I Have Diabetes Insipidus

Diabetes Insipidus anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Diabetes Insipidus. You're not alone. 204 People

    Never Ending Need For Water.

    I never heard of it in my life until I got it. I always drank a lot water, diet soda, before but it seemed lately I just couldn't quench my thirst I drank everything in site it was crazy. I thought I was a diabetic and got my sugar tested and that wasn't it. Finally went to...
    Jackk45 Jackk45
    46-50, M
    4 Responses Apr 7, 2013

    Roller Coaster Ride!

    I have recently had a benign brain tumour removed which involved my pituitary . All good now except I have DI and need to take desmopressin spray at night. Took several weeks to be diagnosed despite drinking litres of water and going to the toilet half hourly even when in...
    Heather63 Heather63
    51-55, F
    5 Responses Aug 7, 2013


    My 14 yr old daughter had DI. Her blood sodium levels have been coming back high- 157. The problem is she's not been thirsty and isn't passing urine even when we make her sit and drink water. I've had some people tell me that she needs to break through really good help wash out...
    Jdsalcedo Jdsalcedo
    41-45, F
    Oct 20, 2013

    I have nephrogenic diabetes insipidus.

    I have been taking lithium for 2.5 years and this is a condition from the meds. Lithium is known for making you crazy thirsty. But it started to turn into a need I couldn't control. I would be woken up at night from thirst and I even started sleepwalking to get water. Going...
    Pickles15 Pickles15
    18-21, F
    1 Response May 10, 2015

    The last 7 weeks were terrible.

    Started drinking, drinking, water, cool refreshments, milk, yoghurt, applejuices, as long it is cold and refreshing and that every hour day and night. I handed 9 liter urine collected in 24 hours, to the hospital. They very fast told me to come over to stay in the hospital...
    PetraJ PetraJ
    51-55, F
    1 Response Mar 2, 2014

    I was diagnosed 6 years ago.

    Literally all of the sudden I started needing 4-5 gallons of water daily and was going to the bathroom every 20-30 minutes. Lived like that for 5 months, miserable, never slept. Finally my doc referred me to an endocrinologist for the "off chance" it was something called...
    amandakaye amandakaye
    31-35, F
    2 Responses May 2, 2014

    To cut long story short ten years ago I went to

    a endocrinologist who did some urinalysis and blood tests and said Im'm sure you've not got DI but I can send you for water deprivation test. I went and walked out early as they messed up canula. Basically I get thirsty and seem to urinate too much for amount I drink. For...
    UK2004 UK2004
    31-35, M
    1 Response Jul 11, 2014

    I wonder why I'm steadily gaining weight.

    I was diagnosed with Diabetes Insipidus two years ago and all of these stories on this page are very accurate - the discomfort, getting up every hour of the night to urinate, and the CONSTANT yearning for ice-cold liquid - ANYTHING I could get my hands on. None of my doctors...
    caroline6391 caroline6391
    26-30, F
    2 Responses Jul 31, 2014

    Hi everyone! My name is Allie

    and I have recently been diagnosed with DI (Oct. 5th 2013). My story actually starts 5 years prior though, to May of 2009. The year of 2009 was a VERY tough year for my family and me. In September I lost my grandfather (of whom I was very close to), in December my grandmother...
    elliemay2013 elliemay2013
    22-25, F
    1 Response Nov 8, 2014

    I have had nephrogenic diabetes insipidus

    since birth and was diagnosed around 2 with my younger brother. My uncle on my mothers side had gone undiagnosed and died around 1 year old. I've come to live with it, I'm now 24 and live a pretty normal life, I work full time, live on my own and all. I've been on...
    mcaddicts mcaddicts
    3 Responses Dec 12, 2013

    Living With Diabetes Insipidus

    I was 3 years old when I got Diabetes Insipidus. I was playing with my older brother (12yrs) at the time. We were playing with my toys, when he pushes, trying to be playful, and I fall. I hit my head on one of my toys. When I get back up my lip is gushing with blood. For weeks...
    ponyo95 ponyo95
    1 Response Sep 26, 2012

    Ok so it's prob the same

    as everyone. No sleep, can't do long trips, worry about where the bathroom is, is there water or do I have cash to buy water....sounds like my experience is not too far off from everyone else's I am now on desmopressin the cheap tube up your nose kind but that's the one my ins...
    thirstywill thirstywill
    26-30, M
    3 Responses Jan 23, 2014

