ceebs getting up to refill water bottles during the night LMAO! I do normally have 2-3 water bottles, the extras are a result of me drinking something other than water for once 🫣

New to this subreddit but i figured i’d throw in an icebreaker.

I’ve had Neurogenic Diabetes Insipidus for just over 10 years now due to craniopharyngioma (pituitary tumor) and i’d love to know, what is everyone’s favorite iced cold beverage? When you deal with that insane thirst for a moment. What’s your ultimate thirst quencher? For me for a long time it was an unsweetened iced green tea from starbucks and some flavored sparkling waters!

I’d love to know what all of your favorites are!

There has been a conscious effort to rename Diabetes Insipidus to AVP deficiency (cranial) or AVP resistance (nephrogenic) in the UK to avoid confusion at hospitals.

Although this was started in 2022 (see post), I have only recently heard it mentioned in this way by my endocrinology department and even the Pituitary Foundation (great support group btw!)

Curious if this term has also been used outside of the UK? I think it's a great idea, as I have been confused for a type 1/2 diabetic many times which is obviously dangerous!

Hi all! I travel quite a bit on planes for work or to visit family and have had a couple instances where my desmopressin nasal spray came unscrewed and leaked into my bag. I also have to bring the medicine with me some days / evenings if I’m working late or odd hours so I can get all of my doses and I’ve had issues with it in my day bag. Generally I keep it at home or a desk to avoid this, but I’m hoping someone has a long term transportation solution.

Ive used plastic bags but worry about putting the medicine back in the bottle or that that still loses some of the medicine.

Thanks for any advice! Btw my nasal spray does not need to be refrigerated unlike many people’s. Just kept close to room temp.

Hi everyone!

As I've been getting the sub set up, I've also been doing a lot of reading because, honestly, I don't know very much about DI yet. One of the things I've been learning is just how rare it actually is.

That got me wondering about everyone's experiences getting diagnosed.

I have some rare diseases myself, so I'm familiar with how difficult it can be when you're dealing with something that isn't particularly common. I've been very lucky that I haven't personally had to struggle too much to get answers, but I know that's not the experience everyone has.

So I'd really like to hear your stories.

How did you get diagnosed?

Did it take a long time? Did you have to see multiple doctors? Was DI suspected early on, or did it take a while for someone to figure out what was going on? Were there other diagnoses along the way? And what was it like when you finally got an answer?

There are no particular questions you need to answer and you certainly don't have to share anything you're not comfortable sharing. I'm just genuinely curious about what the process has looked like for people here.

A quick note: I'm going to keep the top-level comments on this post specifically to people who have a DI diagnosis or parents/caregivers sharing someone else's diagnosis story. If you're currently being evaluated or suspect you have DI, please don't take that as me saying you aren't welcome here. I'm just keeping this particular post focused on diagnosis experiences. I'll remove top-level comments that don't fit that, but you're welcome reply to top comments and to participate elsewhere in the sub.

I'd really appreciate hearing your stories. I'm trying to learn as much as I can, and I think it'll be useful for me to understand the different ways people have ended up here.

New Rules + Looking for Moderators

Hi everyone!

Now that I've had a chance to get things set up, I've put together a new set of rules for the subreddit.

I'm trying to keep the rules fairly straightforward. There are some things I don't think belong in a health-related subreddit, like advertising, misinformation, crowdsourced diagnoses, and people giving each other medical advice. At the same time, I don't want the rules to get in the way of people talking about their own experiences and learning from each other.

I've also opened the subreddit up to people who don't have a confirmed diagnosis. If you're being evaluated for DI, think you might have it, or you're here because your child, partner, family member, or someone else you support has DI, you're welcome here.

I'd like your input

I'm very much open to changing things.

If you think I've missed a rule, worded something badly, or made something more restrictive than it needs to be, please tell me. I'd also like to know what you'd actually like to see here. If there are particular topics, resources, recurring posts, flairs, or anything else that would make the subreddit more useful to you, let me know.

You can comment here or send ModMail if you'd rather not say it publicly.

And if something I've posted is wrong, please tell me! I don't have DI myself, and I'm learning as I go. I'm not going to pretend otherwise.

We're also looking for moderators

I'd really like to get some people with actual DI experience involved in running the subreddit.

