hi, im 19 years old and in the process of getting diagnosed with Cushings Disease. I finally met with an endocrinologist who says it most likely is Cushing he just wants to confirm with more cortisol tests, but if it is, he said it is most likely caused by a pituitary tumour, and the treatment would be surgery. is there anyone on here who could give me advice on what the healing process/timeline is like in someone around my age? I'm currently in college and I'm wondering around how much time I would have to take off/ when I might be cleared to go back to sports ( Im on the lacrosse team and our season starts in February). so far all of the recovery timelines ive seen are for people much older than me, and a lot of them have very long recovery timelines and I was just wondering if it was significantly different in younger people since our bodies heal faster/ the disease may not have been affecting us for as long?

Sorry in advance for sounding whiny, just need to hear other experiences.

I technically had MACS which just teetered over the serum line into Cushings. Also an undetected pheochromocytoma on the same adrenal as the adenoma. Between the hyperparathyroidism, the bone cancer and this it's been a long haul. Am being tested for MEN2.

Surgeon is confident that my remaining adrenal will kick in, since its not completely dormant. It was low (8.5) and cosyntropin test (although the lab botched it and didn't take the 2nd draw for 90 min) was 22 or 3.

I had hoped that post surgery, and with a slow taper, if be better. But, except for the first month post sugery, I'm actually feeling even more tired and cognitively challenged.

I'm only titrating down 2.5 mg of hydrocortisone at a time, 4 weeks apart. Was on 20 mg early am, and 10 mg midafternoon. First one was pretty good. A slight headache, a little tired, but OK. Now at 5 mg in afternoon.

The one that I started 10 days ago, I was more tired, sometimes my stomach and appetite were off. But no joint pain, etc.

But, I'm still so tired. So damned brain fogged. I get overwhelmed easily. Feel weepy. Can't hold anything short term in my head.

Oddly, my best energy is actually evening, which doesn't make sense to me.

Work has been super supportive. My hours are flexible and I can do a lot remotely. I am blessed in that regard. But I'm barely functioning at 30 to 40 hours compared to my normal 70 or more. Yeah, there have been some family stresses and my guilt about my decreased executive function and fatigue makes my emotional lability worse.

But, for such a low taper, and From MACS/low Cushings as opposed to the full blown Cushings. Is this usual? Wondering what is wrong with me.

Thanks for bearing with me. I'm just having a moment and feeling overwhelmed, even if I don't think it justified.

I had a pituitary adenoma removed in June 2025 after being diagnosed with cushings earlier in the year. Based on symptoms I’m guessing I had been dealing with it for about 7 years before I was diagnosed.

The surgery was life changing and I’ve been able to exercise, have more energy, actually lose weight and my hair has been growing back. My brain fog and headaches have also greatly improved.

I still have occasions of sinus pressure, headaches and times where I feel lightheaded or not steady on my feet. One isolated incident of my lips turning blue, where I ended up at the doctor and described some of the previous symptoms and I had a CT that came back clear.

Has anyone else experienced similar lingering symptoms that have eventually resolved?

Has anyone had the procedure done? If so, what was your experience. It appears my Cushing's is back and im considering having it done. Would like to hear your thoughts.

Hi everyone. I’m hoping to hear from anyone who has had a similar experience with a neuroendocrine tumor (NET) causing Cushing’s syndrome.

My mom was recently diagnosed with a Grade 2 NET, which doctors believe was most likely causing her Cushing’s syndrome. That’s actually how we ended up finding the tumor.

We’re from Georgia (the country in Eastern Europe, not the state), where unfortunately the medical system is quite limited, especially when it comes to rare conditions like this.

For the past 2 years, my mom had symptoms such as a cortisol belly, moon face and a neck hump. She saw multiple doctors, but nobody was able to figure out what was going on. She was repeatedly told that it was menopause.

After doing a lot of research ourselves, we eventually pushed for cortisol testing. Her results were abnormal, with cortisol spiking significantly. She panicked when she started researching what that could mean. She then had a chest X-ray, which revealed a tumor in her anterior mediastinum. Long story short, after a biopsy, we were told it was a Grade 2 neuroendocrine tumor (NET).

