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Hi everyone. I have almost every symptom of Diabetes Insipidus (DI) and labwork from last week indicates I may have it. More tests will be conducted, but in the meantime, I’m wondering if anyone here has it?
DI is not in any way related to Diabetes Mellitus (“type 1” or “type 2”). It has nothing to do with insulin or sugar consumption. Rather, it’s root cause is Hypopituitariantism in the brain, leading to hypothalamus dysregulation of ADH and Vasopressin, and thus an overall imbalance in the body’s ability to regulate fluids, with results such as extreme thirst for the coldest drink possible (Polydipsia), severe tooth decay due to underlying dry mouth, overheating / temperature dysregulation, and nocturnal polyuria.
The treatment is typically taking a prescription Vasopressin supplement, Desmopressin (DDAVP). I know some of you take this, but do you actually have DI? It’s pretty rare.
The pituitary can be damaged during head injuries, of which I’ve had many via snowboarding - yes, even through my helmets. I always wear a helmet, in any sport, since I was age 22. I’ve had eight Traumatic Brain Injuries (TBIs), including one that put me in a coma for four days. My incontinence began not long after the concussions. My urologist has always assumed my incontinence is caused by damage I did to my lumbar spine when I fell down a cliff going 25mph and permanently severed a bunch of nerves in left lower trunk. For instance, I have zero sensation in my left buttock (except occasional phantom pain, twitters/spasms, and insatiable itch), which “feels” way weirder than you might be able to imagine.
Anyway, turns out, there may be a different cause: damage to my brain. I’ll keep you posted as the tests progress. DI doesn’t run in my family, except that several women have had Gestational Diabetes (a form of DI), including my mom when she was pregnant with me. Thyroid and reproductive disorders are rampant in my family. DI alters every hormone in the body.
I don’t mind having yet another brain MRI (though this time focused on my pituitary rather than damage to my frontal lobe). But I am particularly leery of the inpatient Fluid Deprivation Test:
en.m.wikipedia.org
Has anyone had that test and if so, how was it? How king did your deprivation last; the full 18 hours, or less? Sounds like torture, but if it gets me a more accurate diagnosis and better treatment, I’ll certainly try it.
Thanks in advance for any info shared.
DI is not in any way related to Diabetes Mellitus (“type 1” or “type 2”). It has nothing to do with insulin or sugar consumption. Rather, it’s root cause is Hypopituitariantism in the brain, leading to hypothalamus dysregulation of ADH and Vasopressin, and thus an overall imbalance in the body’s ability to regulate fluids, with results such as extreme thirst for the coldest drink possible (Polydipsia), severe tooth decay due to underlying dry mouth, overheating / temperature dysregulation, and nocturnal polyuria.
The treatment is typically taking a prescription Vasopressin supplement, Desmopressin (DDAVP). I know some of you take this, but do you actually have DI? It’s pretty rare.
The pituitary can be damaged during head injuries, of which I’ve had many via snowboarding - yes, even through my helmets. I always wear a helmet, in any sport, since I was age 22. I’ve had eight Traumatic Brain Injuries (TBIs), including one that put me in a coma for four days. My incontinence began not long after the concussions. My urologist has always assumed my incontinence is caused by damage I did to my lumbar spine when I fell down a cliff going 25mph and permanently severed a bunch of nerves in left lower trunk. For instance, I have zero sensation in my left buttock (except occasional phantom pain, twitters/spasms, and insatiable itch), which “feels” way weirder than you might be able to imagine.
Anyway, turns out, there may be a different cause: damage to my brain. I’ll keep you posted as the tests progress. DI doesn’t run in my family, except that several women have had Gestational Diabetes (a form of DI), including my mom when she was pregnant with me. Thyroid and reproductive disorders are rampant in my family. DI alters every hormone in the body.
I don’t mind having yet another brain MRI (though this time focused on my pituitary rather than damage to my frontal lobe). But I am particularly leery of the inpatient Fluid Deprivation Test:

Fluid deprivation test - Wikipedia
Has anyone had that test and if so, how was it? How king did your deprivation last; the full 18 hours, or less? Sounds like torture, but if it gets me a more accurate diagnosis and better treatment, I’ll certainly try it.
Thanks in advance for any info shared.