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? diabetes insipidus

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Old 03-14-2013, 09:07 AM   #1
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? diabetes insipidus

I think I may have diabetes insipidus, either pituitary or nephrogenic. My Dad had DI, I have connective tissue disease and some mild kidney issues. I have extreme thirst, orthostatic hypotension, very dilute urine and recently have wet the bed at night a few times. DISTRESSING! I would like to hear from anyone who has this and how your treatment is working, how it was diagnosed, etc. I know it is uncommon and I'm afraid I will just be blown off by an endo, and cannot even get in to see one unless my PCP has already diagnosed it. I can get an ADH done on my own, but that won't help if it is nephrogenic. Any ideas?

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Old 03-18-2013, 10:42 PM   #2
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Re: ? diabetes insipidus

I just had a transsphenoidal surgery on Wednesday and currently have diabetes insipidus because of the surgery. It started by me waking up after surgery immediately demanding ice and water. I was taking in 850ml of water an hour and did not absorb any of it. I was told anything over 250ml an hour is excessive. From my experience, it is something that you KNOW you have. My thirst would never quinch. I kept chugging water glass after water glass and nothing worked and my mouth was so dry it was like sandpaper. I had to have a catheter for 5 days and just recently was put on DDAVP in order to control it and I finally am down to drinking about 32 oz of water and I have started to use the restroom 'normally' instead of literally every 5 minutes.

If you seem to be going to the bathroom non-stop, urinating more than you are taking in, then definitely go see the doctor. In just 1 day it made my blood supply fall way below what it should be, my waking heart rate was only 38 beats per minute and it essentially was catastrophic. Just keep an eye on your input and output and make an appointment with the Endo. It is much better to be safe than sorry.

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