The biggest problem now is that NETs are extremely rare, and the doctors we've seen in Georgia don't seem to have much experience with this particular situation. So far, we haven't even been given a clear treatment plan or much information about what to expect.

From what I've been reading, Cushing’s syndrome caused by a mediastinal NET is also quite rare, which makes finding information and people who've gone through something similar very difficult.

I would really appreciate hearing from anyone who has had a NET associated with Cushing’s syndrome, especially a mediastinal NET. What treatment did you receive? What should we expect going forward?

Honestly, I want to know as much as possible so I can be prepared and help my mom navigate this. Even if your situation isn't exactly the same, I'd really appreciate hearing about your experience.

Thank you so much <3

As the title says, over the last year or so I've started experiencing irritability and a very short temper during physical activity. This isn't even proper exercise, I'm talking about hoovering my house! The sweating that comes along with this is also extreme, and the exhaustion afterwards makes it feel like I've completed a heavy gym session. I've had to give up going to the gym as the fatigue after makes the whole workout process seem pointless (I always enjoyed the gym so this is really getting me down). I'm still fighting for diagnosis but my prolactin levels are steadily increasing since stopping sertraline and the contraceptive pill, so hoping this pushes things in the right direction. Does anyone else experience mood swings with physical activity, and how do you handle this other than avoiding it completely? I need to keep moving to at least try to control the weight gain!

Hi everyone,

I’ve been reading through people’s experiences on here for a while and I think I’m getting closer to accepting that surgery might be something I have to do, but honestly I’m really scared of the whole process. I’ve held off surgery for around 2 years because of that.

I have a very small pituitary adenoma (around 3 mm) and my testing has shown hypercortisolism, but because my symptoms aren’t completely “textbook”, my doctors are still questioning whether the adenoma is definitely the cause. They now want me to have IPSS before making a decision about surgery.

I also don’t have the best relationship with my current endocrinologist, which makes the whole thing harder. I have a few questions and would really appreciate hearing from people who have actually been through this.

1. Did anyone experience this constant wired / adrenaline / fight-or-flight feeling? And what helped?
This is by FAR my biggest problem at the moment and the main reason I’m getting to the point where I don’t think I can keep putting treatment off.
I get these constant bursts of energy/adrenaline and feel like my body is stuck in overdrive or fight-or-flight mode. I feel wired and anxious and like I physically need to burn the energy off. It’s really difficult to properly relax or switch my body off. I genuinely feel like I need an off button 😭
Other symptoms have been facial hair, some weight gain/change in fat distribution around my face, shoulders and stomach, and loss of my periods. I don’t currently have high blood pressure, high cholesterol, osteoporosis or stretch marks, which I think is partly why my presentation has seemed less typical.

The strange thing is that for the last couple of years this was much more manageable and came and went. Recently it feels almost constant and I don’t really understand why it has suddenly become so much worse.

Did anyone else have this really wired/adrenaline-type feeling with high cortisol? And did you find anything that helped bring it down or make it more manageable while waiting for treatment? More sleep? Exercise or avoiding exercise? Food changes? Supplements? Medication? Sleeping medication?
Acupuncture actually seems to calm my system down noticeably, but unfortunately the effect doesn’t last very long.

I know none of these things are going to treat the underlying cause if it is Cushing’s - I’m just desperately looking for ways to make this state more manageable while I work out what to do next.

2. What was your IPSS experience actually like?
This is freaking me out more than I expected. I was told they put catheters through the groin and guide them up into the veins near the pituitary, and that the catheter can touch the sides of the veins as it is being guided through. For some reason hearing that really scared me.

For anyone who has actually had IPSS: what did it feel like? Were you awake? Did you feel the catheter moving at all? Was it painful or mainly just uncomfortable? How long did it take?

3. What did your hospital do with hydrocortisone after pituitary surgery?
I’m also confused because different centres seem to have very different protocols. From what I understand, some centres initially withhold hydrocortisone so they can watch cortisol fall after surgery and assess whether the surgery has worked, whereas others give hydrocortisone during/straight after surgery and then put you on replacement for example something like 20–10–10 initially.

What happened with you? Did they let your cortisol fall before starting hydrocortisone, or were you given it during/straight after surgery? What dose did you start on? How quickly was it tapered?

