![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 23 to 47 of 58. Go back in thread:
Posted by Pfinstegg on October 15, 2005, at 22:20:02
In reply to Re: remeron and cortisol » glenn, posted by Elroy on October 14, 2005, at 21:40:58
Elroy, those cortisol results are very strong and clear-cut. Did you improve a lot clinically, as far as depression/anxiety?
Glenn (hi!), I think that if you are known not to have some kind of adrenal tumor, but still have either high levels of 24-hour cortisol, a high evening salivary cortisol, or DSM non-suppression, these things point towards HPA over-activity. If you suppress totally or partly on the DSM, I think that's supposed to mean that you have not had HPA overactivity long enough, or severely enough, to have enlarged, permanently over-active adrenal glands. That's good, but the overly high levels of 24-hour cortisol could mean you might be moving in that direction- assuming, always, that there is not another cause, like a pheochromocytoma, or one of the other rare adrenal tumors like carcinoid.
Successful TMS is associated with the return of DSM suppression and low evening salivary cortisols. The TMS is very successful for me- but only for about 6-8 weeks, when I need to return for boosters. i haven't had these values checked during my depression-free periods, but I should do it!
I'm wondering, too, why, if Remeron has such a good effect on cortisol, it doesn't have a better reputation as an AD. Maybe cortisol abnormalities are not the only or most important factors, but things we don't know as much about yet, such as glutamate and calcium channel changes, which may be equally, or more, important. I think the HPA axis plays a role in these, too, but I wish I knew much more than I do.
Posted by Elroy on October 15, 2005, at 22:35:50
In reply to Re: remeron and cortisol, posted by Pfinstegg on October 15, 2005, at 22:20:02
RE: I'm wondering, too, why, if Remeron has such a good effect on cortisol, it doesn't have a better reputation as an AD. Maybe cortisol abnormalities are not the only or most important factors....
Personally, I think that is it exactly. We tend to naturally want to wrap things up into neat little compartments. If the latest med being pushed on the doc by a sales rep is an SSRI then every problem that the doc sees suddenly has to do with serotonin deficiencies. It's the old story... if the only tool you have s a hammer, then suddenly every problem starts looking like a nail.I believe that Remeron has such a poor (fair at best) record as an AD simply because of just what you said. Many depressions and anxieties are NOT related to hypercortisol problems (heck, some depressions are caused by cortisol levels that are on the LOW side). Also, often the elevated cortisol can be as a result of the anxiety or depression and not necessarily the cause of it.
So while lowering cortisol levels would be healthy overall (as excess cortisol does a lot of nasty health things way far and beyond what it does to screw us up psychologically), the lowering of those cortisol levels - if that is the case - would likely not "cure" the anxiety and / or depression.
So, like with so many other aspects, Remeron can be the right tool for the right condition(s) at the right time. Otherwise it might be of some help (simply in lowering unhealthy cortisol levels), and in other cases, be of no help whatsoever.
Personally, I find that in situations where hypercortisolism is not a problem, that I wouldbclassify Remeron as a poor AD at nest. I found that it had some slight anti anxiety effects and that it did very little towards boosting any levels of depression.
Posted by Pfinstegg on October 15, 2005, at 22:42:10
In reply to Re: Remeron and Cortisol - Dexamethasone » SLS, posted by Elroy on September 23, 2005, at 13:05:53
Oh, OK. I jumped in and answered without reading much of the thread. Now I realize that some version of PTSD is what everyone is struggling with. Elroy, I'm assuming that you got accepted into a study at NIH because of the slim chance that you might have some kind of benign adrenal tumor?
These other possibilities- short courses of mefipristone or dexamethasone- would really put us at the edge of safe treatment, because we would likely need repeated courses of treatment- and side effects really do become serious there. I had to take dexamethasone for 10 days last year after lumbar disc surgery (to prevent nerve swelling), and it did have a wonderful anti-depressant effect. I was sorry to stop it, but knew I had to!
Posted by Elroy on October 16, 2005, at 18:37:29
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 15, 2005, at 22:42:10
> Oh, OK. I jumped in and answered without reading much of the thread. Now I realize that some version of PTSD is what everyone is struggling with. Elroy, I'm assuming that you got accepted into a study at NIH because of the slim chance that you might have some kind of benign adrenal tumor?
>
> These other possibilities- short courses of mefipristone or dexamethasone- would really put us at the edge of safe treatment, because we would likely need repeated courses of treatment- and side effects really do become serious there. I had to take dexamethasone for 10 days last year after lumbar disc surgery (to prevent nerve swelling), and it did have a wonderful anti-depressant effect. I was sorry to stop it, but knew I had to!
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XActually, no, my original therapist thought that I might be suffering from a form of PTSD but it has since been changed to just GAD. While I had times of higher anxiety levels, I never really had panic attacks either (once I looked into the actual definition of panic atacks, I realized I was just having time periods - anywhere from a couple hours to a full day - of higher anxiety).
Also, elevated cortisol levels (actual hypercortisolism) are frequently found in cases of depression. In fact, I'll go out on a limb here and state that probably more frequently in cases of depression than in cases of anxiety! Almost all of the testing being done with RU-486 (with the purpose of lowering cortisol while "re-setting" the HPA Axis) has so far been done with depression patients.
As to the "repeated courses" of the short-term treatments, I have no doubt that would be necessary for some treatment resistant patients, I have yet to come across study data that indicates that is a necessity for most patients treated with RU-486 anyway. In fact, there's some inference that in many patients a single short-term protocol has resulted in the re-setting of the HPA Axis which then allowed the depression (and one assumes also anxiety) to go into remission.
Obviously most of this study info is so new that follow-ups to ascertain how long the remission lasts, what follow-up protocols are necessary, etc. simply haven't come to pass yet.
Elroy
Posted by 4wd on October 16, 2005, at 22:37:12
In reply to Re: remeron and cortisol - and Xanax.... » glenn, posted by Elroy on October 15, 2005, at 19:49:01
Do you think other benzos such as Klonopin might have the same effect?
Is it possible that just reducing the anxiety (by taking the benzo) itself lowers the cortisol, since cortisol production is a result of increased anxiety? So when you lower the anxiety, the cortisol drops as well?
