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Dr. Bob is Robert Hsiung, MD,
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Posted by katekite on July 2, 2002, at 21:41:09
In reply to Re: I have Cushing's (too much cortisol) » katekite, posted by jay on July 2, 2002, at 18:32:49
I'm sorry no I don't know about herbal alternatives. The hairy symptom usually applies mainly to women. If you look up "Cushing's" and "symptoms" (or "diagnosis") in a web search engine that would give you information.
Actually I did read somewhere gingko maybe is mildly anti-cortisol, but it's hard to know if that's just someone trying to sell it.
If worried about cortisol, stay away from licorice (licorice teas, candy etc), as that I have read actually increases cortisol.
kate
Posted by katekite on July 2, 2002, at 22:32:32
In reply to Re: Cortisol connection - I'm confused, posted by Emme on July 2, 2002, at 16:19:14
great question -- i spent like 2 days looking this up.
Yes people with depression are often borderline high on the 24 hour urine free cortisol (UFC). Or high for their age and physical health but still in the normal range. They set the normal range widely with this. In Cushing's syndrome, 10% of the time someone who truly has Cushing's will actually test in the normal range. If one samples salivary cortisol or blood cortisol its even worse mixup. If someone tests normal but shows many or serious physical symptoms they should test again later.
If one has physical symptoms but not a high UFC or has a mildly high UFC but no symptoms, and lab tests say its not Cushing's, then it's called 'pseudo-Cushing's'. (an unfortunate name because people don't necessarily suffer less). The main tests are a low-dose-dexamethasone-suppression test (LDDST) and a CRF stimulation test. (I think)
There are many theories on how to differentiate based on physical symptoms, but nothing is reliable. Many people look like they have Cushing's but few do. Most people with high urine free cortisol do have Cushing's. The lab tests are excellent in that they really almost always can differentiate between Cushing's and the high cortisol of depression/anxiety/etc.
So, if you did test to have a high UFC then a couple further tests would be done to rule in or out Cushing's. A regular doctor or psychiatrist would order the urine free cortisol, but if it came back high one would most likely see an endocrinologist to figure it's cause out.
The other things besides Cushing's syndrome that cause urinary free cortisol to be high include critical or serious illness, such as hiv or Alzheimers. A few cases reported of lyme disease or other weird ones.
The more common thing with cortisol in depression is something called 'non-suppression' meaning the cues that normally shut off cortisol release are screwed up, and when the depression lifts all that returns to normal. This is often referred to as 'high cortisol' , incorrectly. Also some people with depression lose their normal daily rhythm of cortisol, so it would be high at times when it should be low. This also would return to normal when the depression lifts.
This is not to say that a subgroup of people with depression etc don't have truly high cortisol (UFC). These are often people who don't respond to any regular antidepressants. These people would go through the tests and be determined to have 'pseudo-Cushing's' and despite it sounding like a fake problem (which its not) anti-cortisol medication would still likely help them (just no tumor to remove).
The medications to treat consistently high cortisol include: cyproheptadine, bromocriptine, ketoconazole, and the new kid on the block, RU486. Also when the CRF antagonists come out in a few years they will probably work too. The downsides of these treatments, and the reason to check urine cortisol before asking for any of them, is that they don't help people with normal cortisol and also can have significant side effects (liver damage, for example for ketoconazole).
Posted by Emme on July 3, 2002, at 7:22:36
In reply to Re: Cortisol connection - I'm confused » Emme, posted by katekite on July 2, 2002, at 22:32:32
Thanks so much for all the info and clearing things up. I do hope your symptoms improve with appropriate treatment now that you've finally got a correct diagnosis. Are they pretty much reversible?
I did a little web surfing and found the usual descriptions of Cushing's. You seem to have found more sophisticated information. Especially interesting that you had psychiatric symptoms showing up beofre other symptoms. Can you recommend any good websites or references for papers/articles with the more detailed kind of information you found? I'm unsure whether to bring up this issue with my doctor at some point and it's always good to have references on hand.
Also, one more (possibly really dumb) question for you and for the board. Do you know if there is any relationship between catecholamines and cortisol?
Based on what I've seen so far it's unclear to me. My internist ordered a 24-hour urine test for catecholamines (logical for the symptoms I had). The catecholamines - and thyroid - came back normal. Just slightly low blood sugar which we'll retest. Anyway, she didn't order cortisol along with the catecholamines, probably because I have no potential Cushing's symptoms aside from psychiatric. Although I wonder why she didn't throw it in for good measure.
Thanks again for sharing all the info.
