Diabetes Insipidus (DI): does anyone have it?

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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:


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.
 
I'm a type 2 diabetic so your post caught my eye...what is DI? I'd never heard of it. You presented a very informative post. I sure learned something new. Sounds like you have lived a very active life. Good fortune finding the additional information you seek.
 
Here are some links for more info about Diabetes Insipidus (DI):




I frequently (2-4 times per year) get tested for Diabetes Mellitus because both type 1 and type 2 run rampant in my family; I’m the only person on my both my mom’s and my dad’s side who doesn’t have it. But my A1C is, and has always been, normal, as have my kidney function tests. So fortunately I don’t have that kind of diabetes. I’ve witnessed how hard it is to live with, so I’m sorry you’ve had to live with it, @56vw .
 
Snow, Your post is the first time I've heard of DI, so I can't help you out with any info. But please know that I'm wishing you well and hope you will get an accurate diagnosis and manageable treatment plan soon.

I hope you've decided not to do any more sports that could cause TBIs.
 
With advancing age, one of the first conditions medical professionals seek to RULE OUT is the presence of or a tendency toward diabetes. It's not an infrequent finding and it tends to be related to many other causes or conditions.
 
Hi @snow, I'm sorry to hear you may be facing this issue but I know you will get an accurate diagnosis one way or the other. Does this form of diabetes have dietary restrictions? As you face this new challenge, you definitely have my best wishes and everybody here is thinking of you!
 
I have not heard of it but it sounds very extensive, I wish you the best and hope the results go in your favor or you get it controlled.
 
@billliveshere DI’s primary treatments include taking Desmopressin, and following precise fluid intake restrictions because the body can’t properly regulate fluids, so it’s either over or under hydrated. In Greek/Latin, diabetes actually means “to siphon off.” It was the term initially used to describe anyone with OAB.

DI has nothing to do with sugar or food; it affects the way the body utilizes liquid.
 
Hi @snow, I didn't know that about the fluid intake restrictions because the body can't regulate fluids. And also didn't know that diabetes means "to siphon off." You're a good teacher!
 
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