    Infant/Toddler With Central DI

    My daughter was diagnosed with CDI at the again of 16 months. When she was 15 months old she suffered from encephalitis caused by the coxsackie virus and in turn this damaged part of her brain. Unfortunately the thought is that she will not recover from this. It has been a long...
    Lbobick Lbobick
    36-40, F
    1 Response Sep 19, 2013

    35 Years With DI

    I have had D.I. since junior high school 45+ years ago, but was first correctly diagnosed at the age of 27. I have a couple of questions. Does anyone else notice that shellfish (particularly shrimp) negate the effects of DDAVP on the body's system. When I eat shrimp, my DDAVP...
    ed75 ed75
    1 Response Jul 29, 2013

    My 3 year old son was diagnose with diabetes

    insipidus. They didn't check blook work, just urine. He does not pee at night he does go to the bathroom frequently but just little drops of Pee. And he drinks normal amounts of liquid. What is your opinion?
    Nancynancymom Nancynancymom
    1 Response Dec 19, 2015

    I have central diabetes insipidus from pharma

    drug-induced brain damage. Docs all said there was nothing wrong with me (I was "misinterpreting" my thirst & shouldn't drink so much) so I had to figure out what blood tests to take & find a doc I didn't know who was willing to take them. The results are dilute urine, high...
    Lisa111164 Lisa111164
    51-55, F
    1 Response Feb 16, 2016

    Diabetes Insipidus/hypothyroid

    I was diagnosed when I was five with DI. When I was 15, I also found out that I had hypothyroidism. My DI is currently under control with the use of DDAVP. I just wondered....Is there anyone out there having problems with being low in vitamins such as calcium, iron, B-12, folic...
    captainmossgirl1156 captainmossgirl1156
    2 Responses May 23, 2012

    About four weeks ago,

    I went to the clinic for thirst. They checked for normal diabetes and it was negative. Just by chance, I asked them to check my ddimer level because I have a history of blood clots. It was scheduled for the following week and I was saving myself a trip. The next day, I found...
    pberg20 pberg20
    46-50, F
    Sep 28, 2014

    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...
    Eugenemarlo Eugenemarlo
    31-35, F
    4 Responses Aug 29, 2014

    I was diagnosed with DI nearly 40 years ago

    and have managed well for most of my life. Recently, i began having pulmonary problems. I am now on oxygen full time. Is any one else having issues as a result of DI
    doespoon doespoon
    41-45, F
    1 Response Jul 21, 2014

    So my story starts almost 2 years ago,

    July 22nd 2013. 4 days before my 22nd birthday. The day that changed me and my lifestyle. I started craving liquids, especially ice cold liquids. You name it, I wanted to skull it! I was now unable to sip on my drinks and began skulling them. I would fill up on liquids...
    amsDI2013 amsDI2013
    26-30, F
    1 Response Jul 12, 2015

    Hi there. I have 15 month old son.

    He was diagnose with NDI since 1 year old. But we think he has that since 6-7 months old. Because he was not gaining any weight at that age. And now he was in medication of amiloride and hydroclorotiazide. Its a raining season here. And i want to ask anyone. Is the weather has...
    fenime fenime
    31-35, M
    1 Response Jan 19, 2015

    Hi. I'm 20 and in college with Nephrogenic

    Diabetes Insipidus. I got diagnosed with it when I was 7 months old, therefore, I've had it all my life. I know no one who has it my age or in my state for that matter! By this time in my life, I'm doing alright with medications, staying cool, and a low-sodium diet. My boyfriend...
    mariahsstar mariahsstar
    22-25, F
    4 Responses Nov 7, 2014

    Living With Diabetes Insipidus

    My first instance of me conciously being aware of my medical condition was when I was six, I was at my friends house while my mom was at work. I would constently ask my friends mom for water, I didn't pay much attention to it, that was until my friends mom told my mom about it...
    Violathegreat777 Violathegreat777
    18-21, M
    2 Responses Jun 22, 2012

    I was officially diagnosed about 3 months ago,

    though increasingly showing symptoms for a year, it happened quickly and when it came to a head, i ended in the hospital for several days. No tumor, and no family history. I seemed to be a medical mystery at the hospital and without the pituitary tumor, they didn't want to...
    mishellj mishellj
    3 Responses Jan 25, 2014

    Newly Diagnosed And Struggling

    I am really interested in hearing if anyone else has been through the same problems as me. I was diagnosed with DI in November 2011 but the doctors are still unsure of what i really do have. I went through all the usual issues of drinking up to 24l per day and getting rid of all...
    jamesfloyd jamesfloyd
    5 Responses May 15, 2012

    Is Diabetes Insipidus Really Supposed To Be This Bad? Am I Doing Something Wrong?

