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Q: idiopathic diabetes insipidus ( No Answer,   4 Comments )
Question  
Subject: idiopathic diabetes insipidus
Category: Health
Asked by: amulekii-ga
List Price: $75.00
Posted: 23 Mar 2005 16:36 PST
Expires: 22 Apr 2005 17:36 PDT
Question ID: 499424
I will pay $75 for information leading to the identification of my
disease: I will only pay you if your information leads me to a
diagnosis by doctors. I will pay even if the disease is untreatable. I
will pay even if the disease is psychogenic.

It's some kind of diabetes insipidus. I have a constant thirst (which
is, of course diminished by drinking). I have to drink consantly. I
have meticulously measured it at times, and it is consistently at
about 17 liters H2O a day, but it might be getting worse. My blood
sugar levels have been tested several times, and they consisently show
normal levels, so it's unlikely to be DM.

I am a 27 year old white male, and am in good, but not peak, shape. I
weigh a consistent 180 lbs. I do not smoke, drink, or take any
medications or drugs of any kind. I have no known allergies. I have no
other diagnosed diseases. I have had no problems in the past with the
exception of accidents which I will describe below. There is no
history of any diseases in my family except cancer. My mom died of
brain cancer, and my grandpa (her father) of something else that
wasn't brain cancer. My other grandpa died of Alzheimer's disease.
These are the only familial diseases I am familiar with. I was,
however, born three months premature. I eat an extremly healthy,  yet
non-fringe diet that consists of the following:

About six ounces of canned turkey or chicken.
A bowl of oats in milk for breakfast.
Boiled brown rice with nothing on it.
Boiled dried beans of many varieties with nothing or some spices on them.
A few servings of fruits
a couple servings of vegetables
whold grain pasta with ragu sauce
maybe some other thing that isn't too unhealthy.

I include this list just so you know I'm not on any weird diet, rather
I tend to eat pretty healthily.

History: I noticed this disease about 4.5 years ago. My  classic story
is that someone remarked that I drank a lot of water, and it was then
that I realized that it wasn't normal. I realized just today that I
went to a play a few months before, and I remember suffering the same
problem at the play. The point of this remark is that when I ?noticed?
it, it had already been ocurring for at least several months. That
takes us to . . .

Leads:

The most prominent lead so far is that 5.5 years ago I was in a major
accident in which I was hit by a truck while on my bicycle. I do not
remember the accident, but I did have a single flashback while in the
ambulance. I was unconcious for 45 minutes (I was told) and hit the
hood, going up over it, and through the windshield. I was not wearing
a helmut, but MRI's and less sophisticated techniques suggested that I
suffered no brain damage. I am abolutely certain that I did not need
to drink abnormal amounts of water from a time at least six months
before my accident. So the disease manifest itself within six months
of my accident, be that before or after. For years, I suspected this
was the source of the problem because head injuries have been known to
damage the pituitary stock, and lead to lowered vasopressin levels,
and thus inability to retain water. Unfortunately, two vasopressin
tests done on two different occassions showed normal levels of
vasopressin.

Additionally, I feel sick quite often. I seem to go on a cycle where
about once a week, I will feel really crappy for at least a day.
During this time, my appetite becomes ridiculous, and thirst seems to
increase as well, but not in proportion to appetite. It does, however,
increase. One time I was sick and I drank 12-14 liters of water just
during the night (when it is easier to measure) for a few days. I must
constantly eat or the sickness will be much worse. By sickness I mean
nausea, dizziness, weakness, hunger and headache.

Additionally, I seem to show some symptoms of hypoglycemia. If I do
not eat quite frequently, I feel very weak, and my thinking becomes
very slowed, and I get a huge headache. I have noticed that my peers
are able to spend several hours on just a sandwhich or some small
amount of food. However, none of these symptoms is in the obscene
category, as is my drinking. They could be manifesations of a healthy,
if fast, metabolism.

Sorry, there's a lot of information that may be extraneous here, but
it may be relevant. This problem is quite prohibitive, and I am
concerned about what it means. If you give me information that leads
me to identify it, I will pay you the money. Finally, I have already
done significant research on this subject, so the answer will have to
be something more than a general website on DI, unless that page has
some critical information that applies specifically to my set of
conditions. I just don't want no pansy answers. This is a difficult
question that has already stumpped my endocrynologist. I already have
a lot of knowledge on the subject, and if the asnwer just repeats what
I already konw, it will be insufficient.
Answer  
There is no answer at this time.

Comments  
Subject: Re: idiopathic diabetes insipidus
From: jr2000-ga on 28 Mar 2005 21:11 PST
 
This is a very curious history you present.  I wonder if I might just
ask some clarifying questions.  You mention that your blood sugars
have been tested and found to be normal.  I assume your
endocrinologist has already performed all the appropriate tests
including glucose tolerance testing, glycosylated hemoglobin,
c-peptide, kidney function, liver function, adrenal function, sodium
levels, complete blood panels, thyroid panels, etc.  Were there any
indicators in any blood tests to indicate anything out of normal
range? Hypothalamus or pituitary damage has been ruled out by your
endocrinologist? You also mention your water input often being around
17 liters per day.  I'm wondering if you have measured your urine
output over a 24-hour period, and what that is as well.  I'm also
wondering if a water deprivation test has been performed to see if you
do suffer from dehydration when water is withdrawn.  Do you excrete
very large amounts of dilute urine, and has this urine been evaluated?
 Have you had desmopressin stimulation?  How about any MRIs? I assume
you don't consume much alcohol, don't use recreational drugs, don't
take prescription medications, and don't take in much caffeine, all of
which can cause dehydration and the feeling of excessive thirst.  When
all other physical causes are ruled out, it is generally assumed the
problem is psychogenic in nature.

