Diabetes Insipidus

By gdfranklin53 Latest Reply 2018-07-28 11:58:11 -0500
Started 2011-04-15 15:05:21 -0500

Does anyone else have Diabetes Insipidus? I've only met one youngster in my life with this disease. I was diagonosed in the late 80's. Doctors telll me how rare it is. This disease effects every aspect of my life, even with medication. I still maintain a good life but at times, it is unbearable. I would like to be here for anyone else who would like to discuss it, the problems, and the way I keep going. I would like to meet others with this condition as well as Diabetes Mellitis. I have nearly died from severe dehydration with this and know how serious it can be. If you have it or would just like questions answered best I can, just let me know.

33 replies

munnra 2018-07-28 11:58:11 -0500 Report

4 members of my family had/have Diabetes Insipidus. My mother-in-law, husband, son and grandson. We're not sure is my mother-in-law had anyone else before her with DI.

Lellen 2017-04-20 19:40:56 -0500 Report

I've had DI since I was 11, I'm now 65. My parents were exhaustive in their search for what was the matter. I was lucky to live in Syracuse, NY where Dr.s Miller and Moses were doing research. I started out having to take daily intra muscular injections which was in peanut oil. Very inconvient and painful, I still
have scar tissue. A nasal spray was then invented but if you had a cold, forget it! In the '70s another nasal form was invented. We called it "a buck snort" because you filled a tube w/ddavp and had to blow it up your nose, we calculated that is was dollar a snort! Finally in the late '70's early '80's a pill was invented! Hallelujah!!! Made life easier. None of these medications were easy to get at first. Now the cost of the pills is reasonable. I found the hardest thing about DI is that most doctors and nurses have never heard of it! That makes for all kinds of fun if you are sick or need surgery or heaven forbid get pregnant! I'm happy to say I've lived through it all, educated a few people along the way and realized I could have a disease far worse. I'm just wondering now as I age if other symptoms or side effects will pop up. Anyone out there that has had DI for as long as I have.

Hayesville 2016-10-30 22:27:58 -0500 Report

I've had DI since the mid-90"s due to a medication I'd taken for years that unfortunately damaged my kidneys and shot my creatinine levels up. This was thankfully caught thru a routine blood test and subsequent pee tests. It's stayed pretty stable except has gotten a bit worse the last few years. I also have the beginnings of type 2 DM, but can't take any meds for it I'm told because of my kidney disease. So far that's under control with diet and exercise. The most frustrating thing to me is that horrible cotton mouth that almost gags me after talking to someone for a while. Also the real stress my body feels if I do not have access to fluids for more than an hour for some reason. Anyone out there approaching dialysis? I am in stage 4 kidney disease…stage 5 starts dialysis I'm told.

SABennie 2015-07-24 12:42:27 -0500 Report

Hi everyone, Due to craniopharyngioma and removal of my pituitary gland, I was diagnosed with a rare disease called diabetes Insipidus in 1989. Been living with this for over 30 years but seems to be kicking my butt lately. My medication DDAVP (Desmopressin) seems to suddenly cause low sodium levels in my body which in return causes hyponatremia (sodium induced seizures). Miserable, been in hospital 4 times for this in past six weeks. Anyone else have this issue?

Melcausey 2015-07-05 15:25:02 -0500 Report

I was diagnosed with diabetes insipidus in January 2006. It was missed by my pcp and the pediatrician I worked for at the time got me in with an endocrinologist who did a blood test to check my ADH which was virtually 0. I have been taking the DDAVP nasal spray for 9 years now. The worst part of it is sometimes you never know when the medicine will wear off and you will need to be close to a bathroom and a gallon of water.