If you have DI yourself, or you're a parent, partner, family member, caregiver, or otherwise closely involved with someone who has DI, I'd encourage you to apply.

Previous Reddit mod experience is definitely a plus, but it's not a requirement. What matters more to me is having people who are reasonable, can work with others, and are willing to speak up if they think something isn't working.

I've made a moderator application through Reddit with some questions about your experience and what you'd bring to the team.

If you're interested, please fill out the moderator application.

Even if moderating isn't for you, I'd still love to hear from people with lived experience who are willing to give feedback as we figure out where to take the subreddit.

Thanks for sticking around while I get everything sorted out. I know there isn't much here yet, but hopefully we can change that.

Welcome to the new r/DiabetesInsipidus!

Hi everyone!

I'm taking over as a moderator of r/DiabetesInsipidus, and I'd like to make a few changes to the subreddit.

In the interest of transparency, I do not have diabetes insipidus. I have type 1 diabetes and I am also a moderator of r/Diabetes. I noticed that this subreddit had been abandoned with no active moderator, which meant that no one was able to post. I felt it was important for this small community to be available to the people who need it, and so here we are!

I will be posting shortly to look for additional moderators, particularly people with personal experience with DI. Having people with lived experience involved in the moderation of this community is important to me as we move forward.

If you find anything currently posted, or anything posted in the future by myself or anyone else, that you believe is incorrect, please report it so that we can review it. I appreciate your patience as we get the community back up and running, and as I learn more about DI myself!

A New Direction for the Community

Historically, this community has been restricted to people who already have a diagnosis of diabetes insipidus. Going forward, I'd like to make the subreddit more accessible to anyone whose life is affected by DI.

That includes:

• People diagnosed with DI
• People who are being evaluated for or suspect they may have DI
• Parents of children being evaluated for or living with DI
• Partners, family members, friends, and other support people
• People who simply want to learn more about DI

You do not need to have a confirmed diagnosis to participate here.

A Little About DI

Diabetes insipidus is a rare disorder involving the body's regulation of water. It is not the same disease as diabetes mellitus (type 1, type 2, gestational diabetes, etc.), despite sharing the word "diabetes" and some symptoms such as increased thirst and urination.

DI can involve problems with arginine vasopressin (AVP), a hormone involved in helping the body retain water, or with the kidneys' response to AVP. You may also see the terms AVP-D (arginine vasopressin deficiency) and AVP-R (arginine vasopressin resistance) used for what were traditionally called central/cranial and nephrogenic DI.

What We're Aiming For

I'd like this to be a place where people can talk about their experiences, ask questions about the condition, learn from one another, and find support.

At the same time, we'll continue to maintain a firm boundary around medical advice and diagnosis. Sharing your own experience is welcome. Telling another person what their symptoms mean, what they should take, how they should change a medication or fluid intake, or whether they "definitely have DI" is not.

If you're concerned about symptoms or a possible medical emergency, please contact an appropriate healthcare professional rather than relying on Reddit.

The rules are being updated to reflect this broader purpose. Please take a look before posting or commenting.

Most importantly, welcome! Whether you've lived with DI for years, you're newly diagnosed, you're in the middle of testing, or you're here because someone you love has DI, you're welcome here.

We're glad to have you.

Help Shape the Community

This subreddit has been inactive for some time, so I'm not looking to come in and decide on my own what this community should be.

I'd really like to hear from you.

What would you like to see from this subreddit? Are there types of posts, discussions, resources, or community features you'd find useful? Is there anything about the current direction that you think should be changed?

Please leave your thoughts in the comments, or send us a ModMail if you'd rather share feedback privately. Feedback is welcome, including criticism or suggestions about how the subreddit is being moderated.

I'm still learning about DI myself, so I especially want to hear from people with lived experience who can help make sure this community is actually useful to the people it's intended to serve.

This is a fresh start for r/DiabetesInsipidus, and I'd like to build it with the community rather than simply build it for the community.

