I haven't started the testing just yet. I've been tracking my symptoms, trying to get a handle on what signals a "high" for me and what signals a "low." I've started tracking my blood sugar (a sign) as well because some people have normal readings on low days and diabetic-like readings on "high" days. It is also common, I'm reading, for people to confuse a high and a low and actually get them backwards. I'm starting to think that is exactly what I have been doing! I feel like I've been in a prolonged low since I've started watching, but only time and further data will tell.
Here are some of my endocrinologist's words on a page about how to do a specific test:
"If you have cyclical or periodic Cushing’s disease, it is often challenging to determine what days are good “test” days, especially when you, the patient, is us...ed to feeling pretty crummy most of the time. The salivary testing process, particularly in cyclical patients, can be time consuming and frustrating.
If you are feeling nauseous, tired, achy, or slightly depressed, you may not have a
positive testing outcome. Instead, pick an evening where you are feeling awake after
dark. If you are experiencing bloating, acne, anxiety, irritability, weight gain, are unable to sleep and feeling manic you will probably have a more favorable outcome. Some people find that testing when they feel highly alert works, while others find it best to test when they are feeling normal. It may take a while to learn your cycles, so do not be discouraged if you do not produce positive results right away. It often takes people weeks or months to accurately diagnose their cycles. For this reason, we suggest keeping a diary of how you feel when you do each test. In this way, if we get an abnormal result, we can ask you to do further testing at times when you feel the same and perhaps expedite getting more abnormal results to back up your diagnosis."
"If you have cyclical or periodic Cushing’s disease, it is often challenging to determine what days are good “test” days, especially when you, the patient, is us...ed to feeling pretty crummy most of the time. The salivary testing process, particularly in cyclical patients, can be time consuming and frustrating.
If you are feeling nauseous, tired, achy, or slightly depressed, you may not have a
positive testing outcome. Instead, pick an evening where you are feeling awake after
dark. If you are experiencing bloating, acne, anxiety, irritability, weight gain, are unable to sleep and feeling manic you will probably have a more favorable outcome. Some people find that testing when they feel highly alert works, while others find it best to test when they are feeling normal. It may take a while to learn your cycles, so do not be discouraged if you do not produce positive results right away. It often takes people weeks or months to accurately diagnose their cycles. For this reason, we suggest keeping a diary of how you feel when you do each test. In this way, if we get an abnormal result, we can ask you to do further testing at times when you feel the same and perhaps expedite getting more abnormal results to back up your diagnosis."
Here is a world-renowned specialist validating my experience and encouraging me to have patience and continue pushing onward. So that is what I will do! Push onward to a diagnosis, then on to finding the specific cause, then surgery, then recovery and hopefully remission!
Oh I hope they can find a diagnosis and then a cure and remission. That would be so wonderful! I'll keep you in my prayers that you will finally get an answer and get into remission.
ReplyDeleteThanks, Lisa! I'm confident all will work out this time in the Lord's time and way. I even am getting a phone call from a Cushing's patient advocate (trained RN with a big pharma company) that wants to help with the process! We shall see how it goes and I'll try to keep updating. Thank you for your kind words and prayers, they are much appreciated.
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