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Cortisol testing
Hi, I have been undergoing cortisol testing for a couple months. My UFC has always been elevated (since I started testing for it a few years ago). For several years I have had Hashimoto's, Sjogren's, FM, asthma since birth, anxiety & depression for over 30 years, IBS and the list goes on and on. Finally after complaining enough to my Endo, and proving to him that I have gained weight (mainly stomach and back) for no reason and cannot lose it no matter what I do (I had to provide him with RMR test results, which state I have a fast metabolism, food and exercise journals, etc) he started to look into it for me. The UFC is always around 100. He has not given me the results of the last one I did in June even though I have asked more than 5 times. After the UFC test, I did a dex supp test. I took the dex pill at 11 pm and blood draw at 8 am the following morning. The serum cortisol suppressed from 41 down to 4.1. My endo said that was good but not good enough, that it needed to supp below 2. It's been 3 weeks since those tests. Tonight I am doing the salivary cortisol test, and tomorrow night another 1 mg dex supp test. He wants to check the actual dex level to see if there's something that is causing the supp not to fully work. I have Kaiser HMO and they don't normally do the salivette tests. They special ordered the salivette kit for me and I just picked it up. There's no instructions. It's being done through QUEST and theres conflicting information on test prep. Some directions say to rinse your mouth out with clean water and wait 10 minutes before doing the test at midnight. Others do not tell you to rinse. Does anyone know what I am supposed to do? Nobody at Kaiser is familiar with the test. Also, can my thyroid problems have anything to do with cortisol problems? This is what the endo emailed me about my thyroid tests: "As far as the reverse T3 is concerned, it is high, again this is found in "stressed" states, it is part of a "sick euthyroid" process with is a stressed state causing the shift. Chronic "sick euthyroid" conditions are not well described like acute sick euthyroid. We are still waiting for the free T3 level to come back.". We initially found the high RT3 over a year ago so I added cytomel in May 2010. I take it 2x a day and cant even feel it like most people say they do. I could easily take it and fall right asleep. Could all of this (cortisol/thyroid/autoimmune) be related? I take the following meds: levothroid 100 mcg 1x day, cytomel 5 mcg 2x day, wellbutrin 150 sr 2x day, famotidine 40 mg 2x day, yasmin, hydroxyzine, green tea, vitamins, some days I take motrin 800. I ocassionally use an albuterol inhaler and about 1x a year, when I have a bad asthma flare, I have to do a 4 day round of prednisone, not enough to cause elevated cortisol. Any help would be appreciated. Sorry for the long post. Thank you.
Best Answer
Appointment went as well as it could today. Apparently he cannot rule out Cushings. He said that other than gaining weight in my midsection, I have no other visible Cushings symptoms.
He said that he is going to be ordering a lot more lab work because my suppression tests were high. He is going to order a Cortisol Binding Globulin, ACTH, testosterone, lipids, etc. He thinks that I will probably have high CBG and that would mean that my body has gotten used to high cortisol and that would mean it is not Cushings.
So my UFC's I thought were high, he says they are not high enough. These are the results I have:
03/06/08: Serum Cortisol 8 am 34.8
03/14/08: volume submitted 3225 ml, UFC 27.2 nl, Creatinine 1.68
08/06/10: Serum Cortisol 8 am 41.4
08/09/10: volume submitted 3000 ml, UFC 93 nl
06/15/11: volume submitted 3200 ml, UFC 96 nl
06/16/11: 1 mg dex 11 pm, supp to 4.1 at 8 am
07/13/11: 1 mg dex 11 pm, supp to 4.8 at 8 am
07/16/11: Salivary 0.06 mcg/dl at midnight*
*salivary cortisol - I was told to test at midnight. The reference range goes from 08-10 am: 0.04 - 0.56, 04-06 pm: 0-0.15, 10-11 pm: 0-0.09 . There's no midnight range.
Should 0.06 be considered high since I tested that late?
Also, my labwork range for UFC goes up to 138 so I guess I am not high. Everywhere else I have looked says anything over 50 is high. I thought maybe I was submitting too much volume that the tests were not accurate?
I am sooooo confused.