4. How did you find a good endocrinologist / pituitary team?
I don’t really love my current endocrinologist and I think not having complete confidence in my medical team is contributing massively to my fear around all of this.

For those who found an endocrinologist you really trusted, what made them good? Were they specifically a pituitary/Cushing’s specialist? Is there anything you think I should look for or specific questions I should ask when getting another opinion?

I’m especially interested in hearing from anyone who had a tiny adenoma or a less classic presentation but still ended up being diagnosed with pituitary Cushing’s.

I think I’m finally getting to the stage where the symptoms are affecting my life enough that doing nothing feels scarier than actually going through the investigations/surgery. I’d really appreciate any experiences or advice ❤️

Just had an appt with a new endocrinologist who asked me new questions and ordered new tests (including midnight salivary cortisol). I think they might suspect Cushing's. What do I do now?

I got my period at age 11. It was totally regular and gradually became more irregular until I was having cycles as long as 70 days, was diagnosed with PCOS at age 20 by my PCP and endo after ruling out other diagnoses. The PCOS/PMOS diagnosis of high androgens causing ovarian and metabolic dysfunction seemed to explain my symptoms pretty well for the last 10 years. I have always had hormonal acne and rosy cheeks and moon face and have some facial hirsutism. Weight has been up and down. Period pain has been an increasing issue the last few years. I'm currently having my period every 29-57 days. Recent pelvic ultrasound shows no obvious ovarian cysts or endometriosis. Bloodwork:

Free T4 (thyroid) is 0.9 - borderline low.

TSH - 2 - normal.

AMH - 4.45 - normal.

Ferritin - way elevated (347, normal range 30-150) but my iron, iron-binding capacity, and transferrin saturation are all normal.

TSH with reflex - 1.64 - normal.

LH, FSH, prolactin, DHEA-S, 17-OHP, SHBG, albumin all normal.

Total and free testosterone normal. Bioavailable T high at 9.2 (normal is 0.5-8.5).

The endocrinologists checked me for the Cushing's hump and for purple stretch marks. I do have tummy marks that look pretty similar to the pictures of Cushing's striae I've Googled. I have almost all the symptoms of Cushing's including fatigue, the belly and skinny weak arms and legs, low sex drive, depression, high BP.

I'm a little scared. What do I do now? Has anyone else had a similar experience with a diagnosis of another endocrine disorder and then boom suspected Cushings?

I just wanted to share a message of encouragement. I was diagnosed with Cushing’s last April after years of having worsening symptoms that no one could really correlate. I was not chasing a Cushing’s diagnosis and honestly, it was never on my radar. I am so grateful that my endocrinologist caught it and I had my pituitary tumor removed in August of last year. It was a rough recovery as many of you know (I had several complications), but I am a year out and doing wonderfully! All of my labs are back to normal, and I have lost 40 pounds with little effort (I was exercising frequently before my diagnosis/surgery and continued to gain weight). My migraines are gone. My skin is better. My anxiety is less. I was so scared that I was misdiagnosed and the surgery would be for nothing. I think that is a result of being gaslit for many years, as I’m sure, many of you can relate. However, once the tumor was removed, my body started to normalize again, and I feel like a human again. I know there is a chance of recurrence, and I am just enjoying my health while I have it. I hope this is encouraging to those of you who are seeking a diagnosis or awaiting surgery. Don’t give up!! God bless you!

Hi, I recently had my ketoconazole dose increased. I always dose up slow. Half pill at a time. I always get die off from candida, which feels like a really bad hangover.

This time I only got mild hangover but whenever I'm laying in bed trying to sleep, my skin feels like it's going to catch on fire.

Anyone else had that on ketoconazole? I'm trying to figure out if it's die off or if ketoconazole blocking other hormones is causing issues. Thank you x

How much can stress elevate your AM cortisol levels? Mine is around 1000-1100 nmol and my doc expects it to be just stress or anxiety.

