r/Cushings

Hi! Coming on here again because I’m so damn frustrated. I had high cortisol results, took a dex test, suppressed to a 2.9 had a 24 hr urine and saliva test, results came back normal. Got off birth control for 8 weeks and retook the dex test, came back at a 2.2

Any recommendations on if I should keep digging or if this could be MACS? Or does it sound more like PCOS?

I’m looking for people who have been diagnosed with cyclical cushings who had elevated or mildly elevated cortisol to share there stories or how they were diagnosed

Hi everyone,

I would really appreciate some advice or hearing from people who may have experienced something similar.

I originally had no symptoms at all, but my blood work was extremely indicative of Cushing’s disease. A pituitary adenoma was found and surgically removed.

However, after surgery, my blood values initially did not change at all. Then, around 4 months later, things suddenly shifted. My hormone levels started dropping significantly, and my cortisol eventually fell into the normal range very quickly. My doctors suspected possible glucocorticoid withdrawal syndrome / adrenal insufficiency-like symptoms, and I was started on hydrocortisone (50 mg/day).

Since then, my symptoms have been fluctuating a lot and I honestly feel very confused about whether I am under-replaced, over-replaced, or dealing with something more complex related to pituitary recovery.

Current symptoms include:
- Severe insomnia
- Resting heart rate often over 100
- Sweating / hot and cold flashes
- Dizziness and circulatory problems
- Diarrhea
- Severe fatigue and weakness
- Muscle pain (especially back and legs)
- Tingling / numbness in hands and feet
- Nausea
- Anxiety, inner restlessness and depressive feelings
- Episodes of feeling freezing cold and unable to get out of bed

At higher hydrocortisone doses I felt extremely overstimulated (racing heart, sweating, hunger, insomnia), but when reducing the dose I sometimes crash into severe exhaustion, coldness and weakness again.

Has anyone experienced something similar after pituitary surgery or during glucocorticoid withdrawal/recovery? How long did it take until things stabilized for you? And did anyone have similar fluctuations between apparent over- and underreplacement symptoms? Or has anyone had such a delayed drop of blood values after the surgery ? I don’t really know what to do anymore and am feeling increasingly desperate….

Any advice or experiences would really mean a lot right now

I just had a dexamethasone suppression test and my cortisol levels came back saying it's under 28 nmol/L. Is this good or is this too low?

I’ve taken all the tests:

Dex suppression test came back suppressed

24 urine came back in range

I took two separate sets of midnight cortisol (3 nights and then 2 nights about 2 weeks apart). Both out of range but significantly more out range closer to midnight.

24 hr urine was taken around the same time so cyclical can be counted out I guess.

What does it mean when midnight saliva consistently comes back high but nothing else does? Symptoms have been going on for years and same thing happened 6 years ago - midnight saliva came back positive but dex suppression didn’t so I got dismissed.

I’m feeling hopeless.

I had my surgery to remove my pituitary tumor over a month ago and my symptoms are still present, physically worse than before.

Unlike what was expected from the doctors, my levels didn’t completely plummet and stayed within a normal range. My labs 2 weeks post op showed that my levels were higher than when I left the hospital, yet still in normal range.

1 month Post-Op MRI comes back completely clean, yet I have still yet to lose a pound, my joints hurt more than before, and all the textbook symptoms are still there.

I feel so useless in this disease. I’m tired of the “diet & exercise!” When I am super active and eat very well. The tumor was supposed to be the problem, and I was probably told that having issues with both the pituitary and adrenals are highly unlikely. I feel like I’m doomed to live like this forever.

I haven't received a Cushings diagnosis yet, but they'll be testing me soon. My symptoms are as follows:

- Difficult to manage weight (despite diet and sport)

- Flushing in the face and forearms

- Rounded/Oval face

- Tired almost all the time

- Easy bruising

- Mood disorders already being treated

But I just wanted to know if anyone else gets red-hot warmth on their face, ears, or arms.

I remember I was like 10 years old and after always being one of the skinniest and tallest kids in my school I was suddenly on the shorter side and really overweight. I remember my friends parents and baseball teammates would all tell me “how did you get so big in a couple of months?”. My mom didn’t mess around though and immediately knew something was wrong and this started a 18 month process of me going to multiple different doctors before accidentally going to an endocrinologist. As soon as I stepped in his office he told my mom I think I know what he has and tbh I forget what they did could’ve been an mri or something else but they did a scan on my brain and found the tumor on my pituitary. By this point I had a huge buffalo hump gigantic legs and the roundest face ever. I kept playing sports anyway though but ended up tearing up my meniscus on both knees, so there’s two more surgeries needed. But anyway they did the pituitary removal surgery and then had to do it again to get the rest of it out. I was then put on hydrocortisone and levothyroxine and I still take both 14 years later, but my endocrinologist really dropped the ball in my opinion by not giving me trt, hcg and hgh which I later on asked to be put on after doing research and it changed my life, just the energy, the focus, the change in my appearance and gains. But sorry for this long all over the place story I just wanted to share. I also want to say to make sure to take the hydrocortisone I was really stubborn and stupid in high school and never took it and my liver enlarged and I almost died. Have a good day!

Sorry to add to the numerous ‘help me with my results,’ but the two endocrinologists that I have seen have both been very dismissive and I am considering a third opinion. I would appreciate any of your thoughts. Thanks!

