Diabetes Insipidus 101

I’ve spent the last couple of days surfing for information on Diabetes Insipidus. I know the basics from experience: you pee a lot, it dehydrates you, makes you incredibly thirsty, so you drink a lot, and then you pee a lot. Pretty simple.

And I know what caused it for me – the pituitary tumor. The mass was on the stalk of the pituitary, which inhibited its ability to produce Vasopressin, which is the body’s antidiuretic hormone. Without it, the kidneys don’t know when to hold water – so they just release it. A lot of it.

I learned quite a bit while surfing for DI info.

I thought that it was really only something people got who had pit tumors or brain injuries. Yet 25% of all DI cases are idiopathic – meaning there is no apparent cause. Some are genetic. DI appears in animals. And sadly, in small children who often go a very, very long time without being diagnosed.

Knowing how uncomfortable untreated DI is, this really breaks my heart. The thirst you get with this is like no other thirst there is. Nothing quenches it – you can drink until you throw up, and you still need to drink more. Little kids, who pee a lot and have accidents anyway, are often tormented by having liquids withheld – the idea being that if this kid doesn’t drink so much, he won’t pee so much.

That’s like torture. Some of these kids get so desperate for liquid they get caught drinking out of the toilet.

It’s been a sort of running joke that if my medication wears off I’ll stick my head in an aquarium in a store and suck all the water out, leaving only an inch for the fish. I never thought about a small child, frantic for something to drink, in those terms. Can you imagine? Being so completely desperate that you’d stick you head inside a toilet to drink? And you’d drink it dry, and still want more…

Frequent urination and increased thirst are signs of both diabetes mellitus (the more commonly known diabetes, sometimes called “sugar diabetes”) and diabetes insipidus (sometimes called “water diabetes” and “diabetes sip and piss.”) Both require medical attention. Both can kill you if left untreated.

If you have these symptoms, see a doc. The first thought will be diabetes mellitus, but if your blood sugars come back as normal, press for further testing. Find out the cause. And especially, most especially, if your child just can’t get enough to drink and pees like crazy, fight until you know why.

I know when my medication wears off, it becomes more than just a little uncomfortable. I can pee off 2-3 gallons a day and just can’t drink enough. I don’t sleep much because I get up every 30-45 minutes to use the restroom. The thirst hurts after a while. But I’m a grownup, I know why this happens and what I need to do to fix it. A child doesn’t.

I’ll be on the medication for the rest of my life. Every day. But at least it’s not as painful as not having it.

Damn. Poor kids.

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