He said that he is going to be ordering a lot more lab work because my suppression tests were high. He is going to order a Cortisol Binding Globulin, ACTH, testosterone, lipids, etc. He thinks that I will probably have high CBG and that would mean that my body has gotten used to high cortisol and that would mean it is not Cushings.
So my UFC's I thought were high, he says they are not high enough. These are the results I have:
03/06/08: Serum Cortisol 8 am 34.8
03/14/08: volume submitted 3225 ml, UFC 27.2 nl, Creatinine 1.68
08/06/10: Serum Cortisol 8 am 41.4
08/09/10: volume submitted 3000 ml, UFC 93 nl
06/15/11: volume submitted 3200 ml, UFC 96 nl
06/16/11: 1 mg dex 11 pm, supp to 4.1 at 8 am
07/13/11: 1 mg dex 11 pm, supp to 4.8 at 8 am
07/16/11: Salivary 0.06 mcg/dl at midnight*
*salivary cortisol - I was told to test at midnight. The reference range goes from 08-10 am: 0.04 - 0.56, 04-06 pm: 0-0.15, 10-11 pm: 0-0.09 . There's no midnight range.
Should 0.06 be considered high since I tested that late?
Also, my labwork range for UFC goes up to 138 so I guess I am not high. Everywhere else I have looked says anything over 50 is high. I thought maybe I was submitting too much volume that the tests were not accurate?
I am sooooo confused.
Your doctor should still go ahead and treat you. Point in time tests sometime just miss the high - and your other tests are not borderline at all.
At a minimum they should continue to test - but really they should send you to an expert and let you get treated.
At a minimum they should continue to test - but really they should send you to an expert and let you get treated.
Hi, My endo just emailed back to let me know the salivary cortisol came back normal, meaning there's no cortisol excess. He said he will share the results with me Tuesday. Now since I have had 2 dex supp tests come back at 4.1 and 4.8 and high UFC tests, doesnt that mean something is going on? What should I do at this point? I have high cortisol so doesn't he have to treat it so that it goes back to normal levels? I am so confused. Thanks!
The ACTH is really needed (and an accurate one at that) to help you know what is going on - shame that they have not ordered them all along.
Just make sure you get a really really good surgeon. A surgeon needs to have a lot of experience. 50 in a year, 500 lifetime. Botched surgery can haunt you forever - so fight the insurance if they do not have a suitable surgeon in network to get paid out of network.
Just make sure you get a really really good surgeon. A surgeon needs to have a lot of experience. 50 in a year, 500 lifetime. Botched surgery can haunt you forever - so fight the insurance if they do not have a suitable surgeon in network to get paid out of network.
Hi. I have done 5 or more UFC's since 2008. So far we have just done the UFC's, dex supp twice and the saliva. No ACTH yet, I am sure since Kaiser is HMO they have a protocol on when they can order the tests so I bet if the saliva comes back high he would order the ACTH and maybe the scans. I will see him in 1 week, I cannot wait to get some answers!
There is no one test that shows Cushing's - but you have had a high UFC (how many?), did not suppress, high serum cortisol (above the level of normal is what, high, right?), so once you get a high saliva, most doctors would say you do as you have more than one type of test that has an elevated cortisol.
This of course, depends on the doctor. So get copies of everything so you can consult another if need be since this doc had no idea how to read the suppression test. Has he run an ACTH - and tests to confirm source?
This of course, depends on the doctor. So get copies of everything so you can consult another if need be since this doc had no idea how to read the suppression test. Has he run an ACTH - and tests to confirm source?
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First of all - the dex suppression test (which is a test I personally hate - it should be a test of location, not exclusion) you actually PASSED not failed - the cutoff is 3.8 - so you effectively told most doctors that have no skill that you DO have Cushing's... if you came in under 2 (or under 3.8) that is failing the test... so your doctor is???
As for the saliva tests DO NOT RINSE or do anything within 30 minutes of the test.
Cortisol issues can cause thyroid issues. Immune too.
You need a pituitary doctor. You need a smarter doctor than you have - get copies of what you have an move on, please.
I have information in the health pages that may help you. I had Cushing's - it is a bear.