Marsha
Posted by 4wd on October 16, 2005, at 22:41:59
In reply to Re: remeron and cortisol » glenn, posted by Elroy on October 14, 2005, at 21:40:58
, you might want to check out the link message at:
>
> http://www.dr-bob.org/babble/20050803/msgs/537274.htmlHi Elroy,.
After reading this article, I wonder whether taking DHEA supplements would help anxiety - if the problem is connected with an imbalance in the ratio between cortisol and DHEA?
Marsha
Posted by Elroy on October 17, 2005, at 12:50:27
In reply to Re: remeron and cortisol - and Xanax...., posted by 4wd on October 16, 2005, at 22:37:12
I am not aware of any studies showing that specific effect with Klonopin.
While I am sure that to some extent lowering anxiety levels will help moderate cortisol levels at least partially, it is clear - from this study - that Xanax has a specific anti cortisol effect beyond just its anti anxiety effect.
That is because the clinical study used healthy individuals (a combination of young adults and elderly persons as I recall), and tested their cortisol levels and DHEA levels following administration of the Xanax.
What was interesting was that DHEA-S levels remained unchanged while DHEA levels increased and cortisol levels decreased. That would clearly indicate that the Xanax was performing some type of process of converting the cortisol to DHEA (as otherwise an increase of DHEA-S would be needed to account for the increased DHEA).
Elroy
Posted by Elroy on October 17, 2005, at 13:03:59
In reply to Re: remeron and cortisol, posted by 4wd on October 16, 2005, at 22:41:59
I am not totally sure, but I don't believe so. I think that taking DHEA supplements can help promote a better DHEA-to-Cortisol ration... but doesn't necessarily LOWER existing cortisol levels... (also with the understanding of DHEA supplementation being within reasonable dosage ranges - DHEA can promote androgenic side effects in women and raise estrogen levels in males if taken at higher doses - like 50 - 100 mg daily).
Again, we're also talking about situations here where the patient doesn't simply have high normal cortisol levels from general day-to-day stress, etc., but situation where one's HPA Axis is dysfunctional and creating a hypercortisolism condition. If your cortisol levels were (let's say) twice the normal maximum of the reference range, what would the object of supplementation be? To get one's DHEA levels over twice the maximum of its reference range?
Generally DHEA-to-Cortisol ratio levels become an important issue when one has normal range cortisol but abnormally low DHEA. In those cases supplementation of DHEA (again, done very reasonably) would help re-establish the proper ratio, but whether that would aid in lowering anxiety levels, I couldn't say.
I know that often warnings are given with DHEA supplementation as far as taking it in the mornings as it can be "stimulating" and interfere with sleep. I know that sounds like Tyrosine to me. And I know that taking Tyrosine (in anything above 125 mg doses) increased my anxiety.
I am currently taking DHEA at the rate of 25 mg a day (12.5 mg in the morning and another 12.5 mg in early afternoon). At those levels it has not worsened my anxiety... but it has not improved it either.
Elroy
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X> , you might want to check out the link message at:
> >
> > http://www.dr-bob.org/babble/20050803/msgs/537274.html
>
> Hi Elroy,.
>
> After reading this article, I wonder whether taking DHEA supplements would help anxiety - if the problem is connected with an imbalance in the ratio between cortisol and DHEA?
>
> Marsha
>
Posted by Elroy on October 17, 2005, at 13:24:44
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 15, 2005, at 22:42:10
First of all, a correction....
See: http://www.dr-bob.org/babble/20051017/msgs/568145.html
There was a change in reference range used by Lab and results should read:
Tests in early October 2005:
24-hr UFC cortisol levels: 52 (range 4 - 60)
Late night salivary cortisol: 4 (range "less than 100" - lower than 20 is VG)
As to NIH, well, I got accepted not because of a "slim chance" of an adrenal gland tumor, but because there DEFINITELY is a an adrenal gland tumor present!
It was located by CT Scan in September of 2004 and confirmed by follow-up CT Scan in April of 2005. It was initially assumed that the highly elevated cortisol must be Cushing's from said adrenal gland tumor... but advanced tests didn't corroborate that. My first round of testing (say September thru November of 2004) showed results that were all over the place. Most tended to indicate that it was pseudo cushing's versus medical cushing's... but the couple results that were borderline tended to indicate more likely being cushing's disease rather than cushing's syndrome (i.e., caused by a pituitary tumor rather than an adrenal tumor).
My one endocrinologist is convinced that the adrenal gland tumor is simply an "incidental, fatty-tissue lesion that is not only benign but is biologically inactive".
Anyway, the study at NIH is for all types of adrenal gland tumors. Why are some benign and others malignant. Why do some develop cushing's syndrome while others don't. Why do some develop into pheo tumors while others don't. Why are some simply "incidental, fatty-tissue lesion that are not only benign but is biologically inactive".
Elroy
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> Oh, OK. I jumped in and answered without reading much of the thread. Now I realize that some version of PTSD is what everyone is struggling with. Elroy, I'm assuming that you got accepted into a study at NIH because of the slim chance that you might have some kind of benign adrenal tumor?
>
> These other possibilities- short courses of mefipristone or dexamethasone- would really put us at the edge of safe treatment, because we would likely need repeated courses of treatment- and side effects really do become serious there. I had to take dexamethasone for 10 days last year after lumbar disc surgery (to prevent nerve swelling), and it did have a wonderful anti-depressant effect. I was sorry to stop it, but knew I had to!
Posted by Pfinstegg on October 17, 2005, at 15:53:31
In reply to Re: Remeron and Cortisol » Pfinstegg, posted by Elroy on October 17, 2005, at 13:24:44
Because your situation is a little uncertain, as to whether there may be a physical cause for your hypercortisolism, I think it's great that you will get a really thorough work-up at NIH. My endocrinologist made some inquiries about my doing the same, but I didn't qualify, as everything (physical and psychological) pointed towards PTSD and trauma from csa. Will you be going soon?
It would be so wonderful if Mefipristone just required one treatment course to reset the HPA axis. Since it is "fast-tracked", we should be hearing more information about it soon.
Posted by glenn on October 18, 2005, at 6:44:23
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 17, 2005, at 15:53:31
Just as an interesting addition to this thread, I use xanax in what Dr Shipko calls the "anti biotic method" which sounds a bit like the previous descriptions of steroid use.