r@kiki 2011-06-06 19:55:11 -0500 Report

Good morning im 35 yrs old and my son who is now 7 yrs old is diagnosed with diabetes insipidus so i really want to know more about it. he is always drinking and also taking 2 lots of medication but i still find that it really does help..i would really love to hear more about it and what to expect.thanks you

eristar 2011-04-19 06:49:13 -0500 Report

Good morning, and I'm so glad you found us! I am 60, and was just diagnosed with T2 last summer, before a scheduled surgery, which had to be postponed until my suger was brought under control. I thought that was hard, until I read your story. Please keep us updated - I'm sure we all want to offer support and to know how you are doing!

gdfranklin53 2011-04-19 09:08:11 -0500 Report

eristar…T2 is hard!!! And I'm so sorry you have the diagnosis. I will keep you updated. I thank you for your offer of support. I have posted more this morning. God bless you. Share a little about yourself here. The support here is already outstanding!!!!!

gdfranklin53 2011-04-19 08:37:09 -0500 Report

Good morning, and thank you eristar. I too, am thankful to have found everyone here. I have wanted to share for so long and search for someone else with DI.

dietcherry 2011-04-17 23:37:50 -0500 Report

Hello gd and welcome to DC! Ive heard of it but dont know what it is. I would like to know more, too, please.

gdfranklin53 2011-04-18 18:37:20 -0500 Report

Hi DC , thank you for the welcome! I have looked a long time for a forum to talk with others. I am yet to find another person with Diabetes Insipidus! I have DI and DM.
I was diagnosed with DI in the early 80's. I knew for years there was a problem, but did not know what it was. My family didn't know and at an early age I was forced to leave home twice by my mother to get away from the problem. She and many others thought it was all in my head and I was doing things for attention. With DI…at an early age even, I could not walk 100 feet without having to drink something…water, hot, cold…did not matter I just was dying of constant thirst. My parents would shop and bring home a case of sodas and I would drink the entire case within 2 hours! Then I would chug all the water I could find! DC…it got so bad that I would feel like sneaking and drinking out the back of the toilet to get a drink. My parents did not understand and forbid me to get into anything to drink. I never did drink from the back of the toilet, but would sneak any kind of drink possible. This caused problems of course in my life as a young man, who was dating, and couldn't function without a drink in my hand and not just a drink…a HUGE drink. My girlfriend and I at the time would go out to eat and I'd order a pitcher of soda, just for me! She begged me to go to the doctor. I never did. I actually started believing my parents and friends (whom I have lost over this disease) that it was in my head. I could at that time, drink a gallon of water without taking a breath. I would become very sick and water intoxicated and pass out, almost drowning in the fluids! I worked steady right on. In my music profession and all. The groups I sang with were the Only ones who understood there was a problem.
Finally, I decided it was time for help! I passed out from drinking 2 gallons of cold water and wound up in the hospital. NO ONE had a clue what was wrong. I spent 30 days in the hospital, talking with therapists, psychologists, psychiatrist's and they all concluded there was nothing wrong mentally but physical. This did not sit well with my mother and once again I was forced to leave home. I moved out on my own anyway and continued to suffer.
After so many trips to the ER, they noticed my weight gain was growing rapidly and my heart was in trouble with the fluids around it. They immediately put me on liquid depravation to help get it off and filled me full of diuretics! DISASTER! I got so sick and severly dehydrated and nearly died. They gave me fluids, a little at a time, but I would sneak in the bathroom and make a bowl with my hands and drink until I passed out on the floor. Another 30 day stay! Finally I begged them to get someone to help me before I drank myself to death! Finally a nurse named Pat, I have never forgotten, came in and said she heard of a Japanese doctor who lives in the states now, in Florida that may help me. I jumped at it!
I was so miserable and so sick and drowning when I laid down. And not to be crude, but when they put you in for this kind of thing and bed rest, you have to use a urinal at your bedside. I begged the nurses to bring me 6 of them. They told me not to be a smart mouth! I told them I was serious! They laughed and left the room. I had to sneak to the bathroom to urinate! Then I would go so much I had no strength to walk back to the bed. I had to call for help. When my doctor came in the next day, I heard him yelling at the nurses and the head nurse! Told them he better never hear them doubt me again or refuse to get what I ask for! Alll the tests were in and showed signs of DI. They all apologized and got me the six urinals, which I filled in shifts, use 6, dump them, use 2 more!