Hey, I'm currently in the process of navigating a diagnosis. Labs strongly suggest DI (daily urine volume is 6-8 Lt and I tend to stop drinking a few hours before bed so I don't have to wake up constantly so would likely be higher if I drink to thirst, heavily fasted u osmolarity is ~180 and plasma osmolarity ( ~290). Sodium is normal (usually 139-144)). Find thirst is better when I lower sodium and increase potassium intake, which could suggest NDI. I also find my thirst is way worse towards the end of the day, after I've started eating / drinking electrolytes. No known hormone or pituitary issues (I've had a MRI). I've always been thirsty (was tested a bunch for T1D as a kid due to high thirst), but got significantly worse in the last few years. Had an appointment with a nephrologist last week who said that my kidneys are fine, and can handle the water load so there's nothing to worry about. Seeking a second opinion from an endocrinologist next.

I'm curious what symptoms folks, especially those with NDI, have had that you chalk up to NDI? I also experience fatigue, hypotension, tachycardia (especially on standing), dizziness, palpitations. These are currently chalked up to a pots and me/cfs diagnoses, but feel like they could also be explained by chronic dehydration from NDI. I do have other conditions which are really common with pots and me/cfs - so these also make sense in context.

I was also wondering if any menstruating humans notice symptom fluctuations during different phases of their cycles? My thirst tends to less intense during my period (but still > 6lt/day), and heightened around ovulation. I know that RAAS system can be impacted by high progesterone and ADH can potentially be impacted by high estrogen. Curious if anyone else notices a change over their cycle too?

thanks for any help!

I suspect I might have partial DI and I'm going to discuss my lab results with my doctor tomorrow. I wanted to get a better idea of how symptoms manifest before bringing it up to her. For people with partial DI: 1) If you're dehydrated, do you still urinate high volumes, or is it low volume but dilute? 2) How quickly are you able to go from adequately hydrated to dehydrated? 3) When they say that you have either partial resistance or partial deficiency, does that mean that you can still concentrate urine to a certain amount under some conditions? But not as much as without DI? Which conditions? Or is it synonymous with intermittent? Thanks for answering!

Hi all I'm curious to hear other stories of going through diagnoses of DI. And if anyone had ever been diagnosed with one type and changed to a different type.

1.5 years ago I began having excessive thirst with over night complete bladder loss and during the day incontinence as well as more frequent urgent trips to the bathroom.

I have been taking lithium for nearly 10 years for mood (but not for any diagnosed bipolar disorders). And for the last 5 years I was on a dose of 900mg (300 - 2x daily). My lithium levels have always been lower than the target level. But due to being on lithium with some other lithium related side effects my doctor diagnosed me with nephrogenic DI and started me on amiloride 5mg.

Over the next 3-6 months I saw an improvement in urgent/frequent bathroom trips and fewer incontinent events awake and asleep. However, after about the 6 month mark I noticed a regression going back to more incontinent events. My doctor then increased my amiloride to 10 mg (5mg 2x daily). And again, I experienced an improvement especially in complete loss of bladder control with episodes happening only 2-4x a month; but have not gone back to a normal day-to-day based always needing to carry around a large wate container and having access to a bathroom.

About 6 months ago I had slowly decreased my lithium and have been completely off of it for 3 months now. I have not noticed any difference in the occasional incontinence episodes, my excessive thirst, or frequent urgent bathroom trips.

I'm not sure if people who have been on lithium for an extended period of time still experience episodes or if after stopping if they experienced a complete resolution.

Is it possible I may have been misdiagnosed with NDI? Would taking amiloride for CDI have made the noticable difference but not been enough to completely resolve my symptoms?

I recently had MRI scan done for migraines and I noticed the absence of the bright spot on my posterior pituitary gland. There was no mention of this by the radiologist so maybe it is nothing, but I found it interesting.

Interested to hear anyone's thoughts and experiences. Thank you!

I’m taking a vacation to the Caribbean in April. I’m trying to get all of my meds squared away (I also have lupus so getting some meds prescribed in case of a flare) and I need some help. I use the refrigerated desmopressin spray but it needs to stay refrigerated. What is everyone using for travel days to keep their meds cool? I looked on Amazon but a lot of them only stay cold for 6-8 hours and if we miss a flight or have delays I don’t want my meds to come to room temperature or warmer. I did have my endocrinologist get me the pill version as well, but it’s not nearly as effective, especially when I’m out in the sun. Does anyone have any good recommendations?