That is I take a short course when needed.
Short course means 3-4 days only.
The effect of this can last as long as 3-4 months or as little as 2 weeks, and I actually feel even better on the day I stop the Xanax.
Could it be that the xanax is (temporarily) resetting something, ie the HPA axis.
In my case it must be permanently weakened as a resetting is needed every so often, but xanax has never failed yet, and at a low dose ( 0.375- 0.5 mg)
It is massively more effective for me than remeron, but then again I guess my symptoms were rather strange and not particulary depressive.Glenn
Posted by Elroy on October 18, 2005, at 13:57:07
In reply to Re: Remeron and Cortisol, posted by Pfinstegg on October 17, 2005, at 15:53:31
Will be going in December.
Yes, would be exceptional if most patients would require not much more than one or two short-term treatments with RU486.
Is your endocrinologist continuing testing for cortisol? At a minimum, every two to three months you should have a 24-hr UFC and a late night salivary cortisol (done on the same night that you are doing the UFC), just to see where you're at and to see if a Cushing's condition might be devceloping.
Also, if your endo is convinced that it is a pseudo cushing's situation (i.e., hypercortisolism due to a psychological disorder) has he considered applying for a compassionate use waiver from the FDA through the Feminist Majority? I have all of the contact info if you think that he / she might be convinced to give that therapy a try....
Elroy
P.S. I take it that an adrenal gland tumor has definitely been ruled out in your case?
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X> Because your situation is a little uncertain, as to whether there may be a physical cause for your hypercortisolism, I think it's great that you will get a really thorough work-up at NIH. My endocrinologist made some inquiries about my doing the same, but I didn't qualify, as everything (physical and psychological) pointed towards PTSD and trauma from csa. Will you be going soon?
>
> It would be so wonderful if Mefipristone just required one treatment course to reset the HPA axis. Since it is "fast-tracked", we should be hearing more information about it soon.
Posted by Elroy on October 18, 2005, at 15:08:37
In reply to Re: Remeron and Cortisol- XANAX treatment, posted by glenn on October 18, 2005, at 6:44:23
Really couldn't say. I have been on Xanax XR (1mg x 2 daily) constantly for about a year now and can only note that if Xanax did have any controlling effect on my elevated cortisol that the effect was quite minimal.
I think that unless one is consistently tracking their cortisol level that the reality is that they don't really know if they have a cortisol problem or not.
And if they do have hypercortisolism then advanced testing is imperative to see if the problem is primarily medical or primarily psychological.
It is my belief that if the problem is primarily medical (i.e., caused by a tumor, etc.), then neither Xanax or Remeron is going to provide a salvation. Something like RU486 "might", but then only with long-term usage which opens the door for lots of nasty side effects.
If primarily psychological, then I believe that ultimately medications such as RU-486 (and some other interesting ones on the horizon) might very well be a God send for those conditions that are indeed related to hypercortisolism conditions.
Elroy
X
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X> Just as an interesting addition to this thread, I use xanax in what Dr Shipko calls the "anti biotic method" which sounds a bit like the previous descriptions of steroid use.
> That is I take a short course when needed.
> Short course means 3-4 days only.
> The effect of this can last as long as 3-4 months or as little as 2 weeks, and I actually feel even better on the day I stop the Xanax.
> Could it be that the xanax is (temporarily) resetting something, ie the HPA axis.
> In my case it must be permanently weakened as a resetting is needed every so often, but xanax has never failed yet, and at a low dose ( 0.375- 0.5 mg)
> It is massively more effective for me than remeron, but then again I guess my symptoms were rather strange and not particulary depressive.
>
> Glenn
Posted by Pfinstegg on October 19, 2005, at 7:55:58
In reply to Re: Remeron and Cortisol » Pfinstegg, posted by Elroy on October 18, 2005, at 13:57:07
Yes. I did have a negative MRI. Also, I have OK 24-hour cortisols (40), but have DST non-suppression and high evening salivary cortisols. But you are right - TMS has been an excellent treatment for me; with remissions of 6-8 weeks every time I receive it. I should be going back for DST suppression tests and salivary cortisol checks to see if it has changed those back towards normal during the time I am feeling depression-free. It has been reported to do that when it is successful- and I would like to know.
I wish you the very best during your December work-up at NIH. I hope they rule out all those rare tumors, and also help you develop the best treatment plan for yourself. I wonder whether they will point you towards Mefipristone. Please keep us informed.
Posted by Elroy on October 19, 2005, at 18:00:51
In reply to Re: Remeron and Cortisol » Elroy, posted by Pfinstegg on October 19, 2005, at 7:55:58
To tell the truth, I am about at the stage where I hope that they (NIH) declare that the tumor that's already known to be there (left adrenal gland) is responsible for what's causing the hypercortisolism (and thereby the anxiety and other physical symptoms) and recommend surgical intervention. As part of the study, if surgical intervention is recommended they will do it there for free.
Right now that seems to be the simplest solution to a very complex problem. Otherwise I don't really know what the "game plan" would be. Continuing on Remeron long-term isn't a reasonable option (too many negative SEs). A trial of RU486 would be interesting but the chances of getting one of my several doctors to actually go that route seems pretty remote for now (seeing as it's still in the testing process for psychological disorders)... unless NIH would come up with a recommended protocol - in writing - to try for RU486, something that I could bring back to my docs....
Anyway, it sounds like your problem isn't so much with a dysfunctional HPA Axis that is causing a condition of hypercortisolism (since your 24 hr UFCs have been normal), but more that of an HPA Axis that has caused your normal secretion cycle to go haywire (as in causing your nighttime levels to be high, which means that at some points during the day your secretion levels are much lower than they should be).
I am the opposite whereby my total cortisol levels are quite high but nighttime salivary cortisol tests are low, well within the lower third of the normal range (not in general, but specifically for late night levels).
Well, we will see.
Will be interesting when the Remeron gets stopped here in a couple of weeks. I imagine that insomnia will revert back to being a problem.
