I have just been diagnosed with Diabetes Insipidus, I am 31 years old and have had this condition my whole life. Being diagnosed is such a relief. I have just started taking desmopressin acetate and was wonder how much I should be drinking? I have spoken to my endocrinologist and GP and neither seem to have any idea, I mean just roughly what should I be drinking? I still feel thirsty whilst on the medication (still do not think my dosage is correct, 1 0.2mg tablet am and pm) I am not urinating very much (until the medicine wears off after about 7 hours) but I am totally confused as to how much fluid I should aim to drink in a day as I am still thirsty and do not want to become water overloaded. Any input from people with DI would be greatly appreciated!!! Oh and weird thing I have now noticed since taking the medicine my pee smells like.... Well pee, I'm used to no smell, I cant seem to get used to it, its so gross lol
Eugenemarlo Eugenemarlo
31-35, F
4 Responses Aug 29, 2014

just read your story. I have DI too. Ihave just found this site and posted along article. I have been taking DDAVP same dose as you for 14 years and until 1 few years back it has controlled things pretty well. Of late though I have been suffering badly with urine frequency again and so I am not sure whether the DDAVP is continuing to control the DI. Pls take a look at my article which I have just posted.
I was always told to drink 1.5 litres a day and not much more to avoid a problem with sodium levels. I have been hospitalised once with low sodium about five years ago but all the blood tests show allto be ok but don't feel right atall so going to try and find another endocrinologist who can take a real interest and help me as utterly fed up of being told it is all in my mind and that nothing is there! I have been tested for everything so this has to be related to DI. if I can help you in any way let me know

Hello, I hav had DI since I was 12. I also take the tablets. I believe I started on 1 tab but now im up to 3 in am & 4 in pm, I think I hav built a tolerance. I hav never had an issue with water intoxication. I just drink when I feel thirsty. But ur thirst should decrease when on meds. I drink about 6-8 glasses of liquids a day. If u start to notice swelling on ur legs then cut back a little. Yea my pee used to b clear when I didnt take meds, & thats still my signal when my meds run out but to hear ur urine is darker/yellow is a good sign! The meds r working! :)

Ahh thanks for your reply, that's really interesting to know. I think I might be building up a tolerance to the medication too, and I asked my endocrinologist this because that is how I am feeling and he said that doesn't happened (he has been pretty useless throughout to be honest :( and he is a private dr @ £220 for a 5 minute appointment!) I'm currently taking 1 tablet morning and night, and I have been on this dose for about 2 months now, however it only seems effective for around 5-6 hours (much less If I drink any caffeine ie diet coke!) plus I am still incredibly thirsty (noticed more thirst within the last week) initially I seemed to last 7-8 hours but I am sure it is decreasing. I can tell within minutes it seems, as soon as the medication is not in my system I seem to be drinking/peeing worst then ever before. Before I started taking the medication I was going to the toilet once every 40-50 minutes, but now once every thing has worn off it's every 20 minutes. My dr for some reason does not want to increase me dose, they want me to stagger half a tablet 4 times a day.... And night! I was feeling great about everything once I started taking the medication an being diagnosed, but recently I am starting to feel like I am going back to square one.

Yea thats really crazy, taking it 4 times a day, ive never heard of that. I hav definitely built up a tolerance. But I would see about finding a different endocrinologist, u really need someone to listen to u about this. Like I take 2 tabs in the AM & ive told my Dr that it usually starts running out atleast an 1hr early & she said an hr is ok, ur body kinda flushes it self. But anymore than that ur gonna get dehydrated again. But I hav noticed occasionally my mediconr with decide to just run out for no real reason, like 4-5 hrs early & I just take my next dose early. I really sounds like u need a higher dose....

Yeah, endos can be really resistant to upping your dose. You have to be very strong with them. I too started on tablets but quickly built up a tolerance and switched to nasal spray which my dr didn't bother to tell that was an option until the tablets were nearly useless. My current dr wants blood work every two months but I know my body better than any blood work. You should insist on knowing all your options and let the dr know how much it affects your life when he insists on going so slowly with adjustments to your dose. When I am on a proper dose I don't even think about drinking. But when I'm off it is all I can think about. Good luck

I usually drink enough to satisfy me.. I know this isn't helpful but the normal person is supposed to drink approximately 8 litres a day So, I'd say.... For people like us.. Around 9-10 litres...
but if you wanted to run an experiment yourself you could document how much you drink using bottles and such.

hope this helps alittle :/

Kezza :)

I have had diabetes insipidus for 2 years and I was trying to find that answer too. I've looked on internet and its not clear how much to drink.

Thanks for your reply Becky, I'm the same, been looking online to no avail. I feel like Im constantly borderline dehydrated, I am trying to limit my fluid intake (like I said before I still feel thirsty) if I drink too much then I become very bloated and start to get headaches. I cant seem to get the balance right, It would be great if there was some information out there just as a rough guide.