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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by bearinthewoods on March 11, 2013, at 13:39:40
I have severe treatment resistant depression (did not respond to ECT, tried all medications in each class and about everything else). Last year in the summer I had a cortisol level test. My level at the time was 33, and the upper limit quoted to me was 19.5. This level was so unusually high they tested me with the dexamethasone suppression test to see if I had Cushing's. I passed the test, or had the standard result of the cortisol being suppressed the morning after taking the dexamethasone.
I was surprised to learn that, especially if you don't have Cushing's (I don't even think I qualify for "psuedo-Cushing's" since I passed the DST) there aren't a lot of medication routes available. Maybe if I whined, but a lot seem very intense. I was also surprised that despite having over 3x the normal levels of cortisol (and low DHEA to boot) it was kind of treated like a non issue by doctors. They more or less told me to just "relax", stuff like yoga, meditation, etc.
I tried a course of Relora at the recommended dose, 750mg (magnolia bark and berberine, shown in a study to reduce cortisol and raise DHEA) as well as 300mg or so of phosphatidylserine daily. I continued this course for probably 4 or 5 months. I was hoping to see a reduction in cortisol, but my level was down to 32 from 33, which I'm guessing is not even statistically significant given fluctuations in the body, time of day, etc.
I am starting to think that I have gotten into a vicious cycle with the cortisol and it is contributing to my non-response to medication. I'm also very concerned that doctors are still treating it like a non issue (they only cared up until I passed the DST). I am running out of ideas on how to treat this and the vicious cycle is I'm very depressed and stressed, don't respond to medication, so cortisol stays high and continues to make me unwell.
I like the sound of Metyrapone, as I am recovering from PTSD as well, but I can barely find any information about it being prescribed in the US. Does anyone know what I could say to my doctor to convince them to go a more traditional route with medications used to treat Cushing's, or is it just too risky/damaging? The only thing I am doing in the meantime is trialing more psych meds (that don't really work) and taking a higher dose of bulk phosphatidylserine.
Posted by Phillipa on March 11, 2013, at 15:28:41
In reply to Chronic elevated cortisol levels - NOT Cushing's, posted by bearinthewoods on March 11, 2013, at 13:39:40
I also had cortisol levels done. First 24 hour urine. Was inconclusive so had the dexamethasone test done also by my endo and did not have Cushions although it runs in my family. Have you visited a site the shows pictures of cushing? To me if dexamethasone was fine I'd say you don't have Cushings. What test said you had elevated cortisol levels? Phillipa
Posted by bearinthewoods on March 11, 2013, at 17:56:51
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's » bearinthewoods, posted by Phillipa on March 11, 2013, at 15:28:41
I don't have Cushing's, sorry if that wasn't clear. I took a blood test the morning after I took that pill and the levels were decreased, so Cushing's was ruled out. What I'm concerned about is that this chronically high cortisol is throwing my body out of whack and perhaps contributing to my level of treatment resistance. I'm in a viscous cycle right now where I can't de-stress and my cortisol levels are chronically elevated - 3x normal for over a year (who knows how much longer before that?) cannot be good for me.
Posted by Phillipa on March 11, 2013, at 21:52:09
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by bearinthewoods on March 11, 2013, at 17:56:51
Yes I did understand this but wanted to know basically how you know your cortisol levels are high another form of testing? Phillipa
Posted by Hugh on March 12, 2013, at 12:58:41
In reply to Chronic elevated cortisol levels - NOT Cushing's, posted by bearinthewoods on March 11, 2013, at 13:39:40
This small study (12 subjects) found that Earthing (also called Grounding) significantly reduced cortisol levels.
http://www.earthinginstitute.net/studies/cortisol_study_2004.pdf
Posted by Wennie on March 22, 2013, at 16:50:42
In reply to Chronic elevated cortisol levels - NOT Cushing's, posted by bearinthewoods on March 11, 2013, at 13:39:40
Hi. I don't have any answers, but I might be in the same boat as you. I am considered "treatment resistant" - over 2 dozen psychiatric medications, 10 rounds of ECT (they couldn't get me to seize correctly, so they gave up.)
We have only recently tested my cortisol levels. I got a call saying they were high and I'm being referred to an endocrinologist. When my prolactin levels were high (due to Geodon, I believe - which I have discontinued) I saw an endo last year, had an MRI - no pituitary tumor. I doubt one has suddenly grown.
If I get anything resembling a helpful answer, I will let you know. Hoping someone here knows something about cortisol and treatment resistance (if there is a proven link, etc.)
Posted by Twinleaf on March 23, 2013, at 13:56:23
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by Wennie on March 22, 2013, at 16:50:42
There are several new articles ( both on-line and through Medscape) which demonstrate that both oxytocin and social support tend to lower cortisol levels; each one will do so separately, but the effect is greatest when both are used.
Perhaps we should be giving ourselves a sniff of oxytocin as we enter our therapists' offices!
Posted by ChicagoKat on March 28, 2013, at 16:42:52
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by Wennie on March 22, 2013, at 16:50:42
I am interested in this as well.
Kat
Posted by brynb on April 4, 2013, at 16:04:52
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by Wennie on March 22, 2013, at 16:50:42
I'd love to hear more about this too; I'm particularly interested in the medication that negates negative emotions associated with the past. Kinda like "Eternal Sunshine of the Spotless Mind," lol.
-b
Posted by Wennie on April 6, 2013, at 20:00:59
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by bearinthewoods on March 11, 2013, at 17:56:51
Well, I have the official result of my 1st cortisol test. It was a saliva test. My lab uses measurements it seems no one else does - and several different places say the conversion math is different - so I can't even look into it more.
