Posted by Elroy on May 22, 2005, at 19:19:45
In reply to Re: Urine Test to Measure Neurotransmitter Levels? » Elroy, posted by 4WD on May 19, 2005, at 22:53:43
Arrrrgggghhhh.....
RE: "My endo said that elevated cortisol does not make you feel differently... he is already assuming the tumor is not active. He said that even if it were, it would not be causing the level of depression and anxiety I described. "
I cannot, absolutely cannot believe that an Endo actually said that!
Have him go to the following web site:
http://boards.cushings-interactive.com/invboard/index.php?act=idx
Tell him to register and then spend a few hours looking through the various stories of agony that are posted there. Have him read of the numerous stories posted there of how HIGH cortisol made these people feel horrible. Not just making them "fat", not just driving their blood pressure off the chart, not just causing numerous physical symptoms that have actual physical pain, but also very specifically anxiety and depression.
Have him specifically read through thepostings at this section (or, heck, print them out and shove them in his face):
http://boards.cushings-interactive.com/invboard/index.php?showforum=28
http://boards.cushings-interactive.com/invboard/index.php?showtopic=12264
http://boards.cushings-interactive.com/invboard/index.php?showtopic=12172
http://boards.cushings-interactive.com/invboard/index.php?showtopic=11996 (especially this one... )
http://boards.cushings-interactive.com/invboard/index.php?showtopic=10431&hl=anxiety
http://boards.cushings-interactive.com/invboard/index.php?showtopic=10541&hl=anxiety
http://boards.cushings-interactive.com/invboard/index.php?showtopic=3375&hl=anxiety
http://boards.cushings-interactive.com/invboard/index.php?showtopic=6206&hl=anxietyOkay, okay... most of these are either full-blown Cushing's patients or people who are going through the Cushing's testing process. But many are not... they "just" have highly elevated cortisol levels.... and still have high anxiety and / or deep depression problems...
Here's another section to (firmly) suggest he read:
http://boards.cushings-interactive.com/invboard/index.php?showforum=80
http://boards.cushings-interactive.com/invboard/index.php?showtopic=10439Have him read about the success stories and how - once surgical intervention corrects the offending tumor problem (and the cortisol immediately drops down), that ALL the symptoms - including anxiety and depression, etc., etc. - immediately go away. Now if the cortisol, the elevated cortisol, wasn't causing those problems, then why do those problems immediately go away when the ortisol is drastically lowered.
How about a quote from a legitimate medical source:
QUOTE: From Cushing's Syndrome - Allan D. Marks, MD - Cushing's syndrome: the clinical signs, symptoms, and laboratory abnormalities caused by excessive exposure to cortisol (or its synthetic analogs)...
Manifestations of Steroid Excess (lists a bunch of stuff here)... Mental changes (glucocorticoid excess): Range from irritability to depression to psychosis... END QUOTE
http://www.cushings-help.com/syndrome1.htm
Note what it says: "Mental changes (glucocorticoid excess): Range from irritability to depression to psychosis.."
It means excess cortisol from WHATEVER cause - that could include from oversecretion caused by a tumor, excessive artificial cortisol (hydrocortisone, etc.) as used for asthma patients or arthritis patients, etc... to "Pseudo Cushings". The latter simply means that there is indeed excess cortisol being secreted, but that it is NOT coming from an offending tumor or a cancer in the body. It coud be due to extreme alcoholism, or from a highly active HIV condition, etc., etc... to include excessive cortisol being secreted due to a dysfunctional HPA axis (in a situation where chronic stress and low-level anxiety has kept the HPA axis overproducing for months or even years and the HPA axis basically "breaks down"... the adrenals keep now think that excess cortisol is "the norm" and when they switch on, they oversecrete cortisol... now I'm assuming that your "endo" is an ENDOCRINOLOGIST. You might point out to him that this is an endocrine problem - whether it's "REAL" Cushings or Pseudo Cushings or whatever... and ask him what he's going to do about it*).
more???.
Dr. Blevins's Book Cushing's Syndrome, Chapter 3, Psychiatric Manifestions of Cushing's Syndrome, Dr. Loosen discusses the differential diagnosis.
