Living with Cushing's syndrome

I’d be so incredibly grateful if anyone out there living with this syndrome could reach out and share what your journey has been like. How did you actually get the diagnosis? What kind of treatment plan are you following? Honestly, how does it actually play out in your day-to-day life? Just... anything else you think is worth mentioning about dealing with this
Thanks so much

Rachel Rodriguez62 said:I would be truly grateful if anyone living with this syndrome could share their experiences. How were you diagnosed, and what does your treatment look like? How does it impact your daily life? Please feel free to share anything else you think might be helpful regarding this condition.
Thank you.

A 24-hour urine collection can be used to measure hormone levels, followed by further testing for confirmation.
It is typically treated with corticosteroids...

Well, here I go—it looks like I’ve hit the jackpot. My doctors are looking pretty closely at Cushing's syndrome. On top of having to deal with blood work, they’ve ordered a 24-hour urine collection test, and since I am—to put it politely—completely clueless when it comes to these kinds of practical medical logistics, I was hoping you all might walk me through the actual procedure 😍 (for instance, do I need to start first thing in the morning, or can I just begin whenever? And if I do start in the morning, do I toss out that very first sample or keep it?...). Also, if I head in for my blood draws—which are scheduled for both 8:00 a.m. and 4:00 p.m.—can I bring in urine collected over, say, three days, or does everything have to be gathered on that exact same day? One more thing regarding that container they provide: can I just pick up extra ones at a local CVS or Walgreens if the provided amount isn't enough—especially since I tend to drink quite a lot of fluids?

Thanks so much, and wish me luck with this whole "collecting pee" business!

You need to provide a fresh sample; specifically, collect it in the morning when you undergo your blood draw. This allows us to accurately measure cortisol levels over a two-day peak—once in the morning and once in the afternoon—to capture the natural periods of highest secretion.
Old urine isn't useful because it serves as an ideal breeding ground for bacteria.

My mom was dealing with some kidney issues—kidney stones, specifically—so she spent the whole day collecting her urine in a rinsed-out water bottle, from morning until the next morning. That’s what they told her to do. I'm not entirely sure if she tossed out that very first morning sample, since this all happened a few years back and the exact details are a bit fuzzy. She didn't get any results from that particular attempt. Tomorrow morning, she's heading over to Mayo Clinic to drop off the sample and have some bloodwork done.

Good grief, my doctor just informed me that I’m supposed to collect some sort of 2-to-3 liter container—he wasn't even entirely sure of the exact size himself—and that I have to catch every single drop of urine for a full 24-hour period without missing a single bathroom trip... which, if you ask me, sounds absolutely absurd and frankly quite unbelievable. I mean, seriously... what am I supposed to do? Just keep it sitting in my damn refrigerator until it's full? It would probably be much more efficient if they just assigned me a hospital bed, a gallon of water, and a catheter so they could have all the samples they could ever want!

I'm heading down to the clinic tomorrow morning to get some actual answers, because honestly, I am completely bewildered by this whole situation. 😕

It is true that a 24-hour urine collection is required, but from my experience, patients like this should be hospitalized by day two while the sample is being gathered... I am not entirely sure why the process requires three full days of collection

It’s not that I actually need to be collecting samples for three days straight—I’m just asking, purely hypothetically, if it would even work to draw blood on a Friday, then gather a urine sample on Sunday and drop everything off on Monday... My doctor didn't mention anything about being admitted, though. I’d be heading over to the Mayo Clinic, and let's face it, they probably won't have an empty bed to spare. (Not that I'd trust them anyway—not after my last trip to the nuclear medicine department where they ended up sticking me on some filthy cot out in the hallway, and wouldn't a single soul offer me a glass of water? 🙂), and even if they did have space, I simply don't have the luxury of spending my entire day lying around waiting to pee. Honestly, what a massive inconvenience. 🙂

Good grief, why does simple writing have to be such a massive ordeal?

Look, if they provide you with a container that holds about two or three liters, that should be plenty. If you’re setting this up on your own—which I wouldn't recommend without some prep—just grab a standard plastic water bottle, give it a thorough wash, and use that to collect everything. Basically, if the containers they give you are only 1.5 liters, you might need to have two on hand. You could also try using a 3-liter jug from the distilled water aisle at Target... or, alternatively, you could buy some larger 12-ounce plastic cups; just place a clean cup under you every time you go, then carefully pour the contents into your bottle over the toilet. You'd wash the cup and toss it after each use, obviously. Don't even think about trying to pee directly into the bottle—that's just asking for a mess. Once you've carefully poured the urine into the bottle, seal it tight, wash the outside, and pat it dry with paper towels. Keep it tucked away on the bathroom floor where nobody can see it or, heaven forbid, smell it. In the morning, you might want to wrap it in aluminum foil and tuck it inside a few Ziploc bags before heading to the lab.

