Living with Cushing's syndrome

I'll keep this brief. I'm 23 and just got diagnosed with Cushing's because of a tiny pituitary tumor. I went ahead and had it surgically removed. Thank God everything went well, and my hormone levels are finally back within the normal range. I'm wondering if anyone else here has gone through something similar? What was the recovery like for you? I’ve definitely hit a rough patch physically—I feel pretty weak and have put on a decent amount of weight.

It all really comes down to how you’re feeling right now!
Was the entire pituitary gland removed, or just part of it?
What do you mean by "how"?
Cushing's is such a complex disease; it can be manageable or incredibly difficult, so everything depends on those specifics.>

Sending my best wishes for a speedy recovery.

PS: Not many people have actually dealt with Cushing's, so finding specific answers might be tough. I've been through the whole thing myself, so please ask away if there's anything I can do to help.

James Harris9... Honestly, I think it would be a massive help—not just for me, but probably for a whole bunch of other people too—if you’d sit down and write out your whole journey from the moment you first noticed things going sideways until the end of it all. Like, give us the full rundown: what the symptoms were actually like, where you had your surgery done, how the recovery process felt, and if it actually hurts... 😢
Also, can someone clear something up for me? What’s the actual distinction between Cushing and just a standard pituitary tumor?

I found this thread where people were talking quite a bit about pituitary tumors

So... here's how it started. My symptoms pretty much lined up with everything going on in my life at the time,
so I didn't catch on right away. First it was insomnia, then my
vision got blurry, I noticed stretch marks, my libido tanked, and I started gaining weight. Since all that seemed to fit with my
daily routine, I never even considered it might be an illness, let alone some kind of
tumor. It only really hit me when I started losing strength despite training hard and eating clean (I'm actually a kinesiology major, so I know my stuff). One time hanging out at a buddy's place, they caught my high blood pressure. That’s when I finally quit
training and started diving deep into medical research to figure out what the hell
was actually wrong. A friend helped me stumble upon Cushing, and man, everything clicked. After pushing my doctors and everyone around me for a while, we found high ACTH and cortisol levels, and eventually discovered a tumor that had spread into three areas (the sellar, parasellar, and cavernous sinuses). I went through with the surgery, and thankfully, it went well.
@Kimberly Sanders4/">@@Kimberly Sanders4. Haha... Yeah, it feels like you're carrying a watermelon on your shoulders instead of a head... haha... but honestly, you get used to it... the swelling goes down eventually...
Right now, my hormone levels are back within the normal range. I'm currently on hydrocortisone
and slowly tapering off just like my endocrinologist told me to. I feel okay, and my blood pressure has stabilized. On paper, I look perfectly healthy 🙂

@James Roberts5/">@@James Roberts5
I'm doing alright, but these massive stretch marks are still there (seriously, looks like I birthed a mammoth), my stomach has this extra fat like I'm prepping for hibernation, and I feel about 90 years old physically. I wanted to ask if you dealt with similar issues and how you handled them. Do you think
I'll ever get back to working out like I used to?

Man, this is tough.
Don't count on any physical activity right now.😢
I don't know what to tell you, but there's a medication called NORDITROPIN that I take because my IGF1 levels dropped significantly after my pituitary gland was removed. Just so you know, I’m currently managing four different medications: hydrocortisone, levothyroxine, testosterone, and NORDITROPIN.
Do you have osteoporosis? Has your entire pituitary been removed? There are so many details you need to share before anyone can give you useful info.
With the NORDITROPIN, I actually feel normal—if "normal" even counts anymore, since I've honestly forgotten what it feels like to be healthy and full of energy.
And don't sweat the stretch marks; plastic surgery can fix all of that.
The problem is that this condition tends to drag several other issues along with it:
Diabetes, osteoporosis, hypopituitarism, and heart issues caused by cholesterol, since NORDITROPIN is basically the only thing keeping it in check.
There’s more to deal with, but we can save that for later.

Best,
I used to get so worked up about everything, but I finally realized it doesn't matter. We just have to accept things as they are.

So, look. After my surgery, the doctor told me the tumor was massive and
they couldn't actually find the pituitary gland, but they managed to peel the tumor away successfully, which I guess means
they got it out pretty smoothly. He said the tumor either ate through or pushed the pituitary somewhere else
but they didn't see it during the procedure. However, about 20 days post-op, I went in for
blood work and hormone testing. My blood counts are totally fine, and weirdly enough, all my hormone levels look great.
My blood sugar dropped, my high blood pressure vanished completely, and even my cholesterol looks good now. My GH went up, testosterone too, and everything else is right within the normal range. Cortisol crashed from 1500 down to 60. The only outlier is prolactin, which is still a little high, and ACTH was found and dropped from 120 to 20. This still suggests there might be some part of the pituitary left somewhere. My sleep has improved, and I’m feeling stronger and just... good. Haven't done an osteoporosis test yet. My appetite is finally back to normal, so now I actually know when I'm hungry or not. The only medication I'm on is hydrocortisone, and I'm already
tapering down the dose. I have one more hormone checkup coming up soon and
an MRI scheduled for April so we can see what's actually going on in there.

That’s actually pretty incredible!
It’s wild to think that Cushing can also involve those massive tumors.
If everything is looking good right now, let's just leave it at that. No need to overanalyze the "what ifs."

Best regards,

Hey, if you don't mind, could you tell me how it all went down for you and how things are looking now? Feel free to just shoot me a DM if that's easier.

