Pseudo-Cushing’s - worried I’m being brushed off

Yesterday I met with a pituitary and adrenal specialist. I sent her my labs from my previous endocrinologists, which were borderline high with the exception of one really high AM serum which i believe was due to my birth control. She seems to think I may have pseudo-cushing’s. We are waiting for the two midnight saliva results still but my AM cortisol serum was 42.1, top range 25 and my UFC was 56, top range 45. My ACTH was 16.5, top range 64.3. 

I feel like I jeopardized my meeting with her because I’ve been such a mess lately functioning with hardly any sleep and the three trips back and forth to nyc really took a toll on me. I cried hysterically and now I’m worried they’re throwing me into the pusedo camp. I understand it needs to be ruled out with mild elevations and since I lost weight recently they don’t think I look cushingnoid enough. I really was only going to see this dr to get ideas as to what could be wrong, she is the one who turned it into a cushing’s workup.

Did anyone here have to be ruled out for pseudo cushings first or get diagnosed with it? 

My skin has become thin and crepey like, the nurse noticed it but I felt like the dr didn’t seem concerned. A lot of my physical symptoms didn’t seem to concern here but it’s my body and I know all these changes are new and very wrong. 

One of the first signs that I picked up on that something was wrong years ago was, aside from body comp changes, my mental well-being. I just developed weird mood issues, uncontrollable intense anxiety, anger issues, depression, etc. I can’t cope with any stress now, little or big. 

I have been having many symptoms of cushings for years that I blamed myself for (job stress, loneliness, long commute, poor self esteem, laziness, etc.). I had body composition changes, weight gain of 35 lbs although I recently lost after cutting sugar and carbs but my loss is weird. My stomach is still flabby and fat but everywhere is skinny. I used to be pear shaped with a perfect flat stomach when I was my old self. I had a puffy round face that went away with weight loss but when I compare pics from my past I can see my face was not puffy looking at higher weights and at lower weights I had a puffy face. Makes no sense. I have worsening rosacea, bad muscle weakness and fatigue, hair loss, major sleep disturbances and insomnia, migraines, easy bruising and thin skin, severe mood and emotional issues. It really exploded this past March. I started losing hair more rapidly and all over my head, all the vellus hair on my body and face grew crazy long and I used to be a hairless person. I even have long vellus hairs on my eyelids now. I’m getting episodes of rapid heart rate for no reason, dx with prediabetes, insulin resistance, developed hypertension, high cholesterol, have had weird skin infections (cellulitis). I used to be so healthy, never ever had an infection like that before and I’ve had tattoos and piercings that I could have cleaned better during the healing process but no issues.

Can psuedo cushings really cause my issues? I feel trapped in a nightmare. Before it became apparent that everything that was happening to me was NOT my fault, I would ask my family if my face looks different, I would cry to my mom that I’m not myself anymore and I want to be old Gina. In 2016 I had a painful small hump between my shoulders that I took photos of, I blamed my deskjob but that’s when I read about cushings and suspected I had it. I remember checking every girl’s back on the subway to work to see if they had it too. I thought I just felt beaten down by a stressful lifestyle but I’m a total mess now and don’t even recognize myself in the mirror anymore. My hair is so thinned and my smooth skin is covered in a layer of long spikey hair. 

The dr wants me to go back in September and do more tests. I don’t know how to wait that long. I feel so sick and weak and I’m going to be bald by then. How did everyone get through this? Are they just going to wait until I’m a textbook case? I want to salvage what I can of my body, health and life and I’m just always being put on a back burner or told I’m just crazy. 

Anyone have to push through a pseudo cushings diagnosis before finally getting treatment or determining the source? My mri of the pituitary and ct scan of the abdomen were clear although the endocrinologist did say that many pituitary tumors are too small to see on the mri. I still think she’s leaning towards me being nuts though. Having lived with this for years, I can surely attest that I’m not crazy. Something is very wrong, beyond my control and I used to be a fit athletic happy girl. Sometimes I wonder if mine has been cyclical all this time. I had a UFC June 6th that was 32.5 out of 50. Now a couple weeks later I get a UFC at this clinics lab of 56 out of 45. Ugh. Sorry for the rant. I’m scared. I just want my old self back and to feel healthy and have energy and sleep back in my life. And a sex drive! I wanted to be a mother so badly but I’m 30 and this is delaying my dream. I want to gain back my hopes and dreams that I’ve lost to whatever hijacked my body and mind. I’m terrified because I feel trapped in a body I don’t recognize and feel like I’m developing the health status of an 80 year old.

Anyone get slapped with pseudo cushings at first?

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