Elroy
Posted by Tenifer on October 20, 2005, at 15:18:12
In reply to Re: Remeron and Cortisol » Pfinstegg, posted by Elroy on October 19, 2005, at 18:00:51
Hi Elroy,
I'm sorry I haven't posted until now. Like I said, I type all day and banging out posts is sort of the last thing I'm in a hurry to do. More seriously though, I've been steering clear of boards like these lately as reading all this stuff can really exacerbate my anxiety symptoms. I hope you understand brother. You've been on my mind alot though Elroy.
As for me, well, there are times when I think I'm improving and other times when I feel like I'm sliding down a muddy slope. I've discovered that acupuncture gives me some measure of relief. I've only been a few times but the effects seem to be lasting longer as I continue with treatment. I've just started taking Chinese Herbs to augment the acupuncture but the jury is out on those at present. Still, alot of the indications for this remedy sound like your symptoms. Have a read.
http://www.bluepoppy.com/store/h_mod_11flav_gall.cfm
So as to the Remeron, what symptoms persisted during treatment? You said that "some have stayed as severe", could you elaborate on that? I know it resolved your insomnia but what about the anxiety and other symptoms you presented with?
I still haven't seen an Endo yet. I'm just scared of the allopathic medical community and their assembly-line approach to medicine. Their approach is to medicine what Henry Ford's assembly line was to the automotive industry: get as many patients through the door as fast as possible and collect the most digits. Its all about profits, not patients. What a shame. I can remember when doctors made house calls to visit us when we were kids: It was quality care, not quantity cared for. I know that insurance issues drive this approach today, but I still miss when doctors were physicians and not corporations. The bottom line is that I'm wary of being reduced to a 15 minute nameless insurance claim number. That approach is how I got into this whole mess to begin with. Enough of my rant. I'm sure that I'mm be setting an appointment with an Endo soo to have the UFC and nighttime levels checked. I will definitely keep you posted on that when it happens.
Here's something I can't understand: since they've discovered the tumor, why not have it removed? Is it a matter of insurance coverage? I gotta tell you, if it were me I would be more than a little bit interested in having it removed. To my mind, it doesn't take a genius to see that it is implicated. This is simple cause and effect. Here is something that shouldn't be in your body and something that has been proven to cause the exact symptoms you are experiencing in other people. Just because a test can't determine it is the cause is nothing more than a reflection on the limited effectiveness of the test.
I hope all goes well at the NIH Elroy. Seriously, you will be in my prayers. If it weren't for the loving grace of Jesus in sustaining me through all this, I wouldn't be here now. Lean on Him..He wont forsake you.
May God bless you Elroy and see you to a speedy recovery.
Please keep in touch...BTW, I have a feeling that the NIH will be recommending the removal of the tumor. :)David
YBIC
Posted by Elroy on October 21, 2005, at 0:19:10
In reply to Re: Remeron and Cortisol, posted by Tenifer on October 20, 2005, at 15:18:12
Let's see....
As to the symptoms that have persisted with Remeron, basically all of them - just at different intensities.
When this started (June 2004 severely, but maybe as early as mid 2002), I had the following symptoms rapidly develop:
1. Anxiety (quickly becoming severe)
2. A burning urethra type pain (though not prostatitis in the classical sense)
3. Severely icy cold feet (mainly) and hands (secondarily) - this symptom popped up as just noticeably cold feet in the winters of 2002 and 2003 - interestingly after the start of my mild to moderate anxiety that started in July of 2002. Also had a major cold intolerance overall. It could be 78 in the house and the air condition would come on and the cold air was like a sharp stinging pain.
4. Seemingly in opposite to #3, also developed peripheral neuropathy type of sensations in hands and feet - not any numbness, but a combined burning - tingling -stinging type of "surface pain" (while the severely icy cold type of pain seems to be a "bone deep" type of pain). Neurologists have checked out and doesn't appear to be any type of classical peripheral neuropathy (i.e., diabetic neuropathy, etc.).
5. Bouts of an itchy - rashy type of feeling that will come and go. Might last for a couple hours, might last for a day. Almost like the feeling of wearing a very itchy wool sweater next to the bare skin (I use that example as it mainly comes across the torso - though will also feel it on upper legs also at times.)
6. Abruptly became severely hypogonadal. May have been travelling down that slippery slope for a couple of years, but whatever it was that came on in June of 2004 caused it to go into overdrive. Erectile functioning and libido both wen to like from about an 8 - 9 on a 10 scale to a zero in less than a month!
7. Severe insomnia (this right from the start, hand-in-hand with the anxiety.
9. Tinnitus. Went from non existent (in May of 2004) to mild in late June, to severe by mid July (2004 dates). This was the last symptom to develop.Well, actually, several months later a mild to moderate form of depression has also set in (there should be a rule that you can't have anxiety and depression both, for crying out loud... that's just not right!). But whether it's directly related to whatever is going on or is simply due to the "downer" of the situation dragging on and on is debatable.
As to the doctors, I think that you're right in a lot of cases... but can still find individual doctors who are exceptions and who do care. Also getting the right form of specialist is very important. For an Endo, I had some negative results with my first endo - but then he was a diabetes specilist who really wasn't up to date on hypercortisolism problems (and from his office traffic, clearly got into that speciality as that's where the numbers were at). I then obtained an endo who specialized in Adrenal - Pituitary Disorders and was very well versed in hypercortisolism problems. BIG difference.... But, you know what, he was off in left field somewhere when it came to male hormone issues (TRT - testosterone replacement therapy). After messing around for a year with various individuals (including this 2nd endo) who didn't know what they were doing in that regard, I just recently went to a neighboring state to see a TRT specialist (probably the best in the US).
Anyway, with the Remeron, I noticed a slight lessening of the anxiety. Still had some higher morning levels and spikes during the day, but overall found levels less than BR (Before Remeron).
The burning urethra type of pain has been gradually receding over the last few months (even BR), so I don't know that Remeron has made a difference with it either way (???). It seems to come and go and when it's there, the intensity is much less than it was say 8 - 9 months ago.
The severely icy cold feet pains have seemed to also improved gradually - but barely - over the last few months. Main improvement has been that I don't have as many instances of the cold hands, and the cold intolerance is not as bad as it was the same time last year (I suffered hugely last winter).
Same-same with the peripheral neuropathy type pains. Very gradual improvement over last several months, even BR. Still quite noticeable so times I'm not sure.
