Need help about saliva tests
Posted , 3 users are following.
Hey guys!! I'm so glad I found this forum! I was referred to my endocrinologist because of symptoms I was having including buffalo hump, extreme fatigue, extreme muscle weakness etc....so many things. I had blood drawn. My cortisol was normal in AM and very high at night. Did 24 hour urine was told my cortisol was low but noted volume was t high enough which could cause low reading. Now I'm getting ready to do saliva test 2x on 2 nights at midnight. Now can someone explain to me when they do these saliva test at the same time but different days are they looking to see if it's HIGH or LOW to diagnose Cushings and I want to make sure that I don't do anything to mess it up and make it read wrong high or low because I've been in the bed for a month with NO answers that make sense. Can anyone help me as to why these things have been doing this and again what they are looking for whether high or low and what I can do to make sure I don't mess it up. Oh btw my vitamin D was "dangerously" low at time I got these results. They at first thought thyroid and sent for thyroid ultrasound which showed nodules but I will just get checked every 6 months. Thanks for any help and thanks for letting me into your group. I have no support.
0 likes, 8 replies
cycliccushings PinkJenn
Posted
An increased or normal cortisol level just after waking along with a level that does not drop by bedtime suggests excess cortisol and Cushing syndrome. If this excess cortisol is not suppressed after an overnight dexamethasone suppression test, or if the 24-hour urine cortisol is elevated, or if the late-night salivary cortisol level is elevated, it suggests that the excess cortisol is due to abnormal increased ACTH production by the pituitary or a tumor outside of the pituitary or abnormal production by the adrenal glands. Additional testing will help to determine the exact cause.
If insufficient cortisol is present and the person tested responds to an ACTH stimulation test, then the problem is likely due to insufficient ACTH production by the pituitary. If the person does not respond to the ACTH stimulation test, then it is more likely that the problem is based in the adrenal glands. If the adrenal glands are underactive, due to pituitary dysfunction and/or insufficient ACTH production, then the person is said to have secondary adrenal insufficiency. If decreased cortisol production is due to adrenal damage, then the person is said to have primary adrenal insufficiency or Addison disease.
Once an abnormality has been identified and associated with the pituitary gland, adrenal glands, or other cause, then the health practitioner may use other testing such as CT (computerized tomography) or MRI (magnetic resonance imaging) scans to locate the source of the excess (such as a pituitary, adrenal, or other tumor) and to evaluate the extent of any damage to the glands.
Those are answers I hope help you understand. Each test you do is how they evaluate exactly what the problem is, Cushings disease or syndrome and where they need to focus a MRI with dye to see a tumor that is over producing cortisol. Because you probably live in the UK and not the USA the testing may be slightly different. I am a Cushings disease survivor and have a reocurring pituitary tumor that I am having a transphenoidal adenomectamy, that surgery is May 23rd. If you have any questions feel free to ask me. Googling to get information is,also a,way to learn about many issues dealing with Cushings. You are not alone, there are many people that are survivors or are getting diagnosed with this. It is listed in NORD the National Organization of Rare Diseases. Ten in one million are diagnosed with Cushings. I hope things get better for you, the testing will bring results.
PinkJenn cycliccushings
Posted
So I'm guessing from what you are saying that the 12pm saliva sticks on 2 different nights they should be low right? If not low on to the next step right? Also with severely depleted Vitamin D. Can you explain in easy terms I'm so new at this even though I've been reading about this more and more. I'm confused as all get out.
Thanks honey,
Jenn
cycliccushings PinkJenn
Posted
The way that reads above. .the saliva tests at night should show the cortisol level is high at night...I never had the saliva test ever..because in 1989 they did not even have that test yet. This time I didn't do that test either as they found my reocurring tumor because my face was numb.and they did a mri.
They will do the saliva tests, if those high, which i suspect they will be..the next will probably use the dexamathyasone test, where they give you 8 pills you take for 2 days and then have to have blood,taken out exactly at 8 am on morning...they may also require you to do another 24 or 48 hour urine test...
Once they have these test results they will know what area they need to do a MRI with dye on...the pituitary in the cavity in front of your brain for a tumor there on your pituitary. Or they will do a MRI on your adrenal glands...those glands sit on top of your kidney. I have never undergone anything to do with the adrenal glands and if that is the case, hopefully someone else on this forum can help.
Just know that there is support, not just here on this forum, but through NORD the National Organization of Rare Diseases and also through the Cushings Support and Research Foundation where you can obtain a quarterly newsletter with helpful information and it also is,a forum for cushings survivors who share their stories and Web seminars with information from world renowned Cushings specialists..
The vitamin D issue I am sure they are having you take a supplement to rebuild your vitamin d in your system.
Hoping this helps..
PinkJenn
Posted
cycliccushings PinkJenn
Posted
variations of hormones. For many hormones, salivary levels do not correspond to blood
levels and their measurement cannot be recommended. However, for cortisol, there is a
very good correlation between blood and saliva levels. Diurnal rhythm, our inner clock,
tells us when to wake up and when to go to sleep at night. In healthy individuals, the
largest dose of cortisol is released in the early morning. This tells our body to wake up
and get ready for the day.
In people with Cushing’s disease, this diurnal rhythm is inappropriately high in
the evening hours. Cushing’s patients may have high levels of cortisol after the sun goes
down and the rest of the world is ready for rejuvenating sleep. This alteration in the
diurnal rhythm is a very important piece of the puzzle when trying to establish the proper
diagnosis of a patient who is suffering from Cushing’s type symptoms.
Understand that the testing is done to check your levels and why they check them at night or in the morning is how the tests are done. They are also trying to also rule in ir out if you have cyclic cushings, which is what I had in 1989, and that us when you have high or low cortisol with one test and it may show nothing wrong in the next test. This is frustrating as it took them 9 years to diagnose me as back then in 1989 they did not believe in cyclic cushings...I am the patient that changed that view...as they had a special seminar about me in seattle with endocrinologists from all over the world. The saliva test is the test that came about because of me.
Just let them test you, follow the directions as to what they ask you to do carefully do not worry about whether you are passing or failing a test, the tests will show you have cushings...clearly..and as I said if you want to know more...just ask google the same question you asked below and the answer will be there. That is how I got the answer.
PinkJenn cycliccushings
Posted
vicky61456 PinkJenn
Posted
You are talking to the right person in Pam as she lives in the US where they do things slightly differently to us in the UK. You are definitely not alone. That is why I started this forum as there are so few of us it is nice to have support and contact from fellow Cushys. I hope you get some answers from your saliva tests and do keep us informed, we are here to support you.
PinkJenn vicky61456
Posted
I appreciate you!!!