Cortisol testing

[cats87]

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.  

[rumpled]

He should not be using the CBG as an excuse to stop testing. So what if other patients differ - all patients do!

Cortisol eats muscle.

ECL is not the same as HPCL...
"To determine the efficacy of cortisol and its metabolite, cortisone, measured simultaneously by high performance liquid chromatography (HPLC) in the diagnosis of Cushing’s syndrome, we retrospectively reviewed the histories of 29 surgically proven Cushing’s syndrome patients (20 Cushing’s disease, 5 ectopic ACTH syndrome, and 4 adrenal Cushing’s syndrome) and 6 patients with exogenous Cushing’s syndrome. These 35 patients had urinary free cortisol determined by both HPLC and competitive binding methods. The efficacy of the HPLC assay using cortisol alone was equivalent to that of the competitive binding assay; 22 of 29 (76%) patients had increased cortisol. Cortisone also aided in the diagnosis; 25 of 29 (86%) had increased cortisone. Twenty-seven of the 29 (93%) patients had either both cortisone and cortisol (n = 19) or at least 1 of the 2 (n = 8) increased. All 6 patients with exogenous Cushing’s syndrome had suppressed urinary free cortisol, cortisone, and the presence of prednisone and prednisolone. In the competitive binding assay, all exogenous Cushing’s patients had falsely increased cortisol results.

In conclusion, urinary free cortisol plus cortisone determined simultaneously by HPLC added a new dimension to the diagnosis of Cushing’s syndrome. It should be considered when exogenous Cushing’s syndrome is suspected or when only one urinary cortisol test is allowed to be ordered. " (the paper is 1996 so this is not new - so the doc should look through the tests they can order and get the best one! My better docs ONLY order this one.)

I truly feel sorry for that guy's untreated patients! What a *$#(! They may not have symptoms on the outside, but on the inside, their bodies are being destroyed by the cortisol. BTW, 20% of the population has pituitary tumors - I don't know about adrenal tumors.

[cats87]

Hi - I know, right!!! And when I told him I have never had fat on my back he was examining it and said that I have a lot of muscle...what does that have anything to do with it! He noted my edema but I have had that for over 20 years and it's not that bad. He was even telling me that he has patients that are stick thin and have UFC's in the 200's but he does not do anything because they have no symptoms and dont feel bad. He told me that if my CBG is normal than all he can do is continue monitoring everything because they will not do scans until my UFC is 130ish. He told me that 10% of the population has adrenal/pit tumors and that he does not want to remove something that is not really causing the problem. So, he is ordering a lot of tests which is good. And the UFC is done by Electrochemiluminescence (ECL). That is what the lab supervisor just told me. Is that not as accurate as the HPLC?

[upbeat63333]

ha, ha, ha, ha, ha, ha, sorry, but I didn't have any of the "classic" symptoms either.

I had a 4.5cm tumor on my adrenal gland that was secreting cortisol, every now and then, couldn't catch it on tests all the time, so I had some normal tests too, like you. But my UFCs and suppression tests were not.  

You have gained weight on stomach and back, depression, several higher than normal cortisol tests, if I remember correctly.

What more does this endo want? It's not that bad.????.........because it's not happening to him!!!!  I'm glad he is ordering some other tests like ACTH.

[cats87]

PS - I also have FM and CFS for many many years. At least 20 yrs maybe more.

[cats87]

I have other symptoms like the small hump but he said it's not that bad, he said that because I do not have purple stretch marks, no bruises all over, no thin skin, no moon face, that I do not show the classic signs. I have depression, anxiety, stress, asthma, IBS, autoimmune stuff like Hashimotos, Sjogrens, high ANA, high CRP, high ESR, etc. I am going to try to find out what the UFC method is. I am just waiting for his office to call me about the tests, he is trying to find a lab that can do the CBG since he said it's a rare test. They do not do that test at Kaiser. He said Quest does not either but I saw it on their site. I will keep you posted.

[rumpled]

Wait - you had 100 on your UFCs? The range is 138 - do me a favor - look at the test and find out what the method is - look up the number given on the lab's website. HPLC is the most sensitive (such as it rules out most cases that are not Cushing's) so the doctor should order the proper and most sensitive test - why waste pee? (oh that would make a great tee shirt!). Volume means nothing.

So your ONLY symptom is the central obesity? You also have depression, and if I looked carefully at your posts, I could probably pick out other symptoms.  Did he do a full exam? One does not have to have all the symptoms. Did you squat?

The spit test at midnight was not that high - midnight is fine. I did a zillion of those. What you want to show is a loss of diurnal rhythm - in that midnight is high or higher than another time of day. That is not normal.

I hope he orders a ton of tests.