Discussions By Condition: I cannot get a diagnosis.

3 years undiagnosed, I finally think I know what's wrong

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: not a fifty five
  • October 31, 2007
  • 11:17 PM

I'm definately getting tested immediately for diabetes insipidus, but I'm asking here as well if anyone knows anything about this. (next 2 paragraphs is just background if you want to skip, last is what I want to say.).

I'm a 21 year old male, and for 3 years I've been dealing with terrible joint pain (no swelling), fatigue, alternating abrupt weight gain and loss, alternating abrupt constipation and diarrhea, etc. nasty stuff. One of the stranger things I've experienced is an almost total lack of sweat after exercise, and extreme thirst, like really really thirsty. After going on a walk for example I'll drink over a gallon of water. When I first told a doctor 3 years ago about this he practically laughed at me and said I was just depressed and thinking too much about my health (RRRRRRRRG! this isn't a rare disease, he should have known shouldn't he?!). So, thinking this odd symptom was just me being crazy or something I didn't ever tell any doctor afterwards.

Anyways lately the symptoms have gotten severe and I've been getting both diarrhea and constipation, which I thought was really weird, so I looked up them both here and this came up. 3 years ago I did the same but diabetes came up negative, and I thought diabetes (the sugar kind)and DI were the same thing so I SKIPPED OVER it in my symptom search! God I'm so *****d off at myself! :( Anyways, it became clear this explained the weirder symptoms, like feeling extremely hot with no fever, joint pain without swelling, parts of my skin getting hard from dryness.

What I'm asking is, is there anything else I should ask my doctor about, and also can I still have nephrogenic DI if my pee turns yellow when extremely dehydrated (its inability to concentrate water right)? I'm trying to think how I could possibly have pituitary DI, and I cannot. I wasn't born with this, don't have headaches, wasn't ever hit in the head really hard, or anything like that.

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10 Replies:

  • DI is a rare disorder that results in excessive thirst and excessive passage of very dilute urine. It is due to a hormone deficiency in the pituitary gland, which is situated at the base of the brain. Diabetes Insipidus results from a decreased production of antidiuretic hormone ( vasopressin or ADH) ADH is the hormone that stops the kidney from producing too much urine.ADH is produced in the hypothalamus, then stored and released in the blood stream by the posterior pituitary. DI can also occur in patients with normal levels of antidiuretic hormone. This happens when the kidneys do not respond normally to ADH. This condition is called nephrogenic diabetes insipidus (NDI). There are several causes for DI. Tumor of the pituitary gland, head injuries, infections, brain tumors, kidney disease and sarcoidosis are some. Evaluation should include a 24 hour urine test. If diabetes insipidus is suspected hopitalisation may be required to do a water-deprivation test that is helpfull in determining the levels of ADH. Do you have any other kind of symptoms other then exessice thirst? Sometimes people have alot of symptoms that they don't think about since they come on so gradually. I am thinking of hypopituarism. Here are some of the symptoms and you may or may not have all of them. If you do have some, it might be worth having it looked into. Fatigue A decline in energy Muscle weakness Nausea Constipation Weight loss or gain A decline in appetite Abdominal discomfort Sensitivity to cold or difficulty staying warm Visual disturbances Loss of underarm and pubic hair Joint stiffness Hoarseness Facial puffiness Thirst and excess urination Low blood pressure Headaches Hope this helps Kiera
    Anonymous 42789 Replies
    • November 1, 2007
    • 09:01 AM
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  • I have or have had all of the symptoms above, except for hoarseness, over the past 3 years (yes both the weight gain and loss!). Strangely, the excessive water drinking only becomes severe with mild exercise. Over 3 years I've grown from mild fatigue (and drinking 2+ gallons a day) to almost total inactivity and drinking a few liters a day. Both times my urine is totally or almost totally clear, even though my skin is dry. Oh, and I never sweat upon getting hot or after exercise, back when I could exercise. I just get really, really hot.
    not a fifty five 34 Replies
    • November 1, 2007
    • 09:27 AM
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  • gack, reread your symptom suggestions, no headaches, puffiness in face (tho puffy in hand and ankles) and no visual disturbances. Edit: offtopic, but why is the edit option only appearing on my last post, anyone? Also I looked up hypopit. here and yes, I do suffer about half of the symptoms listed on wrongdiagnosis, but like 90% of DI. I'm not a doctor, tho, so I will inquire about both on my next appointment.
    not a fifty five 34 Replies
    • November 1, 2007
    • 10:41 AM
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  • Edit: heh, sorry again, but when I said my pee was yellow earlier that was only once, after becoming extremely dehydrated following the antibiotic flagyll, after which I was throwing up water on the 8th and 9th day. I was earlier sent to the ER due to what they suspected was salmonella or diverticulitis after having a week or two of mountain dew colored diarrhea o.O My general doctor thought I had appendicitis after listening to my stomach with one of those doohickeys, but this was not the case. The symptoms of earlier posts, however, have been persistent. Bleagh, this 15 minute edit thing is annoying lol. Anyways, as is evident, I can't sleep -.-
    not a fifty five 34 Replies
    • November 1, 2007
    • 11:04 AM
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  • Just wanted to comment again, after your posting. You should also try googling the symptoms of cyclic cushing, since that would explain the weight loss/gain, water retention and sleep problems. It could even be an explanation of the episode with the diarreah and it can cause DI. The best of luck in your search! Kiera
    Anonymous 42789 Replies
    • November 1, 2007
    • 07:24 PM
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  • oh geeze.. maybe I'm just getting too worked up about this but I've been looking into pituitary tumors and apparently they sometimes cause pain in the back of the left eye, which I do have, and have had for years. I do also have huge stretch marks wherever I've gained weight, similar to cushings, yes. That might be nromal tho *shrug*
    not a fifty five 34 Replies
    • November 2, 2007
    • 00:11 AM
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  • If you want to see how other with cyclic cushing feel, you should try reading more at www.cushing-help.com . They have alot of info on the subject and have people with both cyclic and full blown cushings at their boards. Wish you the best of luck... Kiera
    Anonymous 42789 Replies
    • November 2, 2007
    • 06:55 AM
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  • What do you mean by hard areas of the skin. Look up scleroderma.
    rad-skw 1605 Replies
    • November 2, 2007
    • 11:58 AM
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  • Just some important info on scleroderma: With scleroderma you would have thick dry skin patches and DI is not seen with scleroderma that is an autoimmune disease. Kiera
    Anonymous 42789 Replies
    • November 2, 2007
    • 11:03 PM
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  • I can't figure out if the original poster has been tested for D.I. yet.
    rad-skw 1605 Replies
    • November 3, 2007
    • 10:41 AM
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