Hi,
You should tell us what your doses and times are so others can help you. As I
started cortef today, I won't be helping anyone with it for at least a year
probably.

I would first get rid of the zoloft (I was given several anti-depressants in the
seratonin reuptake inhibitor class, like prozac, don't recommend any Addison's
take anti-depressants) 90% of psychiatric disease could be fixed if hormones,
vitamins and minerals were tested, but what do they do? The listen to you and
then guess which crazy drug might work. Sometimes it takes several different
ones to find the right one. That is treating a symptom, not the cause. The
psychiatrist listen and learn from the pharmacy companies.



Have you had your thyroid checked? It is common for thryoid to be brought down
too in Addison's. Do you think your doctor is helping you or hurting you? You
may need a change. You might try calling the local med school and tell them
about your Addison's and ask them to help you find the most knowledgable doctor
they have too.

Test your thryroid function yourself. This is the best test for the thyroid.
Get an old mercury thermometer if you can. Shake it down before you go to bed
and then before getting up put it in your arm pit. A normal basal (morning)
temp ranges from 97.4 to 98.4. If it is less than this then you have a thyroid
problem. Take it then at noon (if morning is low) and see what it is. Write it
down for at least five days. If you use the digital (less accurate) time take
three readings and take the average. Do you have dry skin (real bad in winter)
that is your thyoid doing that. Thyroid might be a factor in your weight.
Does you hair grow funny on your head (I have straight hair, but two years ago
some started coming out scraggly and bend and won't stay down easily) thats
thyoid too.

If you think your Endo is good, then seek out a Environmental doctor to
compliment him. I've mentioned this in the previous posts. The Endo is fixing
your roof (your Addison's), but the Environ. will caulk and tuck point (mineral
and vitamin deficiencys, bowel problems, etc). He will listen to you and test
for your complaints and also find out whats wrong that you didn't know about,
like mineral and vitamin deficiencies. He found me to be the lowest in
magnesium he has ever seen. Found my Iron to high and Vitamin D to low along
with many other things. Fixing all these will improve your overall health.
These doctors treat the cause not the symptom. I highly recommend you find one
and if you have to drive far (don't drive all by yourself) (I met someone that
drives 275 miles one way to mine) then do it you will not regret it (I hope you
find one as good as mine).

I've been thinking about the toperall, you might not need it after the thyroid
is fixed up (assuming it is the problem) as thryoid regulates blood pressure.

The Cortef might need adjusting. The Cortef is synthetic cortisol and you get
at least half your energy from cortisol I bet. Thyroid hormones supply energy
too.

Here's a little lesson on how they are made.

Your body takes protein (crude oil) and breaks it down in a very complex fashion
into amino acids and then turned into cholesterol (cholesterol is a steroid and
very important). Next, cholesterol is made into pregnenolone, then that is made
into DHEA (Dehydroepiandosterone). I never tried to spell it before but I knew
how to pronounce it, impresses some people. (joking) DHEA is made into
testosterone, cortisol and estrogenic hormones. I haven't found numbers yet,
but I believe that only 25 -33% of DHEA is made in to the other hormones. The
rest stays as DHEA. (No one knows what the DHEA is doing for the body, but it
must be doing something). Well actually the liver sulfates it and it becomes
DHEA-s. So the protein goes through your body (the refinery) and produces
gasoline (cortisol and thyroid hormone).

Always get copies of your blood tests. HDL cholesterol is what is converted to
other steroids. The range is 40 - 60. Mine is 31.

I just remembered you don't mention taking florinef. In primary, aldosterone is
low and florinef fixes this. (glad I remembered that). With my secondary you
don't lose aldosterone so florinef is not needed so I don't really think about
it. Secondary you don't lose salt, so I almost overlooked it. If you don't do
it, started salting your food. Forget what you have heard about salt, Addison's
patients need it. Go to sea salt and stay with it the rest of your life. All
people should switch to it anyway.

