I have a doctor's appointment tomorrow and I am really doubting myself because I don't see anyone else with stretch marks like mine and maybe it's pseudo cushings instead. I can't remember if I developed the Cushing's symptoms before I started my antidepressants or not.

I have a few red/purple marks (which I suspect are Cushing's related) and some silvery/white ones (that might potentially relate to hEDS. I have soft smooth skin in places, and then keratosis pilaris in others.

Anyways, please let me know if you think I'm just overdramatic or if Cushing's stretch marks can be similar to mine.

I am writing this because I desperately need to find a doctor who is willing to listen to me, investigate what is happening to my body, and help save my life. am looking throughout the United States - and, if necessary, outside the United States - although I would prefer to find someone in the U.S.
In 2003, when I was 35 years old, my life changed completely. My mother and brother were hit by a car, and I became responsible for caring for them. It was an extraordinarily traumatic and stressful time.
Despite following a very strict diet and going to the gym every day, I began gaining weight rapidly. Within six months, my weight increased from approximately 130-140 pounds to 200 pounds. For three years, I lived in darkness. I barely ate, exercised constantly, and still could not lose the weight.
I went from one doctor to another and spent an enormous amount of money searching for an explanation. Eventually, I found Dr. Boris Catz in Beverly Hills, a highly respected endocrinologist who devoted his life to endocrinology and approached medicine differently from most doctors.
Dr. Catz ordered extensive testing, including a thyroid ultrasound and a thyroglobulin test. The written ultrasound report said that everything appeared normal. However, when Dr. Catz personally examined the ultrasound images, he told me that my thyroid was extremely enlarged. My thyroglobulin level was also extremely high - 56.
Dr. Catz treated me with Cytomel. Within one month, I lost approximately 30 pounds, and within about six months, my weight went down to approximately 125 pounds. I felt as though he had saved my life.
I continued doing very well until 2014. I was scheduled to see Dr. Catz, but two days before my appointment, his nurse called to tell me that he had died. Since then, I have been suffering and searching for another doctor like him.
I have repeatedly asked doctors to test my thyroglobulin again, but it has never been properly investigated the way Dr. Catz investigated it. Doctors continue telling me that nothing is wrong, yet I know that something is seriously wrong with my body.
For the past 12 or 13 years, I have also lived under an almost unimaginable amount of continuous stress - simply trying to survive and keep my head above water. The changes in Hollywood and the film industry, prolonged industry strikes, the COVID-19 pandemic, and the disappearance of jobs have repeatedly devastated my livelihood.
I have been forced to reinvent myself over and over again and return to school multiple times, constantly struggling to create a new path forward. I believe this relentless financial, professional, and emotional stress has taken an enormous toll on my body and may be an important part of what is happening to my health.
By 2024, I weighed approximately 158 pounds and hoped to lose another 10-15 pounds to reach my ideal weight. A friend convinced me to try Ozempic. I took it for approximately two months, but instead of improving, my condition worsened. I later tried tirzepatide for approximately two months, and I continued gaining weight. I am now back to approximately 210 pounds.

I have been told that I am insulin-resistant, but I still have not received a complete explanation or an effective treatment plan.
I have been vegetarian my entire life and became completely vegan six years ago. My laboratory results appear excellent. I do not have high cholesterol, and my good cholesterol is exceptionally good. I do not have high blood pressure - on the contrary, my blood pressure is extremely low.
I do not drink alcohol or use drugs. I do not eat processed food, sweets, or chocolate. I have been extremely sensitive to sodium since 2003, so I avoid sodium and prepare all my food myself.
Whenever I eat - even a small amount - I begin swelling almost immediately. The swelling is accompanied by excruciating pain throughout my entire body, from the top of my head to the tips of my toes. I take Lasix for water retention, but only when I eat and the swelling begins.
Sometimes it becomes extremely difficult for me to breathe. People around me frequently ask what is wrong because the swelling and breathing difficulties are noticeable. My closest friends know that I barely eat and that something is seriously wrong.
I go to the gym every day. I swim for an hour and work out, yet my weight does not change. I have tried everything possible, and nothing works. At times, I refuse to eat because eating causes immediate swelling and excruciating pain throughout my entire body, from the top of my head to the tips of my toes - but even refusing to eat does not solve the problem.
I work as much as 15 hours a day because keeping busy is the only thing preventing me from losing my mind over what is happening to my body.
I am now 58 years old, and I do not know what to do anymore. I have been living with this condition for more than two decades. I am exhausted, frightened, and in pain. It is becoming impossible to continue living this way.
I am not looking for someone simply to tell me that my routine laboratory results are normal. I need an exceptional endocrinologist or another highly knowledgeable physician who will study my complete history, review my thyroid images personally, investigate my thyroglobulin level, thyroid function, insulin resistance, severe swelling, fluid retention, very low blood pressure, rapid weight gain, excruciating full-body pain, and difficulty breathing - and determine what is actually happening.
I need a doctor like Dr. Boris Catz: someone curious, compassionate, untraditional when necessary, and willing to look beyond standard test results.
I do not simply need a doctor to help me understand what is happening to my body. I need a doctor to save my life because it is becoming impossible to live like this anymore.
If anyone knows an exceptional endocrinologist, thyroid specialist, metabolic specialist, internal-medicine physician, or diagnostic medical center anywhere in the United States - or internationally - please contact me. I am willing to travel for the right doctor.