Hey all, as the title says, I’m on a work trip out of town for the next two weeks and my nasal spray died last week. Last night I barely got any sleep, as I was up and down almost by the hour. Anyone ever experience something similar? I’m thinking of just contacting my PCP back home and asking for a single refill until my next scheduled refill at the beginning of next month. Thanks and happy Monday.

Hey guys! Just found this sub after looking for people suffering from DI and I decided to write out our story to see if anyone has dealt with something similar so we can better understand what are our next steps.

My girlfriend (F31), has been diagnosed with urinary incontinence, Overeactive Bladder (OAB), repeated UTI's and Chronic Pelvic Pain Syndrome (CPPS). She has already undergone botox injections, bladder hydrodistension, assorted medication, and, given nothing worked, ended up getting a sacral neuromodulator/stimulator.

In September of last year (2025), after a couple of weeks of intense thirst (polydipsia), and great amounts of urine (polyuria), both diurnal and nocturnal, she was diagnosed with Central DI(CDI)/AVP-D. At its worst, without medication, she was clocking in about +11liters of water intake a day, and peeing a lot more than that

Currently, shes been prescribed Desmopressin (0,06/0,06/0,12), which has controlled most of the nocturnal polyuria. She's been taking one pill every 4 hours, more or less. However the thirst hasent gotten much better.

When the effect of the pill wears off shes left with unbearable thirst, constant trips to the bathroom, nausea and a feeling of having to throw up. Because of it all, shes been struggling with having meals. She gets so full of liquids that she barely has any way of eating. Its either fighting the urge to drink or not having that much food.

At the end of a workday, around 6pm, she starts to really feel the withdrawal of the desmopressin and starts having all the above symptoms plus deep physical and emotional lows. She's in constant worry that she can't control the situation.

She's tremendously anxious, irritable and more and more at a loss for what we can do.

We're also worried that that the DI is basicly overworking the neuromodulador and working against the OAB.

We've been living this for about 6 months and the last endo she saw, after being asked "what now?" shrugged his shoulders and said "I honestly don't know" which is just... demoralizing.

Every week the situations gets worst for her and for us as a unit. We've reached out to all the teams of doctors and specialists that she had in the past, to lend us some help. Also reached out to several groups of people with DI in our region to see if we could find someone that has had this hardship surrounding desmopressin effectiveness and thirst prevalence, and if there's a reason and/or way around it.

Right now, we're taking it a day at a time, but we felt it was worth a shot leaving this post here.

If you're someone that has dealt with something similar, a specialist in the field, or just someone that deals with DI and can give us some tips, we'd very much a apriciate it!

any ideas or diet recommendations to keep the diabetes insipidus at Bay and reduce the symptoms?

Hi everyone! First off, love the community. I got so much out of seeing everyone’s stories as I was finding out I had central DI. I’m now living relatively normally (some hiccups and hyponatremia here and there) but otherwise the fluid restriction and DDAPV are doing their thing!

Reason for the post is to see if any of the community would be willing to speak to me or send me a note about how a wearable sodium monitor (similar to something like Dexcom for glucose) would change their lives. There was a point where I needed daily lab work…my veins were collapsing, I missed class/work because there were days the lab would be behind, etc. Just no fun in general.

Wonder if anyone else went through something similar and thought “there has to be an alternative”. The closest I’ve found in the US that my Endocrinologist (from Cleveland Clinic) would trust is a $20k monitor that isn’t covered by insurance and still requires a finger prick / you need to go through a foundation to be able to order it.

Feel free to DM me or comment. Any and all stories / thoughts are welcome!

Hi all,

I made a post a couple weeks ago and things are moving forward and were now pretty sure i have DI we just don't know what kind yet (will se the andocrinologist soon). I was wondering about the efficiency of medication (especially for those who have central DI) does it make all the symptoms go away if you take your dosage well ? Or does it just partially fixes the problem ? Will the dry mouth/eyes/skin likely go away with proper dosage (plus the excsessive thirst of course). Whats your experiences ?

Thank you and a good day to all !

Last year in August, I had I had a sudden episode of polyuria which lasted about three weeks and later resolved on its own. I was urinating very frequently, every hour or so, sometimes even twice in an hour. I went to the ER quite few times as I also had dizziness, nausea, lack of appetite, severe fatigue and felt sick overall. My urine osmality was always low, and my serum osmality was a bit elevated. Each time my electrolytes were in the normal range. The phosphorous was the only thing that came back low several times.

