r/Cushings

Anybody here have steroid caused cushings syndrome?

How did you find trying to lose weight whilst still on steroids?

I've been reading posts in this community for the past few weeks, ever since I started wondering whether I might have Cushing's myself. Although "worrying" might actually be the wrong word. In a strange way, having an explanation for all the physical changes I've gone through would almost feel like a relief.

A little background about me:

At the beginning of 2025, I had a cryptogenic stroke, meaning doctors were never able to determine what caused it. Thankfully, the only permanent damage was the loss of part of my visual field.

Adjusting to that new reality took quite some time, and at the same time I was determined not to fall behind in law school. Because of everything that was going on, I think it took me longer than it otherwise would have to really notice some of the other changes happening to my body. Looking back, I honestly can't say exactly when some of them started.

But one day in March this year, I looked in the mirror and barely recognized myself.

I had gained around 15 kg (about 33 lbs), mostly around my stomach and chest. My lower abdomen was covered in thick red stretch marks, and I had developed this soft mound of fat at the back of my neck. My face looked extremely swollen, especially in photos, and no matter what skincare routine I tried, I couldn't get rid of the acne. I was incredibly ashamed of how I looked.

I blamed everything on bad genetics, not exercising enough, and the stress of months of studying. Even after I started paying much more attention to my diet, I barely lost any weight. Eventually, I tried not to let it get to me and simply accepted — or maybe ignored — the changes for the time being.

A few months ago, I went to my GP for a routine appointment. During the appointment, she suddenly asked me whether I was taking any medication containing corticosteroids. I was confused and told her no.

She explained that she had noticed that my face looked significantly more swollen than the last time she'd seen me and that it had developed an almost "moon face" appearance. She had also noticed how rapidly I had gained weight.

I just sat there listening, feeling increasingly ashamed of my own body. At that point, I fully expected a lecture about being overweight and how, especially given my history with a stroke, I really needed to do something about it.

Instead, she referred me to an endocrinologist. She basically told me that I was already a bit of an unusual medical case and that, because of my history, it made sense to be more cautious and investigate things properly. I left with the referral without really understanding why I needed to see a specialist.

At the time, I didn't realize that my doctor had been thinking about Cushing's. It was actually a friend who later mentioned it to me, which led me to read about the condition.

And suddenly, all these seemingly unrelated little symptoms seemed like they could have one common explanation.

A few weeks ago, I finally saw the endocrinologist. After examining me and looking at the symptoms I showed him, he described them as almost "textbook" signs and ordered an overnight dexamethasone suppression test. I still don't have the results.

So that's the background.

The actual reason I'm writing this, though, is because I feel like an impostor.

In some ways, Cushing's would almost feel like the best possible outcome at this point — not because I want to be sick, obviously, but because it would finally give me an explanation. And because, unlike so many other possibilities, there is at least a clear path toward treatment.

Maybe I would also stop blaming myself quite so much for what has happened to my body.

But the uncertainty right now is exhausting.

My family regularly tells me that I should just go on a diet and exercise more. That I should "do something" so I can look better again. And because Cushing's is such a rare condition, I keep questioning myself and wondering whether I'm somehow imagining connections that aren't really there. Part of me feels almost guilty for hoping the tests find something.

Has anyone here experienced something similar while waiting for a diagnosis?

I'm scared that it won't turn out to be Cushing's and that I'll end up right back where I started — questioning myself and wondering whether all of this really is somehow my own fault. At the same time, I keep thinking about cyclical Cushing's and how incredibly difficult it can be to detect.

I know what it's like to search endlessly for answers to symptoms or medical problems and never actually find them. I already went through that after having a stroke at just 26, when despite all the testing, no one was ever able to tell me why it happened.

