Hi everyone,

I recently was retested for DHEA and it was lower. I think it's
because I've been on a low carbohydrate diet for years now, since
being diagnosed with a 5 hour glucose tolerance test showing that
I had hypoglycemia.

Secondly, I'd also like to know if everyone is receiving this, so could
you all please respond with just a message saying "hello" and anything
else you'd like to add.  I'll assume anyone who doesn't reply is not
interested in being on the 3Beta mailing list.

Thanks!

Deb

Wendy, have your adrenals been retested yet?  Have you gotten
the results back?

Maybe all of us should get our test scores and compare them?

Deb

I have also been diagnosed recently with CAH 3 Beta (late onset). I am 29. My
symtoms have really only been an absence of menstration for most of my life. The
endo. said that this was because my body pumps out extra testosterone and DHEA
when it works overtime to pump out enough cortisol. This hormonal imbalance has
caused me to deal with infertility. Additionally, within the past several years
I developed unwanted hair growth (mild in amount but still bothersome and
noticeable) on my chin, upper lip, breasts, and abdomen.I have been receiving
regular treatments by an electrologist to deal with it effectively and feel much
better about myself now after a year of treatment. I am currently on
dexamethasone, but I have not been able to get regular periods started nor have
I noticed a decrease in hair growth. It may be too soon to know if dex. will
work since I have only been on it for two months. Does anyone else out there
share these symptoms?

Ortiz wrote:
>
> From: Ortiz <Ortiz3@...>
>
> I grind my teeth,but I have a mouth piece I wear at night that the dentist
made for
> me.My jaw used to hurt.I'm going to another fertility center.They are nurses
that
> run it.They will refer me to an Endo so maybee now I'll get some answers about
the
> adrenal problems and see if any other hormones are elevated.Robin

Hi Ortiz,

Yet another thing 3Betas may have in common. I've worn a bite guard
for many years, too.  It would be interesting to know if this
imbalance also causes TMJ.  I take Klonapin which only helps the
symptom of grinding.  Thanks for writing and keep us posted.


To all:
Feel free to bring up symptoms -- maybe we share quite a few
more!

Deb

I grind my teeth,but I have a mouth piece I wear at night that the dentist made
for
me.My jaw used to hurt.I'm going to another fertility center.They are nurses
that
run it.They will refer me to an Endo so maybee now I'll get some answers about
the
adrenal problems and see if any other hormones are elevated.Robin

CAHwith3BetaHSD@onelist.com wrote:

> > Community email addresses:
>   Post message: CAHwith3BetaHSD@onelist.com
>   Subscribe:    CAHwith3BetaHSD-subscribe@onelist.com
>   Unsubscribe:  CAHwith3BetaHSD-unsubscribe@onelist.com
>   List owner:   CAHwith3BetaHSD-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/CAHwith3BetaHSD
> ------------------------------------------------------------------------
>
> There are 2 messages in this issue.
>
> Topics in today's digest:
>
>       1. Moods, Corticosteroids and Memory (or lack thereof-lol)
>            From: Promecia@...
>       2. Re: Moods, Corticosteroids and Memory (or lack  thereof-lol)
>            From: saxfiend <saxfiend@...>
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 1
>    Date: 4 Oct 1999 19:16:04 -0000
>    From: Promecia@...
> Subject: Moods, Corticosteroids and Memory (or lack thereof-lol)
>
> Just read Deb's post. Oh, boy! Don't even know where to start! This has
> been a major problem for me and not one that garners much sympathy from
> doctors or even my own family. They just think I'm nuts;) I can't tell
> you how many times I've been called "high-strung" or "overly sensitive".
> I've also had difficulty with my memory. It started way back before I was
> diagnosed with 3-BetaHSD. And my experience with steroids (Dex. and Pred.)
> was that it made everything worse. Particularly the Dexamethasone, but my
> reaction to that drug was extreme. It seems to be my short-term memory that
> has suffered the most. Deb, didn't you mention being taken off Dex. years
> ago because of muscle weakness? When the same thing happened to me a
> neurologist told me that a tiny percentage of the public does not metabolize
> the drug. Wouldn't it be amazing if that same tiny group are the same people
> who suffer from 3-Beta? Hmmmm?
>
> As far as mood swings and anxiety go...
> I tend to over react to little things. I also get into these horrible moods
> that literally scare me. Very dramatic, nasty moods where I say things and
> react in a manner that is not indicative of who I really am and what my
> normal personality is like. I have anxiety almost all the time but do not
> have major anxiety attacks. I have had them, but only 3 times and they were
> all related to actual very stressful events happening at the time. There
> were also 2 other incidents where it felt like an anxiety attack but turned
> out to be an adrenal crisis brought on by the physical stress on my body
> caused by kidney infections. My doctor tripled my steriods at the time and
> that solved the problem.
>
> Deb, what is Klonapin? Does it help a lot? Are there any negative side effects
> in your experience? Also, does anyone else suffer from insomnia?
>
> Just wanted to let you know that I have to take a series of classes this week
> on "Participatory Management" that are pretty much going to wipe me out and
> I might not be online the rest of the week. But I'll be back soon so keep
> posting and e-mailing me. And hopefully I'll catch up! And if anyone has
> learned the art of saying "No!" to people begging you to volunteer for nine
> million things at school, please let me know;)
>
> Talk to you all later!
> Stressed-out Erin
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 2
>    Date: Tue, 05 Oct 1999 01:45:45 -0400
>    From: saxfiend <saxfiend@...>
> Subject: Re: Moods, Corticosteroids and Memory (or lack  thereof-lol)
>
> Promecia@... wrote:
> >
> > From: Promecia@...
> >
> > Just read Deb's post. Oh, boy! Don't even know where to start! This has
> > been a major problem for me and not one that garners much sympathy from
> > doctors or even my own family. They just think I'm nuts;) I can't tell
> > you how many times I've been called "high-strung" or "overly sensitive".
> > I've also had difficulty with my memory. It started way back before I was
> > diagnosed with 3-BetaHSD. And my experience with steroids (Dex. and Pred.)
> > was that it made everything worse. Particularly the Dexamethasone, but my
> > reaction to that drug was extreme. It seems to be my short-term memory that
> > has suffered the most. Deb, didn't you mention being taken off Dex. years
> > ago because of muscle weakness? When the same thing happened to me a
> > neurologist told me that a tiny percentage of the public does not metabolize
> > the drug. Wouldn't it be amazing if that same tiny group are the same people
> > who suffer from 3-Beta? Hmmmm?
>
> Yes, it IS interesting that we may be in that same group of people who
> can't metabolize cortisone -- UNLESS someone on our 3 Beta mailing list
> tells us otherwise.
>
> > As far as mood swings and anxiety go...
> > I tend to over react to little things. I also get into these horrible moods
> > that literally scare me. Very dramatic, nasty moods where I say things and
> > react in a manner that is not indicative of who I really am and what my
> > normal personality is like. I have anxiety almost all the time but do not
> > have major anxiety attacks. I have had them, but only 3 times and they were
> > all related to actual very stressful events happening at the time. There
> > were also 2 other incidents where it felt like an anxiety attack but turned
> > out to be an adrenal crisis brought on by the physical stress on my body
> > caused by kidney infections. My doctor tripled my steriods at the time and
> > that solved the problem.
>
> Yep, I can relate.  Some have told me the temperament thing is due to
> having
> a a musical/artistic temperament, but I think that's a stereotype. Have
> you
> taken  any medications for this that helped?
>
> > Deb, what is Klonapin? Does it help a lot? Are there any negative side
effects
> > in your experience? Also, does anyone else suffer from insomnia?
>
> I've used .5 mg.  of Klonapin so that I don't grind my teeth as hard
> when I'm sleeping.  It does help.  Because I don't like to take many
> medications, I take it ONLY at night.  I had to stop taking afternoon
> naps because I'd wake up with terrible jaw pain. Klonapin is one of
> those meds used for lots of things, but basically it's marketed as an
> anti-seizure medication, I believe, but it helps reduce anxiety.
>
>
> > Just wanted to let you know that I have to take a series of classes this
week
> > on "Participatory Management" that are pretty much going to wipe me out and
> > I might not be online the rest of the week. But I'll be back soon so keep
> > posting and e-mailing me. And hopefully I'll catch up! And if anyone has
> > learned the art of saying "No!" to people begging you to volunteer for nine
> > million things at school, please let me know;)
>
>  Talk to you all later!
> > Stressed-out Erin
>
> I hope you enjoy the class!  And good luck practicing saying, "NO". :)
>
> P.S. to everyone:
> For those of you who haven't written to the group, I'd like to know if
> you can't relate to what we're talking about or because you're shy. Just
> a sentence or two will do.
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________

