D is for Diabetes Insipidus – It’s All In My Head

D is for Diabetes Insipidus

Diabetes Insipidus

It’s All in My Head

 I have shared a little bit about my story in the past, but here is more about my disease, diabetes insipidus (DI). DI is essentially a malfunction of the body in relationship to vasopressin. This is completely different than diabetes mellitus which has to do with blood sugar and insulin.

There are two types of diabetes insipidus, central (hypothalamic) and nephrogenic. Nephrogenic means that it has to do with the kidneys not being able to respond to the presence of vasopressin adequately. Central, or hypothalamic, means that the body does not make vasopressin in adequate quantities if at all. I have the central form, so that is what I discuss today.

The hallmark of DI is drinking a lot of water and urinating a lot. The average person should drink 2-3 liters of water per day (or 9-13 cups) according to Mayo Clinic. When I first began to realize that I had a problem, I was drinking approximately 9-10 liters of water per day. For the average person, drinking that much water could cause major electrolyte imbalances that can be fatal. For me, not drinking that much would have resulted in severe dehydration.

Water bottles for the ride home (6 hours)

Water bottles for the ride home (6 hours)

There are many tests that are run to diagnose and monitor diabetes insipidus, including blood tests, MRI, and response to treatment. The final diagnostic test to separate DI from psychogenic polydipsia is a water deprivation test. In this test, initial testing is performed (weight, blood sodium concentration, etc.) and then medication and water is withheld in a controlled environment (doctor’s office or hospital), urine production is measured, and the initial tests are repeated hourly (weight, blood sodium, etc.). The general rule is to wait for the patient to lose about 3% of their body weight before the test is completed. In my case, about 2.5 hours in, I became clinically dehydrated, with nausea, vomiting, and dizziness. I also lost about 5 pounds. I “passed” the test very quickly to receive the confirmation of my diagnosis and the rest of the test was canceled.

Treatment of central diabetes insipidus is through supplementation of the body with vasopressin (DDAVP). It comes in three form injectable (usually only used in hospital situations), tablets, and a nasal spray. In animals, it can be compounded or the nasal spray can be used as an eye drop.

One of the craziest situations I had was right after my diagnosis, I had a dog come in that we also determined had DI. She and I matched symptoms and treatment response. Sadly, her DI was likely caused by a brain tumor and she passed away a number of years ago. She was a great dog.

Most cases of diabetes insipidus are caused by either an infection of the CNS (brain and spinal cord), cancer (brain tumors), trauma to the brain, or brain surgery. I have not had any of these, so I have what is caused Idiopathic Central Diabetes Insipidus. Someday, we hope to find the cause, but at least I am able to live life with just a little extra water and more visits to the bathroom!

Keep hydrated my friends!

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23 thoughts on “D is for Diabetes Insipidus – It’s All In My Head

  1. wow. that is a whole lot of water. I will go have a glass right now actually. I appreciate the clarity of this post. Hope the research finds a better solution for you and I am glad you are working with what you have so far.

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    • Yes, it is a lot of water, luckily, my amounts have been coming down dramatically from before. It is much less exhausting, although now, my arms are getting pretty flabby because I am not carrying around a gallon jug all the time! Thanks for the feedback, and yes, stay hydrated!!

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    • We don’t see it much, but I think some doctors in the veterinary world diagnose it more commonly than is really there! That being said, when I went in to Mayo Clinic, they said that of the 500 people that went to Mayo to have their DI evaluated, only about 17% of them actually had DI. It is a really crazy disease that is essentially a diagnosis of exclusion in many cases (i.e. you rule out other things and this is what you are left with!)

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  2. Man. We’re starting to think my husband might have some form of diabetes. It wouldn’t be surprising. He grandmother did, and so does his brother, but we really don’t want to get tested and find out it’s true. Guess we should get over that one, eh?

