical—how can I actually trust any of these findings?
My blood work looks perfect, and everything else does too, but perhaps my system hasn't fully cleared the antibiotics, which might be masking underlying inflammation or something similar...
I am dealing with intense lower abdominal pain and stomach issues; I've dealt with inflammation before and suffer from gastritis and H. pylori.
Then there are the constant pains and muscle cramps.
And that's just the tip of the iceberg.
I'm constantly on edge, I can't sleep, and the physical pain is relentless.
I've just given up—people treat me like an idiot and push me just enough to get by...
I simply have no strength left...
It's not just that I feel poorly; people see me and immediately start peppering me with questions or comments about how bad I look. It is exhausting and drains what little energy I have left...
and there is nothing I can do about it...

...man, I have seriously never heard of PCOS causing lumps like that to pop up before....
And don't even get me started on our doctors; they're honestly useless. It feels like you have to practically interrogate them just to get a straight answer out of them, it’s infuriating! Anyway, look into finding a solid internist or an endocrinologist in your area. Honestly, it might be worth just paying for a private clinic, since at least they actually get your test results back in a reasonable timeframe.

fadedmason said:Thanks for understanding and having my back,
Depression is hitting me hard right now; everything really started spiraling when that kicked in, and the weight loss followed suit. I’ve had my thyroid hormone levels checked and they came back fine.
I don't know if you've experienced this, but I get this feeling that people in certain corporate environments are just mass-produced and then worn down like machines...
To be honest, I won't say exactly where I live, but some private doctors here have told me they won't even bother looking at results if they come from a certain county. It leaves me feeling skeptical—how can I actually trust these numbers? Who am I supposed to believe?
My blood work looks fantastic, along with all my other tests, but maybe my system hasn't fully cleared out those antibiotics yet, which might be masking inflammation or something else entirely...
I'm dealing with intense lower abdominal pain and stomach issues; I've had inflammation, plus I'm managing gastritis and a hernia.
The muscle pains and cramps are constant.
And there's more to it.
I'm incredibly on edge, I can't sleep, and then there's this physical agony.
I've just given up because people treat me like an idiot or patronize me just enough to get by...
I'm completely drained...
It's not just that I feel terrible; it's that the people who see me absolutely murder me with questions and comments about how bad I look. It's exhausting and just saps what little energy I have left...
And there's nothing I can do about it...

Look, insomnia, muscle spasms, anxiety, rapid weight loss... those are textbook symptoms of a thyroid disorder. My advice? Go back and redo those blood tests, and demand a referral for an internal medicine specialist to do an abdominal ultrasound. Your thyroid can throw your entire body into such absolute chaos that it's hard to wrap your head around. My old man was a complete wreck before they realized his thyroid was the culprit; looking back at how he acted before the diagnosis, he doesn't even recognize himself. Are you taking any medication for the gastritis or the hernia? Or perhaps birth control for PCOS?
Listen, get moving and go see a decent doctor. Don't let yourself hit a total breaking point before you start actually tackling this problem properly.

Everything points toward the kidneys, though it could just be a nasty cocktail of different issues hitting at once. You’ll need to get blood sugar, kidney function, and liver enzymes checked first, then go from there...
You need a solid doctor. And try to stay somewhat optimistic, no matter how much that sucks. After every thunderstorm, the sun eventually comes back out.🙂

Angela Wright said:Look, the insomnia, the muscle cramps, the anxiety, the sudden weight loss... those are textbook symptoms of thyroid issues. My advice? Go back and redo those blood tests...

🙏: I second all of that.
You definitely need to get those labs redone.

Angela Wright said:Look—insomnia, muscle spasms, anxiety, rapid weight loss... those are textbook symptoms of a thyroid disorder. My advice? Re-run those blood tests and get a referral for an abdominal ultrasound from an internist. Your thyroid can throw your entire system into such chaos that it’s hard to wrap your head around it. My father was a complete wreck—looking back at how he acted before they finally diagnosed his thyroid issues, he can hardly believe it himself. Are you taking anything for gastritis or a hernia? Or perhaps birth control due to PCOS?
Listen, get moving and go see a decent doctor. Don't let yourself reach a full collapse before you start addressing this properly.