QUOTE: "Cushing's major laboratory findings (hypercortisolemia, loss of normal diurnal cortisol rhythm, increased renal ecretion of cortisol and cortisol metabolites and abnormal resistance to dexamethasone suppression) can overlap with clinical depression." In his article, he further states "50% of patients with acute Cushing's suffer from major depression, 18% suffer from anxiety disorder, 7% have bi-polar disorder, and 4% suffer from substance abuse. None had schizophrenia."
"Sonino et al reported that depression in acute Cushing's syndrome was associated wtih older age, female sex, higher pretreatment urinary cortisol levels, relatively more severe clinical condition and absence of pituitary adenoma."
The thing that was interesting is that 79% have anxiety and panic symptoms, but this does not represent a formal anxiety diagnosis." END QUOTEAw, heck, how about some more....
http://wideberthasmessageboard.com/showthread.php?t=28&highlight=denyse
How about Denyse's story?
http://pages.zdnet.com/nana2003/id9.html
http://wideberthasmessageboard.com/showthread.php?t=325&highlight=denyse
QUOTE: I was dizzy for years and at night when I went to bed, i could often hear a high pitched note that would slurr down very slowly and believe me, I thought all of my life was shutting down. I would stand up rapidly because I really felt I was dying because of that slurring note. I heard only a few times that other Cushinoids had this symptoms but not often. One of my first symptoms was anxiety and had no reasons to have this problem. I saw a psychiatrist for years, giving me all kinds of pills for my depression due to Cushing and only later did I find out that the high cortisol in your body makes you suffer from anxiety also.... The high cortisol makes you feel like you have to run for your life because you are in danger and there is nothing going on that is life threatening and this also explains why we cant sleep when we have this... END QUOTESound familiar?
How about "Psychiatric Issues of Cushing's Patients" from the Cushing's Support and Research Foundation? QUOTE: High cortisol levels also can be experienced by the body as anxiety, and insomnia is extremely common in patients on steroids and with high cortisol states. Elevated, agitated mood, like in mania, can also be seen in a minority of patients, and some actually hallucinate and have psychotic symptoms.... END QUOTE
http://csrf.net/CopingAnswers.htm
Okay, so let's grant that your tests all come back (and insist that he use the correct, more updated ones - or go find a more qualified Endo*) and you're clearly NOT a Cushie... well, at least not a regular Cushie. If you have cosnsistenly elevated cortisol, you ARE a Pseudo Cushie... and my response is "So what?"....
All of this information still applies.
Cortisol can and does cause depression and anxiety and even psychosis! Your "personal" elevated cortisol simply isn't coming from a pituitary tumor or an adernal tumor or a small-cell caner excreting ACTH. But is clearly IS coming from somewhere and for some reason. Just writing it off as "coming from your anxiety" is BS. Stress and chronic low-level anxiety may have initially caused the problem, but the elevated cortisol in and of itself is now causing even worse anxiety... or "psychotic depression" as it is sometimes termed).
http://goodhormonehealth.com/symptoms/pseudocush.pdf (Great article... "trouble sleeping, depression or mood swings, anxiety, fatigue and altered mentation ... but lack elevated cortisol production. The psychiatric conditions causing pseudo-Cushing's states ... ")
http://www.endotext.org/adrenal/adrenal18/adrenal18.htm
http://av.rds.yahoo.com/_ylt=A0Je5W.oGZFCtm4BpTGDBqMX;_ylu=X3oDMTBwMjNqdWVsBHBndANhdHdfd2ViX3Jlc3VsdARzZWMDc3I-/SIG=12dsqj29l/EXP=1116891944/**http%3a//www.niaaa.nih.gov/publications/arh23-4/272-283.pdfSo my next question is this. If cortisol does NOT cause anxiety or depression or "psychotic depression" (which seems to be the anxiety form of depression) or psychosis, etc., then why are neuropsychiatrists currently reviewing the use of anti-cortisol drugs like RU486 (for very SHORT-TERM therapy dosings) for anti-depressent / anti-anxiety trials??? And with excellent successes in trials to date (with very minimal to no side effects due to the nature of the SHORT-TERM nature of theprotocol).
Now if your endo's position was correct, that anxiety can cause high cortisol, but cortisol can NOT cause anxiety, then how can all of these trial studies be coming back with such effective results?
