Questions to ask GP & "elevated"/"high" test results

Hi! I'm so sorry to hear you're not feeling well and you're struggling with your weight. It's such a frustrating symptom to deal with! I'm glad you didn't give up and continues to search for an answer. Advocating for yourself is super important as only you know what is normal and what is abnormal for your own body!

I'm in the United States, but salivary cortisol seems to be the go to as a "gold standard" for cushing's testing here. You can also ask for a 24 hour urine cortisol test, that's another test we do here.

I'm a third shift employee so my circadian rhythms and diurnal cortisol patterns are flip flopped. I'm 19 years into being sick and they still cannot diagnose me. I have cyclic episodes and my doctors refused to listen to me when I told them I needed to test during an episode and before MY bedtime between 5-8 am. They ignored me and told me to test at 11pm consistently and never swapped the ranges around for times of day. Well... I finally have some answers now and finally got my doctor to do another cortisol (salivary) test which she appropriately read the results and it was three times higher than it should have been. I have had three elevated 24 hour urine results back in 2014 and all the doctor I saw told me "they're not high enough to prove cushings". I have a pituitary tumor and they refused to take it out without biochemical proof that it was causing issues. They wrote me off as being fat with insulin resistance and PCOS (I called bull on both of those diagnoses!). Now I have elevated aldosterone, elevated cortisol, elevated testosterone and elevated catecholamines and metanephrines levels. All which point to something called a pheochromocytoma, a rare tumor that secretes adrenaline and noradrenaline. And all the other hormones are probably elevated from the tumor pressing on the adrenal gland. That's our thoughts anyway. But anyway, enough about that, they used the salivary, 24 hr urine and serum levels here. I had elevated serum levels multiple times but they told me it was the birth control I was on. I'm not sure if that was truly the case or not but I'm no longer on the birth control. Just something to keep in mind if you are on any form of BC. Ask your doctor if it could be causing false positive results. You may have to stop it for a bit and test again.

I am wondering if you've somehow damaged your pituitary gland in the severe trauma to your brain and skull base.. I'm not sure if that would cause excess hormone secretion rather than cessation of hormone secretion.

There is one test that I am still not sure about as being a standard test to run.. I read mixed opinions. It's a 17OHCS (17 hydroxycorticosteroid). It is a metabolite of cortisol but it is used to test adrenal function. Mine was elevated but two doctors ignored it 🙄 Of course. But maybe read about it and see. The standard testing may be slightly different there!

I hope I didn't ramble on too much!! Please feel free to send me a private message if you want to chat or have any specific questions about my personal journey with this diagnosis process.

Either way I hope you let us know how you fair with future tests and maybe even a diagnosis! Good luck! Take care of yourself and keep in touch!!

Alicia

So sorry to hear all your problems, awful I know.  I am glad thayou have already had a reply.  It erainlysounds as if you need further tests.  If it is Cshngs ther is no poinbt in trying to diet aswi thelevels so high food just goes straight to fat.  You will hopefully get a diagnosis soon.  Please keep in touch.

Dear Broken doll

I understand your frustration with doctora who hinder your diagnosis by non reaction to your tests. It took me 9 years to get a diagnosis, because I was the first "cyclic" Cushings patient to be diagnosed with cylic Cushing in the United States, having 23 doctors to finally do what needed to be done.

I had numerous 48 hour collections of urine, this is testing that will show your cushings, then a dexamethiazone test, and blood tests. Mine would be sky high, the urine and then they would test again and it would be fine.

The only way to get results in getting a diagnosis is to be bold and confront your doctor's with your results on those tests you did.

Research where in your area is a top notch neurosurgeon who is known for his expertise in pituitary surgeries, and try to find a endocrinogist who is known also with knowledge of cushings disease. Your doctor's need to be more diligent and see your symptoms, which all of them relate to cushings and they need to test

You with openmindedness. I pray that you can find doctors who will look at you very closely for cushings. Please keep us posted

with your progress on disgnosis.