DC I will have to continue this tomorrow. I must get to rehearsal for our new recording project. If you have questions just ask, I will answer best I can from my experiences. Please understand with my giving details, I am in no way trying to be crude or gross. I will telll you all I know from my story and experience. I am yet to meet another person with DI, let alone DI and Dm together. Have a great night DC. God bless you and thank you so very much for listening. This disease has outcast me since a young age with no one understanding. Now at my age, I am living life and going on! I will post more tomorrow or answer your questions you may have. It feels so good to discuss this with someone other than my doctors! Thank you again so much for listening.

jennifer castro
jennifer castro 2018-06-20 19:51:21 -0500 Report

My daughter is 14 years old and I am positive she has diabetes insipidus She has been dealing with issues like excessive thirstiness, frequent urination bad wedding, dehydration, dizziness when she doesn’t drink enough water. I feel like the list goes on and on. The main concern was the excessive drinking. She drinks more than 2 gallons of water a day and that’s not counting other fluids like juice or whatever else. She has had so many blood tests, mri, ultrasounds, etc. Her blood work usually comes out normal. This last time she was referred to the kidney doctor and the doctor ordered different blood test to check for diabetes insipidus. Her 80 her bloodwork usually comes out normal. This last time she was referred to the kidney doctor and the doctor ordered different blood test to check for diabetes insipidus. Her adh levels was low and They sent her to see an Endo chronologist. I felt like this is the appointment that was going to diagnose her. At the appointment the doctor said her levels were low but that was a normal response because she drink so much water. I was born they sent her to see an Endo chronologist. I felt like this was the appointment that was going to diagnose her. At the appointment the doctor said her levels were low but that was a normal response because she drink so much water. I was floored! As far as I know this is a clear indicator of diabetes insipidus along with all of her other symptoms. I feel like they blew me off and even suggested sometimes psychologically she is craving the water so that’s why she might be drinking. That’s the just shal as far as I know this is a clear indicator of diabetes insipidus along with all of her other symptoms. I feel like they blew me off and even suggested sometimes psychologically she is craving the water so that’s why she might be drinking. That To me was totally insane. My daughter does not want to drink this much water and Pee all the time and miss out on staying the night at peoples houses because she wets the bed. She will not drink as much water in school because she is embarrassed because she has to use the bathroom all the time. She plays soccer and softball and the coaches have had to talk to me multiple times because she almost passes out. I know that it is because she isn’t drinking tons of water like she normally does it home. I am thinking I need to get a second opinion Because I feel like this endocrinologist totally blew me off. I also suggested they do the water deprivation test and she didn’t think that was necessary. Any suggestions on what to do next.

PaulKevin 2012-04-21 17:20:30 -0500 Report

I just spent yesterday in the E.R. I have every symptom of D.I., but was totally dismissed in the E.R. Funny, I was advised by all my doctors to go to the E.R., but when I got there, I was treated like I was wasting their time. I asked them to test me for D.I., but they didn't. All they did was barely adequate blood work, a CT scan (to see if I have a brain tumor because of the dizziness), and check my electrolyte balance. My symptoms are practically identical to yours. I don't have D1 or D2, but my husband has D2, so I am more informed than many people about this. I was wondering: has your D.I. affected your vision? My vision has become so blurry, that I can barely see, and I am having to pee 40 times a day - and have extreme thirst. What are the tests they do for this? And does it involved 24-48 hours of torture, not being allowed to drink? (that in itself amazes me ..) Thanks

dietcherry 2011-04-18 22:23:26 -0500 Report

Your early story is so sad gd; but I hope with a happy ending. Are you thriving now or do you still have these same symptoms? What test did they give you to determine it was DI? Im trying to draw a parallel between what I understand T1 and T2 to be and this-why is is called diabetes? Is it the excessive thirst or does the pancreas and insulin play a part? Are you T1 or T2 and how does it affect the DI and visa versa?
Youre among friends here and I dont think anyone will be offended by your details. I'll be looking forward to reading more of your story! :)

gdfranklin53 2011-04-18 18:37:56 -0500 Report

I will explain also, the cause of my DI.