This definesd "Psychotic Depression" (soundslike anxiety to me):
http://www.healthyplace.com/communities/depression/psychotic.asp
http://www.psychosomaticmedicine.org/cgi/content/full/61/5/698
http://www.utmj.org/issues/77.1/pdf/Psych77-1.pdf
http://www.psychiatrictimes.com/p040592.html
http://www.namiscc.org/News/2002/Fall/MifepristoneClinicalTrial.htm
http://news-service.stanford.edu/news/2000/november8/ru486-1108.html
http://www2.eclinicalpsychiatrynews.com/scripts/om.dll/serve(* Actually I'd already be looking at shopping for a new Endo as this guy - IMHO - seems to be dangerous. I'd also get a qualified psychiatrist on board and be looking at something to specifically treat the anxiety - Xanax XR or whatever).
ElroyP.S. I still stand by this i if he wants to know for sure if it's Cushing's or not: The BEST test however for determining if it is actual Cushings or "Pseudo Cushings" however is actually a very simple saliva test. It is called the Late Night Salivary Cortisol Test and consists of spitting a certain amount of saliva into provided test tube between 11 PM and Midnite. Cortisol is not secreted at the same rate throughout the day. It begins declining at night (that's what makes you sleepy) and is at a lowest point around 11 PM to Midnite (and somewhat later) and then begins rising again in the morning (that's what wakes you up). That cycle is called the circadian rhythm. People with "regular" Cushings no longer have that circadian rhythm as the offending tumor is "forcing" the excess production of the cortisol at all times. If your levels are definitely within the normal range (not "borderline" or especially not elevated) then there is an excellent chance that you are NOT a regular Cushings.... and then follow up with the combined Dex/CRH Test. During that test you take the dexamethasone every six hours for two days (with it scheduled so that your last dose is at midnite on day 2). Then early on the next morning you go in and have the CRH test performed. Has something like a 95% reliability rating and is better at providing indicators of pituitary versus adrenal. My doctor also had me do a 24-hour UFC (Urinary Free Cortisol) test on day 2 of the dexamethasone phase.
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> First of all, thank you so much for your post. I've been reading Merck Manual and on the web but it's a lot to sift through and take in.
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> OK, will try to provide sufficient detail but keep it simple enough to insure that the main points are covered.
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> > By the way, do you have any of your actual numbers AND the reference range that your lab uses (for example, cortisol is at 276 with a reference range of 20 - 100 for normal range)???
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> My 24hr. cortisol level was 134 on the first test and 178 on the second test a couple of weeks later. Ref range 20-90.
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> > The dex suppression test being borderline is enough evidence to raise suspicions (obviously in combination with the known high cortisol). But the dex suppression test itself does not have a high degree of absolute reliability.
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> > The CRH test is an older test that was done to (hopefully) determine Cushings or not - and to give some degree of an indication whether or not it is pituitary related or adrenal related.
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> They had to order the drugs special and I had to get prior approval from my insurance to pay for the test.
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> I think the endo said it would tell whether the elevated cortisol was from the pituitary tumor or not. His thought was that the elevated cortisol might be *from* the anxiety.
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> > A much better test is the combined Dex/CRH Test. During that test you take the dexamethasone every six hours for two days (with it scheduled so that your last dose is at midnite on day 2). Then early on the next morning you go in and have the CRH test performed. Has something like a 95% reliability rating and is better at providing indicators of pituitary versus adrenal. My doctor also had me do a 24-hour UFC (Urinary Free Cortisol) test on day 2 of the dexamethasone phase.
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> I wonder why my endo didn't do this. Perhaps because he is already assuming the tumor is not active. He said that even if it were, it would not be causing the level of depression and anxiety I described.
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> > The BEST test however for determining if it is actual Cushings or "Pseudo Cushings" however is actually a very simple saliva test. It is called the Late Night Salivary Cortisol Test and consists of spitting a certain amount of saliva into provided test tube between 11 PM and Midnite. Cortisol is not secreted at the same rate throughout the day. It begins declining at night (that's what makes you sleepy) and is at a lowest point around 11 PM to Midnite (and somewhat later) and then begins rising again in the morning (that's what wakes you up). That cycle is called the circadian rhythm. People with "regular" Cushings no longer have that circadian rhythm as the offending tumor is "forcing" the excess production of the cortisol at all times. If your levels are definitely within the normal range (not "borderline" or especially not elevated) then there is an excellent chance that you are NOT a regular Cushings.
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> I don't fit the profile for Cushings except that I feel I have an abnormal amount of belly fat for a person who is 5ft.4 and weighs 116. That could of course be simply from the constant high cortisol level.