I certainly hope you are able to find some answers to this problem, as
it must be very frustrating to you.

JR
Subject: Re: idiopathic diabetes insipidus
From: amulekii-ga on 06 Apr 2005 20:29 PDT
 
Thanks for looking at the case. The 17 liters/day was for a 24 hour
period. I don't know about the tests you have named, but I don't think
they have all been done. They've done basic blood and urine tests.
Additionally, there was an MRI done on the pituarity, but showed
nothing. I'm not sure if they looked at the hypothalamus. There was a
trace of blood in my first vasopressin test, but it disappeared in the
second one. They haven't found anything abnormal. It turns out they
failed to tell me that in my vasopressin tests, I was supposed to go
without drinking water for the night. I don't see why this would
change, because wouldn't my vasopressin be expected to go up if I were
fasting? Thus, if they were expecting high, and they said it was
normal, wouldn't that mean the basal level was normal? Actually, that
suggests to me that the pituarity might actually be screaming at the
kidneys; more consistent with nephrogenic DI in my opinion.

Another clue: For the fasting test, I woke up at 2:00 am (I always
wake up few times in the night to drink a liter or more of water.) and
I drank a bunch then, but didn't drink until after I gave blood and
urine. The results aren't in yet, but going that long without water
made me quite sick all day.

A crucial things I forgot to mention above are that I am able to
concentrate urine. I haven't seen it super concentrate in years, but I
can make it pretty yellow. Yes, usually, it's large amounts of dilute
urine, but I've been able to concentrate it.

I haven't done the water deprivation test. I'm going to really push my
endocrinologist for it if the ADH tests come back normal (hopefully
high as I have predicted. I say hopefully, because I'm tired of people
thinking it's in my head.). I'm sure that if my endocrynologist is
willing to follow it, we can find something. My problem is that most
doctors seem to think I'm fine once they find out that it's not DM.

I'm sorry that I falied to mention all the other health things you
mention (all kinds of drugs of all kinds). Yeah, actually, it's a zero
on all of it. I've never drunk a drop of alcohol (exepct Niquil), nor
smoked, nor drugs. I've never drunk coffee or tea. I've had,  like, 10
cokes in as many years, and I take no drugs of any sort.

About the psychogenic option. I'm willing to consider it; but it
frustrates me that people (I'm not referring to you here, since you
haven't done this.) seem to jump to the conclusion that this is the
most likely cause. The principle reason I doubt psychogenic causes is
just because it doesn't feel psychogenic. I mean, I admit that I was
OCD when I was a kid. I'm some instances pretty bad. I'd have to check
my desk every 5 minutes (I'm not exaggerating) to make sure it was
still organized, and I'd have to make sure there was symmetry in
anything that touched my skin (I'd have to touch the other side
equally). But this feels completely different. I have a genuine
overpowering THIRST. I mean, I know what compulsive behavior feels
like, cause I have done a lot of things compulsively in my life, but I
don't drink to solve dress or anything. I know this confession works
against me, but I really know what compulsive behavior feels like, and
this is just so different.

Thanks again,

Nathan
Subject: Re: idiopathic diabetes insipidus
From: amulekii-ga on 06 Apr 2005 20:38 PDT
 
Put more succincly, may I propose two different broad possibilities
for the psycogenic consideration: Hallucination, or compulsiveness.
I'm against both beccause I know well what compulsive behavior feels
like. I admit that I'm highly succeptible to compulsive behavior, and
this is totally different. That leaves hallucination. Now I use this
in the broad sense, and I'm not jumping to any kind of psychotic
assumption here. I just mean a percieved sensation that is false, and
I really do feel an agonizing thirst that is the cause for my
drinking. This is possible, but I'm skeptical, because I really am a
person who is very grounded in reality. I'm an extremely logical
person. I'm an engineer, if that says anything (in bioengineering). I
realize that logical people can have hallucinations, but I also
believe that some people who are not as grounded in reality may be
more prone to imagining things, so I'm just saying I'm not that type.
So if it's a hallucination, it's strange that I don't have other
hallucinations. I mean, I don't imagine any other ailments that come
upon me (well, unless the frequent feeling of sickness is also a
hallucination). I don't know. I guess I can't rule it out. I'll see a
psychiatrist if I take all those other tests and they show nothing.
But one thing's for sure. I don't drink out of compulsion or out of a
feeling of mental need (at the concious level). I drink because I feel
intense thirst.
Subject: Re: idiopathic diabetes insipidus
From: purkinje-ga on 30 Apr 2005 20:07 PDT
 
I read this case some time ago, but, like your endocrinologist, I
couldn't really think of any possibilities (I'm a med student). I was
thinking diabetes insipidus, but then you mentioned ADH levels were
measured as normal twice. So I was thinking it could be renogenic
diabetes insipidus, where ADH (i.e., vasopressin) receptors are messed
up, and hence has no effect, meaning that you excrete a lot more
water... but that is unlikely to be caused by being hit by a car,
unless your kidneys were somehow damaged-- but that is rare; instead,
it tends to be mostly of genetic causes. But then the other day in
class one of my professors was talking about some hormonal responses
to drinking too much water, and he said that one case where this is
known to happen is in schizophrenia. Schizophrenics tend to have a
large desire to consume water. That reminded of your case, plus you
mentioned being ocd as a kid, so... hm. Just thought you'd be
interested.

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