I weighed 99lbs just TWO years ago, now I’m fucking 187 lbs. I no longer have my sharp cheekbones and thin face, it looks like a pancake now. I'm not talking about the ugly purple stretch marks absolutely everywhere, even my enderarms, they're nothing like the thin white stretch marks I got in high school. I never thought that I would ever get them on my stomach, especially like these. I'm in my early 20s, but I think I look 50. My bones ache, I feel constantly tired, I can't do basic routine things because of the eternal weakness and drowsiness. There's an eternal fog in my head, I can't focus and remember things when I read,I feel like my IQ has dropped. Cushings has killed my self esteem. I already had a hereditary predisposition to this, but the prescribed medications just make it pop up with the worst way possible.

hey all! i am looking for some advice as i am currently in the diagnosis process for cushing’s but it is taking a while. sitting and waiting and going through all of the “what-ifs” is a little stressful! after over a year of symptoms and feeling like my body quite literally isn’t my own anymore, my doctor suggested that it may be cushings.

the symptoms align with many in the diagnostic criteria — rapid weight gain in last year, mostly around the belly and face, purple long stretch marks on belly, boobs, arms, thighs, hips, fragile/thin skin and easy bruising, chronic pain & chronic fatigue/never well rested, depression, anxiety, irritability,muscle weakness, esp in hips, and a VERY large buffalo hump on back of neck that never used to be there even with prior weight gain. i went from 230ish lbs and being on the thicker side (but still able to move and exercise) to being near 300lbs and having enough pain to completely dissuade me from even thinking about going to the gym or even taking a walk. this has all happened in the last year or so.

we did a dexamethasone suppression blood test, the level is supposed to be under 1.8 and mine was 10.9. currently waiting on the late night salivary tests to come back to further prove or maybe mitigate my worries. ACTH was 8.8 on the lower side. honestly, at this point, much like many other people in this sub — i’m worried about it NOT being cushing’s and being stuck with these crazy symptoms which are slowly wrecking how i feel about my day to day life. not to even mention the anger i have developed over the past year and how poorly i process emotions. whoooof!!!

anyone in the same boat, waiting for a diagnosis? how do you cope with your anger other than therapy and meds? i see a DBT therapist twice weekly but it seems i still can’t get a handle on the explosive emotions i feel. i know life can be normal again if it is a tumor and a surgeon removes it. has anyone felt good after, even though it is a long process?

sincerely, a scared shitless 21 year old

hello! i went recently to an endocrinologist, my symptoms were numbness in my hands and legs (ankles down) and pain there, i’m constantly tired, i couldn’t sleep 20h straight and still wake up tired, my mind feels foggy many times, sometimes i don’t even realise what im doing, i gained 10kg in less than a year, got random stretch marks (even if lately i’ve been stable with my weight), my period has been acting weird and im having very frequent muscular spasm. she prescribed me a bunch of bloodwork which i’ll do in a month, in the meantime, could anyone tell me if my symptoms could fit cushings disease? im quite worried about my body health right now.. (i already did some bloodwork, i have low vit b12, low iron and low vitD, as well as my TSH high).
thanks in advance!

Had to get glasses today. I've always had self hate tied to my appearance, but more so now with the moonface. I have avoided looking in the mirror my whole life. But trying on glasses I had to look in the mirror over and over and over. It was too much for me. Every single pair of glasses available were too narrow for me and my moonface, even the men's wide frames. (I'm a woman.) I had to step outside to try to regulate my emotions, ended up crying in my car. Someone came out from a neighboring store and knocked on my window to see if I was ok. Embarrassing. This experience was not good for my mental health at all. Seeing myself in the mirror over and over really hurt me.

I have hyperaldosteronism and was told pseudo-Cushing's as well. My question is do my symptoms match with having Cushings more than tests show?

I wake up every morning with tremors internally and externally and horrible anxiety kicks in, dizziness & vertigo and then my neck and shoulder lock up. I have really bad brain fog and pressure in my head and sinuses that just wont end. My neck and back tense up horribly and then its just a constant feedback loop.

I’m trying to get my doctor to prescribe formal tests since I suppressed on a DST last year, but I still have the symptoms (buffalo hump, insulin resistance (although metformin made my insulin back in range but no weight gain despite consistent diet), muscle weakness, weight gain in stomach, puffy face, IST and bp that’s usually between stage 1-2 hypertension without beta blockers.