gdfranklin53 2011-04-19 09:09:55 -0500 Report

I truly believe friends are here!! Thank you so much. I have gotten no clear answer to why they call it Diabetes Insipidus, but it does affect your sugar too. It is a constant fight with both. I'll explain more.

kdroberts 2011-04-19 09:23:07 -0500 Report

There is a reason, it's actually pretty simple.

Diabetes Mellitus is a mixture of Greek and Latin and literally means "Honey Siphon." It got named that because of the frequent urination and sweet tasting urine. It's where the terms "sugar diabetes, a touch of sugar or just sugar" come from when people refer to "common" diabetes.

Diabetes Insipidus is also a Greek/Latin combo and translates as "Tasteless Siphon." That's based on the fact that it shares the frequent urination symptom but on it's own doesn't lead to high blood sugars and sweet tasting urine. That's why a common name for DI is water diabetes.

John Crowley
John Crowley 2011-04-19 13:39:02 -0500 Report

I have no doubt your explanation is spot on. But can we please call it "sweet smelling urine." :-)

Sweet tasting urine … I just can handle that. Haha.

gdfranklin53 2011-04-19 09:06:04 -0500 Report

DC…I've never been told the pancreas plays any part in DI. My pancreas does not function. I make NO insulin at all.

gdfranklin53 2011-04-19 09:03:43 -0500 Report

Good morning DC, In answer to your question above…I am T2. It is the drastic excessive thirst. And with both DI and T2…it is miserable many times even today with wonderful meds.

After the normal testing, I'm sure you know what they are for T2…the again put me on water deprevation for 48 hours! OMG…it was horrible. I begged for drinks. I was watched so I could not sneak to the bathroom and get drinks from the sink or worse. My body began to hurt so bad and just kept getting sicker and sicker and dryer and dryer. I would cry and fight to get a drink to no avail. This was horrible torture. I did manage to go the 48 hours and they finally gave me their final answer of total Diabetes Insipidus and explanation of what I could face. I told them I already know what I'm facing, for, I have dealt with it forever not knowing what it was. I told them everything, all the psychiatrist, and specialist visits and hospital stays. They were not at all shocked because DI is so rare. Now began all the questions of how I got Di. They asked me when I had injured my head! I was in shock…I asked what in the world does this have to do with DI? They insisted I remember back to when I hit my head. They told me that my Pituitary gland was dead and destroyed! So we began thinking back and we did remember that while I was playing softball when I was young that while chasing a foul ball I ran head first into the concrete field light pole and was injured. They determined that was the cause of the problem. I couldn't believe it. And after thinking back hard enough that is when the thirst, cramps, and everything else began. It affected everything, my life, my relationships, my sex life, even that was impossible without having to stop for a drink. I couldn't travel without cases of soda always in the car and gallons of water. They basically told me that I had to just suffer for there was no cure and at that time…no treatment. I literally just about drank myself to death with any kind of drink (except alcohol). Hot or cold did not matter.
After a few years my doctor came and told me that there was a drug that just hit the states that he wanted to try. It was called DDAVP (Desmopressin Acetate). It was administered by a short tube you stuck on the end of the bottle (1'2 tsp. for $150) then put the tube way up inside your nose and the other end in your mouth and blow the med into your nasal cavity. Within hours of the first dose I felt brand new!!! It did not last because if you had a cold, sinus infection or anything the med would not make it in far enough so you just suffered. It got expensive not working but I kept trying it. Before I knew it was worse than before, the thirst and constant urination would not let me venture outside. I had to quit traveling and singing for a few years. This about killed me. This continued til I was diagnosed with T2. Things got drastically worse for me. The thirst of high sugar and DI was enough to where I began to beg to die!!! I had two options at this time…1..drink til I pass out and possibly drown, 2…don't drink and die of dehydration. I fought both options and it was a rollercoaster. At this time with NO family support at all that still carries on today, I have no relationship with my mother, brother, sister and very little with my father. I still am blamed for all the cost as a young man they had with my illness and deep down they hold the feeling I was just mental with all this. But, Oh well…my life went on.
My love life was almost nill due to this mess. I grew so lonely and unhappy. Yet, I did not have it in me to just give up! I quit begging to die and begged for answers. And having NO ONE with DI to talk to was horrible. Of course your doctors can talk to you about it but it is not the same as having someone with DI to understand the emotional and suffering side and maybe work together with someone to understand…just simply understand!! To this day I haven't met anyone else since the child I heard about but it was a child!!!!
By now by all the stress, sickness and emotional drain my sugar readings were in the 400 - 500 range daily!!! This of course, made it even worse! I wanted to drink from a mud puddle one time but refused. Thank God! But I was getting so desperate!