I’m typing this from my hospital bed right now as I’m awaiting the results from this blood test to get confirmed by the specialists. Some background. I was diagnosed with Crohn’s in 2021. I was having bowel issues and constant vomiting. I’ve been in remission with my Crohn’s for a while now 2025-2026. Over the years I have had some hospitalizations because of nausea and vomiting. I recently have been admitted for the same thing. I was told it was my marijuana smoking causing it, and I must admit it’s been hard for me to quit smoking weed. I don’t drink or do any other drugs or cigarettes but weed was always my bad habit of choice, I can admit that. But now after taking a blood test they’ve been worried about my cortisol levels and my weight gain. Since I’ve moved to this small town I have become inactive unlike I used to. The doctor and my GI are suspecting cushings. But they want the doctor that specializes in that to look at my blood first before accurately making that decision. I’m sitting here in terror reading these 1-5 year life expectancies without treatment. I already have it hard enough with my Crohn’s. Im only 29 and I’m scared to think this is gonna be debilitating and I’ve never really heard of this disease before and it’s supposedly “rare”. I just need some advice. Because I’m in tears right now just waiting for the doctor to come into my room.

I had my pit surgery 5 days ago at a high volume pituitary center. I had an excellent experience and everything that could have gone right, did. I needed no fat graft, no lumbar drain, etc. Both tumors were excised with clear margins, and I didn’t develop any DI or other issues while in the hospital.

I felt like I learned so many good things from this group but wish I would have known a few things before doing it:

1. The post op pain isn’t a joke - it was quite painful for me and I’ve had numerous surgeries. It felt like I got hit in the face by a truck and the pain lasted strong for the first 3 days, radiating out from my nose into a headache that took over my whole head. I didn’t need more than one day of oxy post my last c section and I’m still taking oxy at bedtime for the headache pain now.

2. BLOOD CLOTS! I didn’t think I’d seen these mentioned here - apparently Cushing patients are at high risk for DVTs and other clots. I have a coagulation disorder where I don’t clot and still had to have 2X daily heparin injections while inpatient, do a venous ultrasound before discharge, and still have to be on lovonox for 30 days. Was not prepared for that at all.

3. Hydrocortisone protocol - make sure you understand your centers protocol before you go in. Mine had a set “schedule” that as long as you decreased significantly but didn’t zero out, you end up on a 30 day protocol that leads to a taper. I thought it would be more individualized to my specific situation.

4. The congestion is seriously under emphasized on how bad it sucks. I HATE congestion and I didn’t think about how hard this would be for me. It’s the most miserable part by far for me.

5. How much water you’ll want to drink bc of how dry your mouth is from so much mouth breathing. And thay they’ll check your urine basically every time you pee and then they’ll be in there forever.

6. Nausea was bad for me (still is) and so is the constipation and you have to be so careful obv about these two things and still haven’t figured it out 5 days out.

I’m hoping to keep figuring things out and this will all be worth it. Any positive feedback would be so appreciated at this time!

Okay. I got my results back from all my testing.

I have a lit of signs of cushings (sudden onset of diabetes and high blood pressure a few years back when it had been perfect prior. Always been fat, but around the same time I gained about 80lbs that will not come off no matter what I do. The best that happens is I yo-yo 10-ish lbs every month. Moon face, buffalo hump, excess body hair, anxiety through the roof to the point of mild agorophobia. All my weight is in my torso and my arms and legs look like theyre for a smaller person). I attributed most everything to other diagnosis i have. PCOS for the hair and weight somewhat, the diabetes and the fact I have RA that has worsened so I cant exercise the same to the yo-yo of weight (even with a significant diet change). Anxiety/agorophobia to PTSD (I've always had anxiety, the progression to agorophobia though, once I tried putting things together with my doctors when Cushings came on the table... it set in around a similar time as the diabetes and hypertension). Tremors that i thought were tics from my absence seizures and Tourette's I was diagnosed with when I was 10. (I'm 43 now, never was medicated for it, and i dont know if new tics suddenly come on like that all these years later and my doctor doesn't know). Stuff like that. I had excuses and never thought to put things together, or as diseases as possible symptoms.

My rheumatologist was doing a MRI of my back to rule out AS and see where my back pain was coming from (osteoarthritis vs progression of RA vs AS type of deal) and they caught the top of an adrenal gland in the films. Rheumatologist said she had no idea, it just looked "weird and too big" and she wanted to refer me to an endochronologist. (Whose first appt was 7 months out). In that 7 months wait I was hospitalized for pain and they suspected kidney stones and did a CT. They caught the adrenal gland of course (and no kidney stone. Large fibroid on my uterus causing an intermittent ovarian torsion so I got an OBGYN as my doctor during my hospital stay. Will be having a full hystorectomy in October if the torsion doesnt come back, emergency if it does). The OBGYN noticed my adrenal gland and said there was what looked like an adenoma or tumor and wanted to refer me to an endo, and I told her i was waiting for an appt since it had been caught by my rheumatologist.

