r/Cushings

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?

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.

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?

Endo is being dismissive.

My 13 year old daughter has multiple symptoms of Cushing's - moon face, irregular periods, hirsutism, significant weight gain at odds with her diet, facial plethora, mild insulin resistance, striae on her sides, breasts, upper arms and upper thighs. 

Looking at trends, when she'd had her period for about a year, she was getting it monthly, ranging from 21-29 days apart. In the past 6 months, she's had 4 periods, ranging from 36-51 days apart.

She did a 1mg dexamethasone suppression test and she did not suppress - she had results of 2.7 ug/dL for cortisol and <1.5 pg/mL for ACTH.

She has had two sets of late night salivary cortisol testing. Both times she returned one night in range and one night out of range. The upper limit of the lab range was 0.09 ug/dL. The first set she had a night at 0.121 ug/dL and a night at 0.043 ug/dL. The second set she had a night at 0.05 ug/dL and a night at 0.21 ug/dL. I ordered the second set out of pocket on my own since the endo was dismissive after the first set.

All other extensive bloodwork she's had done has returned as normal.

Endo says that salivary needs to be greater than 0.27. From what I can find, this seems to be based on a study from 2000. I sent her a study from 2021 on the lnsc in children, which concluded that anything over 0.09 was abnormal in kids.

She seems to chalk everything up to my daughter being overweight - and wants to put her on meds for the insulin resistance and hirsutism.

It's incredibly difficult to find a pediatric endo accepting new patients and I've been unsuccessful in getting my kid in anywhere else.

It seems, at the least, that additional testing should be called for. I'm not sure what I should be asking for, we have a return visit early next month.

I’ve never posted before so please be patient with me 😬
I recently had an unrelated ER visit where they discovered a tumor on my left adrenal gland, when I went down the rabbit hole I assumed I had high cortisol based on symptoms, body type, weight gain, etc. I’m currently in the process of getting VSG because I’ve gained 60lbs in the last 5 years and 20lbs of that was gained within two months.

So the part that is confusing me is that I had a follow up with my PCP and got an AM cortisol test and it’s low! 5.4 ug/dL . Has anyone else experienced this? Is it possible to experience both? MRI is in a month and the results came in on Friday and haven’t been reviewed yet but Google is so unhelpful and I’d love to hear from people who actually have gotten useful information.

Edit to add: I have an MRI coming up 05/28, endocrinologist referral appt on 07/01, haven’t heard back about cortisol results yet since I checked mychart on my own.

I’m hoping to get more info on what others did to receive either a proper diagnoses or managed their symptoms on their own!

Hi everyone,

I’m a 34-year-old woman from Quebec, Canada, and for a while now I’ve been wondering if I could possibly have Cushing’s.

I have a doctor’s appointment in a few days (for something unrelated), and I really want to bring it up while I have the chance… but I’m honestly terrified to.

I don’t have a family doctor, so every appointment is with someone new who doesn’t know me, my history, or how much my body has changed over the years. I feel like doctors often see my weight first and immediately make assumptions.

I’ve struggled with my weight pretty much my whole life, even during periods where I was really active. But what worries me is not just the weight. I have so many symptoms that seem to match Cushing’s that it’s honestly becoming hard to ignore. I also have severe anxiety (I’m being treated for it) and thyroid issues that I take medication for.

I think part of why I’m so scared to bring this up is because of past experiences with doctors. I’ve dealt with a lot of fat shaming over the years, and it’s made me really anxious about talking about my weight to doctors. One time I went in because I had a gum abscess and half my face was swollen, and the doctor literally just poked my stomach and told me to lose weight.

So now I’m scared that if I mention Cushing’s, I’ll just get told to exercise more and eat healthier, even though I genuinely feel like something is not right with my body.

For those of you who were diagnosed (or even just tested for it), how did you bring it up to your doctor? What helped you be taken seriously? Is there anything specific I should mention?

Thank you so much.

Hi everyone. I am F26 and was diagnosed with Cushing’s disease in 2018 (pituitary microadenoma, ACTH-secreting). I had transsphenoidal surgery in 2018 followed by Gamma Knife radiosurgery in 2019. Surgery was unsuccessful so Gamma Knife was used as second line treatment. I went into remission and was well for about 2 years.

Since 2023 I have been getting progressively worse. I have been diagnosed with ME/CFS, POTS, MCAS, hEDS, UC, and have a positive ANA 1:320. My hormone values have been abnormal including elevated DHEA-S, testosterone, aldosterone, high-normal cortisol and prolactin, and fluctuating TSH.

My last pituitary MRI was in 2019 — 7 years ago. I have never had a GH stimulation test, DEXA scan, or proper full pituitary hormone panel. My endocrinologist keeps telling me nothing is wrong despite all of this.

I have finally gotten an appointment with the endocrinology department after pushing hard. I am planning my first pregnancy and am very worried about whether these hormonal imbalances are safe to conceive with. And also my declining health in general.

Has anyone experienced late-onset hypopituitarism after Gamma Knife? Has anyone had to fight for proper follow-up care after Cushing’s remission? Any advice for my upcoming appointment - or in general - would be so appreciated!

Hi

I did search the sub and read up on a few doctors people have used in New York City, but some are out of network or are no longer operating and I just wanted to make a new post to see.