Emme
Posted by katekite on July 3, 2002, at 11:27:22
In reply to Re: Cortisol connection - I'm confused » katekite, posted by Emme on July 3, 2002, at 7:22:36
Here's a few links:
I found this website helpful, it has a list of links to what's known about psychiatric problems and Cushing's. Not a ton of information that I could find, and many of the studies have very different numbers.
http://www.killerbytes.com/ann/articles.html
If you really have none of the physical signs, no fatigue etc, and your mental health has not worsened considerably lately, then it's pretty darn unlikely. It's rarer than thyroid problems which is probably why its less routinely tested for.
I was only tested for cortisol because we were also testing urine catecholamines (because my blood pressure went up on a tiny dose of ritalin). My pdocs exact words were, "oh yeah, I guess as long as I'm doing that we might as well do cortisol. Not that....mumble mumble mumble" He was very surprised at the result. It was definitely a scenario where he was just throwing it in for good measure. Cushing's can make you more sensitive to your own body's blood catecholamines (thus looking a little similar in some cases to conditions that cause catecholamines to be high).
As far as reversible: it is almost completely reversible if caught fairly early. Cognitive problems (ADD and memory type things) tend to not go back to completely normal, but mood problems and anxiety are supposed to go away for the majority of successfully treated people.
Posted by IsoM on July 3, 2002, at 13:14:57
In reply to Re: Cortisol connection - I'm confused, posted by katekite on July 3, 2002, at 11:27:22
Kate, you're obviously very knowledgable about Cushing's. I've got a question to run pass you.
Many women past menopause will show a degree of this 'buffalo hump'. They often have osteoporosis, thinning hair, fragile skin, etc. Not all these symptoms are necessarily signs of aging. What's the likelihood of a woman showing many of these symptoms but low-normal blood pressure also having Cushing's? My Mom is going to be 80 this year & she has many symptoms of Cushing's but her blood pressure is never high. It says that "more than 50 percent of patients have elevated diastolic pressure, and practically all patients have elevated systolic pressure." Not her. But I've been trying to help her with her other problems. Please don't dismiss this just that she's old. Otherwise, her health & activity is fairly good for someone her age. She's not ready to be put out to pasture yet.
Posted by katekite on July 4, 2002, at 17:30:08
In reply to Cushing's and hypertension » katekite, posted by IsoM on July 3, 2002, at 13:14:57
I just sound knowledgeable because I've read so much on pubmed... but honestly my deep knowledge is slim, not being a physician. So take it all with a grain of salt. When I read things on pubmed its hard to know if it's one person's opinion or the consensus of the whole field.
I don't know off-hand about cortisol and your mom. I did run across a study looking at the hormones of the 'oldest-old', people who were over 100, and they compared them to your average 70 year old, and found differences in the ratios of some of the hormones. ie a particular hormonal set-up might be good for living longer. It was on pubmed. I was looking for stuff on my agegroup so don't remember the details. But certainly means I will be aware of hormone levels now, my whole life.
Sensitivity of body tissues to cortisol changes in some people with age and also changes after menopause. Receptor densities change, so it takes more or less cortisol to achieve an effect.
Many older people have borderline high cortisol (in general it tends to increase with age, although some old people still have nice low cortisol), and those higher individuals tend to have a higher amount of dementia vs. individuals who happen to have lower cortisol. Is your mom foggy and forgetful or sharp as a tack? If the latter, high cortisol is less likely.
High blood pressure definitely does not have to accompany other signs of Cushing's. It is a clinical picture so the signs can be one or many. I think it must be that different genetics means cortisol has different affects in each individual. We are all individuals.There is no reason to accept that since someone is aged that any change is less important.
My own grandmother had something that looked quite a bit like a buffalo hump, and it turned out to be that osteoporosis had allowed her spine to sag some -- she got shorter and got a bowing of the spine. She was on calcium but needed much more, it turned out. I'm not suggesting that your mom has osteoporosis or curvature of the spine -- just saying there are probably other reasons for that humpback look as well -- curvature of the spine and cushing's are the two I know of.
Hope that helped. Don't really know much about buffalo humps specifically.
kate
Posted by IsoM on July 4, 2002, at 22:21:31
In reply to Re: Cushing's and hypertension, posted by katekite on July 4, 2002, at 17:30:08
My Mom definitely has osteoporosis. She used to be 5'7" but is now only about 5'3". She has a apple-shape with thin arms & legs. Still, I'll mention to her doctor about checking her cortisol level. She is foggy & absent-minded, not senile by any means, but often very forgetful & she denies that she is. Plus she's awfully anxious & is a terrible worrywart. It's worth checking.