If you doctor is not doing this stuff or telling you what I just did, I would
say you need a new doctor. Remember call the med school.

Where do you live? I'll see if I can find an Environmental doctor on the net
for you.

Oh and do you take progesterone too. When they came out with estrogen 40 years
ago they didn't know the importance of progesterone and women got cancer.
Progesterone is very important it counter balances estrogen. Estrogen builds up
the uterine wall for the egg and progesterone is kicked in to knock off the wall
if the egg is not fertilized withing 48 hours. You might know that but I'm on
a roll here.

I had my first full day of cortef today. Not sure if I noticed much (only had
two doses at 5 mg).

I'm always happy to help. It helps me too as before this week I felt alone with
this, though my wife (nurse) has been much support to me, it helps to talk to
people who really know what I go through.

I didn't know I had all this in me to type out to night. I hope I don't come
across as a know it all. I have a lot more to learn yet before I reach that
point. 12 hours per month over two years has really paid off for me (1000 more
months of that and maybe I'll know it all). The first 16 months were spent
learning gastroenterology (1st month - was told I guess IBS is what you have
after they looked in both ends and found nothing wrong), neurology (months 8 -
12), and psychiatric diseases (the whole 16 months). It was march of this year
that a figured out it was endocrin.


Keep me informed. I am interested in your getting better and maybe I might be
of help later.

Chris in St. Louis


----- Original Message -----
From: Heather Fiocchi
To: addisonsdisease@yahoogroups.com
Sent: Wednesday, December 10, 2003 1:05 PM
Subject: Re: [Addison's Disease] Dhea


chris,

you sound extremely informed, which is someting i wish i was more of! i've had
addison's going on 6 years now and who knows how long i was sick before i was
diagnosed, but i figure for what was leading up to years before i finally went
into "crisis".
I'd love to talk to you more if you don't mind the mail and questions etc. i'm
going to check out the site tonight when i get home...can't really do it at
work, but quickly let me give you a summery of me.

i'm 27 was diagnosed when i turned 21- ended up in the hospital because i
finally blacked out- about 3 months of dizzyness, exuastion, headaches, weight
loss, and my skin was orange- i couldn't remember things and would only be
comfortable when laying down.
i was misdiagnosed serverl times with ovarian failure, (which actually has
occured as a result) thyroid problems, inner ear infections and of course
everyone told me it was all in my head and i was anerexic.
turns out one of my cousins has addisons and we asked to be tested for it
while i was in the hospital and they couldn't find anything wrong.

so that's what i had and was put on meds and for the most part...haven't been
that sick....however, there has got to be a better way than this...
i've seen so many docters, they all tell me i'm fine and on the right
meds...but i just don't feel fine.
i've been told to change meds, change doses, time to take them so on.
basically i'm still really tired all the time, lacking energy, depressed,
having trouble concentrating and having alot of trouble with motavation and
keeping extra wieght off...i've gained about 20 pounds since the age of 24 on
the meds.
i take corteff, toperall (for mygrain's and shakes and blood pressure),
desogen (for estrogen) and zolaft for anxiety.
i don't know weather something else can help me with my energy...but i have
shortness of breath, chest pains, weakness and cramps all the time.
any words of advice...can it really be possible to feel like crap all the
time. don't get me wrong, i'm so thankful for being diagnosed and without the
medicine i don't know what i'd do, but i'm sure i could be doing more to help
myslef.

thanks for listening...let me know if anything rings a bell...o and vision
getting really bad too. take care, and i look forward to hearing from you.