Thanks,

My brother actually underwent surgery for this when he was about 8 or 9 years old at a major hospital in Chicago; his case was even used as a clinical example in a textbook later on.
It was the same exact situation—a pituitary tumor, those spider-like capillaries across the abdomen, bruising...
At the time, he was roughly 22 or 23 years old, and he was suffering from Osteoporosis (to use my doctor's words, his bone density looked like that of an 80-year-old man). Regardless, he was carrying about 65 to 75 pounds of excess weight, had a very prominent abdomen, and a very rounded face—I believe the medical term is "moon face"—due to extremely high cortisol levels and other hormonal imbalances.
Back then, the general survival rate for coming out of surgery successfully was only around 40% to 60% by European standards.
Thank God and the doctors, everything turned out perfectly!
He lost that weight quite rapidly, probably around five or six pounds a month, and I would take profile photos of him once a month—head, abdomen, etc.—so we could closely monitor his progress.
His skin was peeling terribly all over his body, so he constantly had to apply oils, and he was taking certain pills (I can't recall the specific names right now) along with two 500mg calcium supplements daily to manage the Osteoporosis.
In the beginning, he had to go in for checkups every two or three months, then moved to every six months, and eventually every two years.
The stretch marks will fade for you, though you might always have a little bit of a belly. As far as physical fitness goes, he plays soccer twice a week and hits the gym two or three times a week, though I can't say if he's ready for anything high-intensity just yet.
After everything settled down, he finished his degree and started a career...
So, there it is... I truly hope this provides some comfort and help.

Thanks for all the input, everyone. Everything seems fine so far, so I’m just playing the waiting game until my next round of tests comes back. Hopefully, the results look good. Thanks!

The absolute worst part is when the Osteoporosis starts aggressively attacking your body and leaves you completely bedridden. We’re talking about pain that hits a solid 10 on a scale of 1 to 10. There was a stretch where I was essentially immobile, suffering through such excruciating pain that I actually blacked out a few times. Thank God my Osteoporosis eventually stabilized and didn't take me under completely, but... once you start questioning your very survival, you're dealing with severe Cushing, and you have to act immediately. I dealt with one of the most extreme cases of Cushing known to modern medicine. It got so complicated that specialists were flown in from all over the country just to hold emergency consultations to pinpoint exactly where the adenoma was located—I ended up undergoing four different surgeries for four micro adenomas.

It is a terrifying disease, but fortunately, it isn't very common.

One more thing. Cortisol is an adrenal hormone, but for it to actually be released, the pituitary gland has to send a signal to the adrenals first!
Basically, James Harris9, your pituitary gland seems to be functioning normally. But the fact that you have the strength of a 90-year-old man—that’s what matters.
Go get your levels checked: IGF1, cortisol, testosterone, TSH, and T4. If your IGF1 comes back low, then you know part of your pituitary gland has essentially burned out.
The best way to feel better and replenish that IGF1 would be Norditropin, but wait until you get your lab results back before jumping into anything.
Look, if you're still feeling exhausted, weak, sleepy, or even just completely unmotivated—if you feel like you've lost your sense of purpose, if I can put it that way—then a significant portion of your pituitary might be gone. You really need to check those hormone levels.
As for stretch marks... well, the only real solution I've found, and trust me, I have plenty of them, is plastic surgery.
Haha
As soon as I save up $10,000, I'm heading under the knife to fix myself up!

Thanks. I’m definitely going to hold off a little longer before I go in for those hormone panels and my follow-up MRI. But I did have another question for you. What was your appetite like before versus after the surgery? Also, did you deal with any skin peeling?

I wouldn't say my skin was peeling, exactly—it was more of a flaky texture on my legs and stomach.
As for my appetite, I can't give you an accurate answer since I was completely bedridden during that period.
Because of how severe my Osteoporosis was, my bones became so weak that I could barely even lie down.

Hmm. That’s a pretty wild take... Honestly, though, all this talk about Osteoporosis is starting to freak me out a little. I don't really deal with much pain, except maybe some stiffness in my joints when I first roll out of bed in the morning. But that usually goes away once I
get moving and wake up properly. What kind of tests should I actually get done to check if I'm dealing with Osteoporosis?

Even after a complete removal of the pituitary gland, hormone levels can sometimes stabilize to a point where they mimic those of a person with a fully functioning gland... if this proves to be the case, physical activity shouldn't pose an issue

The DEXA scan is a joke, man! It’s basically just a glorified home scanner—you plug it in, hit a button, and it scans. That's it.
Joint pain can be caused by a million different things; even I dealt with it after my surgery.

Hey, doc on duty!
Have you actually run into anyone like this? Does the pituitary gland really regulate how all the other glands function? Because if it isn't there, how on earth are the others supposed to work properly?

I have encountered individuals like that before. It is difficult to say precisely how it occurs—perhaps there is just a trace amount of functional pituitary tissue remaining, or maybe the gland simply begins to act autonomously... regardless, this isn't just a theoretical scenario

No, it’s not that I don't believe you. It’s just that, in my experience, almost everyone I've met who had their pituitary gland removed ended up needing lifelong medication.
But listen to this!
I actually stopped taking my meds a full seven years ago, even though my entire pituitary gland was removed!
And for what it's worth, my hormone levels were incredibly low—but they were definitely there!

It might sound a bit intense, but if any of your hormone levels fall below the reference range, you really ought to consider replacement therapy. You wouldn't want your body to suffer because one of those essential links in its functional chain is missing...