Well, this is a puzzling article just written up in the New England
Journal of Medicine.  I'm not sure whether I sent this to the
3Beta newsletter yet, but just in case I didn't, here it is:

It would seem that women with insufficient adrenal reserves should
be on cortisone rather than DHEA because DHEA would alert the
pituitary to shut down cortison production.

Comment are VERY welcomed gals!


http://diabetes.medscape.com/reuters/prof/1999/09/09.30/cl09309c.html


Dehydroepiandrosterone Replacement
Improves Well-Being in Women With
Adrenal Insufficiency


WESTPORT, Sep 30 (Reuters Health) - Women with adrenal
insufficiency who receive dehydroepiandrosterone (DHEA)
replacement therapy experience an improved sense of
well-being and sexuality, German researchers report in the
September 30th issue of The New England Journal of
Medicine.

Dr. Wiebke Arlt, of the Medical University Hospital in
Wuerzburg, Germany, and a multicenter German team followed
24 women with adrenal insufficiency. Each woman was
randomly assigned to receive either 50 mg of DHEA each day
or placebo for 4 months. After a 1-month washout period, the
women switched treatments.

At study entry, women had low serum concentrations of
DHEA, DHEA sulfate, androstenedione, testosterone and
dihydrotestosterone. DHEA replacement therapy boosted these
measures into the normal or low-normal range, according to the
report. Administration of DHEA also significantly decreased
serum concentrations of sex hormone-binding globulin, total
cholesterol and high-density lipoprotein cholesterol.

DHEA replacement also improved women's scores on several
measures of well-being, the researchers report. These
improvements were apparent after 4 months of treatment, but
not after 1 month, Dr. Arlt's team notes.

Likewise, DHEA was associated with an improvement in
sexuality, including frequency of sexual thoughts and fantasies,
sexual interest and sexual satisfaction. Improvements in sexual
satisfaction occurred after 4 month of treatment.

The side effects of treatment were minor for the most part,
although one woman required a decrease to 50 mg every other
day due to hair loss, according to Dr. Arlt's team.

Dr. Arlt and colleagues attribute the beneficial effects of the
treatment protocol to "...a direct effect of
dehydroepiandrosterone on the nervous system, an increase in
peripheral androgen synthesis, or both."

Based on the findings, "...dehydroepiandrosterone should
become part of the hormone-replacement regimen in women
with adrenal insufficiency," they conclude.

The findings "...mark a new phase of replacement therapy for
patients with adrenal insufficiency," Dr. Wolfgang Oelkers, of
Klinikum Benjamin Franklin in Berlin, writes in an
accompanying editorial.

Even though patients only received 4 months of DHEA therapy,
"...it is now justifiable...to prescribe a daily dose of 25 to 50
mg of dehydroepiandrosterone as long-term treatment in
patients with adrenal insufficiency whose strength and
well-being are subnormal, provided that they are monitored for
breast or prostatic cancer," Dr. Oelkers concludes.

N Engl J Med 1999;341:1013-1020,1073-1074.

Promecia@... wrote:
>
> From: Promecia@...
>
> Just read Deb's post. Oh, boy! Don't even know where to start! This has
> been a major problem for me and not one that garners much sympathy from
> doctors or even my own family. They just think I'm nuts;) I can't tell
> you how many times I've been called "high-strung" or "overly sensitive".
> I've also had difficulty with my memory. It started way back before I was
> diagnosed with 3-BetaHSD. And my experience with steroids (Dex. and Pred.)
> was that it made everything worse. Particularly the Dexamethasone, but my
> reaction to that drug was extreme. It seems to be my short-term memory that
> has suffered the most. Deb, didn't you mention being taken off Dex. years
> ago because of muscle weakness? When the same thing happened to me a
> neurologist told me that a tiny percentage of the public does not metabolize
> the drug. Wouldn't it be amazing if that same tiny group are the same people
> who suffer from 3-Beta? Hmmmm?

Yes, it IS interesting that we may be in that same group of people who
can't metabolize cortisone -- UNLESS someone on our 3 Beta mailing list
tells us otherwise.

> As far as mood swings and anxiety go...
> I tend to over react to little things. I also get into these horrible moods
> that literally scare me. Very dramatic, nasty moods where I say things and
> react in a manner that is not indicative of who I really am and what my
> normal personality is like. I have anxiety almost all the time but do not
> have major anxiety attacks. I have had them, but only 3 times and they were
> all related to actual very stressful events happening at the time. There
> were also 2 other incidents where it felt like an anxiety attack but turned
> out to be an adrenal crisis brought on by the physical stress on my body
> caused by kidney infections. My doctor tripled my steriods at the time and
> that solved the problem.

Yep, I can relate.  Some have told me the temperament thing is due to
having
a a musical/artistic temperament, but I think that's a stereotype. Have
you
taken  any medications for this that helped?

> Deb, what is Klonapin? Does it help a lot? Are there any negative side effects
> in your experience? Also, does anyone else suffer from insomnia?

