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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.
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.
He should be finding a source and treating you!
He should be finding a source and treating you!
Ok, this is what I just received from my endo:
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:
03/14/08: 27.2
08/09/10: 93
06/15/11: 96
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?
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:
03/14/08: 27.2
08/09/10: 93
06/15/11: 96
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 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.
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.
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.
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.
Hi, I am thinking everyone is on vacation right now...I don't see any recent posts from you.
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
Component Latest Ref Rng 8/3/2011
ACTH 7.2 - 63.3 pg/mL 12.4
TESTOSTERONE, TOTAL 5.4 8 - 48 ng/dL
CHOLESTEROL 215 <200 mg/dL
TRIGLYCERIDE 162 /=40 mg/dL
LDL CALCULATED 116 <100 mg/dL
CHOLESTEROL/HIGH DENSITY LIPOPROTEIN 3.2 <4.3
GLUCOSE, FASTING 81 70 - 99 mg/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?
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
Component Latest Ref Rng 8/3/2011
ACTH 7.2 - 63.3 pg/mL 12.4
TESTOSTERONE, TOTAL 5.4 8 - 48 ng/dL
CHOLESTEROL 215 <200 mg/dL
TRIGLYCERIDE 162 /=40 mg/dL
LDL CALCULATED 116 <100 mg/dL
CHOLESTEROL/HIGH DENSITY LIPOPROTEIN 3.2 <4.3
GLUCOSE, FASTING 81 70 - 99 mg/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?
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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.