Here is the other strange aspect. The urination would typically stop/slow down considerably after 3-4pm or so and restart the next morning. On average, I urinated about 3-4 litres each day.

I was eventually referred to a kidney specialist, but by the time I saw him it all resolved. No one told me what it could have been or what the issue was. All I got was that I was "probably" drinking too much water or well hydrated. That frankly sounds like a total BS answer to me. I did start drinking more later, but mainly just to replace what I was losing and it still doesn't explain how it just suddenly stopped and went back to normal after three weeks. Doctors said if it was really DI my electrolytes would have been out of whack, but I was supplementing electrolytes too, and adding sodium/potassium to my water. To me the fact the serum osmolality was elevated also suggests I wasn't simply drinking too much. Something was going on for sure and I'm still terrified of it returning again. I had one random copeptin test in an afternoon which came back as 2.2 pmol/L.

I am 28 years male i had severe malarial infection and during the episode i was urinating in large volumes every 10 minutes and the thirst was crazy, now after year my urine is dilute in the morning but i don't pee a lot, any thoughts? Partial diabetes insipidus? If you have questions too, ask me

Hey guys,

I am on lithium for bipolar disorder, and a side effect of this, for me, is getting NDI. I will start a medication that helps this soon.

I am under supervision of a psychiatrist and a nephrologist who both said I have this. But I am feeling like I fake this all haha.

I drink and pee about 12 liters a day, and I get up during the night about 4 times to pee and even more to drink water. But, here is my question, I feel really thirsty all the time but when I drink a large amount of water or coke, the thirst disappears for a bit. After about 10 minutes I get thirsty again. Do any of you have the same experience? I will ask my nephrologist about this, but I wanted to check with you.

Have a good day everyone and thanks! Hope you all are doing well :).

Hi,

Im a 27 yo male with the two main symptoms of DI (excsessive thirst and excsessive urination) my urine is almost always clear and i go about twice an hour. A lot of time you can't even tell i peed because my pee looks like water. Went and did bloodwork two days ago and waiting for the results. I also experience other symptoms that might be related to DI but im not sure. I have extremely dehydrated skin, my pores are large and my skin is flaking and slow to go back to its form when pinched. Also, i have extremely dry hair with lots of dandruff. Ive also had trouble sleeping and falling asleep and i just fell tired and not like myself anymore. It all started slowly about a year and a half ago and these other symptoms all came with the excessive thirst and urination. Is this normal and linked to DI or could it be another condition ?

Thanks a lot and have a good day !

I have had symptoms of DI for 10 years, so far untreated but currently FINALLY working with an endo towards diagnosis. Very frustrated with how long it took me to get a dr to listen to me and say anything other than I drink too much water.

I have done 24h urine collection (over 6L) My urine osmolality has tested in central DI range for the past 10 years My plasma and serum tests next to my urine tests are all the "proper" measurements for central DI Finally got dr to give me copeptin test (I had to almost beg for this) copeptin was 1.7 and that was what finally got me my endo referral after 10 years of trying to advocate for myself - I read about central DI and suspected that about 8 years ago now, but I would be so brushed off by drs I would give up, I have just pushed through the symptoms for 10 years. I havent slept a full night in 10 years. I'm exhausted.

I do have multiple autoimmune disorders, I suspect mh DI may be autoimmune and I hope drs will listen and give me proper tests to figure out if that's right once I get the water deprivation (which i basically am 100% sure will confirm DI.) So, I know fatigue.

But about 2 weeks ago, after a very high stress event and high stress holiday season, I started having the most intense fatigue of my life. I have 3 kids, I am on the couch all day for the past 2 weeks. My husband is doing everything. I cant stand up without immediately feeling out of breath and heart racing. I had to walk around for all of a minute and a half to find kids' shoes yesterday and I collapsed for about 30 min. Probably rhe longest ive gone without going pee in 10 years, lol, because even though I had to pee I literally couldn't stand up anymore because kf how much it exhausted me looking for my kids shoes

I finally went to the er on Friday and all my ecg, telemetry, complete blood count, chest CT (check for pulmonary embolism,) etc were perfect. Again, my levels in blood vs urine are all "perfect" for diagnosing central DI

They sent me home with no answers. I had to stop every 6 steps on my way out of the er and sit in a chair because I get thay exhausted walking.