heather

Chris Jackson <chrisgj@...> wrote:
I have also researched the heck out of DHEA. Until I found a doctor
that knew what they were doing I took huge doses to help boost my
cortisol production. You can get it over the counter at walgreens.
I started with 25 mg (the 25 is cheaper per pill than the 50 mg, go
figure)and increased it by 25 mg every month. When I reached 100 mg
daily, I decided that it wasn't doing anything for me so I lowered it
to 75 mg. Two days later (for me if I increased or stopped taking
because of tests, I noticed it took 2 days for the difference to kick
in) I collapsed on the floor and could not move for 1/2 hour. I
thought something is not logical here. I thought maybe I was
deficient in DHEA too (test later said I was very defiencient). I
decided to take 100 mg every hour until I felt better. After about 4
hours I was almost back to where I had been before the collapse. In
the past if I took a leap backward, it took a couple of days easy to
come back up. I started taking 300 mg per day and felt like it was
really helping me. (100 mg hardly noticed a thing) I increased
withing a month to 750 mg per day. With 25 mg pills thats a lot of
popping. I take 400 mg right when I wake about 6am (before DHEA you
couldn't get me up before 9 am) 200 mg at noon, 100 at 6pm and 50 mg
at bed time. This new doctor tested my DHEA level last week (I had
been off it completely for a week) and found it at the very low end
of the range) He gave me prescription for Cortef and DHEA and I
start the Cortef tomorrow morning.

If you are going to doctor to doctor and getting no where try the
DHEA like I decribed and DON'T give up. Also I have trying going
much higher (1000, 1500 2400), but found that one day is all that you
should do. Too much will suppress cortisol production and then you
will feel maybe worse than before. For example if you have a death
in the family you might take 1500 for a day or two but then go back
to where you were. I found taking 100 mg immediately after a near
miss in my car helped me too. I used to shake and felt like my spine
disapeared and my muscles turned to jelly. The megadoses of DHEA
helped eliminate that. If you find yourself collapsed on the bed
then take 400 mg the first hour and 100 mg every hour after that
until you feel better. This is beside you regular doses.

You will not become superman but you will probably be able to
function enough to do your job and be a little more use to your
family. This is to hold you until you find a doctor to prescribe the
hydrocortisone.

Important to note that super doses of DHEA is hard on the liver so
you MUST take Milk Thistle 2 but not more than 3 times per day to
help the liver metabolize the DHEA. Also start with 50 mg the first
week and add 50 mg every week the first month to make sure things go
all right for the first month. Then if you feel like going higher
then the second month add 50 mg every 2 weeks. Don't be in a hurry
go slow and pay attention to your body. Remember 750 is the abolute
max I take. If you starte feeling bad, then maybe stop for 24 hours,
then continue at a lower dose.

This information is from my knowledge and experiance. You can't hold
me responsible if something goes wrong. I have researched DHEA
heavily for 6 months and have heard of no one dying or hurting
themself with it but that doesn't mean this hasn't happened.

I recommend reading "The Super Hormone Promise" same authors as
of "The Melatonin Miracle" William Regelson, M.D., & Carol Colman.

Four other books I highly recommend you get your hands on.

Adrenal Fatigue The 21st century Stress Syndrome James L. Wilson
N.D.,D.C.,Ph.D.

From Fatigued to Fantastic Jacob Teitelbaum, M.D.

Dhea A Practical Guide Ray Sahelian, M.D.

America Exhausted Dr. Edward J. Conley

Don't be afraid to read about similar things like CFS. Also read
about nutrition, leaky gut syndrome and if you have taken enough
antibiotics then you probably do have a problem with your gut
absorbing nutrients (Candida yeast overgrowth can happen with too
much anti-biotics. If you have trouble with a white coating on your
tongue and bad taste that oral hygene doesn't help that that is
probably what it is) I have spent 12 hours per month on the internet
for two years and have read a dozen books. It paid off in knowlege
and I found my current doctor on the I net.

Once I figured out my problem was endocrin I set out to learn
everything about how the glands work alone and with each other.
Don't for get to learn about the sex glands and thymus gland. The
more you know the more power you will have over your own health.
Take the power away from the doctors. Don't be passive, be agressive
and proactive. Look for a specialist in Environmental medicine along
with the endocinologist you will thank me. In my case the Environ.
doctor is acting as both the endocrin and environmental. He is
trained in both.

Good Luck
Chris in St. Louis


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Heather B. Fiocchi


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