I've used .5 mg.  of Klonapin so that I don't grind my teeth as hard
when I'm sleeping.  It does help.  Because I don't like to take many
medications, I take it ONLY at night.  I had to stop taking afternoon
naps because I'd wake up with terrible jaw pain. Klonapin is one of
those meds used for lots of things, but basically it's marketed as an
anti-seizure medication, I believe, but it helps reduce anxiety.


> Just wanted to let you know that I have to take a series of classes this week
> on "Participatory Management" that are pretty much going to wipe me out and
> I might not be online the rest of the week. But I'll be back soon so keep
> posting and e-mailing me. And hopefully I'll catch up! And if anyone has
> learned the art of saying "No!" to people begging you to volunteer for nine
> million things at school, please let me know;)

  Talk to you all later!
> Stressed-out Erin

I hope you enjoy the class!  And good luck practicing saying, "NO". :)

P.S. to everyone:
For those of you who haven't written to the group, I'd like to know if
you can't relate to what we're talking about or because you're shy. Just
a sentence or two will do.

Just read Deb's post. Oh, boy! Don't even know where to start! This has
been a major problem for me and not one that garners much sympathy from
doctors or even my own family. They just think I'm nuts;) I can't tell
you how many times I've been called "high-strung" or "overly sensitive".
I've also had difficulty with my memory. It started way back before I was
diagnosed with 3-BetaHSD. And my experience with steroids (Dex. and Pred.)
was that it made everything worse. Particularly the Dexamethasone, but my
reaction to that drug was extreme. It seems to be my short-term memory that
has suffered the most. Deb, didn't you mention being taken off Dex. years
ago because of muscle weakness? When the same thing happened to me a
neurologist told me that a tiny percentage of the public does not metabolize
the drug. Wouldn't it be amazing if that same tiny group are the same people
who suffer from 3-Beta? Hmmmm?

As far as mood swings and anxiety go...
I tend to over react to little things. I also get into these horrible moods
that literally scare me. Very dramatic, nasty moods where I say things and
react in a manner that is not indicative of who I really am and what my
normal personality is like. I have anxiety almost all the time but do not
have major anxiety attacks. I have had them, but only 3 times and they were
all related to actual very stressful events happening at the time. There
were also 2 other incidents where it felt like an anxiety attack but turned
out to be an adrenal crisis brought on by the physical stress on my body
caused by kidney infections. My doctor tripled my steriods at the time and
that solved the problem.

Deb, what is Klonapin? Does it help a lot? Are there any negative side effects
in your experience? Also, does anyone else suffer from insomnia?

Just wanted to let you know that I have to take a series of classes this week
on "Participatory Management" that are pretty much going to wipe me out and
I might not be online the rest of the week. But I'll be back soon so keep
posting and e-mailing me. And hopefully I'll catch up! And if anyone has
learned the art of saying "No!" to people begging you to volunteer for nine
million things at school, please let me know;)

Talk to you all later!
Stressed-out Erin

I was wondering how much our adrenal disorder effects our moods.
I for one tend to be rather high strung.  One doctor said it
may because I have an artistic nature and it comes with the
territory (I've been a part time musician and composer), but
I seriously doubt that.

For me, it may be the inability to predict how I'll feel on
a given day, i.e. either too exhausted, or too anxious, or
too unmotivated.  Ours is supposed to be a physical (biochemical)
problem that influences our moods. I'm not sure how this "influence"
works, but it's certainly disconcerting to try to live a normal
life when your body is calling the shots regarding how we feel
from day to day.

Not all of us are like that though, from the poll we recently took.
Could it be that having polycystic ovaries causes the biochemical
imbalances to be that much more intense?

What is it that causes some of us to feel almost dysfunctional?
I know there are no answers written in stone, so maybe if we
discusses these issues we could find solace if not actual help
in dealing with it.

Feel free to join in. This could turn out to be an intersting
discussion.

I'll be getting tests back that I recently took for adrenal
functioning and insulin levels. Maybe that will lead to ideas
on how to solve this ongoing problem.  Has a cortisone type
medication helped any of you in this particular area?

I feel like sittin' down and writin' a Come Monday Mornin' Blues
number right this very minute. :-)

NEXT TOPIC -- an article I found at ABC news:

http://more.abcnews.go.com/sections/living/DailyNews/stress_aging990920.html

Stress May Add to Aging
               Study on Rats Shows Stress Hormones Affect Brain


               W A S H I N G T O N, Sept. 20 - Stress
               hormones could hold one big key to
               staying sharp in old age, researchers
               said today.
                    Tests on rats showed that blocking stress
               hormones revved up the production of brain
               cells in a part of the brain, the hippocampus,
               which is important in memory, Ronald
               McKay and Heather Cameron of the
               National Institute of Neurological Disorders
               and Stroke said.
                    Writing in the journal Nature
               Neuroscience, they said their study may
               eventually lead to a drug that could help
               people become less forgetful as they get
               older.
                    Several studies have shown that stress
               hormones-specifically
               corticosteroids-are linked with memory
               loss. And corticosteroid levels are known
               to go up as people age.
                    "Older people, they are kind of
               forgetful," McKay said in a telephone
               interview.

               Stress Hormones Evident
               "But there is a group that seems to have
               memory loss because of high stress
               hormones. The memory loss they show is
               hippocampal. This set us to wondering."
                    McKay's team also knew that one of the
               few places in the brain where cells keep
               growing is in the dentate gyrus, the doorway
               into the hippocampus.
                    "Although neurons are replaced in the
               dentate gyrus, this gets slower as animals
               get older. We wondered if the explanation
               could be entirely elevated corticosteroids."
                    So they took away the hormones in old
               rats, by cutting out their adrenal glands,
               which produce corticosteroids. Then they
               looked at their brains.
                    "When we take out the adrenal glands in
               the rats, the rate of neuron replacement goes
               way up," McKay said. "It's not that we get a
               little effect-we get a huge effect."
                    It is not possible to do the same in
               people. The adrenal glands are extremely
               important, and corticosteroids control the
               functions of many organs.
                    "Stress hormones are actually good for
               you," McKay said. "As you get older, they
               are probably doing all kinds of beneficial
               things for you."
                    People whose adrenal glands do not
               work properly develop Addison's disease,
               for instance-which starts with dizziness
               and is marked by very low blood sugar, an
               inability to fight of infection, weak muscles
               and other symptoms.