Posted by Emme on July 5, 2002, at 10:59:14
In reply to Re: Cortisol connection - I'm confused, posted by katekite on July 3, 2002, at 11:27:22
Hi. Thanks for the links. I'll check it out and see what's there.
> If you really have none of the physical signs, no fatigue etc,
Well, okay, I have had lots of fatigue on and off all along. Diagnosis BPII. Of course I know it's hard to separate the effects of sedating meds from the fatigue of depression, etc. I'm really sensitive to caffeine and stimulants in general, though I can generally handle a decaf coffe or some green tea. My anxiety symptoms have prompted testing my thyroid on several occasions. So...
> then it's pretty darn unlikely. It's rarer than thyroid problems which is probably why its less routinely tested for.
I believe it's pretty unlikely, but I'll ask my doctors if we should test for it just to cover all the bases and see what they have to say. Maybe it's something to keep in mind in case anything takes a real turn for the worse.
> I was only tested for cortisol because we were also testing urine catecholamines (because my blood pressure went up on a tiny dose of ritalin).
I wish mine had done the same just to be done with what I know is a slim possibility.
> Cushing's can make you more sensitive to your own body's blood catecholamines (thus looking a little similar in some cases to conditions that cause catecholamines to be high).
Huh...very interesting.....
> As far as reversible: it is almost completely reversible if caught fairly early. Cognitive problems (ADD and memory type things) tend to not go back to completely normal, but mood problems and anxiety are supposed to go away for the majority of successfully treated people.
How long have you been treated for the high cortisol now? Do you feel improvement in all your symptoms? Thanks again for sharing the knowledge.
Emme
Posted by cybercafe on July 5, 2002, at 15:07:01
In reply to Re: Cortisol connection - I'm confused, posted by katekite on July 3, 2002, at 11:27:22
>
> I was only tested for cortisol because we were also testing urine catecholamines (because my blood pressure went up on a tiny dose of ritalin). My pdocs exact words were, "oh yeah, I guess as long as I'm doing that we might as wellHey that's cool :) ... how often do docs actually test for monoamines in blood and urine ? ...
i am always reading reports saying that you can get ideas by looking at blood HVA MHPG 5HIAA .. but i don't often hear about it being done in real life
Posted by NikkiT2 on July 5, 2002, at 16:27:15
In reply to Re: Cortisol connection - I'm confused, posted by cybercafe on July 5, 2002, at 15:07:01
My doctors are referring me for cushings tests.. I have a form for the urine test I have to take to the hosptial.
Could anyone tell me what the urine test involves? I was told its a 24 hour test but don't know what that entails.
I match all the symptoms (including my hump!!) so am really hoping to get a diagnoses and hopefully some treatment to help.
Ta
Nikki
Posted by Emme on July 5, 2002, at 16:52:40
In reply to Cushings, posted by NikkiT2 on July 5, 2002, at 16:27:15
It's a piece of cake. They will give you a large container to take home and for 24 hours (they told me morning to morning), you put all of your urine in the container - catching it in a cup and then dumping it in. Then you'll bring the container back to them. They'll give you specific directions, but that's the gist of it. You just need one day, maybe a Sunday, where you don't stray too far from the container...
Good luck with your test and getting a good diagnosis.Emme
> My doctors are referring me for cushings tests.. I have a form for the urine test I have to take to the hosptial.
>
> Could anyone tell me what the urine test involves? I was told its a 24 hour test but don't know what that entails.
>
> I match all the symptoms (including my hump!!) so am really hoping to get a diagnoses and hopefully some treatment to help.
>
> Ta
>
> Nikki
Posted by Zo on July 5, 2002, at 16:56:51
In reply to Re: Cortisol connection - I'm confused » Emme, posted by katekite on July 2, 2002, at 22:32:32
If I am finally feeling well and pretty happy, no mood swings, on Lamictal, Provigil, Dex and Effexor. . .do you think this eliminates the dx of Cushing's or a related condition? I have tested postive for thyroid antibodies, and have intermittent weakness I consider part of CFS. . but that also includes endocrine disorders, so then where are we.Thanks,
Zo
Posted by BarbaraCat on July 6, 2002, at 1:16:02
In reply to Re: I have Cushing's (too much cortisol), posted by katekite on July 2, 2002, at 21:41:09
Yes, I have some herbal suggestions:
- Licorice (the root, not the candy) helps adrenal burnout, an elevated cortisol level malady. Wise Woman Herbals makes a very good liquid syrup brand. Use with caution if you have hypertension.
- DHEA taken in a.m. can help also in that it helps to regulate the diurnal cycling between DHEA/cortisol surge. But a test should first determine if levels are low.