Later morning cortisol (9:30): 21.1 mcg/dL
Earlier morning cortisol (6:00): 32.0 mcg/dL

Salivary Cortisol: (normal) 0.015 and 0.049 mcg/dL

24H Urine: (normal)
Free Cortisol/24HR: 29.1 mcg/24 h
Free Cortisol/cr: 22.6 mcg/g creat
Creatinine: 1.29 g/24 h

MRI of brain with and without contrast
(Performed for vision concerns and pituitary pathology, Chat GPT Overview):

1. No acute brain abnormality
2. No pituitary tumor or pressure on the optic nerves
3. Mild benign sinus cysts

Dex suppression:
Dex, serum: 149 (no units given, seems low, based on what I have read for this test)
ACTH: 4.6 pg/mL(no baseline)
Cortisol: 1.2 mcg/mL (suppressed)

Symptoms:
Weight Gain
Abdominal Fat Distribution
Skin Changes: bruise easily, slow healing
Stretch Marks: Wide and purple on the lower abdomen, thighs, breasts, and arms
Acne and skin infections
Extreme Fatigue
Irregular Menstrual Cycles
Mood Changes
Cognitive Problems
Unsure on the moon face and hump: My face is rounder than it used to be, but I also gained weight. I think I have a small hump, but the endo didn’t think so.

ETA that most of my symptoms are cyclic based on an extensive journal I have been keeping for over a year.

Thanks again for any insight that will help me with my consideration of a third opinion.

Just got the call from my doctor. After 15 years, my Cushing’s disease is back. I didn’t have any point to this post other than to share with people who understand.

So my sister thinks I have Cushings. She is not a doctor but thinks that I have the look.
I am very overweight and am “apple shaped”. I have PCOS. I have always carried my weight in my upper body and trunk. I do have stretch marks but have had those since my early 20s. I am 34.
They are not purple more like a very soft pink if you can see them at all.
Some of my symptoms could be explained via where my fat is and PCOS.
When should I see a doctor?

I feel like I am literally grieving my body and health and how much it has changed. I am 27 and have struggled with chronic pain, issues and hormonal imbalance for 7 years. Recently I was diagnosed with Cushings and have had a Prolactinoma for 8 months or longer.

I. Am. So. Exhausted. I have gained 70 pounds, I have extremely painful periods, I am in so much pain daily from cysts or other things, I’m tired 24/7, I’ve lost bone and muscle mass.

The other thing that’s been really killing me is everyone always has an opinion on the healthiest thing to do to help my Cushings or other things. I appreciate where it comes from but when I hear 20 different ways to make healthy, it can be so overwhelming.

My next neuro endocrinology appointment isn’t until mid July and I’m just really struggling. How do you guys do it?

Hi there,

I'm wondering if it's possible to have an autoimmune disease and pseudo Cushings. Google says it's possible but I'm looking to see if anybody has experience with it.

The theory I'm working with is cortisol is present to lower the inflammation caused by the autoimmune disease causing a cushingoid appearance but none of the definitive tests. Possibly leading to flares when low cortisol due to whatever reason.

Thanks

For those u you who are cyclical- I’m wondering what symptoms u notice when your in a high (not just lab work). I feel like I can just tell now, my brain gets foggy, I have more energy sometimes and especially at night, feel a little restless, exercise intolerance, etc. I’m wondering what other people experience? Anything odd u notice?

I wrote a previous post about how the doctor who requested my test is already dismissive of everything I conveyed to her. At this point I have no trust in her, but will take the test she’s already ordered before moving on.

I see she wrote to take the pill for the Dex test at 10:00 pm. I’ve been reading so much about this and most articles say 11:00 pm with 8 am draw, but this could depend on lab.

I also looked up the lab where I am going (Quest) and they say 11:00 pm.

What time was successful for your results?

I hate to feel this way but I already feel she’s setting me up for failure. 😞

I am over 2 years post op of my adrenal gland being removed and I am still not my normal self. I still have a lot of fatigue and not a lot of stamina. However, my endocrinologist says my blood work looks great. Has anyone else experienced this?

Hi everyone,

I was originally worked up for Cushing’s because of my symptoms and some hormone results, but my endocrinologist has now ruled it out after testing (including a dexamethasone suppression test where my cortisol dropped to 0.7). I fit some of a cushings-like appearance such as a large, bloated stomach (weight sits here), face bloating, and some stretch marks across my legs. I do not have a neck hump. Based on my DST test, my doctor believes Cushings is now off the table.

I still feel pretty confused though because I’ve been dealing with a lot over the past year.

Some of my labs/symptoms:

ACTH and cortisol were described as “inappropriately normal” at one point (ACTH 54, cortisol ~25)
prolactin was high at first (87) but dropped to 45 within ~1.5 months, so my doctor doesn’t think it’s a prolactinoma
DHEA-S has been elevated (480 → 520)
17-OH progesterone was slightly high (157)
testosterone, thyroid, LH/FSH, AMH, SHBG, A1C, IGF-1 all normal
2 small pituitary microadenomas (4mm & 6mm), but they’re being considered incidental

My symptoms often come in waves, some weeks good some weeks bad.

My symptoms have been:
rapid weight gain (~20 lbs in a month)
very long/irregular cycles (40-80 days)
acne and new facial/body hair
fatigue
anxiety, especially in the mornings
mood swings
low and high blood sugar
fluid retention + salt cravings
extreme bloating

My doctor also said my pattern doesn’t really clearly fit classic PCOS either, which is why I’m kind of stuck in the middle trying to understand what’s going on.

I’m still waiting on a midnight salivary cortisol test,
and I also have an ACTH stimulation test coming up.

I guess I’m just wondering if anyone else started down the Cushing’s path but got ruled out and ended up finding another explanation for similar symptoms?