April 22, 2020 at 1:57 pm #6698TopazParticipant
I am a new member and your stories have made me emotional to find people who have had such similar experiences.
My endocrinologist agrees I have all the symptoms but says I cant have cushing’s because :
1. Your cortisol never tests in the normal range ever.
They first tested my cortisol via blood test 4 years into the disease and the test came back the highest of the normal range.
Four years earlier I gained 70lbs in 4 months with no change in diet after a normal of being in great shape. I got the face and the fatigue and the sudden blood sugar issues and everything else Etc. Could it have spiked high and gone down or once you get the disease does it always stay high?
2. Cushings never goes into remission.
I had it severely from 19-25, then it flared back up from 37-44. The endocrinologist says I cant have it because it never goes into remission. Once you have it you always have it.
I have been seeing doctors weekly for the last 6 years and other things have been excluded. Of everything we have looked at Cushings seems to be the most dead on match. However my doctor says I dont have it due to the two things above. Can this group weigh in on those two things?
If he is right, I want to move on. But, my gut tells me he might be off on this one. I am very tired. Any feedback would be helpful. Thanks.April 22, 2020 at 2:37 pm #7000Leslie EdwinKeymaster
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First of all, there is definitely a diagnosis of “cyclical Cushing’s” which could be described as “coming and going”. Cortisol is cyclic by nature, so some other doctors see this as a term that gets used for different types of hypercortisolism like pseudo-Cushing’s, episodic Cushing’s, etc. Not everyone tests the same, and it can also be different depending on the source (pituitary, adrenal, ectopic, i.e. some tests are better than others for each one).
A patient with Cushing’s can have a normal cortisol test for a lot of reasons. It’s just not very likely. If cyclical Cushing’s is suspected, the patient will need to track their symptoms and test when they’re feeling the worst. I have not read anything in the literature about cyclical Cushing’s taking a decade-long break but that doesn’t mean it “can’t” happen, I suppose. However, if a patient does numerous tests and they’re all normal, it looks less and less like a Cushing’s diagnosis would be accurate. Still, most doctors will follow up in 3-6 months to do more testing if the patient still reports symptoms.
If you suspect Cushing’s because of sets of symptoms you had during those two time periods in your life and you’re now in a process looking for a diagnosis, please make sure your endocrinologist follows Endocrine Society guidelines for testing. https://www.endocrine.org/clinical-practice-guidelines/treatment-of-cushing-syndrome
It is also possible to experience intermittent or even long-term hypercortisolism from other non-tumor sources like steroid use, sleep apnea, alcoholism, obesity, eating disorders, severe depression, etc. Even if it isn’t Cushing’s, long-term exposure to high cortisol causes damage to the body and needs to be addressed.
Good luck! It sounds like a frustrating journey. We hope you get a proper diagnosis soon.
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