- Siberian ginseng, a great stress adaptogen. Primarily Siberian (eleuthero), although American is OK, just more energizing. Korean (panax) and Chinese are way too speedy and counterproductive for this kind of health issue.
- Maca, a rainforest herb, which seems to regulate all hormone levels. I've been taking it for a few weeks and really like it. It gives me a nice clear and calm energy that supposedly is cumulative. We'll see.There's a saliva test that measures both cortisol and DHEA levels over a 24 hour period. It's alot more sensitive than the blood test and it also looks at DHEA levels. Most of us over 40 have low DHEA and this can contribute to feeling very lousy. A company that does the testing (usually ordered by a naturopath or nutritionally savvy MD)is Metametrix. They have a web site at metametrix.com that y'all might find informative. - BCat
Posted by katekite on July 6, 2002, at 9:49:03
In reply to Re: Cortisol connection - I'm confused, posted by cybercafe on July 5, 2002, at 15:07:01
I think they test very rarely. I don't think they feel comfortable using it to try to direct psychiatric treatment. I wish they would do more research! because it would be nice to have a test to determine what classes of drugs to try, not just go on our subjective symptoms.
Pheochromocytoma is a tumor that produces surges of adrenalin and this what they are usually trying to rule out by the test. Symptoms can mimic panic attacks. Sometimes attacks will be triggerable: like by taking a stimulant. It's an incredibly rare tumor, way way rarer than panic and anxiety disorders.
My pdoc said: everyone probably ought to be tested once in their life.
Posted by katekite on July 6, 2002, at 9:59:42
In reply to Cushings, posted by NikkiT2 on July 5, 2002, at 16:27:15
That's good you are getting tested.
Growing evidence shows Cushing's often starts in a cyclical or intermittent way, meaning the urine free cortisol test can be normal and someone can still have it. Also people with confirmed Cushing's can still go into the normal range on 10% of their tests.
I read a case report of a teenager who suddenly had the onset of Cushing's symptoms, but always tested normal. She got so bad as to break bones from osteoporosis. She never tested abnormal but ketoconazole made her feel much better. She must have become over-sensitive to cortisol somehow, so that a little was still too much.
I'm not trying to scare or anything here.... Just if you happen to test normal, don't be totally convinced that you have to look elsewhere for answers, since you say you have lots of classic symptoms. The thing to do if you happen to come back normal would be to see an endocrinologist so that you have an expert following you, and consider retesting or doing salivary testing if the endocrinologist thinks its warranted.
Let me know what happens! -- kate
Posted by katekite on July 6, 2002, at 10:05:48
In reply to Re: dumb question » katekite, posted by Zo on July 5, 2002, at 16:56:51
I don't really know. Since you have a thyroid problem you should have an endocrinologist. Or maybe saw one at some point. They would be the best person to ask. I do know that Depakote has been tried in some patient's with Cushing's and been effective in a few to normalize cortisol -- you never know just exactly what your meds are doing...
Many people have Cushing's for years and years before it's ever diagnosed. It may wax and wane and may be affected by meds in both good and bad ways.
Kate
Posted by katekite on July 6, 2002, at 10:13:17
In reply to Re: I have Cushing's (too much cortisol) » katekite, posted by BarbaraCat on July 6, 2002, at 1:16:02
There's a big distinction between adrenal exhaustion (too little cortisol) and high cortisol.
Too little cortisol can cause symptoms like Addison's disease: exhaustion, aching muscles and joints, nausea, low appetite.... Many people with CFS have low cortisol levels.
I'm not sure about the rest of the herbs but I read that licorice increases cortisol. People with high cortisol should stay away from licorice. On the other hand it might make someone with low cortisol feel better.
I've heard pretty good things about the salivary tests. It seems risky to experiment with potential treatments (as if you guess wrong you could make it worse) until one gets tested.
Posted by Iago Camboa on July 6, 2002, at 14:00:16
In reply to licorice, posted by katekite on July 6, 2002, at 10:13:17
Hi Kate,
Now that you are a 'celebrity' and are getting more 'correspondence' than a Cabinet Minister, may I ask a question myself? -- 'How do you feel with respect to Cushing's? Are you confident as to treatment and have you begun to feel any improvements?'
Remember you are for me *one of the best few* and I wish you all the luck in the world...Do take care.
Yours, Iago.
Posted by jrbecker on July 6, 2002, at 15:35:34
In reply to Cortisol connection, posted by jrbecker on July 2, 2002, at 2:21:57
Linkadge, Katekite, and all, thanks for the helpful info on the subject
Obviously, the first step for anyone of us who might be thinking cortisol is a culprit is to get tested to see how high our levels are. However, I'm told that anyone suffering from pseudo-Cushing's (brought on not by adrenal tumors but by anxiety/depression sequelae), the test results will probably register closer to normal or only slightly higher than normal levels of cortisol. In this case, can someone still benefit from Rx meds such as Ketoconazole or are the side effects (i.e., liver damage) not worth the trouble (in terms of the doc's perspective and our own)?
