Confusing Cortisol/ACTH results

Posted by say7418 @say7418, Dec 22, 2024

I have a new Endocrinologist and she recently ordered tests after my first visit. I have had extreme fatigue for over a year, weight gain after gastric bypass surgery, developed high blood pressure, recurring ulcers on my tongue (no where else in my mouth), headaches, overall aches and pains.

On the Dex. Suppression test, my cortisol was 1.8ug/dL. Interestingly, everything online talks about if it is under or over 1.8, no one says what to do if it's right on. My ACTH after the Dex. Suppression was low (< 1.5pg/mL). So she ordered the 24-hour urine and late-night Salivary Cortisol. I got those results today, since it's Sunday, I have not heard my Drs. opinion. All were normal (urine cortisol was 23ug/24hr and salivary was 0.029 ug/dL). However, I drink a lot of liquid and had over 7,000 ml of urine in 24 hours, which I understand is a ton! So I don't know if that could affect the results. All my urine is still yellow, so I'm not overhydrated. My Endo. has also ordered an adrenal CT that is scheduled for next Friday.

I have had more thyroid tests run than I thought possible. My ANA was 1,200 a year ago, but all specific titers were negative. My ANA last week was over 5,000 and the "type" has changed, so my PCP is sending me to a Rheumatologist second opinion.

I do have PCOS and am overweight. So I guess it is possible that the suppression test was just wrong. Does anyone know what it means for mixed results?

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

gretchenmpls | @gretchenmpls | Dec 23, 2024

Hello @say7418, I’m glad you are visiting an Endo that knows of the 3 ‘gold standard’ ways to check cortisol. Typically you’d want 2 tests of any 2 of those you listed to rule out false negatives or positives. In your case, having another dex test wouldn’t be a bad idea. You also want that test done a few days apart from the other tests to ensure it’s out of your system and not impacting other test results.
Because of the high urine output I would talk to your doctor about diabetes insipidus if they haven’t brought it up. You mentioned you had a lot of thyroid tests already. No indication of hypothyroidism?
I’m not a physician but am in remission from Cushing’s Disease and used to work for the Cushing’s Support and Research Foundation. I’m curious why the doctor ordered an abdominal CT when cortisol tests were not positive? Perhaps it’s to rule out other issues on their checklist besides hormone producing tumor. I hope all goes well and it’s a good idea to see what your doctor has to say about the results. You might find helpful information on CSRF.net and/or other questions to ask your doctor. Going through so many tests is tough when you have been feeling crappy and as patients we just want answers. Hang in there and keep advocating for yourself, prepare any questions you have for your doctor and ensure they get answered. Happy holidays!

say7418 | @say7418 | Dec 23, 2024

Thanks for your response. They ordered the CT because the Dex Suppression test was considered positive and the presence of tons of symptoms. She actually ordered it before the urine came back.

Every doctor I have ever seen says I have hypothyroid until they run the tests. Always totally normal. My old PCP was so convinced I had Hashimoto’s that she ran antibody tests three times over two years. This has been the story for over 10 years.