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  3. I learned so much on your blog today. On N day, I will have a guest on my blog, Quin Nystrom. She was diagnosed with diabetes as a child, as was her brother. She wrote a book, If I kiss you will I get diabetes. I haven’t read it yet. I didn’t know there were so many kinds of diabetes. Glad to read that you’re managing it well.
    Play off the Page

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  4. I thought of you the other day during a Facebook discussion of an odd local license plate. It reads “CRPNGRL.” I suggested, somewhat tongue-in-cheek, that the driver was trying to raise awareness for DI. You know, “see our peein’ girl.” 😉

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  5. This is a great discussion of this issue. I had that test a few years back because I use the bathroom all the time and get easily dehydrated. They said I was fine.
    I hope the medication continues to help you not have to lug around so much water.

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    • You are lucky, although it is also disconcerting when they can’t find the underlying problem! Good luck! I don’t have to lug as much water around any more, but sadly, my arms have much less tone to them. In the long run it is good though, because I have a bulging disc in my neck as well, so carrying the water was causing a lot of discomfort!

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  6. Hey there,
    so i have be diagnosed with DI. they say it is from a concussion i had in 2010 while playing rugby here in Australia. It was around July i had the problem and around late Nov of 2010 i started to get problems where i just wanted to drink not water but a lot of soda. Water doesn’t really cut it for me. Its like i always want soda. Anyways around June 2011 i did a water test (sorry i forget what they called it) where i was in hospital and every time i wanted to go toilet i was asked to urinate in a bot. I was there for nearly 9 hours and by the end i was so dehydrated but i kept wanting to go toilet. Then finally after, they gave me a needle in my shoulder to help me control my fluid outpour. couple of weeks later i went back to the Doctor(mind you i was in England at the time) and He mentioned i had DI. I am on medication Desmopressing spray.
    I still have a lot of question. When you want to drink a lot do you have crave for soda or is it more water?
    I read you are coming down on amounts you intake. How did you manage to do that?
    Do you have feel like when you sleep you get a itchy voice( i know it sounds weird but ever sense i had DI I’ve get this problem where i would sleep and i randomly my throat either feels itchy, or i just gets irritated. it sometimes wakes me up)?
    Do you know anyone here in Australia like a doctor, just anyone i could go see and ask more question about this problem?
    it would really be nice to hear from you and what you think.
    thank you for sharing your story.

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    • I am so sorry that you are going through this. DI is not fun at all. I usually crave water, not soda (it has always made me not feel well due to the carbonation). I do often have the cotton mouth feeling where my mouth and throat are very dry and this can cause an itchy voice. Thankfully, my desmopressin doses have helped me decrease the amount of water that I take in on a daily basis. I still drink a lot more than the average person, but I am closer to 5 liters of water a day rather than 9 liters. Some people have better luck with the desmopressin tablets rather than the spray. I use both depending on what is happening in my life (nasal spray works best for me, but if I am traveling, it is harder to use as it must be kept refrigerated, so I use the tablets – this is also true when I am working as I can’t always take my nasal spray with me). Although there is a risk of overdosing on the vasopressin and causing significant problems, I would recommend speaking with your doctor about the dosage that you are receiving. I don’t know any specific doctors in Australia, but I did find some resources that may help you.

      The Australian Pituitary Foundation, Ltd
      PO Box 105 Kellyville NSW 2155
      Ph: 1300 331 807
      http://www.pituitary.asn.au

      Australasian Paediatric Endocrine Group (APEG) – they might be able to help you find someone
      http://www.racp.edu.au/apeg

      Pituitary Foundation UK
      http://www.pituitary.org.uk

      Other areas for information include:

      Diabetes Insipidus Foundation (USA)
      http://www.diabetesinsipidus.org

      The Endocrine Society
      http://www.endo-society.org

      The Hormone Foundation
      http://www.hormone.org

      The Magic Foundation
      http://www.magicfoundation.org

      I hope this helps and that you are able to get your symptoms under control. I would try to drink more water rather than soda as it can have a lot of negative side effects.

      Peace and healing be with you,
      Melanie

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