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> > I would NOT take any anti cortisol supps (OTC or otherwise) at any time during the time period of any of this type of testing. If you have real Cushings, the positive effect of OTC anti cortisol products would be very minimal (as they cannot overcome the power of the offending tumor)... BUT, if you are borderline, well, one would not want to do anything that would cause a positive result to end up "borderline".
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> I've been waiting months to try Relacore. The whole process of getting these tests done seems to drag on forever.
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> > Cushings is a very serious disorder and one needs to find out absolutely for sure whether or not one in fact has it or not (many doctors unfortunately will try to diagnose it simply by "visual symptoms"... so if you have highly elevated cortisol and a borderline dex suppression test, but don't have the major "usual" visual symptoms, then they declare that you're not Cushings and let it go at that... where in fact Cushings has numerous symptoms and many people do not have the "usual" visual symptoms but in fact ARE Cushings!).
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> > That said, both depression (especially the type more often refered to as "psychotic depression") and anxiety very definitely cause elevated cortisol levels... and elevated cortisol causes increased anxiety and / or depression. Vicious cycle. Also, is very obvious in people who have become treatment resistant.
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> Okay, this is good. My endo said that elevated cortisol does not make you feel differently. He said feeling terrified could increase cortisol but that the converse was not true. Can I tell him Elroy begs to differ?
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> > BTW, there is some clinical information out there that Prozac (and other SSRI meds) actually INCREASES cortisol levels (thereby worsening the situation*). I know that most people go nuts at the idea of benzos, but my psychiatrist put me on Ativan last October (my current problem actually only started last June!), and when that wasn't sufficient she replaced it with Xanax XR (the extended release version), at a low level (1mg twice a day) probably around early December. In addition, she put me on first Ambien and then Restoril as a sleep aid. Usually I would use the Ambien put if I had an especially tough evening, then I would opt to take the Restoril (Actually, now I often can even go without either one and just use Melatonin and Valerain). My main sleep problem currently is that I get up (without fail) between 3:30 and 4:30 AM and frequently have a problem getting back to sleep then... guess what, that's when the cortisol levels are starting to climb up again). In my case, I definitely have the correct circadian rhythm, but when my levels start climbing, they obviously quickly start shooting up above normal which results in that inability to get back to sleep.
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> Exactly. I wake up too early and can't go back to sleep because I have been "injected" with a big whopping dose of cortisol or adrenaline or something.
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> >Anyway, my point is that you might want to talk to your doc - either a psych doc on endo -about getting you on something specifically for the anxiety. I truly believe that the Xanax XR "saved my life" in that the anxiety levels had climbed that tremendously!
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> I have been prescribed Klonopin by my pdoc. I have been reluctant to take it on a regular basis because I was once dependent on Ativan for a long time and because I go to NA for previous pain med abuse and they say Klonopin etc.is a no-no in the program. I've been trying to deal with that and still stay sane (talk about cognitive dissonance) that and have accepted they do not have a clue what I am dealing with. So I have begun to take my Klonopin as directed.
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> > BTW, have you had any similar - or otherwise related - physical symptoms?
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> When the terror peaks, I shake, my heart pounds, my teeth chatter, I start crying and can't stop. This is not panic attacks. I wake up (two hours too early) with a feeling of too much adrenaline surging around in my stomach and chest. I get up and it gets worse over the next half hour. It goes from nervousness to fear - think of a phobic person facing the object of his phobia. Then it continues to build until it's terror- think of having a psychotic person holding a loaded gun to your head. The terror brings on even more anxiety (rumination anxiety). This lasts for a couple or three hours until I completely break down, start to cry and am overcome with horrible despair. AFter crying for an hour or so, I feel marginally better, get up off the floor, try to go on and then it starts to build again. This can last all day. It's pretty bad.
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> Oh, wait, you asked about physical symptoms. I got off track. I do continue to lose bone mass even though I am on HRT and spend a fair amount of time on the treadmill (going hard and fast on the treadmill for 45 minutes will lessen the terror down to fear or the fear down to nervousness). So far no delayed healing or easy bruising.
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> > * QUOTE: Studies at the University of Colorado and Greenslopes Private Hospital in Brisbane, Australia, showed that Prozac (fluoxetine) increases both cortisol and ACTH levels... Research at the Vanderbilt University School of Medicine in Nashville, Tennessee, also documented the cortisol-boosting effects of Prozac. ..