Endo appt comes. She points out all the things pointing to Cushings and we do testing. I didnt know I needed to tell her I do NOT have a circadian rhythm at all. I just sleep when I sleep. Sometimes its nights, sometimes all day, sometimes afternoon. Stsy up 48 hours because i cant fall asleep even with nothing on my mind. 3 hours sleep, 18 hours sleep. Im all over the place.

The dexamethasone testing read abnormal, even for patients with no circadian rhythm (after i took the test i was trying to figure out why everything was timed as such and realized she should know my odd sleep). The 24 hour urine was normal though, high side of normal. The saliva tests one was high side of normal, one was abnormal.

She said it didn't point exactly to Cushings, but to sub-clinical Cushings. Gave me options to just monitor it or to get surgery but she suggested surgery, "if it was me, I would have the surgery". I also said i would rather have the survey because I have bum luck with medical issues and if I just monitored, I would come back in a few months with cancer or something wild. She pointed out adenoma don't turn like that under normal circumstances but I said considering I'm immunocompromised things aren't really normal circumstances with me, and i would rather have a surgery that is recommended by my doctor than wait and see if things get better or worse. She agreed but just needed to point out all the angles. (For instance surgery + immunocompromised sucks! And I'll have to take a break from my RA meds, so that's going to flare up. Stuff like that).

Okay into the point of this post... I see the surgeon for my consultation Thursday. Im guessing he's going to help me figure out a good surgery time around my RA infusions schedule and my scheduled hysterectomy. I have questions to ask, and I don't even know what to ask at the same time. Things I know i want to know, is this the full adrenal gland or just the adenoma being removed? What are the differences in the two surgeries other than the obvious removal of an organization vs a tumor? Common surgical questions like laproscopic or open, down time, aftercare, stuff like that. But idk if there are big things im missing to ask either the surgeon or my endo.

What questions should I be asking?

Also to you all, what the heck is the difference in sub-clinical vs full Cushings other than its not a HIGH volume of excess cortisol. To me that just sounds like, we caught it early before it got bad. Does anyone have experience with this specific diagnosis, and can tell me their experiences (especially after surgery)? Will surgery help the hypertension and diabetes and stubborn weight even if its just sub- clinical vs full Cushings?

Also random but... after the surgery do I still have Sub-Clinical Cushings? Like, for medical records do I list that under diagnoses? Maybe I should ask the doctors that.

And what kind of surgeon did you all have? They're sending me to a surgical oncologist and idk if that's because thats who does these surgeries or if its a worry about my RA infusions (biologic immunosuppressants so its similar to chemo in a way I guess?) Or if its some other worry theyre not telling me about the possibility of the adenoma being a cancer tumor instead. The word oncology freaks me out. I will be asking the surgeon of course, just wondering if anyone also had an oncology surgeon.

Is there anything I haven't thought of that i should ask? Im horrible at remembering things at the doctor so im writing a list of questions.

Hi everyone,
I have a question for those of you who are also taking hydrocortisone or other steroids.
I’m about six months post pituitary surgery and currently still taking 50 mg of hydrocortisone per day. My endocrinologist told me that my ACTH level is unexpectedly high. It is currently 35 (so around the middle of the normal range), but according to my endocrinologist, ACTH would normally be expected to be much more suppressed while taking this dose of hydrocortisone.
For those of you taking hydrocortisone: What are/were your ACTH levels while on treatment? Has anyone else had normal or relatively high ACTH levels despite taking hydrocortisone? If so, did you ever find out what caused this, and did it have any consequences?
Does anyone know what a non-suppressed ACTH level while taking hydrocortisone might indicate?
Thanks so much for sharing your experiences!

hi everyone

I've been wondering for a longgggg time whether I could have cyclical Cushing's and would really like to hear from anyone who's been through something similar to my story. And before i get in to it i just wanna say im sorry for everyone who finds themselves here seeking answers and support... going through this is the most isolating and infuriating process!!!