Secondly, how do anticortisols supplements like Phosphatidylserine (PS), Gerovital H3 (GH3)
and KH3 stack up against these prescribed drugs?Lastly (sorry for the barrage of questions), are you anticipating the arrival of Anticort (Procaine HCl) after passing the FDA approval process. Will this new drug be a big step in the treatment arsenal? And when do they expect final FDA approval?
Thanks in advance for all replies.
JB
Posted by katekite on July 6, 2002, at 17:49:14
In reply to any improvements? » katekite, posted by Iago Camboa on July 6, 2002, at 14:00:16
You are so funny Iago. I was shocked to see all the posts for me (although I think Enron exec would be closer than cabinet minister). I guess I have accidently become something of a cortisol expert.
I'm sort of down today... 31 today and my body is visibly disintegrating. I'm in a holding pattern on tests waiting for results. It seems like everything takes a long time. More tests next week. I will share, of course, when the current tests come back. But I'm hanging in there as pituitary surgery carries an 80% cure, meaning if it worked perhaps most of my psychological difficulties would end. Thanks for asking. - kate
Posted by Emme on July 6, 2002, at 20:24:37
In reply to Re: any improvements? » Iago Camboa, posted by katekite on July 6, 2002, at 17:49:14
Happy Birthday Kate. I'm so sorry you are feeling down. Here's hoping that the coming year will bring your body and spirit better health!
Emme
Posted by cybercafe on July 7, 2002, at 4:13:36
In reply to urine catecholamines » cybercafe, posted by katekite on July 6, 2002, at 9:49:03
> I think they test very rarely. I don't think they feel comfortable using it to try to direct psychiatric treatment. I wish they would do more research! because it would be nice to have a test to determine what classes of drugs to try, not just go on our subjective symptoms.
.... i never understood why i presented 14/15 criteria for bipolar disorder and 5 doctors could not diagnose me .......
... so even when stuff is directly in front of the, i find psychiatrist may have some difficulty ...
> Pheochromocytoma is a tumor that produces surges of adrenalin and this what they are usually trying to rule out by the test. Symptoms can mimic panic attacks. Sometimes attacks will be triggerable: like by taking a stimulant. It's an incredibly rare tumor, way way rarer than panic and anxiety disorders.
hey i used to think i suffered from pheochromocytoma.... because my doc told me i suffered from 'Sipples', and when i looked it up on the web it said Sipples was a type of multiple endocrine neoplasia .... but when i went back to him, ... he said it was a sub-type of Bipolar Type II
Posted by Shawn. T. on July 9, 2002, at 0:42:31
In reply to Cortisol connection, posted by jrbecker on July 2, 2002, at 2:21:57
Sorry, I couldn't get that to post as a hyperlink, so you'll have to copy it. Mirtazapine is aka Remeron. That is really exciting news, but I think it warrants some more studies. Particularly, one of a larger scale that compares levels of cortisol before treatment, soon after the initiation of treatment, a week after, two weeks after, a month after, and two months after. This study really needs a follow up, I hope someone with some clout reads this.
Posted by Shawn. T. on July 9, 2002, at 0:46:51
In reply to Remeron shown to reduce cortisol levels, posted by Shawn. T. on July 9, 2002, at 0:42:31
I'd also like to add that I have seen several reports of anxiolytic effects shown from Mirtazapine very soon after the initiation of treatment. I can subjectively confirm this. I would guess that 5-HT2 or 5-HT3 regulates cortisol levels in the body (Remeron is an antagonist at these receptor sites).
> http://www4.infotrieve.com/newmedline/detail.asp?NameID=10451911&loggedusing=M&Session=98474&SearchQuery=mirtazapine+AND++%28noradrenaline+OR+norepinephrine%29&count=56
>
> Sorry, I couldn't get that to post as a hyperlink, so you'll have to copy it. Mirtazapine is aka Remeron. That is really exciting news, but I think it warrants some more studies. Particularly, one of a larger scale that compares levels of cortisol before treatment, soon after the initiation of treatment, a week after, two weeks after, a month after, and two months after. This study really needs a follow up, I hope someone with some clout reads this.
Posted by katekite on July 9, 2002, at 8:54:34
In reply to Remeron shown to reduce cortisol levels, posted by Shawn. T. on July 9, 2002, at 0:42:31
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