Bouts of an itchy - rashy type of feeling seems to have improved quite a bit. Still will come and go, but less frequently and less intensity.
Hypogonadism situation has improved significantly. Expect that to be a thing of history now that I am getting onto a better TRT protocol. As TRT was gradually increased over the same time period of Remeron, hard to say if there was any positive effect, however didn't see Remeron having any negative effects on libido either.
The insomnia completely disappeared with the Remeron. Simply because that's one of Remeron's side effects, its sedating nature.
I think that the tinnitus also improved with the Remeron. Its biggest improvement came when I started on the Xanax last year. Then there was some very minor but steady improvement and then there seemed to be a little bit of a jump in the improvement after going on the Remeron. Mainly noticeable first thing in the morning - and then late at night when it is quiet.
As to the adrenal gland surgery, I'll tell ya' the truth. I am to the point of hoping that NIH determines that said tumor is causing all of these problems and that they strongly recommend surgical intervention. Just because - if nothing else - that's the simplest way out. The problem has been that to this point there simply hasn't been any specific hard data testing to show that the tumor is actually responsible for anything!
Like my endo has said, most people have "incidental tumors" that they go their whole life and never realize. They are benign fatty tissue lesions that are biologically inactive - and are "just there". And the problem is that only in a minority of cases are they able to do an "adrenal sparing surgery" (where they just remove the tumor -and a goodly portion of the adrenal gland). Usually they have to do a surgery where they remove the entire adrenal gland.
As to the similarity of the symptoms, that's the whole confusing thing with the hypercortisolism issue, is that it can manifest itself in so many ways... but from the standpoint of primary symptoms that are more GENERALLY present (from tumor caused hypercortisolism, i.e., Cushing's)....
QUOTE:
Symptoms vary, but most people have:1. Upper body obesity,
2. Rounded face (Moo face),
3, Increased fat around the neck / upper back ("buffalo hump"),
4. Thinning arms and legs
5. The skin becomes fragile and thin and bruises easily and heals poorly.
6. Purplish pink stretch marks may appear on the abdomen, thighs, buttocks, arms and breasts.
7. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.
8. Severe fatigue,
9. Weak muscles,
10. High blood pressure
11. High blood sugar.
12. Irritability, anxiety and depression are common.
END QUOTELet's see, I have none of the first seven. Eight, well, sort of... more like mild fatigue and major lack of motivation. And then I do have number twelve. My PRIMARY symptoms are all secondary symptoms in most Cushing's patients (even with the psychological disorders, most Cushies seem to have depression rather than anxiety - though it's a close split, with many having both).
See also: http://www.duj.com/Article/Vaughan/VaughanTab6.html
http://www.endocrinology.med.ucla.edu/cushing's_syndrome.htm
So when doctors talk about possibly having pseudo cushing's where it is a psychological disorder causing the hypercortisolism by way of a dysfunctional HPA Axis - and that the adrenal gland tumor is possibly just "incidental" and not really doing anything... well, I guess all of this makes me figure I need to listen.
http://www.duj.com/Article/Vaughan/Vaughan.html
The increased utilization of abdominal ultrasound and CT scanning has led to a new classification of adrenal lesions termed the incidentally identified unsuspected adrenal mass or "incidentaloma"...I think that my current endo would simply LOVE to see it end up being the adrenal gland tumor causing this also... so he could see me get the surgical intervention, be treated and be on my merry way - and out of his hair constantly (LOL).
Also I found that my initial interpretation on things were somewhat off. I thought that if NIH recommended surgical intervention that it would be done right at that time. Actually if you choose to go with that option they bring you back in about 4 - 8 weeks and do the surgery then. I would, of course, go over the particulars with my endo and if he felt their recommendation for surgical intervention was correct, then we would look at simply doing it locally if it could be done in a quicker time span. It would come down to how quick NIH could do it as compared to the local option and how impressed I was with the local specialist (as we're talking a major metropolitan medical center I am sure they would be very good also.... but then NIH is NIH).
Anyway, if nothing else use the endo to get those tests done. Also ask about the test to check for a pheo tumor. Those are known to cause severe anxiety also. Usually are accompanied also by high BP problems... but NOT always.
RE: BTW, I have a feeling that the NIH will be recommending the removal of the tumor....
For some reason, I have that same hunch. I think that if the tumor is there that's there's just to much of a chance that it is doing something (maybe not classical cushing's or classical pheo, but something!)....
That is if the tumor is still there. I don't know if I highlighted this or not, but when the tumor was first discovered (9/04), it was 2.1 x 1.8 cm and Housefield Units were - 5 (minus five - the lower the number the better, if it's like a 12 they become nervous about being malignant and if it's like a 30 they go nutso, so minus five is very good).
Then when my endo has me do the testing to see if maybe it's a pheo tumor (it wasn't), he had a follow-up CT Scan done on it (4/05). It was now 1.8 x 1.4 cm and was down to a - 7 (minus seven) Housefield Units. That's a reduction in mass of close to 30%. And that was six months ago. Doctor was insisted that the measurements were accurate and very precise.
So maybe it was an incidental tumor (lesion) that was not a cause of the anxiety, but was created from the anxiety as a stress symptom?
Or maybe something else was going on?
http://www.jci.org/cgi/content/full/108/8/1123
Hmmm....
Elroy
PS Appreciate the prayers! Will be at NIH from 12/5 thru 12/16, so any special ones will be appreciated over that time period. If it turns out being the tumor, maybe I can have laproscopic adrenal sparing surgery that clears EVERYTHING up for a Christmas present!
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10094744&dopt=Abstract
http://www.duj.com/Article/Vaughan/Vaughan.html
http://www.vhl.org/newsletter/vhl1997/97aepheo.htm
http://cms.clevelandclinic.org/urology/body.cfm?id=146&oTopID=146
http://www.musc.edu/catalyst/archive/1998/co5-29laparoscopic.htm
Posted by tenifer on November 18, 2005, at 12:08:11
In reply to Re: Remeron and Cortisol » Tenifer, posted by Elroy on October 21, 2005, at 0:19:10
Elroy,
I've been thinking of you brother.
I thought I would stop in and see how you are doing.
