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.
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.
Hi - ok...so I have Kaiser HMO - hard to change Dr's but he is willing to work with me and he is also associated with UCLA so I am sure he is getting advice from some good people. He is the only endo that actually listens to me - at least about my thyroid/autoimmune. So we will see what he says when we get the results.
So, with the saliva test...I did not rinse, I did not touch it at all, I did not eat for at least 2 hours prior and I did that test at midnight on Monday, turned it over to the lab yesterday. I did the 2nd 1 mg dex supp last night at 11 and blood this morning at 8. All these tests are being sent to Quest this time, my endo got special authorization to send them outside of Kaiser. I think what he is trying to tell me is that he thinks there's something making the dex not supp like it should. Maybe from other meds I'm on. That is why he is repeating the test, after a 3 week washout.
I have been reading your posts/answers for a couple months now and I see you have been through so much! I am hoping that my high cortisol is not a tumor. I am afraid of surgery, I don't want to be on steroids the rest of my life. I just want to fix it! If only it were that easy!
Are you saying that the dex test is used to pinpoint the source? By doing the salivary, will he rule out pseudo cushings?
Thankfully, recently the latest papers coming out are debunking the pseudo-Cushing's stuff... sadly, it is very poorly named so docs tend to latch on to it thinking it is more sub-clinical when it is actually, if you read about a full blown case but the source is alcohol or depression. All forms of Cush are classified by source - *Syndrome* covers everything and primarily also means adrenal source. Disease only means pituitary source. Pseudo is only alcohol or depression source. Ectopic is a lung tumor or can be a tumor anywhere in the body. So the doctor actually has to do a LOT of work to determine source. Pituitary is most common. Adrenal is next - then ectopic - pseudo is actually not very common and a recent paper said it does not exist. Doctors however tend to interpret the pseudo as false and just say you have FALSE and think you have nothing - which is just totally and utterly wrong wrong wrong... it so pays to see an expert.
Quest BTW is not a specialty lab - Esoterix is - so just going to Quest (who BTW regularly messed up my testing and for others) is not a guarantee of getting good results... sorry! Medications can mess up the tests very much... make them higher or lower.
While surgery seems super scary (had 12) pituitary was one of my easiest... as long as you have a great surgeon all will be will. If you have a good surgeon, you can often wean off. I am on mine as my adrenals are gone.
Salivary tests are to find the cortisol. The 24 hour urine test if it is HPLC method (the cut off is 34) and the low dose dex rules it out (ha ha - most people I know flunk this test and have real Cushing's anyway!).
I want to second rumpleds recommendation that you have to test, test and maybe test again.
Some tests/labs just aren't done right. Some tests can be influenced by other medications you may be taking. Some tests can be influenced by time of day, fast vs non-fast, there are many variables.
I had a lot of testing done. Some tests were low normal, some were slightly high. I had to keep asking for more tests after posting my questions here and finding out that what I had done wasn't sufficient.
In my case I had an adrenal tumor that was producing excess cortisol, but it wasn't producing it all the time, so the effects of the excess cortisol were "sub-clinical". I didn't have a lot of symptoms suggestive of cushings syndrome, but even a "little" extra cortisol isn't good.
So out came the adrenal gland and tumor, and I want to tell you that it was an extremely easy surgery to have. I was out the next day (maybe a bit soon but that's me).
I've been tapering off the hydrocortisone replacement for about a month so it doesn't always have to be a life long replacement--unless you lose both adrenal glands.
Hi. I just emailed my endo to see if any results have come in although it's probably way too soon. I have an appt. with him Monday morning and will keep you posted. He really does seem to want to help find out what is wrong. He has been my endo for over 3 years and he has done a lot more than my other ones did. So with help from this board on what I need to ask him to do, I will keep on him until we get to the bottom of it and fix it. When my cortisol used to be just high (25 serum at 8 am fasting) I felt bad, but now it's 41 at 8 am fasting. With that, the high UFC's, the high dex supp tests, I mean it all points to Cushings. I also wanted to ask you about adrenal tumors. My dad has a pheo, I heard they are genetic. Could a pheo cause Cushings? I am just wondering if I may have that? My sister, mom, gramma and dad all have thyroid and autoimmune issues so I have a feeling that all of my problems are genetic.
A pheo causes pheo - Cushing's is a separate disease. You guys should go to NIH with all the adrenal issues!
Auto-immune diseases run in families - but from what I know, it is not well studied as like you, I have the thyroid issues in several generations and an adrenal tumor in another generation etc but the docs just ah - dismissed it for the Cushing's. I do know a couple of families where it is the dad and kids and they are studying it so hopefully something will come of it but it does not seem to be typical.
Autoimmune definitely comes in families and once you have one, you get more! If you have Cushing's, please find an expert to treat you - seek out a neuro-endo and get the best surgeon! It is super important.
Hi, My endo had to cancel my appt. for today because he does not have all of the results back yet (he only has results for the 2nd dex supp test, still awaiting saliva). This is what he emailed me today:
My staff will contact you to get you in on July 26th at 10:30. Regarding labs, the only thing we have back is a serum cortisol which is similar to the last test you had, above the level of normal. We like to see it below 2 and yours was at 4.8. The other tests are not back. Your Free t3 was a little towards the low end, as I suspected, and your reverse T3 was still high, this is likely all occurring from stress (possibly through cortisol) or other stress mechanisms. We could try an increase in T3 from 5mcg two times per day to 10mcg in the AM and 5mcg at noon and see if you feel any different with this. I was going to discuss with you at your visit but we have had to keep pushing them out. You can do this now and that way we can see if has had any effect on you before your visit.
