![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by Elroy on August 2, 2005, at 22:14:29
OK, has been awhile since been on the Board, but I started the Remeron protocol on June 7th.
I have had a strong hypercortisolism problem since the onset of severe anxiety around last June (possibly late May). The various involved docs (endo ,psych doc, PCP, etc.) have concluded - once they determined that it was not "regular" Cushing's (the endo says that it is Pseudo Cushings) - that a few years of strong stress and mild anxiety led to eventual dysfunction of the HPA Axis which then led to malfunctioning of the HPA Axis and hypercortisolism... which caused the severe anxiety (along with a number of other symptoms including things like hypogonadism and tinnitus, etc., etc.).
While this is an anti-depressent med (and we were hoping for some anti-depressent effects as I also had some mild depression - primary problem was severe anxiety, severe insomnia and some other physical effects), our primary purpose in utilizing Remeron was due to its reported anti-cortisol effects.
I started 15 mg for first week - was supposed to be two weeks but had to move up earlier as sedation was just too great. I was sleeping like 14 - 16 hours a day!
On one hand that was really great, as in good... You have to understand that I had insomnia, severe insomnia since this whole mess started and suddenly being able to sleep so deeply and long was just amazing.
Anyway, went to 30 mg for a week, and then 45 mg for a week. I have been on 60 mg since then.
At 30 mg I was sleeping like 12 - 14 hrs (occasionally more), and at 45 mg about the same.
At 60 mg I started out with sleeping at like 10 - 12 hours but that has gradually reduced to around 8 - 9 hrs (with an occasional 10 hrs).
Personally I never had any of the side effects related to "severe hunger pangs" (even at the lower doses). I did have a slight increase in appetite - but seeing as how I had no appetite before, that itself wasn't bad.
Over that time period I probably gained 10 - 15 lbs... mostly early on and not from over-eating or carb craving, etc., but simply from being so sedated and lowered metabolism (Remeron has an anti-histamine effect which is more noticeable at lower levels).
Energy levels were low also early on, kind of like just being fatigued mildly, but that too has been lessening. In the last two weeks I have started exercising regularly which has happened since this all started. Am hoping that energy levels continue to increase and working out will get the weight back off.
The key here is that (IMHO), I don't believe that Remeron is necessarily a good med choice if you do NOT have elevated cortisol. Maybe I'm wrong, but I don't think so.
So to the key question....
Yes, it did.
My 24-hr UFC test showed my cortisol levels in April were 241 (in a reference range of 20 - 100). Not surprising... ALL of my 24-hr UFC tests have shown highly elevated levels since I started testing last September. The first two were over five times the normal maximum. Most of them have been in the range of mid 200s to low 300s.
I then had one done on July 19th. The test result from that one came back Friday and I was a 93.9 - just barely inside the "normal range", but a huge improvement for me with my prior one at 241!
As to how I feel, the anxiety is much lessened from where it was three months ago. The depression is still slightly noticeable but not anywhere near as bad as it was three months ago (again the depression was always much lesser than the anxiety). Aside from indirect action via lowering the cortisol, the Remeron also has some reported direct anti-anxiety actions.
Some of my physical symptoms have also lessened quite a bit.
My belief is that the cortisol needs to continue to be driven downward yet more. There's a "normal range" and then there's an "optimal range". I believe that optimal range is like around 40 - 65, but obviously varies between individuals.
I might (barely) be in the normal range, but my belief is that for the HPA Axis to be able to re-set it is going to need levels not only in the "optimal range", but to be there for a few weeks to a few months.
My goal at this point is to continue my Remeron protocol until the next scheduled round of cortisol testing (mid October) and see what my levels are at that time. If thelevels are in the mid ranges (40 - 65 range for example), then I want to come off of the Remeron and get tested again in one month (rather than waiting for another full three months like we are currently doing). Doing this step will also depend quite a bit on how I feel. I may want to do another full three months on the Remeron to help the HPA Axis along before taking this step.