By now you should be starting to ween off the Remeron in preparation for your trip to the NIH.How are things going my friend?
I hope and pray that everything is going smoothly and that your taper has had minimal withdrawal symptoms.I'll be praying for you Elroy.
May God bless you and strengthen you,David
Posted by Elroy on November 18, 2005, at 16:30:53
In reply to Re: Remeron and Cortisol (Elroy), posted by tenifer on November 18, 2005, at 12:08:11
Dave,
Good to hear from you.
I have been off of the Remeron for 18 days now (and can tell the difference).
The biggest change was with the insomnia. It came roaring back full force. I am currently taking 10 mg of Ambien along with 1 mg of melatonin at bedtime. It is good for about 3 - 4 hours (usually closer to 3). I then get up and take another 10 mg of Ambien. And then sleep for about another 2 - 3 hours.
My psych doc had initially recommended that I go with low dose (50mg) of Trazadone as a sleep aid, but NIH shot that down as it could interfere with their cortisol testing. She then recommended Seroquel (she felt that either one of those was a better choice than Ambien for sleeping right through... She said that Ambien is a decent med if your primary problem is with falling asleep, but if it is with staying asleep it isn't so good as it has a half-life on like 3 to 3.5 hours).
Anxiety levels have gone up some since stopping the Remeron. Whether from cortisol levels increasing or simply losing Remeron's mild anti anxiety effects, I don't know.
Physical symptoms have remained about the same as they did before. The physical symptoms have been better than last year, but about the same whther pre-Remeron, during Remeron or post-Remeron.
Hard to say what's going on with the cortisol levels. Did they go back up? Stay high normal like with the Remeron? Or keep slowly dropping downward? Sometimes I assume that they have to have elevated again simply because of increase in anxiety and insomnia... but then that keeps dodging the question of which came first, the chicken or the egg? Did the hypercortisolism create the anxiety and the physical symptoms? Or is the hypercortisolism simply another symptom of the severe anxiety?
And what - if anything - does the adrenal gland tumor have to do with any of this? Or is it simply a "benign fatty-tissue lesion that is biologically inactive and incidental" (as my main endo put it)? Or is it too a symptom of the severe stress levels?
I don't know about the rest of it, but I have high confidence that NIH will at least discover the answer(s) to that last paragraph....
Elroy
> Elroy,
>
> I've been thinking of you brother.
> I thought I would stop in and see how you are doing.
> By now you should be starting to ween off the Remeron in preparation for your trip to the NIH.
>
> How are things going my friend?
> I hope and pray that everything is going smoothly and that your taper has had minimal withdrawal symptoms.
>
> I'll be praying for you Elroy.
> May God bless you and strengthen you,
>
> David
Posted by Tenifer on November 18, 2005, at 19:11:15
In reply to Re: Remeron and Cortisol » Tenifer » tenifer, posted by Elroy on November 18, 2005, at 16:30:53
Elro,
You might want to investigate the CR version of Ambien. That might get you a longer effect and more sleep. I tend to wake up early myself (like after 4 hours) and can't get back to sleep again unless I pop an Ambien. I just start getting anxious and worried that I won't be able to sleep again...kinda a self-fulfilling prophecy.
I'm thinking of asking for the CR version myself on my next visit.
Hang in there brother!
God bless you,David
Posted by Elroy on November 18, 2005, at 20:10:47
In reply to Re: Remeron and Cortisol, posted by Tenifer on November 18, 2005, at 19:11:15
Dave,
My psych said to pass on the Ambien CR, that it is just a scam. She said that the patent for Ambien is getting ready to expire and that the parent company is (was) desperately looking for a new angle, a modified version that they could "re-patent".
So they developed the CR version. I'm like "OK, so what?". She then proceeds to tell me that Ambien has a half life of about 3.5 hours, which is why you wake up (if you have bad insomnia) after it starts wearing off. And I'm like, Okay, so what... isn't that what makes the CR version better"? She laughed and said "better???". She then pointed out that she looked up the studies and that the CR version has a half-life of like 3.9 hours. It was then my turn to laugh (grimace actually). Just another con. She said that she tried a few of her hardcore insomiacs and that they still had the same problem.
She was also surprised that I was on Ambien at all as she almost never uses Ambien with her tougher insomnia cases. For the reasons that we've discussed. I pointed out that when I first started seeing her back in mid 2002 with the milder anxiety that the therapist had recommended that I ask her (the psych) about getting some Ambien to help sleep and that Ambien back then did the trick (I just had trouble falling asleep but once asleep would sleep fine).
That was when she told me about her preference for low dose (50mg) of Trazadone or low dose (25mg) of Seroquel for sleep aids in the tougher cases. I actually used the Seroquel for a couple days (before NIH got back to me and advised "no-no") and it seemed to work quite well. Slept around 7 hours, but all straight through....
Elroy
X
X
X
X
> Elro,
>
> You might want to investigate the CR version of Ambien. That might get you a longer effect and more sleep. I tend to wake up early myself (like after 4 hours) and can't get back to sleep again unless I pop an Ambien. I just start getting anxious and worried that I won't be able to sleep again...kinda a self-fulfilling prophecy.
>
> I'm thinking of asking for the CR version myself on my next visit.
>
> Hang in there brother!
> God bless you,
>
> David
Posted by 4WD on November 18, 2005, at 22:12:08
In reply to Re: Remeron and Cortisol » Tenifer, posted by Elroy on November 18, 2005, at 20:10:47
I've been thinking about you too, Elroy. Seems like it might have been a good idea to test the cortisol levels immediately before or immediately after you stopped the Remeron (instead of letting the anxiety increase again before testing).
It would be interesting as well to see what happened if you took enough of a benzo to completely stop anxiety for a couple of months. If your cortisol levels were low at the end of that time, seems like you could surmise that lowering anxiety lowered the cortisol and not vice versa.
Anyway, good luck and good thoughts.
Marsha
p.s. my endo calls my pituitary tumor an "incidentaloma."
Posted by Elroy on November 19, 2005, at 12:05:50
In reply to Re: Remeron and Cortisol, posted by 4WD on November 18, 2005, at 22:12:08
Yes, that's what my Endo has called my adrenal gland tumor also, an "incidentaloma" (but my psyc doc and regular GP both find it too "coincidental" and believe that it has to be up to "something"). I give my Endo credit that he recognized that a couple of test results were borderline - and a coupe of others downrigth pointed towards a definite connection that he pushedfor the acceptance to NIH for the adrenal gland tumor study.