Ok, so I've had a complicated relationship with weight since childhood, this sadly led to severe anorexia when I was younger, so unfortunately a lot of my later weight gain has automatically been attributed to eating/mental health. immensely triggering to be told "you just need to eat less and move more" when you're trapped in a broken body!

I've had several periods over the years where I've gained a really significant amount of weight very quickly (up to around 10–14 kg over a few months) followed by periods of being relatively stable again. It definitely hasn't felt like a straightforward gradual weight gain.

The first major episode was around 2011/12, when I also had things like headaches and sweating. I had a pituitary MRI because of this. Apparently one side of the pituitary initially looked slightly enlarged, although it was ultimately considered normal.

I've since had more episodes of substantial weight gain, despite dieting and exercising A LOT including another really bad period a few years ago (2020-22) I gained a huge amount of weight rapidly and at the same time my mental health completely fell apart. I became extremely anxious and depressed and eventually had a nervous breakdown. I was suicidal and ended up moving into my grandma's empty house because I couldn't cope with being around people and basically wanted to disappear for a while.

The whole thing was horrible because I felt like people were watching what I ate and assuming I must be overeating. before I moved into my grandmas house I even had flatmates monitoring whether I was eating at night or something. Given my history with anorexia, it was incredibly distressing.

I've also since been diagnosed with ADHD, but medication hasn't really changed any of this or explained the episodes.

i stabilised 2023-2025 at the same weight but now I'm noticing the pattern again. I've gained around 4 kg since March, although it seems to have stabilised for the moment. I went to PT in my worst flare up and as the weight rose he asked if was secret eating 🤦🏻‍♀️

I've had various cortisol investigations over the years, including a 24-hour urinary free cortisol of 202 nmol/24h, a previous serum cortisol of 609 nmol/L, and several dexamethasone suppression tests which suppressed to around 21–28 nmol/L.

My pituitary imaging has also been a bit confusing. One of my later MRI reports described the pituitary as significantly thinned, which seems quite different from the original scan. I've had different things said about the imaging over the years.

After two unhelpful and invalidating endos (male) I've now finally seen a woman pituitary specialist. She said I'm not currently Cushingoid, which is reassuring, but she also said that cyclical Cushing's could still be a possibility, and that the difficulty is catching the abnormal cortisol when I'm actually in a cycle.

She's going to ask her mdt if my previous MRI can be reviewed by the pituitary team and may arrange further imaging. My recent bloods also showed raised TSH with low FT4, so thyroid disease is now being investigated as well, including thyroid antibodies.

i would be interested to hear your thoughts!

main issues

• big episodes of weight gain followed by periods of stability
• extreme mental health issues / anxiety / dark ideations
• normal cortisol tests between episodes
• little Cushingoid appearance
• confusiom between abnormal and normal pituitary MRIs

How did you eventually manage to catch a cycle on testing if u caught it?

I was diagnosed with PCOS and insulin resistance and I have the overlapping symptoms (heat intolerance, sweating, fatigue, insomnia, hairloss, terrible migraines) and I also have a giant neck hump, literally a huge handful of fat.. I'm scared it's actually Cushing's, however I DO NOT have stretch marks, moon face or thin arms and legs (I have fat arms and legs)

How worried should I be? What kind of test should I ask for? Do you think a buffalo hump truly means cushing's always? I'm scared

Hello

I have had a lot of symptoms that seem similar to cushings for 4 years. I was recently diagnosed with partial empty sella (from childbirth sheehans). There is also a strong chance I have a growth hormone deficiency. So far other hormone levels are in range. My urine cortisol is low. (I tested twice) but my blood Am cortisol was slightly elevated. I’m confused. Also does anyone know if growth hormone deficiency can cause symptoms similar to cushings. I have easy bruising, irregular periods, and more.

24 hour urine cortisol: 2.7 (Reference Range less than or equal to 50)

Creatinine: 565 (Range 630-2500)

Blood cortisol drawn at 8:47am 20.9 (Range 4.8-19.5)

I have all of the bloodwork testing, urines and saliva's, (all positive) but I have yet to be diagnosed since I do not appear to have a tumor anywhere (yes I have had 3T) but nothing is showing up yet.

I have had very bad experiences with the last two Endo's I've seen and I honestly need a break from all the gaslighting.