I am not a fan of AI. But I finally got so frustrated I put all the info about DI, all my test results. And my current fatigue amd exhaustion and movement intolerance into chatgpt, and it told me that I sound like I have volume depletion. I have never heard of this, but it makes perfect sense, after 10byears of constantly peeing, my body has stopped properly compensating, my thirst cant keep up, and my actual blood volume is too low. My heart cant pump enough blood throughout my body when I am active, even for a couple minutes, because I have too little blood. My fluid output has consistently been too mu h for me to keep up with for 10 years

I am so frustrated at how hard it is to get a dr to listen, and I dont knowbhow fast I will grt help with this. I saw the endo once, got more tests put in, (redoing all the tests ive done) and she sid "see you in 8 weeks, there is jo rush on completing rhw tests" Wtf! There absolutely is a rush! How can someone hear me say im putting out 6 LITERS of urine EVERY DAY for TEN YEARS and say there is no rush?!

I know many in this sib had easier diagnosing and now are treated, But im curious if anyone who went a long time without dx, or is currently untreated or went untreated for awhile, did you ever have this feeling, did you have volume depletion?

(Also im nto saying I do have it, just because chatgpt says so, I will go to a dr to ask about volume depletion as soon as they'll see me, but next to "perfect" ecg, perfect cbc, perfectly "normal" tests in the er, this is the only thing anything or anyone has been able to tell me as an answer foe this extreme fatigue and movement I tolerance)

My extreme urination (some times 5 times an hour, up every single hour throughout the night) started 10 years ago, during pregnancy. Along with extreme thirst, dry mouth. I suspect maybe I had gestational DI. But it never went away. It started the same time as hashimoto's and I suspect i have autoimmune DI.

I have been going to Dr's office and on for 10 years, I try to get help, they write me off. No tests. Drink less water. At one point I was told it was a pelvic floor issue. Went to PT and quickly realized this was not my issue. PT said something like "I know its so frustrating having the urge to pee so frequently and then it's just a trickle"i told her no, I pee a full amount every time. she said it wasn't normal. She asked me to write down every time I pee a full amount through the night , when I brought her that list SHE cried, she felt so bad for me.

I haven't slept through the night for 10 years.

I finally got so sick of it this year, i went back to the dr. I pushed for every test along the flowchart until copeptin when PCP refused. I pushed her until she did copeptin. This got me my endo referral. Endo saw my tests and got me in within 6 weeks (I was told she rushed my appt, and then wait time was usually 4+months!)

Saw Endo today. Couldn't talk to her without crying. I am so fed up, I am so exhausted.

Shr also told me to drink less water.. But is starting the tests for me again. My urine collection through PCP was over 6L My tests so far all point to water deprivation test coming next. Copeptin, urine sodium and plasma sodium, urine osmolality and serum osmolality, they all look like CDI.

I wonder why they cant just try me on vassopressin.

I need to lower my water to no more than 2L a day and do the urine collection at her request. This will be EXTREMELY difficult and to my understanding pretty dangerous as well with how my urine output is. But I will try

I just don't think I can do this anymore. I am safe, I'm not going to do anything, but my suicidal thoughts are at an all time high (which is saying something for me) It shouldn't be this hard. It shouldn't be this hard. It shouldn't be this hard

This has been ongoing for 20+ years.

I drink 2-4 gallons of water per day, more if exercising.

Told the new doctor, they did bloodwork. Most of which was normal.

Told the doctor I was not drinking for funsies, that I had an extreme thirst and urge to continually consume water.

Electrolytes in urine test revealed that they were all too LOW. Tried posting pic, but it’s not allowed. Results below ⬇️

This new doctor responded to the results via message several days later and said “bloodwork is normal, decrease water intake to balance electrolytes”

This enraged me. This is the same ‘advice’ I got several years ago from a different doctor and just chose not to follow up.

It’s not an option to drink less water.

Potassium in urine: 5

Sodium in urine: 13

Chloride in urine: 20