Living with Cushing's syndrome

Endocrinologists are split on medication protocols, especially when it comes to hypopituitarism!!!!!
Most endocrinologists worldwide believe it's better for patients to take their meds, even if they feel it might shorten their lifespan. A small minority argues against prescribing them except in critical emergencies, suggesting this approach leads to a longer—albeit lower quality—life.
But let’s be honest: without Genotropin, our quality of life is already compromised. If I don't take the essential medication that actually brings me back to life, gives me independence, keeps me moving, and allows me to feel... well, "normal" (if such a thing exists), then what am I doing? This is the core of the issue. I have seen life both with and without this treatment. I refuse to simply survive a longer life if I'm living it without Genotropin!

James Harris9 said:Look... after the surgery, the doctor told me the tumor was massive and
they couldn't actually find the pituitary gland, but they managed to peel it away successfully, which I guess means
they got it out without much trouble. He said the tumor basically ate or pushed the pituitary somewhere else
but they didn't see it anywhere. Anyway, about 20 days after the procedure, I went in for
blood work and hormone levels. Blood looks totally fine, and honestly, all my hormones are surprisingly good.
My blood sugar dropped, my hypertension is completely gone, and even my lipid panel shows great results. GH went up, testosterone too, and everything else is right within the normal range. Cortisol plummeted from 1500 down to 60. Only prolactin is still a little elevated, and ACTH was found and dropped from 120 to 20. This probably means there's still some pituitary tissue left somewhere. My sleep is better, feeling stronger, just okay... Haven't done the osteoporosis test yet. My hunger cues are back, so at least now I know when I'm actually hungry. The only thing I'm taking is hydrocortisone, and I'm already on
a tapering dose. I have another hormone check coming up soon and
an MRI of the pituitary in April to see what's really going on in there...

How long has it been since you started lowering the hydrocortisone, and what dose are you on now?

Just got my MRI results back, and it looks like they found a hypophyseal adenoma that seems to be behaving itself—size looks totally normal.
I’ve been tapering off the Hydrocortisone gradually, dropping 5mg every two weeks. Right now, I’m on a 5-5-5 split (taking doses at 8, 12, and 15). I also did a daily cortisol profile the other day, so here we go
just waiting to see if I can finally kick this stuff for good, fingers crossed 🙂

I’m hoping someone might be able to shed some light on this.
Everything in my lab work looks perfectly normal—except for my urinary free cortisol, which is through the roof at around 1600. I did undergo the dexamethasone suppression test, and the result was <22. A whole battery of other tests has been run, including ACTH levels, which all seem fine, though I haven't had an MRI yet because no one has actually put in the referral. My doctors keep circling back to a potential case of Cushing, constantly pointing to those sky-high cortisol numbers in my urine while my bloodwork remains unremarkable. To make matters more complicated, I'm dealing with high blood pressure, irregular cycles, and noticeable thickening around my neck and midsection... What exactly is the "smoking gun" they need to find to be absolutely certain it's Cushing? It’s such a rare diagnosis, and honestly, the uncertainty is terrifying me...

Thanks, and best wishes.

silentdriver23 said:I am looking for some guidance here.
Everything looks fine except for my urinary free cortisol—which is incredibly high, around 1600. I had a dexamethasone suppression test and it was
Thanks and best,

A negative dexamethasone suppression test, combined with normal ACTH levels, effectively rules out a diagnosis of Cushing syndrome.

Sandra Vaughn50 said:A negative dexamethasone suppression test, especially when paired with normal ACTH levels, effectively rules out Cushing syndrome.

Thanks for the input... honestly, I can finally breathe a little easier now... THANK YOU.

Hello, everyone. I’ve just been diagnosed with Cushing disease. From what I’ve gathered, this is an incredibly rare condition. My pituitary adenoma is quite large—too large for gamma knife treatment, so surgery is my only option. I’m 36 years old and already have one child. I would love to have another, even though this tumor developed during my previous pregnancy. To be specific, I had to rely on progesterone and Utrogestan to maintain that pregnancy. What are my actual chances of conceiving again after the surgery without developing another pituitary tumor? Or more fundamentally, is there even a realistic chance of me getting pregnant at all? Any information regarding this disease, advice, or personal experiences would be more than welcome. Thank you in advance.

Lawrence Scott79 said:I have a large pituitary adenoma—so large, in fact, that it can't be treated with Gamma Knife; surgery is required instead. I am 36 years old and already have one child. I would love to have another, even though this tumor developed during my first pregnancy. To put it simply, I had to rely on progesterone and Utrogestan to sustain the pregnancy. What are my actual chances of conceiving again after the operation without developing another tumor? Or more fundamentally, is there any chance at all that I can get pregnant?

Of course there is a chance for pregnancy. If you find yourself—due to the pressure from the tumor or during the postoperative period—in a state of partial hypopituitarism (meaning your FSH/LH hormone secretion is deficient), then it is possible to use hormone analogs—essentially synthetic versions—to stimulate ovulation.