Possible/Pseudo Cushing syndrome

Does anyone here have a diagnosis of Pseudo Cushing’s? I was diagnosed with Polycystic Ovarian Syndrome and T2D, but I have elevated cortisol levels in blood, 24 hour urines, and midnight salivas. I have normal ACTH levels, I suppress on dexamethasone, normal pituitary MRI and normal abdominal CT scan. I also took the DDAVP stim test, which was normal. I haven’t met a lot of people with Pseudo Cushing’s. I’m not a drinker, in fact i don’t drink at all. I do have OCD and wonder if that is where my HPA axis dysregulation stems from. Being a case of pseudo, no endocrinologist has really been able to offer me a solution to regulate this imbalance and living with this is making it very difficult to balance my PCOS, weight, and glucose levels. I also have elevated prolactin, but again no pituitary tumor behind the cause. It’s idiopathic. Anyone else in a similar situation? It seems pretty rare, but maybe it’s not, maybe it’s simply under reported or diagnosed?

@pinkrosebud, I'd like to bring @astaingegerdm and @jmb73 into this discussion and hopefully to add some thoughts to your post. What a relief that you do not have a pituitary tumor, but frustrating that you, as yet, have no plan of action to help regulate the imbalances.

Have you considered getting a second opinion at a large medical center like Mayo?

Hi Pink Rosebud,
I have been tested for Cushing's too but everything came back negative- like you. It's great that you don't have a tumor but it's a pain when they can't find out a diagnosis. If you are able to go to a big medical center, they might be able to figure it out. I also don't drink but am putting on weight. I am sorry that I couldn't help you but if you want to keep this chat going, I am willing to listen.
Take care, Joan

I need help with what to do next to help understand if I have a diagnosis of cushings and where to go from here. I am 24 years old and I have been dealing with extreme weight gain over the course of the last 3 years 60+lbs. I have stretch marks all over my bell and back hip area. I also have a Buffalo hump that has gotten larger over those last couple of years. This all started by me trying ever diet under the sun and sticking to a hard regimen and still never seeing any results. My primary doctor first tested my cortisol levels in august of 21 and my levels where at 32.8. My primary referred me to an endocrinologist. He looked and me and because it was covid said that it’s just covid weight and he did one test of my free cortisol levels through saliva and they came back normal. He also related my high cortisol levels to being on birth control that I had stopped 1 month prior to the test which what increased my cortisol levels. Coming to present day (4/2022) I still was questioning what is going on. I have been off birth control for over 8 mo. Continued to have the same issues so i wondered if it was a fluke that my cortisol was high. I got referred to a different endocrinologist that testing everything under the sun. My cortisol this time was 30.4, and my ACTH levels where are 110. The next test she ordered was a low dose dexamethasone test where both my cortisol and acth dropped. Now I’m at a stand still of where to go… something is wrong and I just know it. My blood cortisol should not be high nor should my acth so what else can be causing this? Please advice thank you!

@lexirose98 I'm sorry you have not found an endocrinologist that you feel is able to tell you if you do have Cushing’s disease or not.
Check this link to Mayo Clinic’s information on Cushing’s:
https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/diagnosis-treatment/drc-20351314
You seem to have many of the symptoms and features, but the testing you have had does not appear to be complete. One important test is a 24 hr urine for free cortisol. Also, the precise time of the day of the other hormonal tests is also important.
My daughter was finally diagnosed with Cushing’s disease at age 27. She had a pituitary adenoma and had successful surgery to have it removed.
Even endocrinologists are not always good at diagnose this somewhat rare disease.
You should see an endocrinologist at a major university medical center- or Mayo Clinic- where they are experienced in diagnosing pituitary problems.
I know that you are aware it is very important to get the correct diagnosis as soon as possible so you can start the right treatment. Can we help guide to a Medical Center in your part of the country- or tell you how to get an appointment at Mayo?