Now, if the saliva test comes back high, would that mean I truly have Cushings? I have a lot of stress but I have read that the cortisol levels on stressed patients always suppresses so I am confused. I just want to make sure that the cortisol is not stress related.
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?
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!
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.
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!
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?
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 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.
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.
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?
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.
Hi. I still do not have my CBG test result back but this is what I have so far and I am very frustrated:
We have a normal ACTH level. Slightly elevated insulin level but normal blood sugar, this could indicate mild insulin resistance, not significant but could be associated with the development of pre-diabetes in the future. We have one Quest result back, they did a Free Cortisol level which was mildly elevated above the normal range. We do not have the binding globulin back yet, but I will have my staff check into again. I do not think the mild elevation is significant especially with a normal ACTH level. The ACTH is in the normal range.
The normal range for free Cortisol is 0.07-0.93 Your free cortisol level was 1.03 mcg/dl
So, if I have had 2 dex supp tests that only supp to 4.1 and 4.8 and high cortisol tests and still another high (only slightly) cortisol what do I do? If the ACTH is normal that just means it's not pituitary, right? Isn't my insulin resistance caused by the high cortisol since I eat 40/30/30 and work out with weights and cardio 4-6x week? It cannot be from the diet and exercise, I have been eating and working out like this since 1990. Do I need to add metformin or will nothing help me until the high cortisol is resolved? Also the testosterone is low but is that just because I am on yasmin? I have been on bc pills for 22 years but my gyn will not allow me to stop because they have had to do surgery to remove scar tissue from endomitriosis and they claim if I stop the pill it will come back. I am so confused and frustrated! Any thoughts?
No vacation. I moved and did not have internet... I had it in my *status*... sorry for the delay.
Normal ACTH - eh... I had normal ACTH levels and mine was pituitary. Normal ACTH can still mean something - it can mean the source is adrenal so just because the ACTH is normal does not mean nothing is not going on.
Your morning cortisol is elevated. Your testosterone, I think is low - that is typical! So is high cholesterol etc.
I don't think your doc knows Cushing's. It takes a LOT of testing. It can be subtle.
I had a normal ACTH result also. And many normal cortisol tests, and some slightly high cortisol tests. I didn't suppress to their magic number of 1.8 to 100% rule out cushings syndrome, so more testing.
I agree with rumpled, it takes a lot of testing. Of course, I had high suspicion of increased cortisol secretion because I had a big old tumor on my adrenal gland and that was hard to look past.
Point is, even with a secreting tumor on my adrenal gland, I was sometimes in the normal range for cortisol, and I would have even been considered low on one of my tests, but the fact remained I had a secreting tumor.
I don't think, and neither did the doctors, that I exhibited any of the classic symptoms, but even a little too much cortisol can start to create havoc in your body. It was just a matter of time in my case. But you are starting to exhibit physical signs of cushings, I think you said you had the fat pad on your back?
What do you do? Be persistent. Ask your doctor what effects excess of cortisol has on your body, and if he says not much in your case because it's a small increase, get a second opinion, third even if you have to. There is a reason it's higher than normal, and it will eventually take its toll on you.
The cortisol binding globulin came back high as I suspected, the level 71 mg/ml (19-45 normal range). This would explain the higher level of cortisol in the blood, with normal urine cortisol levels since the urine picks up free cortisol not the bound cortisol. I think we should continue to monitor doing periodic testing to see if there is some progression or change in labs.
My UFC's were:
Aren't the last two considered high?
The endo told me that the CBG is actually good to have because that means that the high cortisol is not going to damage me. I find that hard to believe. Thoughts?
I have heard CBG - after all it binds - interferes with testing - but I never heard it impacts the person as in you are ok because it is higher so I think his conclusion is flawed... so I would take your tests and find another doctor.
That is what my family says too (find another doctor). It's hard because I have Kaiser HMO, don't really have extra money to spend on private practice doctors right now. I am trying to find info on CBG so I can prove him wrong. I can't find anything so far. I am not giving up! I will keep all of you posted :-)
PS- when I emailed him back and said that there has to be something he can do about the high cortisol and high insulin because it made me gain weight and I cannot lose it no matter what I do, he told me to go on Opti-trim to see if I can lose weight on 800 cals a day medically supervised. Of course I would lose weight, which would be mostly muscles that I have been trying to maintain. I know I have already lost some from this high cortisol, I can see it and feel the loss in my legs and arms.
Um, hello dr., at your request I paid out of pocket for a metabolism test that tells me my RMR is 1890 calories a day if I laid in bed all day and didnt lift a finger. Since that RMR test in June, my Cytomel has increased so I am sure my RMR is even higher now. Add in all my activity, weights, cardio, etc and I am burning 3000 to 3500 cals a day. He needs to find out what is wrong and help me fix it. Period! I am just venting....so frustrated. And he wants me to try a liquid diet...so annoyed! Sorry to ramble on.
A low calorie diet? Really? That is just so... *eyahdahg!*
Shame he cannot interpret tests... Keep me posted and yeah, try to find another doc. Try telling Kaiser that you need an expert since there docs have no idea. Do you have an HR rep - the broker? They may be able to to get you to go out of network and get paid.
I just had a plasma blood test and the results came back as 0.6. after takin a 1mg of Dexathesone the night before,whatt does this mean? I did a saliva cortisol test a few weeks ago and it came back extremely high. Please help me to understand what all of this means. Thanks
Your doctor will interpret this as a suppression - a *fail* - however, it can also be interpreted, to an expert, as showing the source is pituitary. It all depends on if your doc uses this as a test of exclusion. I fail all dex tests - but I still had the tumor. I know many like me.
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