If cortisol levels are back to elevated levels at that post-one month test, then I'll know that the HPA Axis has not re-set and that I'll need to go back on the Remeron for a while longer... or possibly go through the process of a compassionate use waiver in order to give RU486 short-term protocol a chance.
If cortisol levels remain in mid range, then I'll know that HPA Axis has re-set.
Elroy
Posted by Dr. Bob on August 3, 2005, at 2:43:00
In reply to Remeron Protocol as Anti-Cortisol, posted by Elroy on August 2, 2005, at 22:14:29
> OK, has been awhile since been on the Board, but I started the Remeron protocol on June 7th.
Please don't post the same information in more than one place at the same time.
If you or others have questions about this or about posting policies in general, please see the FAQ:
http://www.dr-bob.org/babble/faq.html#civil
Follow-ups regarding these issues should be redirected to Psycho-Babble Administration.
Thanks,
Bob
Posted by Elroy on August 3, 2005, at 5:55:25
In reply to Re: the same information in more than one place » Elroy, posted by Dr. Bob on August 3, 2005, at 2:43:00
OK, no problem.
Have just received multiple requests asking for information on how this therapy process was going and really didn't feel like having to answer it mroe than one time (as they came from different threasds and doing a copy and paste was simply easier to do).
With as much posting as gets done - much of it of a very miscellaneous nature - this seems like a strange rule...
Maybe should be re-visited?
Posted by 4WD on August 3, 2005, at 22:25:42
In reply to Re: the same information in more than one place » Elroy, posted by Dr. Bob on August 3, 2005, at 2:43:00
> > OK, has been awhile since been on the Board, but I started the Remeron protocol on June 7th.
>
> Please don't post the same information in more than one place at the same time.
>
> If you or others have questions about this or about posting policies in general, please see the FAQ:
>
> http://www.dr-bob.org/babble/faq.html#civil
>
> Follow-ups regarding these issues should be redirected to Psycho-Babble Administration.
>
> Thanks,
>
> BobOkay, I definitely want to read this thread. Is it going to be posted here or elsewhere? Where do I look for it?
Marsha
Posted by Elroy on August 4, 2005, at 17:41:07
In reply to Re: the same information in more than one place, posted by 4WD on August 3, 2005, at 22:25:42
No idea....
Maybe BM and ask Dr Bob?
> > > OK, has been awhile since been on the Board, but I started the Remeron protocol on June 7th.
> >
> > Please don't post the same information in more than one place at the same time.
> >
> > If you or others have questions about this or about posting policies in general, please see the FAQ:
> >
> > http://www.dr-bob.org/babble/faq.html#civil
> >
> > Follow-ups regarding these issues should be redirected to Psycho-Babble Administration.
> >
> > Thanks,
> >
> > Bob
>
> Okay, I definitely want to read this thread. Is it going to be posted here or elsewhere? Where do I look for it?
>
>
> Marsha
>
Posted by Dr. Bob on August 5, 2005, at 22:50:36
In reply to Re: the same information in more than one place, posted by 4WD on August 3, 2005, at 22:25:42
> Okay, I definitely want to read this thread. Is it going to be posted here or elsewhere? Where do I look for it?
Right here:
http://www.dr-bob.org/babble/20050728/msgs/536897.html
:-)
Bob
Posted by 4WD on August 6, 2005, at 22:00:36
In reply to Re: this thread, posted by Dr. Bob on August 5, 2005, at 22:50:36
> > Okay, I definitely want to read this thread. Is it going to be posted here or elsewhere? Where do I look for it?
>
> Right here:
>
> http://www.dr-bob.org/babble/20050728/msgs/536897.html
>
> :-)
>
> Bob
>
Cool. Thanks.Marsha
Posted by Tenifer on September 2, 2005, at 10:12:44
In reply to Remeron Protocol as Anti-Cortisol, posted by Elroy on August 2, 2005, at 22:14:29
Elroy,
I've been following this thread and think of you often. I hope all is going well wth this protocol. Could you pop in and let everyone know how you're doing?