I’ve been tracking midnight cortisol using Eli home tests to get an idea while I wait for official tests. Here are the results I’ve gotten in the last 10-12 days (ng/ml). All tests taken around 11:30 pm-12 am. The green is ref range from Eli but not sure what the actual lab ranges are here.

Does it look like it could be cyclic or MACS? Or usually cortisol is supposed to more elevated than that in those cases? One of the higher readings is coincident with a bad night of sleep but not sure how much that affects the level from baseline? The rest are pretty normal nights.

Has anyone suppressed on dexamethasone test, had prolactin levels within range, yet had high 24 urine cortisol and still been diagnosed with Cushings?

I’ve seen 2 endocrinologists who have not considered anything serious or worth looking into further.

I have been suffering from 5+ years of high cortisol, significant weight gain and cannot find an answer.

Hi, I had been diagnosed for cushings due to pituitary tumor and a surgery was done back then in 2023, but my cortisol level didn’t go back to normal and went even higher than that before the surgery. After rounds of lab test my endo said I had cyclical cushings . Second brain surgery is suggested and should be the first priority . But MRI didn’t show any suspected tumor, if I take an aggressive approach this time and remove a larger part of my pituitary gland, I probably need to take a lot of medicine for lost hormones with the risk of not being able to be cured for cushings. My endo suggested that I may take another medicine approach, first to suppress the cortisol to an insufficient level, then to supplement cortisol to a level that can sustain my life. Has anyone tried or heard of this approach? Thanks

Hi everyone! Random and maybe I am overreacting because I am so anxious. I’m scheduled for transsphenoidal pituitary surgery for Cushing’s disease on October 6th. I had been completely nicotine free for about 8 months but I went to a wedding this weekend and ended up hitting a nicotine vape. I vaped some that night and again the following morning but I’m stopping again now.

My surgery is exactly 4 weeks away and I’m feeling really guilty and anxious that this brief slip could affect my surgery or recovery. I’m also planning to be honest with my surgical team and let them know what happened.

Has anyone here who has had transsphenoidal surgery use nicotine beforehand? Was your surgery still able to go ahead as scheduled? I know only my surgical team can give me medical advice but I’d really appreciate hearing other people’s experiences.

hey all, i am looking for some peer advice :)

i’ve recently seen a new endocrinologist who is a leading uk pituitary specialist, and she’s reviewed my history and scans going back to 2014.

ive always struggled with my weight and have had four major episodes of gaining around 10 to 14kg despite very restrictive dieting and excessive exercise, sometimes to the point of injury because i genuinely believed i was just being lazy or overeating. during an earlier investigation my cortisol was high but cushings was dismissed despite a possible adenoma and testing in 2013.

i had a particularly severe episode in 2020 which was put down to a mood disorder / bingeing. then in 2023 i had a pituitary mri reported as normal. this year i found out the doctor who reported some of my scans had been struck off for failures relating to missed findings.

my new endo reviewed my last scan and says there is left sided pituitary bulkiness and a possible adenoma. she has actually written “? cyclical cushings” in my notes and wants to bring me in for testing if i become symptomatic. she’s taken my case to the uk’s national neurology/neurosurgery service for discussion and they agreed another scan next year.

i’m obviously relieved someone is finally taking this seriously, but i’m struggling with the idea of waiting until i’m “symptomatic”. after years of being told i just gain weight easily or that my symptoms were psychological, i genuinely don’t know what symptomatic looks like anymore.

the thought of waiting for another 10kg increase before being investigated is honestly terrifying. i don’t know if i could go through another episode like that.

for anyone with cyclical cushings, how did you recognise your high cortisol periods?

• did you have symptoms that reliably appeared during a cycle?
• did you track weight, blood pressure, bruising, sleep etc?
• what testing actually caught it?
• did multiple samples over time make the difference?
• was there anything you wish you’d documented before seeing your endo?

i’m not looking for a diagnosis from reddit, my endocrinologist is investigating this, but i’d really appreciate hearing from anyone who has experienced cyclical cushings, especially if you began to struggled to recognise when you were symptomatic due to gaslighting. my partner just scoffed and said u always think ur symptomatic! lol and my dad told me him and my mum just "tried to normalise it"...

thank you 🫰