    Hi Everybody! I'll try to keep this as brief as possible, but I apologize in advance if it ends up not being brief at all... I am a 28yo male. Last year I was diagnosed with DI and at that time was exhibiting the normal symptoms: extreme thirst and frequent urination. I had an...
    ser727 ser727
    31-35, M
    8 Responses Jun 1, 2013

    Anyone With Diabetes Insipidus?

    Hi! I was diagnosed with CDI about a year ago. I have never met or spoken to anyone with the same condition, it's hard enough meeting someone who has heard of it before! It can be a lonely condition sometimes. Would love to hear people's experiences of it. There is barely any...
    amyskinner amyskinner
    18-21, F
    10 Responses Sep 29, 2011

    I Have The Dreaded Diabetes Insipidus

    Firstly i am a 47 y/o man. Well about a year ago I had all the thirst and going to the toilet day and night. My doctor did all the tests but nothing to indicate diabetes mellitus. 6 months later I still had all the symptoms but have completely lost my energy. After further tests...
    raffefra raffefra
    51-55, M
    1 Response Aug 16, 2013

    I have had DI for 4 years.

    It took me a long time to stabilize it. I found that when I was first diagnosed and taking the DDAVP in pill form (.1mg twice a day) I was still drinking a lot of water. Not because I needed it but because I formed an emotional attachment to water. So much so that I got low...
    Cook26 Cook26
    26-30, F
    3 Responses Feb 28, 2014

    My Kids Have Diabetes Insipidus

    I have a three year old boy and a 1 year old baby girl. My son was diagnose with this condition since he was about 5 month. when we found out it was hard we cried alot and I felt depressed. but that atitud change thanks God because now with a low sodium diet and diuril we are...
    bermudez5005 bermudez5005
    3 Responses Sep 24, 2012

    Brain Tumor Operation Resulted In Di

    Basically at 16 I had brain tumor operation on pituitary gland, I woke up in the intensive care unit dying of thirst. I so wasn't expecting that! I found a jug of water, proceeded to drink the whole thing, which didn't go down so well let me tell you! At first after the op...
    kerri1986 kerri1986
    26-30, F
    4 Responses Oct 15, 2012

    Just Diagnosed With Diabetes Insipidus Last Weekend....

    Hello... I am here for the sole purpose of learning as much as I possibly can about this as possible. I was just recently diagnosed as you already know, and I must say I am realizing how much this is affecting everything that goes on in my life. As a freshman in high school...
    mattzap mattzap
    4 Responses Jun 5, 2013

    I just turn 19 I have D.

    I. I've been having it for 10 years, I have learn to live with a busy life of appointments, medicine, and small depression. If there's anything I can help out to anyone please don't hesitate to message me.
    rico3268 rico3268
    2 Responses Jan 14, 2014

    My Son Was Born With Nephrogenic DI

    Hi there, After years of hoping for a baby boy; he came along in 2012, we were very excited, great birth, terrible pregnancy! It was apparent when he was born there was something wrong, his breathing, he was molteled - very red (Sun burnt), eyes closed, very puffy. Over the next...
    ourbubble ourbubble
    41-45, F
    1 Response Aug 2, 2013

    I am 40 years old this year

    and it took an entire year of MRI's and Convulsions at age 3 before a smart Doctor discovered I have Diabetes Insipidus (DI) and I have been through many different generations of nose sprays that need to fill a plastic tube to measure 2ml that needs to be refrigerated to the...
    bthomasian bthomasian
    41-45, M
    Mar 2, 2016

    After Months Of Tests I Have Diabetes Insipidus

    Hi everyone As the story title says after months of tests I have been diagnosed with diabetes insipidus. I started to get a real thirst around a year ago, couldn't get enough to drink and constantly had to go to the toilet. I think the doctors thought I had lost the plot when...
    Scotslass1973 Scotslass1973
    3 Responses Sep 29, 2012

    I've been battling with diabetes insipidus a

    little over 18 years. I can remember just before going to school I would guzzle down half a gallon of cold water and throw it back up, clear and cold, before it could touch my stomach. My mom would be so mad at me because she felt I was making myself sick yet she felt sorry for...
    terrilynn4 terrilynn4
    31-35, F
    5 Responses Feb 7, 2014

    Ten Years Ago.