Basically I did have cortisol levels checked before stopping the Remeron - just not immediately before. I started the Remeron in early June and tested in July and then again in early October - and stopped the Remeron on November 1st per NIH. So a cortisol test was done about three weeks before stopping the Remeron. And of course much cortisol testing will get done while at NIH (again not immediately after stopping the Remeron but fairly soon after).
The cortisol levels at both the July testing and the October testing were down to "high normal range". The Test in April showed cortisol levels at 214 (range 20 - 100), or 214% times normal max. July test was 97 (range 20 - 100), or 97% times normal max. October test was a 52 (however reference range was changed as using a different Lab process and new range was 4 - 60), so were talking about 87% of normal max.
Big question of course has been whether cortisol levels have continued downward sicne coming off of the Remeron, have they stabilized sicne coming off the Remeron, or have they started going back up since coming off the Remeron???
And in either case, does it really mean that much if anxiety levels and all those various symptoms continue?
As it stands right now, NIH wants as few meds as possible being used - and especially anything that would have a drastic impact on inhibiting cortisol secretion or causing its rapid metabalizing from the body as it would throw the results of their various tests off (and I definitely don't want that at this point).
The idea with the significant increase of Benzos (i.e., Xanax) seems interesting. Basically is the anxiety causing the hypercortisolism rather than the other way around. I believe that there's a lot of merit in that question... especially when looking at how this whole situation first started. You see, I tend to agree with my Endo and believe that this is more a situation where the severe anxiety did in fact cause the cortisol elevations to skyrocket - and that possibly the adrenal gland tumor is actually simply another symptom of the severe anxiety (in other words that the tumor is a result of all the ongonig severe stress - like a scar - rather than a CAUSE of it). Hopefully that will be something that NIH finds out one way or the other.
The main point (that many miss) is simply that if the severe anxiety caused hypercortisolism and the hypercortisolism caused the HPA Axis to become dysfunctional, one now has a dual problem. In effect a vicious, Catch-22 problem has been created. The anxiety causes elevated cortisol which has thrown off the HPA Axis and the dysfunctional HPA Axis keeps ordering higher production of cortisol (as it is not accurately reading the feedback loop that there's already plenty of cortisol present) and the highly elevated cortisol actually manufactures anxiety symptoms. That last part is a tough one to get a handle on, but hypercortisolism can effect just about any and every system in the body, including neurotransmitters (reduces levels of serotonin and eventualy depletes the adrenaline hormones) and the CNS in a way that actuall "manufactures" anxiety symptoms.
So - if that is the situation one is experiencing - simply taking more and more Benzos could be like having a leak in your basement and bailing it out with a bucket while the leak kept on pouring out water. Another interesting possibility is that it could possibly be the anti-cortisol effects of sufficient Xanax that caused the reduction in cortisol. A lot of people (including psych docs) aren't aware that Xanax decreases cortisol level and increases DHEA levels...
See posting at:
http://www.dr-bob.org/babble/20051010/msgs/567332.htmlOR....
Is it possible that taking sufficient benzos to fully stop the anxiety might just break the cycle and - if taken long enough - give the HPA Axis a chance to normalize. I know that if one has a depression and / or anxiety problem involving a dysfunctional HPA Axis, that if the HPA Axis is not "re-set" that there is a tremendous statistical chance for relapse.
Actually, here's a pretty good explanation of the process involving stress and the HPA Axis:
QUOTE: When the brain becomes overactive and the emotions of fear (and/or anger, etc.) appear, the body goes on alert, and a state of vigilance develops. For short periods this can be normal.
But, if this is a chronic (or severe) condition, there is constant stimulation of the HPA Axis (the hypothalamic-pituitary-adrenal axis), resulting in the release of the chemicals of fight and flight. (These chemicals being cortisol and the various adrenaline hormones) A vicious cycle is created, with the stress chemicals keeping the brain overactive (anxiety) and the overactive brain (anxiety) stimulating release of the yet more chemicals. A condition of acute, chronic stress (anxiety / depression) develops. END QUOTE
Elroy
X
X
X> I've been thinking about you too, Elroy. Seems like it might have been a good idea to test the cortisol levels immediately before or immediately after you stopped the Remeron (instead of letting the anxiety increase again before testing).
>
> It would be interesting as well to see what happened if you took enough of a benzo to completely stop anxiety for a couple of months. If your cortisol levels were low at the end of that time, seems like you could surmise that lowering anxiety lowered the cortisol and not vice versa.
>
> Anyway, good luck and good thoughts.
>
> Marsha
> p.s. my endo calls my pituitary tumor an "incidentaloma."
Posted by Elroy on November 20, 2005, at 16:39:26
In reply to Re: Remeron and Cortisol (Elroy), posted by tenifer on November 18, 2005, at 12:08:11
Dave,
How does this statement sound? Make sense to you (as relates to our situations)?
QUOTE:
The section on Thought, Mood and Behavior Disorders deserves special attention — not only for the benefits in these disorders themselves, but because of the resultant lessening of tension and stress associated with many other disorders.Soon after XXX’s introduction... reports started to appear in the medical literature of patients’ improvement in mood, concentration, cooperativeness and sense of well-being. By now, extensive published evidence form widely separated sources has established XXX’s usefulness for thought, mood and behavior disorders.
XXX has been shown to have a calming effect on the overactive brain. Symptoms of this condition are preoccupation, multiple thinking, and flashes and fragments of thoughts coming and going. XXX reduces this uncontrolled activity enabling more normal thinking processes to be restored. This effect is usually achieved within an hour, without sedation.
Anger and fear and related emotion are usually found in combination with the overactive brain.
Emotional states related to anger for which XXX is therapeutic are impatience, implusiveness, irritability, aggression, hostility, rage, and violence,
Emotional states related to fear for which XXX is therapeutic are worry, anxiety, guilt, pessimism and depression. Although excessive anger and fear states are decreased or eliminated by XXX, realistic reaction of anger and fear are not interfered with.