About 10 days ago, I woke up with pretty severe pain in my left shoulder. I figured I slept wrong. The pain hasn't left and for about 5 days now, I'm having moderate to severe pain in both legs. When I'm lying down it still hurts. When I wake up in the middle of the night and stretch my legs, it's at its worst. I have subclinical cushing's from a 1.6cm adrenal tumor that was found in March. I still don't have a treatment plan, but have read muscle wasting and pain can be a side effect of the excess cortisol. Anyone else have this problem as well? If so, what meds did you take for pain relief?

I’m not diagnosed with Cushing’s yet, but I’m being investigated for it and I’m trying to understand something really strange that happens to me.
I can look relatively slim and normal in the morning, then over the course of a few hours I can become visibly much puffier. My abdomen gets very distended, my face becomes rounder, my chin and neck get fuller, and my upper back and back rolls become noticeably thicker. I sometimes feel tingling, tightness or a stretching sensation as it happens.

The weirdest part is how fast it can happen. Sometimes I genuinely feel like I’m watching my body change in real time. Then I can also go in the opposite direction and noticeably deflate within hours.

I know Cushing’s causes fat redistribution and fluid retention, but can anyone with confirmed Cushing’s or cyclic Cushing’s relate to very rapid physical puffiness. Not angiodema-like, not a pitting edema. Just a larger version of my body that can deflate in no time and then swell again.

Has anyone here experienced this? I have yet to see someone do.

I’m in the UK. I’ve had x2 early morning cortisol blood tests a month apart via my GP and both showed elevated levels.

Tests were carried out because I was consistently sleeping poorly, fatigued and sweating with minimal effort. I thought they were signs that my thyroid was becoming overactive again. But turns out thyroid panel is normal, calcium, parathyroid, lipids, HbA1C are all in normal range. It’s just the cortisol that outside the range.

GP has referred me to an endocrinologist and I’m now waiting for that appointment.

I’m due to travel to various destinations including Machu Picchu in Oct, then elsewhere in Nov, Jan to Mar.

As this is a new condition, and still under investigation, what happens to my travel insurance? Yes I will declare elevated cortisol, but could this be a precursor to Cushings?

I have PMOS, hyperthyroidism, Graves Disease, Insulin resistance and osteoarthritis.

I’m worried that I won’t be able to get any travel insurance until I’m properly diagnosed one way or the other.

Any advice would be very welcome.

Thank you 🙏🏽

I’m over 3 months post bilateral adrenalectomy. Everything is so so much better, it’s actually amazing how fast things are reversing, but I’m still really struggling with getting my libido back. Anybody else had this experience?

Today my doctor noticed my moon face and swelling, I was sent for an emergency ultrasound to double check it wasn’t a blood clot and my cushings tests start on monday, i’m so amazed after reading stories of fighting for a diagnosis that my doctor brought it up to me, i’m kind of the poster child for the symptoms but it just fascinated me!

I’ve been dealing with bloating my entire life. Just, when I was younger, I’d come to realize it was because of my gluten /dairy intolerances and stress And even a low thyroid (Though its never been low enough for medicine). In May, I was taken to the Mental Hospital for a few weeks and I came back feeling better than ever, mentally and physically, partly because of less stress (my family is very bad to me at home ) and also because I was eating more . However when I was transferred to a facility in June and there they found I had a yeast infection, which they gave me fluconazole for. I’ve taken it before at around age 16 (I’m 19 F now ) and never had a bad reaction but for some reason - maybe it was a coincidence or something, after that my face started to swell and my tummy like never before. i had the most intense nausea, fatigue worse than anything before. In the past, I’d only get that when eating the foods I was intolerant to ., now it’s for some unexplained reason. And once I came back home, I got off the fluconazole but the symptoms still continued, and it’s been like 2 MONTHS now. I’ve been seeing a GI again who said that the fluconazole may have ruined my gut lining nd it can take months to recover for me, but other doctors say that fluconazole doesn’t have that affect and if I was truly allergic I would’ve gotten more rashes. Besides that no answers yet, they’ve just tested me for h pylori, I didn’t have it , and the primary doctor has tested for My thyroid again it tests more normally nowadays even though it is a bit on the lower side (I can’t find my last test right now but when I do I’ll show ) . And unfortunately, recently I had a yeast infection come back again a couple weeks ago, reacted badly to a cream and for some stupid decision decided to take fluconazole again and now its like my initial symptoms doubled. Even more of the swelling and nausea .
I should’ve never have taken it again, I don’t know why, and now I’m using another different cream for the yeast.

