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I have many questions about Cushing’s and testing

How common is it for someone to have Cushing’s disease, but the pituitary tumor does not show on MRI?

Would stress cause an elevated UFC? I had a recent result of 56 with top range being 45.

Can someone with Cushing’s fluctuate in appearance? I struggled to lose weight for years and finally did after cutting all carbs and sugar and eating very little. Now it seems I can’t keep weight on but my body composition is still off. Used to be pear shaped but now even at 103 lbs I am apple shaped with a flabby belly.

My story is a long one but for years I noticed I was gaining weight and felt my face looked fuller. I felt off, not myself. Muscle fatigue in thighs and arms. Thighs burned to get up stairs. Sleep issues, dreaming constantly and waking up ever couple hours. Hair was mildly thinning over the years, zero sex drive. Major mood issues, irritability and anger issues. Slowly evolved into depression and major anxiety. Hormones tested by a gyno in feb. 2017, was told I had high prolactin and high total testosterone. Saw an endocrinologist a year later, had MRI that was normal. During that time my symptoms exploded. My hair started falling out rapidly. It’s so bad now. All the tiny vellus hairs all over my body started growing super long and on my face, forehead, stomach, thighs, back, everywhere! Even eyelids. I used to be virtually hairless. Moods got worse, even became suicidal before moving in with my parents because I was scaring myself. I jolt awake with intense anxiety at the same hours every night. I saw an RE who told me just after looking at my ovary ultrasound that I had pcos yet I had a normal period and no signs until recently (hair loss/growth). I was found to be prediabetic and insulin resistant. I also developed hypertension and cholesterol went up. They put me on Spironolactone, birth control, and metformin. I went on a low carb no sugar diet and weight fell off me.

At this time I refused to accept pcos as I knew I was suffering with physical symptoms for years before these new issues popped up and I never displayed classic pcos signs and my free T and DHEA-S were in range every test and my SHBG super high off the range. I pushed my medical endo to check my cortisol. AM blood came back 1 point from top range twice before birth control. UFC was about 1 point from top too. After birth control my am cortisol went up to 49, but I know it’s from the estrogen. I was dismissed but pursued further and am currently seeing a endo specializing in pituitary tumors at Sloan Kettering. There my am blood was still high but again I’m on birth control but my UFC was 56 and the top range was 45. I’m worse than ever right now. Waiting for my midnight saliva test results.

My ACTH was in range at 16.5.

I’m worse than ever, I got cellulitis on my ear that’s still healing, a tooth infection now, my neutrophils are high while lymphocytes are low, I have thinning skin, getting dry flaky skin and dandruff, hair coming out in clumps now, all my bones hurt, muscles feel like they’re wasting, episodes of rapid heart rate, hair growth getting worse, sweating, sleep issues that I can’t cope with, massive anxiety, I’m not myself. Bruising easily but have for years.

The specialist I saw yesterday said it may be pseudo cushings but I don’t believe it. I get that I don’t look like the typical cushung’s patient. My hair growth doesn’t appear severe Bc it’s all just blonde right now but that’s Bc I never had any hair at all and I out extensions in my hair to cover the thinning.

I had a clear mri and abdominal ct scan. She did say it’s possible the tumor did not show and I’d have to do IPSS if my labs continue to be high. I’m waiting for my midnight saliva and then was told to stop birth control for six weeks and retest and do the dexamethasone suppression test.

Does this seem like cushings? I’m so stressed. I can’t wait weeks to retest and my next appt with her is in September. I’m in so much agony. I want to be myself again. I’m also scared of an ectopic tumor but she said because my ACTH was well in range it’s highly unlikely. If it is cushings, she said based on my age and gender it would most likely be coming from my pituitary.

I cried in my appointment and was very panicked but I couldn’t help it. That’s how whatever is wrong with me is affecting me. I’m afraid I jeopardized my chances of her wanting to work with me but I desperately need help. I’m not well. I’m scared of how much worse I’ll be in 3 months. I’m worse than only two weeks ago.

Anyone familiar with the cushings diagnosis process and have any answers or advice for me? Thanks!
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