Wishing you the best. :)
David
Posted by Elroy on September 3, 2005, at 15:32:20
In reply to Re: Remeron Protocol as Anti-Cortisol, posted by Tenifer on September 2, 2005, at 10:12:44
Hello.
Still following the 60 mg daily protocol. To update, my cortisol level in April was a 214 (note reference range for all of these listings for cortisol is 20 - 100). I started Remeron on June 7th. One week at 15 mg, one week at 30 mg, one week at 45 mg and then on to the 60 mg. level. I then tested on July 19th. My cortisol level was a 94 (93.9). That was the FIRST cortisol testing that had been in the normal range since this whole weird situation started in June of 2004. I was on Remeron for six weeks at the time of the testing and only at the full dose for three weeks.
I am trying to get my Endo to move my cortisol testing process up a month so that I do my next testing this month rather than waiting until next month (mid Sept rather than mid October). That will give me an additional eight weeks at the full dose level when cortisol testing is done (testing done via 24-hr UFC tests). The interesting question will be whether or not the Remeron continued to bring cortisol levels down even further.
I then want to stop the Remeron around the first of October and test again in two weeks (i.e., mid October). The objective will be to see if the Remeron has not only brought the cortisol levels down sufficiently (after all 94 is just barely within the reference range), but also if the lowered cortisol levels have allowed the HPA Axis to rest sufficiently so that it has "re-set" (thereby allowing a return to normal secretion levels). Or do the cortisol levels start climbing back up as soon as the Remeron is stopped?
Back earlier in the year I tried an experiment on my own. Starting around late November of last year I began using OTC anti-cortisol products and by late December was using them very aggressively (high doses used frequently). Those OTC products included Phosphatidylserine, Magnolia bark, Epimedium, Rhodiola rosea, Ashwagandha,
Holy Basil, Melatonin, Beta-sitosterol, and Gingko Biloba.My mid December (2004) cortisol testing levels were 222. I then tested again in mid February. This test followed the above "aggressive" OTC supplementation from mid December or so until the testing in mid February. Interestingly, this OTC approach (emphasizing its aggressive nature) resulted in my mid February cortisol levels testing at a 108. So eight to ten weeks of aggressive OTC supplementation brought the cortisol from a 222 to a 108 - as compared with Remeron which in six weeks (only three at full dose however) brought cortisol levels from a 214 to a 94.
I continued taking the OTC approach until the first of April. I stopped for two full weeks before the next cortisol testing. That was the test result showing the 214. So.... while the OTC approach (pursued in a very aggressive fashion) had some positive results in lowering cortisol (though not quite into the normal ranges), the "natural approach" clearly did not create an environment that allowed the HPA Axis to "re-set" and allow cortisol secretion levels to normalize. Maybe that approach would have allowed that process to occur if it had been continued for a longer time period???
So that's the question with the Remeron. It - like the aggressive OTC approach - has proven that it can significantly lower the cortisol. Can it lower it further (94 is still pretty high cortisol levels in that reference range)? And can the lowered levels result in the re-setting of the HPA Axis to allow normalized cortisol secretion patterns?
That appears to be what has been happening in the successful results shown in various clinical studies employing the use of mifepristone. The cortisol levels get reduced sufficiently for the HPA Axis to "re-set", cortisol levels become normalized and AD therapies work very quickly. What is so interesting is that the clinical trials of mifepristone have been very short-term (4 to 7 days generally) and yet have had such positive results. Unfortunately even though mifepristone has been "fast-tracked" by the FDA, it is probably still quite a ways off from being approved.
Will Remeron perform something similar although over a much longer time period?
We will see.
Elroy
X
X
X
> Elroy,
>
> I've been following this thread and think of you often. I hope all is going well wth this protocol. Could you pop in and let everyone know how you're doing?
>
> Wishing you the best. :)
>
> David
Posted by Tenifer on September 13, 2005, at 9:13:46
In reply to Re: Remeron Protocol » Tenifer, posted by Elroy on September 3, 2005, at 15:32:20
Elroy,
Your thesis makes perfect sense to me.