Ok DC…I must go now for awhile. I hate to just drop it but I must go. I will be back later when I can. If you have any further questions, just aske and I'll answer the best I can. I pray you have a great day. I'm so thankful to have you to listen. Until later…GD

dietcherry 2011-04-19 16:34:36 -0500 Report

Ive never heard of a drug being self-administered that way-fascinating! I understand the relentless thirst and the desperation for liquid. I was T1 for almost a year before diagnosis. I hated to go to school because the teachers' wouldnt let me leave class to visit the water fountain-or the bathroom!
So if youre no longer on that medicine, surely something better took its place?

gdfranklin53 2011-04-19 17:58:36 -0500 Report

Yes DC…that was a horrible way to use that med, especially when it's success rate was nill almost. Yes…thank God…7 years ago my Endocronolgist told me about a study showing that there were now pills of DDAVP. I've been on that ever since. It's been increased every few years. I'm currently on it three times a day. TALK ABOUT A LIFE SAVER!!!! It works wonders. But, when summer hits it does not keep up always with the heat thirst and the sugar. But I am so thankful for it. It has given me back the music profession I so missed and the travel of it and the ability to sing for 2 hours at a time without a sip of anything except to keep my throat moist because I sing high tenor. I have my love and sex life back. I have a life outdoors again (with caution of course) I do just about anything!!!!!!! I do not have my family back but I am living my dream of traveling and performing, painting murals, writing songs, watching baseball games in person!! Going to Disney World and such. My Endo still has trouble keeping me regulated with DI and T2 but she has worked wonders.
10 years ago I suffered 3 heart attacks and was put on a transplant list but was taken off within a year. They would not give me a donor heart with DDAVP in me and not ever coming off of it. The new heart would absorb it and cause problems. So…alot of praying and God has healed me from the brink of death. I do have 10 cardiac stents but doing great now. My kidneys are back to normal, my CHF is nill anymore. So I am very careful with DDAVP, Sugar levels and drinking so much. I am a lucky man. Yes…there are still bad days with DI and T2 fighting me so much together. The thirst does get bad in summer but I've not turned back or away from my current treatment regimen. I never will. I hope I've answered some of your questions DC.
I'm sure you understand the thirst part and the T2. I had to quit college because of DI for the same reasons. They refused to let me have a drink with me in class or excuse me … even with a 4.1 grade average!!!! I was blown away!!!! But I'm thankful to have my music profession to lean on. It is and has been very good to me.

gdfranklin53 2011-04-19 19:26:45 -0500 Report

Thank you DC. My quartet and many of my fans call me the "Bounce Back Kid" or "BBK". My fans have been very supportive and many know my testimony and story! Now I have you and everyone here to share with and be of any help I can be. Thanks again. God bless you as much as HE has and continues to bless me!!!!!!!!!

jayabee52 2011-04-15 16:12:19 -0500 Report

Howdy GD
I remember seeing a Dx of DI on one of my first Dr's Dx of me. Then my Dx was of DM, so I thought maybe first Dr made a mistake. DI has never come up again in my life, so I really don't know.

