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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. |
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There is no answer at this time. |
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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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