I was already thinking about paying extra for my State Farm coverage just so I could use those private clinics.
Believe me, I had a gastroscopy—the doctor said everything was terribly inflamed. He prescribed Contraloc 40 mg and took a sample to check for Microbe. He told me to come back Monday instead of Friday so we could bypass the line and work something out. When I asked if I needed a referral, he said no. But even when I tried to follow through, despite my pleas, the nurse wouldn't let me see him—and I felt absolutely terrible. It was a shock to see someone exercise that much authority over a patient. Luckily, they didn't find the bacteria; I had been on triple therapy once before, and I honestly didn't think I would survive that battle.

After years of dealing with gynecological issues and constant inflammation—and then having a gynecologist refuse to perform an ultrasound because she claimed "everything looked fine" since she had done a manual exam—a specialist finally recommended that I shouldn't wait and should head straight to New York City.
The most frustrating part is that the results were fine locally, but once I got to New York City, they weren't—and I have to wonder how that's possible, given the results were only a day apart...
It was actually a M. Counterpart who first diagnosed my PCOS when I saw him privately in New York City. That was also when my Pap smear showed CIN 1, for which he provided treatment... but I couldn't afford the financial burden of traveling to see him every four months. The last time he told me to come back in a year, but my Pap results came back again in four months, and the Bacteria returned...
So, effectively, he was putting me on a course of antibiotics every four months on average—and I suspect that's what really did me in😢—plus a string of other doctors I obviously had to pay for and so on.

I also dealt with a severe bout of the flu: ten days of a constant 104°F fever, followed by an infection in my throat and likely my lungs (I spent another 21 days recovering). My primary care physician just left me at home—she actually thought I wouldn't make it through.

I’m with you on this—you really need to go get a full battery of tests and a complete systemic checkup done at a high-end clinic.

Jamie Newman5 said:It all points toward the kidneys—though it could easily be a combination of issues. You need to check blood sugar, kidney function, and liver enzymes first, and then take it from there....
Find a solid doctor and try to maintain some level of optimism, regardless of how difficult that feels. After every storm, the sun eventually breaks through..🙂

Thanks, but I’m not worried about people dropping dead after a few years—I’m worried about this unbearable pain. It’s something I can't manage even with Zalidar, Advil, or Splasmex... and that's just the tip of the iceberg.

I want to express my gratitude to everyone for the support, the advice, and for sharing your experiences... every bit of guidance truly helps. If anyone has any specific recommendations, please feel free to reach out via DM.

fadedmason said:Thanks everyone for the support, the advice, the shared experiences... honestly, every little tip helps. If anyone has any specific recommendations, feel free to shoot me a DM.

I went through something pretty much identical when I was just a kid—even though they knew what was going on, people just kind of brushed me off and kept throwing antibiotics at me like candy...
It’s a real shame you're dealing with financial hurdles right now, because let's face it—it feels like we practically have to buy our own lives back. But first off, I’d tell you to keep your chin up. I know from firsthand experience how brutal this is, but trust me, pushing through is worth it..
If you can manage it, try staying off all medications (especially for gastritis) for a bit, then go get a full battery of blood and urine tests done,
The issue is definitely there, so don't stop digging until you find the root cause. Did you get an ultrasound on your kidneys? In my case, my hormone levels looked fine—except for one slightly elevated marker—but the ultrasound picked up two cysts.
Thank God you don't have H. pylori, because that would have made your stomach issues a total nightmare.

Seriously, reach out to your family or friends for help. I highly doubt anyone is going to turn their back on you when it comes to your health.

Hey, I don't want to sound like a total pessimist here, but honestly, most doctors these days just aren't that sharp—there are definitely exceptions, though. I didn't quite catch what you meant about your county and the local doctors there. As far as testing goes, my infectious disease specialist went over how certain infections manifest... things like constant exhaustion, losing weight without trying, or in women, those stubborn gynecological issues that just won't clear up with meds. Plus, bad liver panels and swollen lymph nodes staying active for a while usually mean you need to check for mono or HIV, since both of those really tank your immune system enough to cause trouble👎 I’m with everyone else who said this: borrow money if you have to, take out a loan, whatever—just get all the tests done as soon as possible

fadedmason said:It’s actually quite sad—the Pap smear was fine before, but then once I was in New York City, it came back wrong. I can't wrap my head around how that happens, especially since there was only a one-day gap between tests...