Thanks for taking the time to post your
experience so far.I was also looking at OTC cortisol-lowering
agents as a means of getting my HPA axis to
reset so things could get back to normal.I'd hate to burden you further, but if you
have the time could you share the OTC protocols
you tried (brand, dosages, time taken, with
food?, etc.)I would really like to go that route before I
resort to meds (again). Interestingly, I was
first put on Paxil and that made me nuts and
significantly worsened my condition. It wasn't
until recently that I learned that SSRI's
actually increase cortisol secretions. Crazy
stuff huh?By the way, how have your anxiety levels been?
Judging from the lowered arousal of your HPA
axis as evidenced by your UFC cortisol levels
I'd hope that it was substantially reduced or
eliminated. I hope that is the case. :)Thanks again for keeping all of us up to date
on your progress Elroy. I really wish you
the best and continued success.May God be with you,
David
Posted by Elroy on September 13, 2005, at 20:46:57
In reply to Re: Remeron Protocol, posted by Tenifer on September 13, 2005, at 9:13:46
Well, Dave, this might end up getting re-directed but here goes.....
First of all, my anxiety has been helped quite a bit by the Remeron. Remeron is an unusual antidepressant. Aside from being one of the few (maybe two?) that directly reduce cortisol levels, it is also very sedating (while some ADs obviously are sedating, most tend to be "energizing", no?) and it also has a degree of direct acting antianxiety properties. In fact, in my case I have found its AD effects to be minimal while I have noticed a degree of AA effects. My routine AA medication has been 1 mg of Xanax XR twice daily (AM and PM dose). I have found with the Remeron that I have been able to "skip" the PM dose probably 1/3 to 1/2 of the time. Remeron is also unusual in that the more noticeable side effects tend to be more obvious at lower doses (with me it has been easily the sedation factor).
To update on the Remeron protocol, I should be getting next tested for cortisol levels next month (hoping for early part of the month). The key will be whether or not the cortisol is still going down - and if it is lower, whether or not the continued lower levels of cortisol will allow the HPA Axis to re-set and cortisol secretion to normalize. The next key step will be in November when I re-test for cortisol and STOP taking the Remeron about two weeks before testing. If the cortisol levels have been lowered further and then STAY lower after stopping the Remeron then one can assume that the HPA Axis has been re-set.
I think it important to also point out that hypercortisolism that is NOT related to a cause that would lead to a diagnosis of Cushing's Disease or Cushing's Syndrome or Exogenous Cushing's (i.e., in other words one would be talking technically about "Pseudo Cushing's") still requires that the causation be addressed.
To give a quick example... there are multiple causes for Pseudo Cushing's, one of those being acute, chronic alcoholism. One might take Remeron to lower cortisol levels (or possibly an aggressive campaign of OTC supplements), but unless the underlying cause of acute alcoholism is addressed, the HPA Axis will remain dysfunctional and the cortisol levels will simply shoot right back up when the medication is halted - or possibly even one will face a situation where the causation eventually "overpowers" the medication and the cortisol levels gradually increase again over time.
So... the point is that if one has a psychological condition of anxiety / depression that has resulted in a dysfunctional HPA Axis, it is important that the "stressors" that led to the original condition be addressed. Possibly that already has and the dysfunctional HPA Axis has kept the anxiety / depression going, but one should just keep that in mind. In taking a holistic approach to addressing my situation I have been going through EMDR therapy also (it has been quite, well, interesting to say the least, but that's another topic).