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> I am currently on 10mg Celexa. I can only take small doses of SSRI's - side effects are too intense. I was on Nortriptyline 25mg in addition for about a month. I was better briefly but after 3 weeks, the terror got way worse. Now I'm off the NOrt. Prozac gave me terrible insomnia but the reverse kind. I couldnt fall asleep but once I did, I could sleep 12 hours.
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> > I know that elevated cortisol has a strong effect on the utilization of tryptophan and believe that 5htp - if it in fact does NOT increase cortisol - might be a better choice than tryptophan....
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> I have 5HTP but haven't used it yet.
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> > QUOTE: Why should I consider 5-HTP supplementation?
> > All serotonin used by brain cells must be made within the neurons, since serotonin cannot cross the blood-brain barrier. Therefore, the synthesis of serotonin is heavily dependent upon the availability of L-tryptophan within the CNS. The production and transport of L-Tryptophan from the bloodstream into the CNS can be compromised by several factors including ostress, elevated cortisol levels, vitamin B6 deficiency, and even high dosages (above 2,000 mg) of L-Tryptophan, which all stimulate the conversion of L-Tryptophan to kynurenine, lowering serum tryptophan levels.1-3o END QUOTE
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> > http://www.millnut.com/L5HTP.shtml
> > http://www.smart-drugs.net/ias-tryptophan-article.htm
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> > Well, getting way off topic here.
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> 5HTP might help anxiety? Why, when SSRI's generally increase my anxiety level? I'm only on Celexa now because I'm out of options and it's the lesser of the evils.
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> > I'm going to go out on a limb here - while insisting that proper follow-up testing be conducted - and offer my opinion. I believe that you will test out as non Cushings - or more technically correct as "Pseudo Cushings".
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> > I suggest that as you make the following statement: "... have also begun to have uncontrollable fear or terror in the mornings upon waking. It lasts most of the day and goes away spontaneously at night." That shouldn't be the case with "real" Cushings (though maybe it's an early onset - which is why one should have the testing!).
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> > That SUGGESTS to me that your cortisol levels are following the normal rhythm pattern of declining at night and then rising significantly in the morning (and staying high through the day before once again declining at night).
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> > Sounds very, very familiar to me!
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> Do you feel good at night? I mean does the depression and anxiety lift at some point and then suddenly, miraculously, you feel almost like a normal person?
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> > Please keep updated as to testing done and results of same.... in addition to testing for Cushings, it might be of interest to have tests done for a Pheo tumor. While quite rare (a tumor inside an adrenal gland), Pheo tumors are notorious for producing anxiety. Generally those are accompanied (tho not always) by very high blood pressure. You mentioned "Metanephrines were normal although normetanephrine was high normal"... that sounds like it may have come from a test for checking the possibility of a Pheo tumor. Do you know if that was the case?
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> Metanephrines were tested as part of my 24hr. urinary cortisol test. They also tested for VMA, catecholamines and creatinine. Not sure what these are or why they were tested.
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> I "believe" that in the case of a Pheo tumor that your Metanephrine would be highly elevated....
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> Only slightly elevated, still in the normal range.
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> Again, I can't thank you enough. You must have spent a long time answering my post and I sincerely appreciate it.
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> Marsha
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> > > This is fascinating to me. I also have highly elevated cortisol levels (along with a small pituitary tumor). My dexamethasone suppression test was "borderline." Metanephrines were normal although normetanephrine was high normal.
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> > > My next test is the corticotropin releasing hormone deal where you get injected with a drug and then blood is drawn periodically afterward. I believe this is supposed to rule out Cushings?
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> > > The reason this is so important to me is that my formerly treatable depression has become treatment resistant in the last few years. I have also begun to have uncontrollable fear or terror in the mornings upon waking. It lasts most of the day and goes away spontaneously at night.
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> > > My endoc. doesn't think the tumor is causing the problems but obviously something is going on. I don't know what other tests to ask for - I need to know what tests might conclusively reveal an endocrine problem causing depression/anxiety. I thought of just asking him to test for anything that could possibly be causing this but they tend to take you more seriously if you are well informed when you go in.
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> > > Any advice would be much appreciated.
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> > > Marsha
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poster:Elroy
thread:493827
URL: http://www.dr-bob.org/babble/20050521/msgs/501361.html