This part makes perfect sense to me. When you get a Pap smear, they have to scrape a layer of cells from the surface. If you go back for another sample just the very next day, that sample isn't "clean" because the area hasn't settled. You really can't do Pap smears day after day, or even within the same month. You need a much longer window of time between them.
I remember going for a Pap smear once, and then just ten days later, my company organized a systematic screening at the office, so I ended up doing it all over again. Their results came back much faster and were so well-organized that I didn't even bother picking up the previous results from my doctor. When I finally went back a year later, the doctor actually snapped at me, asking why I hadn't come in sooner to collect my results showing CIN1.

As for doctors who try to steer you elsewhere—look, if you ever deal with something like pneumonia, you'll see how much easier it is to just head to the ER in the middle of the night and get everything handled in one single location.
Just ask for a hospital referral.

Whenever I have a health issue and I simply don't have the energy to chase down referrals or spend hours scheduling appointments, I just head straight to the emergency room (once regular clinic hours are over) and get whatever needs to be done right then and there.

That’s actually how I managed to get an MRI done this year, even though most people are stuck waiting for months.

Melissa James70 said:Their results were already finished and organized, so I didn't bother picking up my son's paperwork. When I finally showed up a year later, this guy starts snapping at me about why I didn't grab the report sooner since he has CIN1.

.

Well, why didn't he just give you a call? 😲That’s how things usually work around here.

Melissa James70 said:That actually makes sense. When they perform a Pap smear, they’re scraping off the top layer of cells. If you go back just the next day for another sample, that second one is going to be "clean" because the surface was just disturbed. You can't exactly run these tests back-to-back, or even within the same month. You need a decent amount of time to pass.
I remember once I went for a Pap smear, and then just ten days later, my company had a wellness screening at the office where they did it all over again. Their results came back faster and were much more organized, so I didn't even bother picking up the results from my own doctor's office. Fast forward a year later, and this guy starts yelling at me for not coming in to get my results, telling me I have CIN1.

But her first result was fine, while the second one—done only a day later—wasn't.

Drive a family member to the emergency room at your local hospital late at night.

If necessary, exaggerate the symptoms and the severity of the pain.

They’ll end up keeping you overnight to run all the necessary tests.

There isn't really any other way; I did exactly that with my father, and they only finally caught the illness that had been bothering him for so long once he was admitted...

fadedmason said:Lately, for the last few months, I’ve been dealing with these lumps popping up in my groin area—like lymph nodes or something... I have PCOS, and the doctors are trying to convince me that these lumps, which feel like the size of a fist, are actually just my ovaries, and all this pain I'm feeling is coming from them... (I mean, is that even possible?)

Last year, they had me on antibiotics for an entire year, so my immune system is basically trashed now, and I’m just stuck in this endless loop...
Who am I even supposed to talk to?
I didn't even want to go to the medical board review because I just don't have the nerve to be humiliated by them. Besides, they usually only send people who have cancer and maybe a few months left to live, telling them "well, you're going to die anyway"... so I have to wonder where this is all heading... (where did the humanity go?)

Ovaries in your groin? For God's sake, no. I seriously don't believe a doctor told you that. And I don't get it—antibiotics for a whole year? Sorry, I'm not buying that either. No doctor in America is prescribing antibiotics for a full year straight... you must have other things going on.

You should definitely head over to get an ultrasound of your thyroid! Honestly, your hormone levels might look totally fine on paper even if you have a goiter or some kind of growth on your thyroid gland, and since your symptoms are pointing pretty strongly toward hyperthyroidism or a goiter, it's worth getting checked out just to be safe.

Chris Morgan67 said:Just drive a family member to the ER at night—one of those hospitals where you actually have coverage.

If you have to, fake some intense pain or a seizure.

They'll end up keeping you overnight and running every test in the book.

Seriously, I did this exact thing with my old man, and it was only after they admitted him that they finally caught the illness he’d been struggling with for ages.

I totally agree with what was said above. Describe every single symptom you've got and tell them it hurts like hell. My family and I have actually used that tactic before just to get the specific tests we needed. It would be even better if you could pull this off at a major place like Johns Hopkins... maybe mention that you were just visiting someone and then suddenly the pain came back so bad you couldn't stand it.