Sleep disturbances found in combination with the overactive brain fall into two general categories. The first and most frequent category is symptomatized by difficulty in falling asleep because of over-thinking, light sleep accompanied by unpleasant dreams and frequent nightmares, and insufficient sleep. A less frequent category is symptomatized by excessive, so-called avoidance sleep. Relief from both types of sleep disturbances is usually prompt with XXX.
XXX is effective with extremes of mood ranging from depression to the hyperexcitable state. These apparently disparate effects are observed in the overactive, impatient individual who is calmed by XXX, and the tired, energyless individual who has a return to normal energy levels.
Somatic symptoms frequently associated with thought, mood and behavior disorders are usually relieved by XXX within an hour. Among them are headaches, pain, stomach discomfort, dizziness, trembling, excessively cold or warm hands or feet, and shortness of breath. (And several other somatic symptoms involved with behavior disorder's - Elroy - see full listing below)
Stress. When the brain becomes overactive and the emotions of fear and anger appear, the body goes on alert, and a state of vigilance develops. For short periods this can be normal. But, if this is a chronic (or acute) condition, there is constant stimulation of the hypothalamic-pituitary-adrenal (HPA) axis, resulting in the release of the chemicals of fight and flight (i.e., cortisol and the adrenaline hormones). A (very vicious) cycle is created, with the (hormone) chemicals keeping the brain overactive (anxiety) and the overactive brain stimulating release of yet more of the chemicals. A condition of severe anxiety develops. By correcting the overactive brain, XXX seems to break this cycle, causing a more normal state to return — and stress, commonly associated with a wide range of disorders, is diminished or eliminated. (Sounds like a process of re-setting the HPA Axis to normalize cortisol, etc., secretion, while eliminating anxiety / depression, no? - Elroy)
Basic mechanism studies are consistent with the clinical observations of the effectiveness of PHT. Of particular relevance are the studies in the section, Stabilization of Bioelectrical Activity. (See Basic Mechanisms of Action) They show that PHT, without affecting normal function, corrects hyperexcitability, as in post-tetanic potentiation or post-tetanic repetitive discharge. This would seem to be the mechanism by which PHT corrects the overactive brain.
END QUOTEFull range of somatic symptoms associated specifically with anxiety:
Emotional Symptoms:
Constant fears
Fear of Impending doom
Depression
Agoraphobia
Sudden Panic
Irritability
Social Nervousness
Feelings Like You Are Going Mad
Fear of Losing Control
Feeling Alone And Out Of Place
Believing That There Is No Hope Of Normality
Social Phobia
Disturbing Dreams And ThoughtsPhysical Symptoms:
Racing Heart
Chest Pain
Palpitations
Headaches
Sweating excessively
General Fatigue / Low Energy
Dizziness
Insomnia
Butterflies in the Stomach
Difficulty swallowing
Headache
Pain or blurring in the eyes
Ache or pain in the neck
Ache / pain in the shoulders, the back, or chest Aches or pains in arms and/or hands
Aches or pains in legs and/or feet (extremities)
Hands and/or feet cold or hot
Tingling sensations
“knots” or “butterflies” in stomach
Shortness of breath / Difficulty breathing
Trembling (physical)
Trembling feeling inside
Shaking or shivering
Pulse, or beat, or throb you can feel inside
Bowel Troubles
Nausea
Rapid gastric emptying
Indigestion, heartburn
Constipation or diarrhea
Skin rashes
Symptoms like 'flu'
Distorted vision
Tinnitus
Hormone problems
Symptoms of UTI / ProstatitisAmazing, but everyone of my symptoms is on that list. Obviously no one (unless, especially cursed) would have ALL of those somatic symptoms, but I find it interesting that none of my symptoms are not listed there.
Gives a lot of credibility to the thought that severe anxiety caused the hypercortisolism and all of my involved symptoms (to possibly include the stress-induced creation of the adrenal gland??) - and that possibly none - or few - of the symptoms were actually caused by the hypercortisolism...
Elroy
X
X
X
> Elroy,
>
> I've been thinking of you brother.
> I thought I would stop in and see how you are doing.
> By now you should be starting to ween off the Remeron in preparation for your trip to the NIH.
>
> How are things going my friend?
> I hope and pray that everything is going smoothly and that your taper has had minimal withdrawal symptoms.
>
> I'll be praying for you Elroy.
> May God bless you and strengthen you,
>
> David
Posted by Tenifer on November 20, 2005, at 23:30:56
In reply to Re: Remeron and Cortisol » tenifer, posted by Elroy on November 20, 2005, at 16:39:26
Hi Elroy,
Makes perfect sense to me. I have always thought the same.
The process is very much self-feeding; a spiral down. I visualize it like this: Our bodies nervous system is designed to run at 33.3 RPM (us old heads will know what I'm referring to :). But in some of us our hectic, stress-fueled and overwhelming lifestyles cause ours to run 'normal' (to us anyway) 45 RPM. Now, the 45 RPM isn't normal; we just come to perceive it as normal because we can't remember running at any other speed. We have adapted to this level of stimulation and can function reasonably well there.
Now a new stressor enters the picture. In most people it would cause an acute response that would quickly abate. Not so for those of us who have been chronically overstimulated. Imagine briefly turning the RPM up to say 72 RPM...you would hear the chipmunk music but then it would quickly step back down to its previous speed once the speed was lowered. Not so with us. We try to slow down but for us it takes far longer and while we are trying to slow down, any other stressor is like someone speeding up the record again. The longer this goes on the more sensitive to these stressors we become. What we need is a way to put the brakes on this turntable that allows our systems the time to slow down AND that minimizes our vulnerability to these stressors until we have achieved that slow speed for a time; giving our bodies a chance to restore the regulating mechanisms that have gone awry.
Does this analogy make any sense?I think that the real objective here has to be to interrupt the cycle long enough to allow the HPA axis to reset itself. I believe that the body has the ability - and the desire - to reach equilibrium again but that the ongoing stress and hyperstimulation prevents this from occuring. The brakes are simply not working on the runaway turntable.
Anyway, this is my simple way of picturing and understanding this. I hope I don't sound like I'm babbling here. I have to believe that people in our situation will certainly understand...
Keep in touch my friend, :)
You're in my prayers.
David
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