The goal is to collect a full 24-hour sample. So, you'll start on Sunday morning—but only AFTER you've finished your first urination of the day. Then, your final sample on Monday morning should be that very first morning pee. That's it.

briskeagle39 said:Good grief, why does everyone make such a massive production out of just peeing?

So, look—if they provide you with a container that holds about two or three liters, that should be plenty for your needs. If you're having to manage this on your own terms, my suggestion would be to grab a standard plastic water bottle—just make sure you give it a thorough wash first—and collect it there. In other words, if the containers they give you are only 1.5 liters, you might find yourself needing two of them. You could also potentially try using a 3-liter distilled water jug from a place like Walmart. Furthermore—and here is a little tip—you could buy some small plastic cups; you know, those slightly larger ones, and every time you need to go, you can hold a clean cup underneath, then carefully pour the contents into your main bottle while hovering over the toilet. Then, you simply wash the cup and toss it. I wouldn't recommend trying to pee directly into the bottle, though... that sounds messy, doesn't it? Once you've carefully poured everything into the bottle, seal it tight, rinse the outside, and dry it off with some paper towels. Keep it on the bathroom floor where it’s shielded from curious eyes (and noses!). In the morning, you might even want to wrap it in some aluminum foil and tuck it into a couple of Ziploc bags before heading over to the lab.

The goal is to collect a full 24-hour urine sample, which means you start on Sunday morning—but only AFTER you have finished your very first morning pee on Sunday. Then, on Monday morning, your final sample should be that first morning void. That's really all there is to it.

😘

Well, I just went ahead and popped it in the fridge—it was getting way too warm sitting there on the bathroom counter.

Thanks so much for all the helpful replies!

Well, here I am again, dealing with my cortisol levels.

My morning reading came in at 976 (ref range: 260–720), and my afternoon level was 465 (ref range: 50–350). Honestly, every single symptom I’m experiencing points straight toward Kennedyan syndrome—though I haven't had my ACTH tested yet, so I'm still in the dark there.

I was wondering, does Kennedyan necessarily imply the presence of a tumor? And just as a side note—before anyone asks—I am definitely not a bodybuilder.

Gosh, I am absolutely terrified.😢 ...

No, besides those two types of tumors—carcinoma and adenoma—there are other potential causes for Cushing's syndrome: hyperplasia is actually the most common, followed by certain medications, and even non-endocrine tumors that secrete ACTH itself.

Thanks so much!

By the way—could that same kind of adrenal gland hyperplasia actually lead to slower kidney function, or am I just overthinking things? (I’m feeling incredibly bloated again, honestly like a balloon.)
Now, I realize my questions probably aren't quite what this forum is intended for, but I’m just trying to find some comfort here—the wait to see my doctor is dragging on forever, and the uncertainty is absolutely killing me. My dad is dealing with microcellular lung cancer, so naturally, I've already gone ahead and panicked-diagnosed myself because I have a tiny little cough...

I’m curious, where on earth did you manage to get your cortisol levels up? I went out into the sun thinking I'd get a boost, but it felt more like my system just decided to go on strike entirely...

on the referral at the nuclear medicine department at Mayo Clinic

'did you go to a private clinic instead, then? It seems odd they would turn you away if you were willing to pay.' — though, honestly, maybe they really just stop functioning when things get complicated? I mean, I had to have blood drawn at both 8:00 am and 4:00 pm, plus deal with that whole 24-hour urine collection process myself.

Hey everyone...
So, sorry if this topic has already been covered, but I couldn't find anything quite like this while I was searching. If someone could drop a link if this has been discussed before... thanks in advance—I’d throw a happy waving smiley your way right now if I actually felt cheerful 😢

Basically, my sister was diagnosed with diabetes when she was 20. It could have been the stress, college, losing our parents... honestly, there are so many factors. Anyway, she's an amazing person, a student who's almost finished her degree, and she's worked so hard, but sometimes life just hits you with everything at once 😢😢 She has type 1 diabetes and takes insulin four times a day. Every year she’s had an MRI on her pituitary gland and everything always came back fine, but this year, they found a microadenoma on her pituitary—basically telling her she has Cushing's syndrome. Over the last two years, she’s gained a ton of weight around her waist while her legs stay relatively thin, her face has gotten rounder, she looks swollen all over, and she misses her period for three or four months at a time. My sister doesn't live in Washington, D.C., but out in Boston, and the doctors there suggested surgery would be the best move. They said it would be done transnasally. Ideally, the surgery would fix the swelling, the weight gain, and her cycle—and maybe even help stabilize her blood sugar, because even with insulin, she’s hovering around 15, and while she feels okay at 13 or 15, we all know 15 is still way too high. She talked to a neurosurgeon in Boston, but since I don't live there and am based in Washington, D.C., I'd love to bring her to see a specialist here in the States. I just want to talk things through and see what the surgical options look like in Washington, D.C. (and obviously, I'm prepared for whatever the costs look like...). We're going to ask around and check with friends or private clinics, but what I really need are your personal experiences or stories from people close to you... Where should we go, how does it work, and most importantly, WHO is the best? Feel free to send me a private message if you can help.