I did have a kidney infection which shut down and put me in a semi-comatose state for 5 days, and I had to be on dialysis for 10 mos when I was told my kidneys wre working well enough I could DC it.

I have "been through the mill" too, but I'm not in competition for who has it the worst.

My bride of 2.5 yrs was also through the mill. Totally blind @ 14 due to retinitis pigmentosa, uterine fibroids & adhesions, had CHF, COPD, GERD, RA, Lupis(SLE), Fibro, and other "Medical challenges" (as she laughingly called them). She also had both kinds of dialysis peri, & hemo. She needed heart, lung, kidney transplants but couldn't have them due to her SLE. She was a mess. But she was a lovable mess! She went to be with Jesus on july 23 2010 and I really miss her right now. I know that I will join her when my time comes.

Blessings to you and yours in Jesus!

James Baker

gdfranklin53 2011-04-15 15:25:22 -0500 Report

Yes, I have both. It is EXTREMELY rare! My doctors told me I may never meet anyone with it. I thought I truly suffered alone. Having both has been horrible for years. I used to beg to die, but am thankful HE didn't listen to me! Nothing but complications and sicness for years! I have suffered with Diabetes Insipidus since around 1984 and Diabetes (Insulin Dependant) since January of 1996. It has been very hard for me in life, family, activities and my music profession. I have survived thanks to God and wonderful doctors who never gave up diagnosing or will never give up now. You are the first adult in my life I've heard with it!!! It is nice, if you can say that, to know I am not alone in this! It has almost taken my life several times with it and the sugar! Had kidney failure in May of 2009, that was related, but only had two dialysis treatments and God healed me!! Haven't needed anymore treatments and doctors say, there is now NO sign it ever about killed me. Diabetes Insipidus is managable nowadays moreso than years ago. Years ago, it was just pure suffering. Still have flareups but nothing like before. Used to, I could drink a gallon of water without taking a breath and then pass out from water intoxication and nearly drowning. Now…it is nothing like that until through the summer. Can't do heat very much.

I am 54 years old. Sing professionally in Nashville Recorded Southern Gospel Quartet based in Okeechobee, FL. Have sang since I was five, professioanlly most of my life. I am an artist, songwriter also. I love my 4 grandkids. I live alone nowadays because of divorce. But am loving it right now with my travels and profession. I have 10 cardiac stents. Was put on heart transplant list for awhile but was taken off because of my medication, DDAVP (desmopressin acetate) for Diabetes Insipidus. By the grace of God I have survived and don't need a transplant. I've had 5 heart attacks, 2 strokes, kidney failure, Diabetes, Diabetes Insipudus, severe bleeding problems after surgeries. Clotting. I've been through the mill. I spent 14 years on my back in a recliner, since I could not lay flat to sleep. Thank God I'm out of it now for 3 and a half years!!!! I sleep about 4 hours a week but keep going.

Please tell me about yourself and your experiences.

gdfranklin53 2011-04-15 15:28:39 -0500 Report

I must go for rehearsal now. But I WILL be back when I can to hear more from you and discuss it if you want. I'm so glad and thankful you replied. I've had no one but doctors and some family to talk with about it forever! And without it, they truly don't get it. It's caused many problems! Have a great evening. God bless you. I will be back soon!!!!

kdroberts 2011-04-15 15:11:51 -0500 Report

It's very rare. I've never met anyone who has it, I was actually wondering if I ever would! Are you saying you have insipidus and mellitis? If so, I would imagine that's incredibly rare!