What I do know is that the Reference Range for mine, at the time done, is < OR = 0.09 mcg/dL- my result was 1.94 mcg/dL. (So 21.5x upper "normal.) - I called to make sure that the decimal was in the right place. It was.
This has been the only test at this point. Again, we ruled out Cushings for me last year. I'm scheduled to see an Endocrinologist in a month and a half, but he's mostly a diabetes specialist (rural area, take what you can get, it's still an hour away.)
Do you know of anywhere I can ask for info on how my result compares to people with other disorders? The mcg/dL really throws things off.
Posted by Phillipa on April 6, 2013, at 23:46:52
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by Wennie on April 6, 2013, at 20:00:59
Seems most endos are diabetes first then thyroid and the others are all related. Phillipa
Posted by ihatedrugs on May 29, 2013, at 17:14:26
In reply to Chronic elevated cortisol levels - NOT Cushing's, posted by bearinthewoods on March 11, 2013, at 13:39:40
> I have severe treatment resistant depression (did not respond to ECT, tried all medications in each class and about everything else). Last year in the summer I had a cortisol level test. My level at the time was 33, and the upper limit quoted to me was 19.5. This level was so unusually high they tested me with the dexamethasone suppression test to see if I had Cushing's. I passed the test, or had the standard result of the cortisol being suppressed the morning after taking the dexamethasone.
>
> I was surprised to learn that, especially if you don't have Cushing's (I don't even think I qualify for "psuedo-Cushing's" since I passed the DST) there aren't a lot of medication routes available. Maybe if I whined, but a lot seem very intense. I was also surprised that despite having over 3x the normal levels of cortisol (and low DHEA to boot) it was kind of treated like a non issue by doctors. They more or less told me to just "relax", stuff like yoga, meditation, etc.
>
> I tried a course of Relora at the recommended dose, 750mg (magnolia bark and berberine, shown in a study to reduce cortisol and raise DHEA) as well as 300mg or so of phosphatidylserine daily. I continued this course for probably 4 or 5 months. I was hoping to see a reduction in cortisol, but my level was down to 32 from 33, which I'm guessing is not even statistically significant given fluctuations in the body, time of day, etc.
>
> I am starting to think that I have gotten into a vicious cycle with the cortisol and it is contributing to my non-response to medication. I'm also very concerned that doctors are still treating it like a non issue (they only cared up until I passed the DST). I am running out of ideas on how to treat this and the vicious cycle is I'm very depressed and stressed, don't respond to medication, so cortisol stays high and continues to make me unwell.
>
> I like the sound of Metyrapone, as I am recovering from PTSD as well, but I can barely find any information about it being prescribed in the US. Does anyone know what I could say to my doctor to convince them to go a more traditional route with medications used to treat Cushing's, or is it just too risky/damaging? The only thing I am doing in the meantime is trialing more psych meds (that don't really work) and taking a higher dose of bulk phosphatidylserine.I'm currently reading this book and it's helping me understand my condition. I think a lot of my problems may have been caused by hormones or caused a hormonal imbalance leading to treatment resistant depression. Don't let the title fool you. It's an excellent read.
Feel Good Look Younger: Reversing Tiredness Through Hormonal Balance
Edwin Lee
Posted by Beckett on May 30, 2013, at 9:50:13
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by ihatedrugs on May 29, 2013, at 17:14:26
I am just starting hormone therapy for the same reasons. I'll look at that book. Thanks.
Posted by Phillipa on May 30, 2013, at 19:33:16
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by ihatedrugs on May 29, 2013, at 17:14:26
Bioidentical?
Posted by Dr. Bob on June 4, 2013, at 4:57:40
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by ihatedrugs on May 29, 2013, at 17:14:26
> Feel Good Look Younger: Reversing Tiredness Through Hormonal Balance
> Edwin LeeI'd just like to plug the double double quotes feature at this site:
http://www.dr-bob.org/babble/faq.html#amazon
The first time anyone refers to a book, a movie, or music without using this option, I post this to try to make sure he or she is at least aware of it.
Thanks for letting us know about other resources,
Bob
Posted by powerboss on July 12, 2015, at 1:18:38
In reply to Chronic elevated cortisol levels - NOT Cushing's, posted by bearinthewoods on March 11, 2013, at 13:39:40
Hi,
It's been almost 2 1/2 years since this post.
So what is the verdict for the elevated cortisol?Did anyone try and have good results with the Oxytocin?
I'm again in the same predicament myself.
This last happened to me in 1997.
The problem seemed to have resolved itself.
Everything has been relatively fine until I had a minor procedure done at the hospital 2 weeks ago.
I don't know what they gave me but I am back into constant fight or flight syndrome along with depression, even though I'm taking an anti-depressant.
My high cortisol is acting like a diuretic.
I am constantly drinking water but my mouth is dry.
I'm pretty sure that I don't have Cushing's.
I actually had Cushing's Syndrome in 1997 due to too much cortisone that was given to me.
However, based on my current symptoms, this is not Cushing's but I do have high cortisol.
So I am hoping that someone here has found a solution.
Posted by Hugh on July 16, 2015, at 12:02:08
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by powerboss on July 12, 2015, at 1:18:38
Here are some things you might try:
http://www.digitalnaturopath.com/cond/C314241.html
Did you see my post about how Earthing (Grounding) significantly reduced cortisol levels in a small study?
Posted by Hugh on August 3, 2015, at 10:18:42
In reply to Re: Chronic elevated cortisol levels - NOT Cushing's, posted by powerboss on July 12, 2015, at 1:18:38
The link about Earthing and cortisol levels no longer works. Here's one that does:
This is the end of the thread.
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Dr. Bob is Robert Hsiung, MD,
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