               Negative Effects Could Be
               Blocked
               But McKay said it might be possible to
               develop a drug that could block the "bad"
               effects of corticosteroids in the brain while
               allowing the good effects to continue. It
               might be similar to breast cancer drugs that
               block the cancer-promoting effects of
               oestrogen while allowing the beneficial
               effects that keep women healthy, he said
                    "If you could develop a drug that would
               block corticosteroid action, even if it took
               some time and some expense, it would be
               rather cool because it is a reversible
               effect," McKay said.
                    First, scientists need to see if the effects
               of corticosteroids are similar in humans.
                    McKay's team did not look at the
               behaviour of their rats, to see if their
               memories actually improved.
                    Instead, he said he was hoping to look at
               people who have been given corticosteroids
               as drugs. "One effect of publishing this
               study is that I was hoping to get phone calls
               from people testing people who are being
               treated with corticosteroids for one reason
               or another," McKay said.
                    He would like to measure their memory
               function.


TTFN,

Deb

P.S. If you write a new message to the group without copying
an old message, just click NEW MESSAGE an address it to
CAHwith3BetaHSD@onelist.com. That way, the message won't have
the content of someone elses message in yours.

I just took Klonapin and feel much more relaxed than I felt
all day. Puts me in a somber, relaxed mood so that I don't
see life being such a stressor. Anyone else?  Opening up'to the group
may give us some insight that may not apply to others with CAH
of other times.  I'm all ears. :)

Deb (signing off for now)

I should have written a bit more.  The web page author's
credentials are good, but his theories haven't been tested
out, so it's sheer speculation on his part. That doesn't
mean ultimately at least some of his theories won't prove
true, but in the meantime, I thought it was something we
could all smile about. ;-)

Deb

Erin wrote:

Well, there you go folks - finally something positive concerning all
this DHEA swimming around in our systems! I'd like to think it's one
less thing for us to worry about:)
By the way Deb, do you know anything about the reputation of the person
who wrote all those theories on the DHEA web site? A lot of it is very
interesting and seems quite plausable, but some of it seems like he's
reaching a bit. What do ya think? How 'bout everyone else - did you
check out the DHEA site?


Erin, I totally agree with you, but I must say I enjoyed
quite a few of his theories.  I hope we've had some of the
benefits he mentioned about DHEA.  :-)

Well, there you go folks - finally something positive concerning all
this DHEA swimming around in our systems! I'd like to think it's one
less thing for us to worry about:)
By the way Deb, do you know anything about the reputation of the person
who wrote all those theories on the DHEA web site? A lot of it is very
interesting and seems quite plausable, but some of it seems like he's
reaching a bit. What do ya think? How 'bout everyone else - did you
check out the DHEA site?

Have to go to my daughters school now --- Bye!
Erin

Interresting,guess I won't be eating soy.Don't need any more dhea.Robin

CAHwith3BetaHSD@onelist.com wrote:

> > Community email addresses:
>   Post message: CAHwith3BetaHSD@onelist.com
>   Subscribe:    CAHwith3BetaHSD-subscribe@onelist.com
>   Unsubscribe:  CAHwith3BetaHSD-unsubscribe@onelist.com
>   List owner:   CAHwith3BetaHSD-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/CAHwith3BetaHSD
> ------------------------------------------------------------------------
>
> There is 1 message in this issue.
>
>  Topics in today's digest:
>
>       1. CAH 3Beta: Update and link
>            From: saxfiend <saxfiend@...>
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 1
>    Date: Tue, 28 Sep 1999 21:10:02 -0400
>    From: saxfiend <saxfiend@...>
> Subject: CAH 3Beta: Update and link
>
> First Issue:
>
> We'll be getting more people to join our mailing list after I write up
> a report in the Magic Society. I hope we see more activity in the
> mailing
> list so new people with 3Beta CAH will find it worthwhile to join in.
>
>                                 ------------
>
> Second issue:
>
> I copied a section from a report about DHEA and lowered breast cancer
> taken from the link below (which has many other articles about DHEA).
>
> "There is also evidence that soy products may affect risk factors for
> cancer, such as endogenous hormone levels. Preliminary data from our
> group indicate that young Adventist women who are vegetarians with high
> soy intake and a lower risk of breast cancer may have higher levels of
> an adrenal androgen, dehydroepiandrosterone sulfate." (J. Nutr. 1995;
> 125(3 Suppl): 709S-712S).
>
> To read the whol article, click on the link below:
> http://www.naples.net/~nfn03605/dheasoy.htm
>
> My comment: It certainly appears that adrenal androgens are protective
> against
> breast disease.
>                                 ------------
>
> TTFN,
>
> Deb
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________

First Issue:

We'll be getting more people to join our mailing list after I write up
a report in the Magic Society. I hope we see more activity in the
mailing
list so new people with 3Beta CAH will find it worthwhile to join in.

                                 ------------

Second issue:

I copied a section from a report about DHEA and lowered breast cancer
taken from the link below (which has many other articles about DHEA).

"There is also evidence that soy products may affect risk factors for
cancer, such as endogenous hormone levels. Preliminary data from our
group indicate that young Adventist women who are vegetarians with high
soy intake and a lower risk of breast cancer may have higher levels of
an adrenal androgen, dehydroepiandrosterone sulfate." (J. Nutr. 1995;
125(3 Suppl): 709S-712S).

To read the whol article, click on the link below:
http://www.naples.net/~nfn03605/dheasoy.htm


My comment: It certainly appears that adrenal androgens are protective
against
breast disease.
                                 ------------

TTFN,

Deb

Quick Note from Deb:

Erin, I just wanted to thank you for getting the ball rolling.

I also want everyone to know about the DHEA web page I found
in case you didn't already hear about it.  It rather interesting
for those of us who make too much DHEA (actually, that's all of
us reading this message).  This is the web page tells about DHEA
and makes it sound as if it were a gift of the gods:

http://www.naples.net/~nfn03605/


I'd also like to remind people that we need one or two more
people in the group to to answer the poll for this newsgroup.
So far, three of us have taken it so we need one or two more
people to respond before I can take it down and put up the
next one. ALL the data I collect will be stored and used for
a study (if I can convince the powers that be).

TTFN,

Deb

Lastly, the news on the NIH front is this. One of my new doctors
is in touch with the doctor I've been talking about at NIH.
He's a very bright guy (I took a course from him after I knew
him as my doctor).  There are also two major university teaching
hospitals where I live so somehow I'm going to give this my
all to see if we can get some testing for us. We're the rarest
form, so it probably wouldn't cost as much for them to test
us (at least this is one strategy I'll use when trying to
convince them to do it).



him as a doctor).

Hi Guys!