Just discovered this great resource. Over the past 12 years I have gone from 105 lbs to 190. Before this I was always around 103-110 (even after two pregnancies).

I started seeing doctors 10 years ago when at 115 because I knew it was not normal. No doctor has been able to diagnose. Now I have many other problems including diabetes, have very little stamina and can't even walk a block without shortness of breath. I used to run 20 miles a week and bike ... but my whole personal and professional lives are horrible now ... can't even make it to programs and meetings because I don't feel well.

I've done many blood tests of all sorts over the years and several MRI of pituitary and adrenal.

Now, I am exhibiting all the symptoms associated with Cushings Syndrome except the 24 hour urine cortisol test. While I do show small adenoma on pituitary and all the symptoms, they don't think its Cushings related due to the 24 hour urine cortisol coming back 'normal.' I've done saliva test and morning is 'in range' but night time and afternoon are high. The suppression test is also coming back 'normal.'

One thing I do know is that I don't sleep well. But 85 lbs due to poor sleep?

One observation I have shared with the doctors (but they continue to disregard it but worth mentioning) is that for 1.5 years 13 years ago I took Ativan which caused a huge weight loss (but had severe negative side effects including delirium and retrograde amnesia). It might be a clue, however, that research has shown in some patients it lowers cortisol levels. I took it 3 times more a few years ago (each time only for 3 days or so when close family members passed away and each time I exhibited all the same symptoms including huge weight loss). So, this may be just coincidental or may be a clue.

I've seen doctors at Stanford and UCSF, but none really listen and keep repeating the same tests over and over again.

So now, 12 years later I've gone from an active person to basically one who can't even walk a block. At 50 I was in best shape I had ever been and now at 60, well.

I am a moderate eater, Mediterranean diet.

You mentioned your concerns about Ativan, that made me wonder if you have had or considered pharmacogenomic testing? Several years ago the acceptance of pharmacogenomic testing seemed to vary from one teaching Medical Center to another. I don't know if that is still the case (Stanford wanted more validation I was told as a clinic patient). Pharmacists, even my dentist seemed more interest in the results! Pharmacogenomic testing potentially could validate on paper why you responded in the manner you did to Ativan.

Thank you. I will look into how to get the test done. I don't have any medical need for Ativan as the situation has passed, but I always thought it might be an indicator of why my body is going through this horrible ordeal. I also tell the doctors that for a two months in early 2000 my doctor prescribed Celexa (and SSRI) which cause me to gain 30-40 labls (that fast) and increased my prolactin level. They could not figure out why and never saw the relationship. I did my own research and saw that that there are instances of SSRI causing not only weight gain but also increased prolactin (back then this information was not readily available on internet).
I stopped it and within 1 month my prolactin went down to normal and it took 9 months to lose the wait (on its own).

But no doctor ever has listened to these.

Thank you again.

Hi @mishkamilad, I wanted to welcome you and just put this discussion on your radar as well so you could connect with more people about Cushing syndrome.
Possible/Pseudo Cushing syndrome: https://connect.mayoclinic.org/discussion/possible-cushing-syndrome/

How many opinions have you received regarding your symptoms?

None conclusive. I've seen over 8 doctors in past 10-12 years (all in Bay Area ranging from internal, nutritionist, endocrinologist, neurosurgeon) ... none has diagnosed me with anything. First it was because "I was getting older," Next "I was eating too much salt," "Next eating too much in general," Next, you are diabetic, use $1000 Ozempic shots to manage diabetes."

Thank you for the link. I will add that thread to my list.

The symptoms have been slow to show ... the first one was weight again, then slowly progressing to manifestation of all the other symptoms which correspond to Cushings Syndrome (disease or otherwise). The only lab test that does not match is the 24 hour urine cortisol and the post-Dexamethasone.

Each doctor makes me repeat the same blood tests over and over without ever bothering to really review the history.

Where is Dr. House when you need him?