We are delighted to welcome Dr. Leena Shahla to the Pituitary Podcast. She is the director of The Duke Pituitary Program. Today she joins PWN co-founder and medical director of the California Center for Pituitary Disorders at UCSF, Dr. Lewis Blevins, for an in-depth discussion about pseudo-Cushing’s syndrome.
In the Duke Health web portal, Dr. Shahla says endocrinology captured her heart because it combines medical science with unique challenges. “My passion for solving puzzles drives my deep interest in pituitary disease, the most complex area of endocrinology.” You can read more about Dr. Shahla, her practice and background here.
This is a fascinating discussion about a complex, often misunderstood condition by two of the leading experts in the field you won’t want to miss it. Pseudo–Cushing’s syndrome or non-neoplastic hypercortisolism is a medical condition in which people with this disorder display the signs, symptoms, and abnormal cortisol levels. Common causes can include pregnancy, alcohol use disorder, morbid obesity, polycystic ovarian syndrome, end-stage renal disease, severe major depressive disorder, and poorly controlled diabetes.
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I have two questions about psuedo Cushings for any Endocrinology providers willing to answer.
Is it possible for a patient to have psuedo Cushings (not due to any sort of neoplasm, anywhere) while ALSO having elevated ACTH?
From what I understand, the answer is no.
If I have been educated accurately, a patient with excessive ACTH levels ABSOLUTELY has an ACTH producing adenoma causing the hypercortisolism, regardless of location in the body (pituitary or ectopic) and in this case the patients correct diagnosis could NOT be psuedo.
The reason I ask is this:
I am a Cushings Disease patient.
During my own diagnostic odyssey, more than one Cushings specialist I met had agreed that my case was pseudo (due to severe anxiety/psych issues)
Here’s the thing I cannot understand even years later…
AFTER 10 months of serial testing both acth and cortisol with very elevated results, after confirming I also DID have two pituitary microadenomas, their opinion that my case was Psuedo did not change.
Some important context to note:
Results showed ACTH between 75-104, reference range of 0-60 (pre treatment of course)
& LNSC (salivary 11p-12a) results from 0.76 to 1.10, 1.15, reference range of 0-0.09)
With these test results in mind (nothing mild about my results)
1. Is it even possible for my case to have been psuedo? (as I understand it, the answer is no)
2. If the answer to Q1 is No, is there ANY known reason (valid or invalid) a Cushings/pituitary specialist would refuse to diagnose pituitary Cushings Disease when the evidence clearly indicates such?
I really am desperate to understand why this happened. because the research says it’s not possible and yet they insisted that was exactly right.
Another reason motivating me to understand: after joining support groups, I met patients from around the world living in various countries who were told the same thing (but also had very elevated biochemistry results) and yet they too endured delays in their own diagnosis due to it.
Perhaps, it IS possible and I am unaware?
Or is there some reason this would be their opinion despite a plethora of evidence suggesting otherwise? Even if the reason is nonsensical, I am desperate for an answer.
I’m trying to understand if these two reputable Cushings Specialists I met with definitely knew better and despite knowing better, still refused to diagnose my pituitary CD?
I just cannot fathom that is the case…
Why?
What in the world would motivate any specialist to knowingly refuse to diagnose a patient with this disease?
Is there a valid reason? An invalid reason? Any reason at all?
THANK YOU 🙏🏻 I appreciate your candor