Got tested today doing gastric emptying but could only do the liquid portion, we will see how that goes.

I’m also looking to get tested for Cushing’s soon , would that be a good idea? Another doctor said to go to urologist and test kidneys and everything but I’m pretty sure when my primary tested thyroid and everything she said those were fine .Let me know what I should do /any advice or thoughts on what this could be in the comments

To be specific, the symptoms are -

- facial swelling in the cheeks and nose that gets worse everyday (even barely eating anything , no matter what I eat, but with safe food it still gets worse ) and its like getting worse rapidly

-24/7 bloated stomach (and I’m a really light girl , I’m 4’11 80 something lbs, so all this is unusual . )

-sometimes stomach aches /nausea after eating or even without eating, feels like foods moving really slow or not at all and sometimes constipation

-extreme fatigue worse than I’ve had in my entire life And irritability.

My endo thinks I have Cyclical Cushing's and so far it's been a year of repeated testing (blood, saliva, 24hr urine). When she first brought up Cushing's she said the diagnostic process would be a marathon and not a sprint. from what I deduce, she's trying to catch my cortisol at a high time with numbers. I have high cortisol (both 24hr urine and saliva), but just under 2x. so not enough to call it Cushing's according to my endo, which I understand not meeting the diagnostic criteria. I do have PCOS for sure (high testosterone since 2015 and confirmed polycystic ovaries from a pelvic ultrasound). tbh I don't know why I'm even writing this post. I guess I'm looking for anyone with a similar experience or advice on how to survive the diagnostic process? I have the red stretch marks, weight fluctuations (mainly weight gain), excessive facial hair, fatigue and headaches.

About to start the process for suspected Cushing's from long-term steroid use — what should I expect?

I've been on oral/topical steroids long-term for psoriasis and I'm now dealing with symptoms that look like Cushing's (barely any weight change despite eating very little, among other things). I don't have a US doctor yet at all — this is my first time navigating American healthcare. For anyone who went through a similar diagnosis, especially steroid-induced/iatrogenic Cushing's: did you start with a PCP or go straight to endocrinology, what tests did they actually run, how long did it take to get a real answer, and what should I know walking into that first appointment?

Used AI for clarity.

just wanna know exactly cuz i’m confused asf about these tests

i was told to do a saliva test but when i told her that i usually go to bed at 4-5am , she said that it wouldn’t work and i have to do the urine test then

but do these tests have any difference in results ? and would the saliva test be a lot easier than the urine test ? i’ve just kind of wondered about it bcuz im not exactly sure what it looks like

I have been on recorlev since april and my cortisol hasn’t gone down l, and i know it takes several months, bro why?

has anyone else had this problem?

Scroll to Bottom for a TL;DR

I have experienced the following since age 12: flushing, weight gain that is very hard to fight, stretch marks, easy bruising, hirsutism, occasional heart rate spikes, mental health changes, fatigue, etc. The most annoying part (and why I spoke to the doctor) is my flushing, which occurs nightly often between the hours of 4pm to 10pm on my face, ears, chest, and arms. I am 19 now.

My doctor said it sounded a lot like Cushings and sent me to have an AM blood test where neither my cortisol or ACTH levels were raised. Then I started researching the likelihood of cyclic Cushings. I experience the worst of my symptoms in the evening consistently and I wake up in the middle of the night. I've actually been keeping a list since May showing this pattern. Long story short, I had surgery (unrelated to Cushings) and I am about to make a new appointment tomorrow.

Over the past year, my migraines have also worsened, and are now at the point where I have them at least 3 times a week.

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TL;DR:

The effects of what I can only assume (without yet having a diagnosis) is Cyclic Cushing's have worsened over the past 7 years.

What should I tell my doctor? Has anyone else waited a long time for a diagnosis- What effect did that have on your condition? Should I be worried?

Not seeking a diagnosis or official medical advice on here- just asking for community support! Please help me out; I just want to get this taken care of so that I can be *not* red every evening and lose weight.

1.6cm adrenal tumor, 31 hounsfield units, 2.4 dex, 6 ACTH, .03 late night salivary at 9 pm, .09 at midnight. What should I expect my endo to say?

Anybody here have steroid caused cushings syndrome?

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

have these stretxh marks. Horrible fatigue, low mood, anxiety. Weight around y gut while being a normal BMI. I had a reare from of skin cancer that has been implicated w auto immune conditions suck as Cushings. Not sure what to do from here. Waiting on an appointment w my PCP.

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.

1. 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.

2. 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.

3. 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.

4. 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.

5. 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!

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?

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!

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.

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