Before getting into OTC choices, I would ask this... do you know for sure that you have welevated cortisol levels? And, if so, how was that determined? If the cortisol testing was by means of any test other than a 24-hr Urinary Free Cortisol test, then forget it. You did NOT get an accurate cortisol reading. Even the salivary testing that is done four times a day (every six hours) is NOT sufficiently accurate to determine if you in fact have elevated cortisol. I stress this as I am completely shocked by the number of people who contact me who simply assume that they have high cortisol - or use one of the online salivary test or even has their doctor do a morning serum test (which is when cortisol is at the highest level of the day, BTW). As one example, an individual told me that he had a morning serum test where his cortisol was a 15 in a reference range of 8 - 22 so he had "high cortisol". He had no idea of any such thing. A serum test or saliva test simply is like taking a "snapshot" of what your cortisol levels are right at that exact moment... and since one's cortisol secretion varies up and down during the day it doesn't give one any real idea of what their daily cortisol level are at. In addition, one's morning levels are generally when cortisol levels is the highest (say 8 AM to Noon as just an example), so I would expect one to be at least that high in a serum test and be completely normal.
As for OTC type supplements, my research ahs shown me that the following have been identified as having some degree of cortisol inhibition:
Phosphatidylserine
Magnolia bark (main ingredient in Relora)
Epimedium
Rhodiola rosea
Ashwagandha
Holy Basil
Melatonin
Beta-sitosterol
Gingko Biloba
Siberian ginseng
Theanine
Passionflower
7-KETO DHEA
Gerovital-H3
Tongkat aliI personally took the top nine. Not necessarily all nine each day (in fact, I mixed them around, going real strong on a couple for a week or two then switching over to a couple others, etc.). I would prefer to not get into doses (as we are all very different individually), but let us say that I researched the various ones and took "maximum doses" according to the research that I did. I would point out that research has shown (for example) that Phosphatidylserine appears to be most effective in actually reducing cortisol when taken at doses of 400 - 800 mg daily (you'll see the shock of that when you pay more than $25 for a bottle of 120 caps of 100 mg PS... so a daily dose of 800 mg means that said bottle will last you only two weeks - but fortunately that's easily the most expensive). I also found an online store that provides a lot of stuff like this in bulk powder form.
I would also point out that when I conducted my aggressive OTC supp approach, I was able to get my cortisol levels down to a 108 (in a reference range of 20 - 100)... but that when I stopped the supplementation (2 weeks before the next testing), my levels shot right back up there - up to a 214. So obviously the HPA Axis was still dysfunctional. Would another three months or six months (etc.) have ended up being the difference? Maybe. In my case I had run across the info on the Remeron in the meantime and decided to pursue that approach.
As you found out, some ADs (most?) clearly tend to make anxiety situations worse. And there's a number that actually increase cortisol levels. As the field of neuropsychiatry is finding more and more that elevated cortisol (and dysfunctional HPA Axis situations) is implicated in a significant number of psychological disorders, the idea of arbitrarily prescribing a med that could increase cortisol levels is amazing. Now there are also cases of (primarily depression) psychological disorders that involve LOW cortisol levels, so those meds might do well in low cortisol situations.... (just to increase the thought-process a little bit more, I recently read where studies have shown that elevated cortisol levels can cause a decrease in not only serotonin and dopamine, but also the adrenaline hormones (epinephrine and norepinephrine).
Elroy
> Elroy,
>
> Your thesis makes perfect sense to me.
> Thanks for taking the time to post your
> experience so far.
>
> I was also looking at OTC cortisol-lowering
> agents as a means of getting my HPA axis to
> reset so things could get back to normal.
>
> I'd hate to burden you further, but if you
> have the time could you share the OTC protocols
> you tried (brand, dosages, time taken, with
> food?, etc.)
>
> I would really like to go that route before I
> resort to meds (again). Interestingly, I was
> first put on Paxil and that made me nuts and
> significantly worsened my condition. It wasn't
> until recently that I learned that SSRI's
> actually increase cortisol secretions. Crazy
> stuff huh?
>
> By the way, how have your anxiety levels been?
> Judging from the lowered arousal of your HPA
> axis as evidenced by your UFC cortisol levels
> I'd hope that it was substantially reduced or
> eliminated. I hope that is the case. :)
>
> Thanks again for keeping all of us up to date
> on your progress Elroy. I really wish you
> the best and continued success.