    About ten years ago when I was eight y/o I started getting extremely thirsty and having to use the bathroom every five minutes or so. My mother took me to the doctor to see if there was a reason for my constant thirst. The doctor thought maybe I was getting strep and that was the...
    KKnight5 KKnight5
    22-25, F
    1 Response Oct 28, 2013

    Need Your Advice About DI

    I am a 33 year old man. I've had central DI for probably 10 years, but got diagnosed 2 years ago after doing a water deprivation test. Got diagnosed with CDI. Did a brain MRI, everything was OK. Got tons of blood tests, bottom line is the cause of my DI is unknown. They gave...
    Keystone10 Keystone10
    2 Responses Apr 7, 2013

    Hello to all We are a couple

    who just had its second child. A boy diagnosed the previous week with nephrogenic diabetes insipidus. We are very scared about how his life will be. We wonder if he could live a normal life having to drink water and pee all day and all night all. Could anyone tell us how many...
    Apprentice1 Apprentice1
    36-40, M
    2 Responses Sep 14, 2014

    Ya We Have Di, But We Will Still Live Life

    Hi I'm aj. I say we because my hope is that you all and myself, would not let thing disorder that we have control us keep us living in fear. But that we all would live full blessed lives. 9 months ago I started peeing a lot, both day and night. My head was...
    aj1997 aj1997
    31-35, M
    1 Response Dec 18, 2012

    In 2004 suddenly overnight I started drinking 6

    gallons of water a day and urinating all the time. The only way I was happy was sitting on the toilet drinking ice cold water. After getting the run around from doctors and being diagnosed with "compulsive water drinking" I was finally sent to Mayo clinic in Rochester,MN and the...
    Ndewald Ndewald
    31-35, F
    2 Responses Aug 25, 2014

    Hello, I just got diagnosed with nephrogenic

    diabetes insipidus. I've been having symptoms for about 5 months now but doctor has always told me I'm fine and nothing was wrong so I thought everything was mental until I saw a kidney specialist. She examined my blood and urine and diagnosed me with NDI. I have all tebse...
    kgamalinda kgamalinda
    26-30, F
    2 Responses Oct 11, 2014

    Diabetes Insipidus

    I have had diabetews insipidus my entire life (am now 30!) and was diagnosed at age 2. It was aquired (well so the doctors say!) due to a tumor on the pituitry gland or maybe due to epilepsy (they won't say which).  Has been treated with Minerin...
    sacha79 sacha79
    26-30, F
    5 Responses Jan 15, 2010

    My Story.

    I got DI few years ago. I would like to hear and learn from others who have DI. One day I've read in a newspaper about DI. I stumbled on it at the store near my place. It was about a young boy who is suffering from DI. I've never heard of anything like that before and after...
    diyanne diyanne
    18-21, F
    6 Responses Jul 2, 2012

    I can't begin to explain the panic of waking up

    and reaching out for my water bottle and it not being there (I'm also disappointed when it's not ice cold!) Staying somewhere new and not having easy access to a bathroom... Yikes! These things seem so silly and trying to explain the disease often makes me sound crazy. "No, I...
    JBaileyRN JBaileyRN
    31-35, F
    5 Responses Jan 29, 2014

    I have just been diagnosed with DI.

    It all started 5 months ago when I noticed my thirst increased to monumental levels, was drinking up to 7 litres if water a day, had to be ice cold, and peering every 45 mins or so. Also felt really really ill the only way I can describe it is I felt like my body was being...
    debbiemet debbiemet
    51-55, F
    2 Responses Jul 12, 2014


    Does anyone have DI as a result of pit surgery and subsequently experienced a diminished sense of taste? Thanks,
    Dempals2 Dempals2
    66-70, F
    3 Responses Aug 5, 2013

    Has anyone with DI had any type of bariatric

    (weight loss) surgery? I am in the early stages of research and considering it. I would like to know which is best with having DI and how you made your choice of procedure. Thanks, Scott
    scottwalker123080 scottwalker123080
    36-40, M
    4 Responses Apr 26, 2014
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