Has anyone here had any meaningful improvement on ANYTHING after trying peptides?

Not looking for any other advice at this time (although I know everyone means well), just looking for maybe some peptides to try to ease my misery until I get brave enough to try another Endo.

My doctor ordered an AM cortisol blood test, and my levels came back super high. So I was referred to an endocrinologist. I went to see him, and I wrote down all of my symptoms(all of which can be explained by Cushing’s.) He was kind of dismissive and told me I’d have to go off of my Vyvanse for a week and then he’d test all my hormones again.
One of the most difficult symptoms for me is cognitive. I have brain fog so bad, and I am constantly tired. It makes it very difficult to function. The Vyvanse helps me to actually be a human, so I’m super worried about having to continue working while I go off of that medicine.
I feel like I’m not being taken seriously by this endocrinologist, and now I have to wait longer to figure this out while at the same time being forced to raw dog life without ADHD meds 😭
Here is the list of all of my symptoms I brought to him:
Started gaining weight in early 20’s
(Weight gain began when I gained roughly 60lbs in a single summer with no diet changes)
Almost all my fat is in my abdomen, including a buffalo hump(I also have what looks like a second set of boobs under my normal ones)
Weak arms and weak narrow hips
Bruise extremely easily
Belly hangs down(pendulous abdomen) 
Face continues to get wider
Memory issues/trouble focusing
Cognitive decline(especially the past few 4 years) 
Can’t remember a lot from certain years of my life and short term memory loss
Vision loss in my peripheral
High heart rate
Very irregular periods 
(Example: 2014(25 yrs old) - period for 2 months straight then no periods for a long time)
Excessive dark hair growth on face(I am naturally blonde)
Hair thinning, receding hair line
Fatigue all day
Diagnosed with bipolar disorder
Oily skin
I asked my PCP to order a brain MRI and it came back as no pituitary tumor, but also no explanation for vision issues.

I’m on day 2 of no vyvanse and I’m struggling…

Hi all! I got diagnosed with Cushings syndrome earlier this year after experiencing symptoms for ≈2 years. A CT scan showed I had a ≈2inch tumor on my left adrenal gland. July 30th I had a laproscopic adrenalectomy done with 5 incisions. I ended up needing to stay in the hospital 3 nights due to the pain.

Since getting back from the hospital I have had pretty much no energy and I’m nauseous ALL. THE. TIME. Eating is so difficult because I just feel sick all the time and nothing sounds good. I thought stopping oxy would help, so I stopped taking it around 4 days ago but I still feel the same. I just feel so weak.

Anyone experience anything similar?

25M here. Trying to figure out if my labs and symptoms are connected before my pituitary MRI. I don’t think I used to feel these symptoms of brain fog/low mood a year ago.

Symptoms: brain fog, low mood, zoning out a lot, feel “not really there,” less to say than usual, just don’t feel like myself cognitively or emotionally.

Labs:

-ACTH: high (around 96)
-Cortisol: high end of normal range (not clearly elevated)
-Testosterone: 250-350
-FSH/LH: normal (not elevated)

Getting a 3T pituitary MRI with contrast soon to check for a possible adenoma (Cushing’s disease workup).

I don’t seem to have any of the physical symptoms of Cushing’s like dramatic weight gain, round face, elastic skin, but my doctor is worried about and testing for Cushing’s.

Questions:

1. Does high ACTH + high-normal cortisol + low T with normal FSH/LH point toward a pituitary issue, or could this be something else?
2. Is low-normal FSH/LH with low T consistent with secondary hypogonadism, and does that fit with a pituitary source?
3. Could the brain fog/low mood/zoning out realistically be explained by this hormone pattern, or should I be looking elsewhere (thyroid, mental health, sleep, etc)?
4. If it turns out to be a small pituitary adenoma, does treatment (surgery) usually fix the cognitive/mood stuff, or does that linger?
5. Anyone been through something similar? Trying to get a realistic sense of what’s going on before I see endo again.

Not on TRT yet (tried it for 2 weeks but stopped as I want to sort out the root cause first). Any input appreciated, especially from people who’ve dealt with Cushing’s or secondary hypogonadism workups.

pit or adrenal tumor what's recovery feels how long it takes to see the positive part? of cushings recovery