Man, I've totally tangled myself up in all this; I honestly don't know which way to turn 😕

Thanks again in advance....

Kimberly Sanders4 said:Hey everyone...
Look, I’m sorry if this topic has already been covered, but I couldn't find anything similar while searching. If there is an existing thread, please drop a link—thanks in advance. I wish I could send you all a happy waving smiley right now, but honestly, I just don't feel very cheerful. 😢

Basically, my sister was diagnosed with diabetes when she was 20. It could have been stress, college, losing our parents... I won't list everything. Long story short, she’s a great kid, a student nearing graduation, worked incredibly hard, but sometimes life just hits you with nothing but clouds instead of sunshine. 😢😢 She has Type 1 diabetes and takes insulin four times a day. Every year, she had an MRI on her pituitary gland and everything always came back fine, but this year, the scan revealed a microadenoma. They told her she has Cushing's syndrome. For the last two years, she’s been gaining massive weight around her waist, even though her legs stay thin and small compared to her upper body. Her face has become rounded, she’s constantly swollen, and she goes three or four months without a period. My sister doesn't live in Washington, D.C., she lives in Boston, and the doctors there suggested surgery would be the best move. Apparently, they can perform the procedure through the nose. Ideally, the surgery would resolve the swelling, the weight gain, and the menstrual issues—and maybe even help stabilize her blood sugar. Even with insulin, her levels sit around 15, and while she feels "okay" at 13 or 15, we all know 15 is way too high. She spoke with a neurosurgeon in Boston, but since I’m based in Washington, D.C., I would love to bring her to see a specialist here. I just want to talk things through and see what the surgical options look like in Washington, D.C. (and yes, obviously, we are prepared to pay whatever is necessary). We'll be asking around among friends and private specialists, but what I really need are your personal experiences or stories from relatives... Where should we go, how does the process work, and most importantly, WHO is the best? Feel free to PM me if you have info.

I've gotten myself all tangled up in this; I honestly don't know which way to turn. 😕

Thanks again in advance....

Go to Rib. Dr. Paladino, Dr. Henry, Dr. Darkness—everyone over there is top-tier👍. Dr. Paladino is incredibly positive and will go above and beyond, especially when dealing with a young patient. Besides that, from what I've heard, he’s probably the finest neurosurgeon in this part of the world right now.

Kimberly Sanders4 said:Hey everyone...
So sorry if this topic has already been covered—I couldn't find anything similar while searching. If there is an existing thread, please drop the link... thanks in advance! I’d throw a happy waving emoji your way right now if I could, but honestly, I just don't feel very cheerful 😢

Basically, my sister was diagnosed with diabetes when she was 20. It could have been stress, college, losing our parents... honestly, I'm not even going to list them all. Anyway, she's amazing, finishing up her degree soon, worked so hard, but some people just can't catch a break 😢😢 She has Type 1 diabetes and takes insulin four times a day. Every year she's had an MRI on her pituitary gland and everything always looked fine, but this year they found a microadenoma—basically told her she has Cushing's syndrome. For the last two years, she's been putting on weight like crazy around her waist, even though her legs stay thin and small compared to her upper body. Her face is getting rounder, she looks swollen, and she misses her period for three or four months at a time. My sister doesn't live in Washington, D.C., she's in Boston, and the doctors there suggested surgery would be a good move. They want to do it transsphenoidally—through the nose. If the surgery works, it might fix the swelling, the weight gain, and her cycle—and maybe even help stabilize her blood sugar, because even with insulin, she's hovering around 15, which feels okay to her, but we all know 15 is way too high. She talked to a neurosurgeon in Boston, but since I'm based in Washington, D.C., I'd love to bring her to see a specialist here. Just looking for a consultation to see if surgery is an option in D.C. (willing to pay, obviously...). We'll ask around through friends and private doctors, but I really want to hear about your own experiences or what your relatives went through... Where, how, what, and most importantly, WHO? Feel free to DM me if you have info.

Ugh, I'm such a mess, I don't even know which way to turn 😕

Thanks again in advance....

I wish I could help more, but honestly, I'm pretty limited right now. This is all the info I have.
A friend's daughter has been dealing with Cushing's for five years now, and she has every single symptom you mentioned except for the diabetes. From what I understand, it's an overproduction of cortisol. She lives in Memphis but gets her treatment in Mexico City. So far, she's had two surgeries for the microadenoma through the nose, and both times it came back. Right now, on the recommendation of her doctors in Mexico City, she's supposed to head to Washington, D.C. for a Buck Knife procedure. I'd suggest looking into that and talking it over with your sister.
Good luck

Wow, two replies in under five minutes? Thanks guys, you're too kind.🙏 Honestly, you guys have me getting all misty-eyed over here—sorry, I’m just being a total softie today.😢

Anyway, let's see if I can actually make sense of these pointers, especially those tips from Kimberly Sanders4. I'm definitely going to do some digging and look into this further...

Much appreciated.