This is in response to Debs post concerning some questions her friend had about
  our treatment and reaction to corticosteroids. I was initially given Dex. at
  .5 divided into 2 doses. I reacted very badly to this dose and it was cut in
  half after 3 weeks (.25 in 2 doses). I continued this dose for several months
  with no positive changes. I also ended up with extreme muscle weakness and
  pain. I was sent to a neurologist who determined that my body was not
  matabolizing the Dex. I was then switched to Prednisone and had very rapid and
  positive results. I even became pregnant just 6 months after starting the
  Prednisone! However, I did not continue to have good results with the Pred.
  after my daughter began to wean herself. My doctor adjusted my dose many times
  over a year and a half time period with no real success. I am now on
  Spironolactone (a diuretic that is also an anti-androgen) and birth control
  pills (Desogen). I'm not happy with this combination either. However, it has
  helped with my skin and hair lose and I do have regular periods. By the way,
  as far as steroid doses are concerned, it is my understanding that we are not
  trying to replace cortisol - which is why our doses are so low. We are simply
  trying to "trick" our pituatary gland into correctly regulating our androgen
  levels.

Let's have some more posts guys! What has your treatment been and what were
  the results?

Bye!
Erin

I still don't know if I have this.Just suspect cah since my dhea-s was
elevated.I
wrote my dr.to see how you know if you have it or not or just pco.She hasn't
written
me back.When I called for my bc I asked the nurse to ck.into why she hasn't
written
back.I have read that caffiene doesn't help the adrenals any so I drink decaff
now
most of the time and try to drink one caffiene drink a day.Robin

CAHwith3BetaHSD@onelist.com wrote:

> > Community email addresses:
>   Post message: CAHwith3BetaHSD@onelist.com
>   Subscribe:    CAHwith3BetaHSD-subscribe@onelist.com
>   Unsubscribe:  CAHwith3BetaHSD-unsubscribe@onelist.com
>   List owner:   CAHwith3BetaHSD-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/CAHwith3BetaHSD
> ------------------------------------------------------------------------
>
> There are 3 messages in this issue.
>
> Topics in today's digest:
>
>       1. Research help...
>            From: saxfiend <saxfiend@...>
>       2. NIH info...
>            From: saxfiend <saxfiend@...>
>       3. Re: 3-Beta
>            From: saxfiend <saxfiend@...>
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 1
>    Date: Sat, 25 Sep 1999 14:53:48 -0400
>    From: saxfiend <saxfiend@...>
> Subject: Research help...
>
> Hello to all:
>
> I just got the following message from someone who now knows
> about our problem. We've been e-mailing about CAH and excessive
> DHEA. I explained how all of us are in the dark and that I'm
> trying new avenues to learn more about us and how we can deal
> with CAHwith3BetaHDS.  Perhaps he can help since very
> little is known about 3Betas. I'd like to help him with
> his questions so he can help us. Below is his message.
>
> --------
>
> >i'll send on the info to a friend at albert einstein university
> >who did some
> >stuff on me back in '86,he's an endocrinolgist but researches
> >genetics these days......dunno if he will
> >get into it/busiest man in the world  etc.....maybe he hasn't got a >clue
either.
>
> >how many people have you found with the late onset condition?
>
> >have they all been treated with cortisone?
>
> >is the prescribed cortisone a large dose to treat the disorder...
>
> >do they plan to dose up with cortisone long term...
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 2
>    Date: Sat, 25 Sep 1999 15:12:05 -0400
>    From: saxfiend <saxfiend@...>
> Subject: NIH info...
>
> There hasn't been much of a dialog going on, so I thought I'd
> start it off.
>
> Feel free to bring up any other issues or symptoms on your
> mind that relate to 3Beta HSD. As I mentioned before, I'll
> be sharing this information with my old endocrinolgist whose
> been at NIH for decades and he may have enough clout to run
> a study on us. If he can't, he'll tell me how to go about
> getting a study going.
>
> His last fax to me said CAH, polycystic ovaries and
> fibromyalgia are biochemical disorders that can cause
> mood problems.
>
> As for my brief trial of cortisone (specifically .25 mg of
> dexamethasone), I actually felt worse.  At the time, I was
> juggling a lot of  very stressful things in my life, and
> had to out of duress.
>
> Perhaps it wasn't that the cortisone was ineffective, but
> the manner in which it was given, i.e. should have been
> monitored more closely, maybe two small doses instead
> of one, but this was "experiment" at NIH and the only
> case they had at the time was me, and that was 20+ years
> ago at the National Institute of Health".  It made me
> feel very weak and ill.
>
> I wonder if I should try taking dexamethasone again, or
> perhaps a different form of cortisone, with doctors now knowing
> a bit more than 20 years ago (I hope), it may help. but personally,
> I worry about the long term side effects.
>
> The other issue that throws me off is that since there are
> five different types of CAH (and we the one that happens
> to be very rare), we may not react to cortisone in exactly the
> same way as other people with CAH.  Since I know that some
> of us also have polycystic ovaries, which is also very common
> with 3Beta (I think half of us have it), we can look into this
> syndrome as well.
>
> Later!
>
> Deb
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 3
>    Date: Sat, 25 Sep 1999 15:55:28 -0400
>    From: saxfiend <saxfiend@...>
> Subject: Re: 3-Beta
>
> Cathy, I started a mailing list for people with a 3beta HSD.
> If they'd like to join, you can have them write to:
>
> CAHwith3BetaHSD@onelist.com
>
> Thanks!
>
> Cathy Kusch wrote:
> >
> > saxfiend wrote:
> > >
> > > Thanks, I'd really appreciate it.   Do you happen to know
> > > if any people with the 3beta HSD come to the Magic Conventions?
> > > Do you have any sort of pen pal exchange? e-mail?
> > >
> > > Thanks!
> > >
> > > Cathy Kusch wrote:
> > > >
> > > > Hi DS,
> > > >
> > > > Thanks for your e-mail to the MAGIC Foundation.  I am not aware of any
> > > > doctors who are studying 3-beta HSD.  I do know that Dr. S. Pang on our
> > > > medical board knows quite a bit about it and has an article that I could
> > > > send you. Send me your address and I'll get it out to you.
> > > > Thank you,
> > > > Cathy
> > > > MAGIC
> >
> > Hi,
> >
> > There have been in the past, people with 3-Beta at the convention. If
> > they come again next year or not, I couldn't really tell you.
> > We have a networking list that I could send you. I'll send you the info,
> > just send your address.
> > Thanks,
> > Cathy
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________

Cathy, I started a mailing list for people with a 3beta HSD.
If they'd like to join, you can have them write to:

CAHwith3BetaHSD@onelist.com

Thanks!



Cathy Kusch wrote:
>
> saxfiend wrote:
> >
> > Thanks, I'd really appreciate it.   Do you happen to know
> > if any people with the 3beta HSD come to the Magic Conventions?
> > Do you have any sort of pen pal exchange? e-mail?
> >
> > Thanks!
> >
> > Cathy Kusch wrote:
> > >
> > > Hi DS,
> > >
> > > Thanks for your e-mail to the MAGIC Foundation.  I am not aware of any
> > > doctors who are studying 3-beta HSD.  I do know that Dr. S. Pang on our
> > > medical board knows quite a bit about it and has an article that I could
> > > send you. Send me your address and I'll get it out to you.
> > > Thank you,
> > > Cathy
> > > MAGIC
>
> Hi,
>
> There have been in the past, people with 3-Beta at the convention. If
> they come again next year or not, I couldn't really tell you.
> We have a networking list that I could send you. I'll send you the info,
> just send your address.
> Thanks,
> Cathy

There hasn't been much of a dialog going on, so I thought I'd
start it off.