>
> May God be with you,
>
> David
Posted by Elroy on October 14, 2005, at 21:33:02
In reply to Re: Remeron Protocol OTC Supps » Tenifer, posted by Elroy on September 13, 2005, at 20:46:57
Dave,
Just to update you on my continued quest with using Remeron...
Tests in April of 2005:
24-hr UFC cortisol levels: 214 (range 20 - 100)
Late night salivary cortisol: 42 (range "less than 100" - lower than 20 is VG)Started Remeron June 7, 2005.
Tests in mid July of 2005:
24-hr UFC cortisol levels: 97 (range 20 - 100)
Late night salivary cortisol: 17 (range "less than 100" - lower than 20 is VG)Tests in early October 2005:
24-hr UFC cortisol levels: 52 (range 20 - 100)
Late night salivary cortisol: 4 (range "less than 100" - lower than 20 is VG)Has been pretty amazing. Have noticed improvement of some symptoms, some that have stayed as severe, and also some noted side effects of the Remeron. Like weight gain (stablilized around 25 extra pounds), sedation (sleep 10 - 14 hours... no more insomnia), about a 70 point spoike in choloesterol, and some steadily climbing higher BP (I normally am quite low in BP so nothing significantly serious at this point).
As I am going to a study at NIH in December, I am going to have to stop the Remeron early next month. While I won't know for a while whether my cortisol levels shoot back up or not, it will be interesting to see how I feel in that regard.
Elroy
Posted by Elroy on October 17, 2005, at 13:13:39
In reply to Re: Remeron and Cortisol » Elroy, posted by Elroy on October 14, 2005, at 21:33:02
CORRECTION:
My endocrinologist called today and wanted to advise me of a correction on the cortisol testing that was just done.
Their Lab is now using a different testing process for the 24-hr UFC and the range now being used is 4 - 60 instead of 20 - 100. So the latest testing result should read as follows:
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)
So based on that, it would seem to me that the Remeron does work to moderate highly elevated cortisol... but only to a certain point. As my nighttime levels are so significantly low, it would be obvious that my daytime levels are still quite elevated - which would make sense in that symptoms have improved "somewhat" but are still present (and in some cases just as strong).
Elroy
X
X
X
> Dave,
>
> Just to update you on my continued quest with using Remeron...
>
> Tests in April of 2005:
>
> 24-hr UFC cortisol levels: 214 (range 20 - 100)
> Late night salivary cortisol: 42 (range "less than 100" - lower than 20 is VG)
>
> Started Remeron June 7, 2005.
>
> Tests in mid July of 2005:
>
> 24-hr UFC cortisol levels: 97 (range 20 - 100)
> Late night salivary cortisol: 17 (range "less than 100" - lower than 20 is VG)
>
> Tests in early October 2005:
>
> 24-hr UFC cortisol levels: 52 (range 20 - 100)
> Late night salivary cortisol: 4 (range "less than 100" - lower than 20 is VG)
>
> Has been pretty amazing. Have noticed improvement of some symptoms, some that have stayed as severe, and also some noted side effects of the Remeron. Like weight gain (stablilized around 25 extra pounds), sedation (sleep 10 - 14 hours... no more insomnia), about a 70 point spoike in choloesterol, and some steadily climbing higher BP (I normally am quite low in BP so nothing significantly serious at this point).
>
> As I am going to a study at NIH in December, I am going to have to stop the Remeron early next month. While I won't know for a while whether my cortisol levels shoot back up or not, it will be interesting to see how I feel in that regard.
>
> Elroy
>
>
Posted by Elroy on December 28, 2005, at 11:31:53
In reply to Re: Remeron and Cortisol » Elroy, posted by Elroy on October 17, 2005, at 13:13:39
For continuation of this thread information and new info concerning recent NIH Hospital visit, see:
http://www.dr-bob.org/babble/20021019/msgs/124535.html\
Specifically the more later postings.
Elroy
This is the end of the thread.
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Script revised: February 4, 2008
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