I have high 24 hour urine cortisol, a 1 mm pituitary tumor, I suppressed on dexamethasone, but my current doctor doesn’t feel that it is Cushings anymore (since I suppressed, though my primary dr pointed out that normally points to source, not diagnostic). I am gaining ~10 pounds a month despite calorie restriction, exercise, and meeting with a nutritionist weekly to go over everything I eat. I have low vitamin D, insulin resistance, and very wide purple stretch marks that are now spreading down my arms and legs somewhat rapidly, and my ankles and body are very swollen. The head of nursing at my company commented on my “moon face” and said she could tell just by looking it’s hypercortisolism and asked if I had Cushings, I also have the hump. I was 135 lbs in October and am 190 lbs now since April with restricting and exercise. This did happen extremely suddenly but has been increasing monthly during a period of intense stress with PTSD and I have not responded to any psychiatric medications over the course of almost a year. I have a high heart rate that I have to be on medication for, benzos for anxiety that do not affect me, and I’m truly at a loss at this point and don’t have any doctors that are able to help me.

The only Dr pushing for this for me is my integrative Dr but he is a urologist in the Midwest and I am in New York State. I’m willing to also travel if needed and just want to save my body before this keeps getting worse.

Thank you for any help. I’m hoping that if I can find a group or specialty of a hospital that specializes with this disorder, I may have a chance. Thank you so much.

I’m sorry to read all the stories here. I’ve been having some issues over the last two years that I can’t put my finger on.

I thought it was thyroid related so got a new endo to evaluate me instead of my PCP. I did change my thyroid meds and the levels are normal (they were normal before)….but anyway. I came back with high cortisol.

Now, the new dr is going to do more testing, but she’s a real piece of work (that’s the nice way to say what I’m thinking). I’m going to let her run these tests then I’m getting someone new.

She won’t tell me anything, won’t talk to me about anything. States that high cortisol is normal and it fluctuates all the time and none of my symptoms relate to high cortisol.

I’m not saying I have Cushing’s, more tests are needed, but something is not right. I have debilitating stress for no reason, I gained 30 pounds in 9 months, burning muscles and tongue (def worse in the evening), fatigued, losing hair in wads. I went outside to do 15 min of yard work today and it felt like my body was shutting down. I was shaking and uncontrollably crying like I went into shock. I am so hot I’m barely wearing clothes. So hot I feel sick and that I may heat stroke out just going up and down stairs. There is no temperature regulation at all. Hypothyroid peeps should not be hot! I was actually diagnosed with a Pituitary tumor in my 20’s that was not an alarming size at the time, but hasn’t been revived in a few decades. I know that’s neither here at the moment, but I didn’t even get to mention that because I was dismissed immediately that none of my symptoms related to endocrinology.

My job is a high intensity, physical labor job and I’m lucky I haven’t lost it yet. It’s getting close though. The word Cushing’s was not discussed with my doctor. I was just trying to figure out on my own how I can lower my cortisol and I read about this disease.

Just to be dismissed before anything gets started is beyond me. Has this been hard for everyone to get diagnose? From reading in here it seems like people are struggling to get doctors to listen.

Doing my 24 hour cortisol urine test today. My am pm was negative. When I asked my Dr for the 24 hour urine he told me if my am pm was negative I dont have cushings. I explained about all the people who were only diagnosed through the 24 hr or suppression. He said I guess I will send you, but its going to be negative. He also refused to send me to an endocrinologist even though, even if its not cushings, obviously something hormonal is going on. I wish switching drs was an option. Im in sask and drs fill within a day here.

Hello!

I have been in Cushing's remission for just over a year. I am in Western Canada. I was wondering if they were any fellow Cushing's patients out here? I have yet to meet one and would love to build a little community if we could. If you're out there, let me know!!

:)

Hi everyone i’m 1 month post pituitary tumor removal surgery. I was just wondering how long it took for some symptoms from cushings to subside. Hair loss was a big one for me and i’m still loosing chunks. I’ve noticed some inflammation in my body & face go down but that’s about it. My eyes also still feel a bit heavy and look bloodshot towards the end of the day.

Hello. Im in my late 30s. Was diagnosed with Cushings in Aug 2025 and work-up done was suggestive of a pituitary microadenoma however my IPSS was inconclusive. I have full-blown Cushingoid features and have seen 5 endocrinologists as of now. In Nov 2025 i had a routine mammogram done and Feb this year,2026, i was diagnosed with left breast cancer Stage 1

Had an op done in March this year. I was on Ketoconazole but didnt work well on me as my liver enzymes were extremely deranged so had to stop. I will be starting chemotherapy and radiotherapy soon. My endocrinologist says this is extremely rare to have Cushing and cancer. Now im not on any medication. For the past 1 month i have been having severe arthralgia (joint pain) and muscle pain and my pain score is usually 8-9/10.

Anyone has any experience dealing with Cushings + Pituitary microadenoma concurrently with Breast cancer undergoing chemotherapy. Please share.

Also anyone with experience on this joint pain pls enlighten me.

I would like to know which is the best Endocrinology Centre i could visit or consult please. Thankss.

As my title says, I got my letter from the endo consultant today saying results of my urine test are normal. Prolactin levels have to be tested again in 4 months. The fatigue and sweating continues, and more stretchmarks are appearing all the time. My willingness to push the NHS took a hit with that letter and I'm starting to feel like a hypochondriac. Does anyome have advice on where to go from here, or stories of a similar experience?