Feel free to bring up any other issues or symptoms on your
mind that relate to 3Beta HSD. As I mentioned before, I'll
be sharing this information with my old endocrinolgist whose
been at NIH for decades and he may have enough clout to run
a study on us. If he can't, he'll tell me how to go about
getting a study going.

His last fax to me said CAH, polycystic ovaries and
fibromyalgia are biochemical disorders that can cause
mood problems.

As for my brief trial of cortisone (specifically .25 mg of
dexamethasone), I actually felt worse.  At the time, I was
juggling a lot of  very stressful things in my life, and
had to out of duress.

Perhaps it wasn't that the cortisone was ineffective, but
the manner in which it was given, i.e. should have been
monitored more closely, maybe two small doses instead
of one, but this was "experiment" at NIH and the only
case they had at the time was me, and that was 20+ years
ago at the National Institute of Health".  It made me
feel very weak and ill.

I wonder if I should try taking dexamethasone again, or
perhaps a different form of cortisone, with doctors now knowing
a bit more than 20 years ago (I hope), it may help. but personally,
I worry about the long term side effects.

The other issue that throws me off is that since there are
five different types of CAH (and we the one that happens
to be very rare), we may not react to cortisone in exactly the
same way as other people with CAH.  Since I know that some
of us also have polycystic ovaries, which is also very common
with 3Beta (I think half of us have it), we can look into this
syndrome as well.

Later!

Deb

Hello to all:

I just got the following message from someone who now knows
about our problem. We've been e-mailing about CAH and excessive
DHEA. I explained how all of us are in the dark and that I'm
trying new avenues to learn more about us and how we can deal
with CAHwith3BetaHDS.  Perhaps he can help since very
little is known about 3Betas. I'd like to help him with
his questions so he can help us. Below is his message.

--------

>i'll send on the info to a friend at albert einstein university
>who did some
>stuff on me back in '86,he's an endocrinolgist but researches
>genetics these days......dunno if he will
>get into it/busiest man in the world  etc.....maybe he hasn't got a >clue
either.

>how many people have you found with the late onset condition?

>have they all been treated with cortisone?

>is the prescribed cortisone a large dose to treat the disorder...

>do they plan to dose up with cortisone long term...

My other hormone levels are normal.I wrote my dr.to ask how you tell if you have
CAH.I have pco.So can you have both or could I have CAH and not pco?I do have
the cysts.Robin

CAHwith3BetaHSD@onelist.com wrote:

> > Community email addresses:
>   Post message: CAHwith3BetaHSD@onelist.com
>   Subscribe:    CAHwith3BetaHSD-subscribe@onelist.com
>   Unsubscribe:  CAHwith3BetaHSD-unsubscribe@onelist.com
>   List owner:   CAHwith3BetaHSD-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/CAHwith3BetaHSD
> ------------------------------------------------------------------------
>
> There are 7 messages in this issue.
>
> Topics in today's digest:
>
>       1. Re:
>            From: saxfiend <saxfiend@...>
>       2. Re: and Salt
>            From: saxfiend <saxfiend@...>
>       3. new member
>            From: Ortiz3@...
>       4. Re: new member
>            From: saxfiend <saxfiend@...>
>       5. Re: An experience with dexamethasone
>            From: saxfiend <saxfiend@...>
>       6. New Survey
>            From: CAHwith3BetaHSD-owner@ONElist.com
>       7. Is Anyone Out There?
>            From: Promecia@...
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 1
>    Date: Mon, 20 Sep 1999 13:49:04 -0400
>    From: saxfiend <saxfiend@...>
> Subject: Re:
>
> Hello!
>
> Thanks for joining CAHwith3BetaHSD mailing list. As you
> already know, doctors don't have a lot of information to
> share with us about this disorder, which is the reason
> for this mailing list.
>
> Since CAH can also effect other body systems, I thought it would
> be helpful, to let everyone know that other health issues tend to
> go along with this disorder.
>
> For example, I suspect some of us also have polycystic ovarian
> syndrome (PCOS)as well since high levels of androgen and
> testosterone can cause PCOS symtoms.
>
> Another disorder, fibromyalgia (achey or painful muscles,
> fatigue, mood disturbances, etc.) may also be a part of the
> CAH problem.
>
> Hopefully, we'll be able to ultimately figure out which of
> 3Beta HSD deficiency from CAH caused by other deficient
> adrenal enzymes and how we can help one another and possibly
> our doctors as well, to understand this disorder.
>
> Feel free to post any articles or information you come
> across so that we can match notes.
>
> Thanks!
>
> Deb
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 2
>    Date: Mon, 20 Sep 1999 14:18:19 -0400
>    From: saxfiend <saxfiend@...>
> Subject: Re: and Salt
>
> Dr. Gabe Merkin has a website with many excellent articles.
> Here's one about why a low-salt diet isn't good for us,
> particularly those of us with CAH:
>
> ----------------------------------------
> VERY LOW-SALT DIETS ARE HARMFUL
>
>                             Report #7046; 3/5/97
>
> Recent research shows that very low-salt diets can harm you (1), and
> that the vast majority of people will not lower their blood pressures
> when they reduce their intake of salt (2).
>
> For the last forty years, many doctors have recommended low-salt diets.
> Many more-recent papers show that severe salt restriction can increase
> your chances of getting a heart attack (3) by raising blood pressure (4)
> and blood levels of the bad LDL cholesterol (5). People on low-salt
> diets have a much higher death rate (5).
>
> Severe salt restriction causes your adrenal glands to produce large
> amounts of a hormone called aldosterone and your kidneys to produce
> large amounts of another hormone called angiotensin that constrict blood
> vessels and raise blood pressure (1,6). Obese people are extraordinarily
> sensitive to salt restriction because being overweight prevents your
> body from responding adequately to insulin and raises insulin levels.
> Since Insulin, itself, causes the body to retain salt, salt restriction
> raises blood levels of insulin which make a person hungry and fatter.
> Eating white flour and sugar makes your body much more sensitive to salt
> and restricting these food products decreases salt's ability to raise
> blood pressure (7). The 40% chance of lowering blood pressure with the
> most popular drugs is much lower than the 60% success rate of going on a
> low-fat diet and losing weight (8,9), so changing your lifestyle is far
> more effective in reducing high blood pressure than just taking drugs.
>
> Dr. Gabe Mirkin
>
>     1) BM Egan, KT Stepniakowski. Adverse effects of short-term,
> very-low-salt diets in
>     subjects with risk-factor clustering. American Journal of Clinical
> Nutrition 65: 2
>     Suppl.(FEB 1997): S671-S677.
>     2) JAMA May 21, 1996.
>     3) Hypertension 25: 6 (JUN 1995): 1144-1152.
>     4) Klin Wochenschrift 1990; 68: 664-668.
>     5) Klin Wochenschrift 1991 69 suppl): 51-57.
>     6) American Journal of Hypertension 7: 10 Part 1: OCT 1994: 886-893.
>     7) TA Kotchen, JM Kotchen. Dietary sodium and blood pressure:
> Interactions with other
>     nutrients. American Journal of Clinical Nutrition 65: 2 Suppl.(FEB
> 1997): S708-S711.
>     8) Hypertension 1991; 18 (suppl 1): 115-120.
>     9) American Journal of Hypertension 8: 11 (NOV 1995): 1067-1071.
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 3
>    Date: 20 Sep 1999 20:14:37 -0000
>    From: Ortiz3@...
> Subject: new member
>
> Hi all,I'm a new member and I don't know if I have CAH,but I know my adrenal
> gland is overproducing DHEA-S and I don't know for sure what is causing
this.Robin
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 4
>    Date: Mon, 20 Sep 1999 16:48:20 -0400
>    From: saxfiend <saxfiend@...>
> Subject: Re: new member
>
> Ortiz3@... wrote:
> >
> > From: Ortiz3@...
> >
> > Hi all,I'm a new member and I don't know if I have CAH,but I know my adrenal
> > gland is overproducing DHEA-S and I don't know for sure what is causing
this.Robin
>
> Robin, what did your doctor tell your about your other hormone
> levels?
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 5
>    Date: Mon, 20 Sep 1999 17:13:00 -0400
>    From: saxfiend <saxfiend@...>
> Subject: Re: An experience with dexamethasone
>
> Perhaps it would be most helpful to find out who's now taking
> a cortisone type drug to help the 3Beta HSD condition and
> who isn't.
>
> Here's my experience many years ago:
>
> I was seen at NIH (National Institute of Health) and was given
> a small dose of dexamethasone and had negative results,
> but I was also extremely stressed out by work conditions and
> other conditions. My sweet tooth increased uncontrollably,
> gained alot of weight, and the scariest part of it was muscle
> weakness where I couldn't pick up not-too-heavy objects.
>
> Unfortunately, the trial period of cortisone ended when
> I was sent to the Hematology Department because my white
> count continued to increase. I was told I might be in
> the early stages of leukemia and took monthly tests for
> over a year.  (leaving a lot out here for the sake of
> brevity) but NIH no longer followed me because they
> believed I had leukemia, so they told me a private
> doctor should follow me. I wound up developing an ulcer
> and my private doctor told me to stop the cortisone.
>
> I hope all of us with 3Beta will share any experiences
> either postive or negative when taking a cortisone
> medication.
>
> Deb
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 6
>    Date: 20 Sep 1999 23:07:38 -0000
>    From: CAHwith3BetaHSD-owner@ONElist.com
> Subject: New Survey
>
> Hello,
>
> There is a new survey for the CAHwith3BetaHSD community.
>
> This survey is to find out which symptoms
> are most prevalent in 3Beta HDS deficiency.
> The results are tallied as a group, so no
> one will know the score for any particular
> individual.
>
> Feel free to use any of the topics mentioned
> when you write email to the group.
>
> Please take this survey only once.
>
> ----
>
> Possible answers are:
>
> o I am taking a form of cortisone medication
> o I am taking medication to reduce salt loss
> o I experience a lot of fatigue
> o I experience a lot of anxiety
> o I am often depressed
> o I have "attacks" and feel "dysfunctional".
> o Excess hair is still a problem for me
> o I am unable to work
> o I find that diet influence my symptoms
> o My sleep or lack of sleep influences my symptoms
> o My doctor has informed me about this illness to my satisfaction
> o I feel better since taking medications for this illness.
> o I feel worse since taking medications for this illness.
> o Other people in my my family have been diagnosed with 3Beta HSD
> o I have more panic attacks since taking meds
> o I have fewer panic attacks since taking meds
> o I've never had panic attacks
> o I often feel a sense of dread or doom
> o Eating too much sugar upsets how I feel
> o Moodiness is a problem for me
> o I have problems with concentration
> o I experience muscle aches and pains
> o I have periods where my thinking is foggy
> o I have a problem with memory
> o I've also been diagnosed with Polycystic Ovarian Syndrome
>
> To vote, please visit the following web page:
>
> http://www.onelist.com/surveys/CAHwith3BetaHSD
>
> Note: Please do not reply to this message. Survey votes are not collected
> via email. To vote, you must go to the ONElist website.
>
> Thanks!
>
> CAHwith3BetaHSD Owner
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________
>
> Message: 7
>    Date: 21 Sep 1999 05:11:45 -0000
>    From: Promecia@...
> Subject: Is Anyone Out There?
>
> Hi Deb and everyone else --- all 4 of you, lol. I say everyone else because I
can't seem to access the "members" section in the list to the left. I see that
no one has responded to your welcome post Deb, so I thought I'd give it a shot.
Let me know if my oh so interesting post reaches your mailbox:) I hope this list
will give us all a chance to solve some of the mysteries of 3-Beta,... or at
least have a chance to bitch alot. Don't worry, I'll try to keep that part to a
minimum!
>
> Bye!
> Erin
>
>
_______________________________________________________________________________
>
_______________________________________________________________________________

I am a 29 year old female recently diagnosed with this form of adult onset CAH.
My main symptoms are no menstrual periods before medication and hirsuitism. I am
also dealing with mild acne and oily skin. I have recently started .50 mg of
dexamethasone daily (been on it for 5 weeks now). I have had one period since I
started the meds, but I don't think ovulation followed in that first cycle. I
would be interested in hearing from women who were able to get menstrual
irregularities worked out by prednisone or dexamethasone and then later
conceive. Also, any side effects of dexamethasone are of interest to me.

Hi Deb and everyone else --- all 4 of you, lol. I say everyone else because I
can't seem to access the "members" section in the list to the left. I see that
no one has responded to your welcome post Deb, so I thought I'd give it a shot.
Let me know if my oh so interesting post reaches your mailbox:) I hope this list
will give us all a chance to solve some of the mysteries of 3-Beta,... or at
least have a chance to bitch alot. Don't worry, I'll try to keep that part to a
minimum!

Bye!
Erin

Hello,

There is a new survey for the CAHwith3BetaHSD community.

This survey is to find out which symptoms
are most prevalent in 3Beta HDS deficiency.
The results are tallied as a group, so no
one will know the score for any particular
individual.

Feel free to use any of the topics mentioned
when you write email to the group.

Please take this survey only once.

----

Possible answers are:

o I am taking a form of cortisone medication
o I am taking medication to reduce salt loss
o I experience a lot of fatigue
o I experience a lot of anxiety
o I am often depressed
o I have "attacks" and feel "dysfunctional".
o Excess hair is still a problem for me
o I am unable to work
o I find that diet influence my symptoms
o My sleep or lack of sleep influences my symptoms
o My doctor has informed me about this illness to my satisfaction
o I feel better since taking medications for this illness.
o I feel worse since taking medications for this illness.
o Other people in my my family have been diagnosed with 3Beta HSD
o I have more panic attacks since taking meds
o I have fewer panic attacks since taking meds
o I've never had panic attacks
o I often feel a sense of dread or doom
o Eating too much sugar upsets how I feel
o Moodiness is a problem for me
o I have problems with concentration
o I experience muscle aches and pains
o I have periods where my thinking is foggy
o I have a problem with memory
o I've also been diagnosed with Polycystic Ovarian Syndrome


To vote, please visit the following web page:

http://www.onelist.com/surveys/CAHwith3BetaHSD

Note: Please do not reply to this message. Survey votes are not collected
via email. To vote, you must go to the ONElist website.


Thanks!

CAHwith3BetaHSD Owner

Perhaps it would be most helpful to find out who's now taking
a cortisone type drug to help the 3Beta HSD condition and
who isn't.

Here's my experience many years ago:

I was seen at NIH (National Institute of Health) and was given
a small dose of dexamethasone and had negative results,
but I was also extremely stressed out by work conditions and
other conditions. My sweet tooth increased uncontrollably,
gained alot of weight, and the scariest part of it was muscle
weakness where I couldn't pick up not-too-heavy objects.

Unfortunately, the trial period of cortisone ended when
I was sent to the Hematology Department because my white
count continued to increase. I was told I might be in
the early stages of leukemia and took monthly tests for
over a year.  (leaving a lot out here for the sake of
brevity) but NIH no longer followed me because they
believed I had leukemia, so they told me a private
doctor should follow me. I wound up developing an ulcer
and my private doctor told me to stop the cortisone.

I hope all of us with 3Beta will share any experiences
either postive or negative when taking a cortisone
medication.

Deb

Ortiz3@... wrote:
>
> From: Ortiz3@...
>
> Hi all,I'm a new member and I don't know if I have CAH,but I know my adrenal
> gland is overproducing DHEA-S and I don't know for sure what is causing
this.Robin


Robin, what did your doctor tell your about your other hormone
levels?

Hi all,I'm a new member and I don't know if I have CAH,but I know my adrenal
gland is overproducing DHEA-S and I don't know for sure what is causing
this.Robin

Dr. Gabe Merkin has a website with many excellent articles.
Here's one about why a low-salt diet isn't good for us,
particularly those of us with CAH:

----------------------------------------
VERY LOW-SALT DIETS ARE HARMFUL

                             Report #7046; 3/5/97

Recent research shows that very low-salt diets can harm you (1), and
that the vast majority of people will not lower their blood pressures
when they reduce their intake of salt (2).

For the last forty years, many doctors have recommended low-salt diets.
Many more-recent papers show that severe salt restriction can increase
your chances of getting a heart attack (3) by raising blood pressure (4)
and blood levels of the bad LDL cholesterol (5). People on low-salt
diets have a much higher death rate (5).

Severe salt restriction causes your adrenal glands to produce large
amounts of a hormone called aldosterone and your kidneys to produce
large amounts of another hormone called angiotensin that constrict blood
vessels and raise blood pressure (1,6). Obese people are extraordinarily
sensitive to salt restriction because being overweight prevents your
body from responding adequately to insulin and raises insulin levels.
Since Insulin, itself, causes the body to retain salt, salt restriction
raises blood levels of insulin which make a person hungry and fatter.
Eating white flour and sugar makes your body much more sensitive to salt
and restricting these food products decreases salt's ability to raise
blood pressure (7). The 40% chance of lowering blood pressure with the
most popular drugs is much lower than the 60% success rate of going on a
low-fat diet and losing weight (8,9), so changing your lifestyle is far
more effective in reducing high blood pressure than just taking drugs.

Dr. Gabe Mirkin

     1) BM Egan, KT Stepniakowski. Adverse effects of short-term,
very-low-salt diets in
     subjects with risk-factor clustering. American Journal of Clinical
Nutrition 65: 2
     Suppl.(FEB 1997): S671-S677.
     2) JAMA May 21, 1996.
     3) Hypertension 25: 6 (JUN 1995): 1144-1152.
     4) Klin Wochenschrift 1990; 68: 664-668.
     5) Klin Wochenschrift 1991 69 suppl): 51-57.
     6) American Journal of Hypertension 7: 10 Part 1: OCT 1994: 886-893.
     7) TA Kotchen, JM Kotchen. Dietary sodium and blood pressure:
Interactions with other
     nutrients. American Journal of Clinical Nutrition 65: 2 Suppl.(FEB
1997): S708-S711.
     8) Hypertension 1991; 18 (suppl 1): 115-120.
     9) American Journal of Hypertension 8: 11 (NOV 1995): 1067-1071.

Hello!

Thanks for joining CAHwith3BetaHSD mailing list. As you
already know, doctors don't have a lot of information to
share with us about this disorder, which is the reason
for this mailing list.

Since CAH can also effect other body systems, I thought it would
be helpful, to let everyone know that other health issues tend to
go along with this disorder.

For example, I suspect some of us also have polycystic ovarian
syndrome (PCOS)as well since high levels of androgen and
testosterone can cause PCOS symtoms.

Another disorder, fibromyalgia (achey or painful muscles,
fatigue, mood disturbances, etc.) may also be a part of the
CAH problem.

Hopefully, we'll be able to ultimately figure out which of
3Beta HSD deficiency from CAH caused by other deficient
adrenal enzymes and how we can help one another and possibly
our doctors as well, to understand this disorder.

Feel free to post any articles or information you come
across so that we can match notes.

Thanks!

Deb

This is a welcome message to everyone who subscribes
to this newsgroup.  Hopefully, we'll openly share
information, many triumphs and few defeats with one
another in hopes that we'll have a greater understanding
of 3Beta HSD. Some of you may already know that early
onset or classical CAH of this enzyme usually causes a
child to die, so unlike the other types of CAH, there
are only those of us with late onset who'll be
discussing the issues we confront in achieving an
improved quality of life in this newsletter.

CAH is considered to be a rare disorder. Within the
category of CAH disorders, there are subtypes and
ours is seen much more rarely than other types.
Researchers believe that it's origin stems from
an inherited autosomal recessive genes, one from
both parents who carry the genes, but the parents
do not manifest the disorder.

We have very few members, so feel free to inform
anyone who has this particular enzyme deficiency to
join us.

Thank you!