Diabetes Insipidus...or is it? A possible cure?

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I am creating this thread in the hope it can be a place of hope and support for those with diabetes insipidus (or health issues that mimick this condition) and also possibly provide information to help some people resolve their symptoms, or dare I say it, find a cure.

First, please let me state I am not a medical professional so please do your own research, I'm am just sharing my thoughts and ideas.

From my research over the past 2 years I have reached the conclusion that many people diagnosed with cranial diabetes insipidus, particularly idiopathic cranial diabetes insipidus may have a different underlying condition that may be causing their symptoms and may actually be able to resolve these issues and possibly cure the disease.

I find new cases whenever I look, of diabetes insipidus that has gone into remission or gone away after a patient has taken certain medications for conditions not thought to be related to diabetes insipidus.

There seems to be a link between immunosuppressent drugs given to patients that has often resulted in the symptoms of diabetes insipidus disappearing. Could diabetes insipidus for some people actually be caused by an autoimmine condition? And some medications taken for autoimmine issues can possibly resolve diabetes insipidus?

I'm my opinion there are those with diabetes insipidus due to genuine pituitary / hypothalamus issues be it from a tumor, inflammation, head trauma etc but there are also those who have an autoimmine condition which somehow suppress vasopressin. I also believe there are those that do not have anything organically wrong with their production of vasopressin but for some reason the body has become confused and has become hypersensitive to fluid intake and believes the body needs far less fluid then is actually adequate. As if the water level for the body has been lowered dramatically and whenever you try and hydrate the body instantly wants to dump the fluids out but at the same time people with this issue can still produce vasopressin and their condition often fluctuates.

I have probably said enough for now but I will share some studies and stories of diabetes insipidus in my next posts.

Please feel free to get involved and share your experiences and ideas on this subject and if you kmow of any stories of improvement/cure of diabetes insipidus please post them here.

I will find a way. Thank you.

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  • Posted


    Curious to know if anyone on this discussion

    has any other auto- immune issues. In my case I never have so far . 73 now. Ive been

    pretty fortunate health wise. Other than DI only mild hypertension and some pretty minor prostate issues

    TOM C

  • Posted


    I am so glad to have found your post. I couldn't have described what is happening with me for 10 years more accurately than you.

    I have random bouts of frequent urination with clear in color. There are days when i go about only 6 times in a day and urine looks concentrated and yellow. The other days it is at it's worst - I can go about 20 times a day and each time I pass clear urine and lots of volume. My blood tests have been normal for all kidney test, diabates other etc. My urine osmolality ranges between 200 - 700 ( 700 being best days.

    Interesting thing is the first urine after waking up is yellow and i get urge to go in another 1 hour and second time it is clear like water and lots of volume again. This sets the day as I keep going once after waking up. The more water i drnk, more i have to urinate.

    I had a water deprivation test where doctor mentioned urine is concentrating slowly. Blood sodium has been normal.

    Another interesting points is that my wife who was pretty normal, picked this symptom as well and she struggled as well. But all tests related to urine routine and culture were normal.

    The only blood test which has been out of range is IgE - 1100 . I seem to have idiopathic condiition of diabetes insipidus . I have been on spray DDVAP , which works sometimes and doesn't work other times.

    The ariticle about mast cell disorder has interested me as it seems to be related to IGe. I used to struggle with asthma during child hood. If you have any more information, please post as I've come to stage where i'm not able to bear anym ore of this

    • Posted

      Another interesting aspoect i s that i'm never thirsty. I just drink since i lose water in loads.

    • Posted

      I can only comment based on my own experiences. I find it a little strange that the DDVAP spray only works sometimes? I find this to have an immediate affect on the drinking/urination cycle. The other comment I would make relates to your 'never thirsty' comment. Without the spray, I experience thirst like you could never imagine if you have not experienced it. Before being diagnosed with DI, I once drank about 5 litres of diluted cordial in less than an hour and was still thirsty!

  • Posted

    i have been on DDAVP generic for about 3 months.

    Oral tablets. 3 times a day .1 mg. Was on chlorpropamide for 40 years or so and that worked really really well. But Mylan stopped production of it. The ddavp does work but the effects are relatively short lived. About 6-8 hours.

    I did use a spray 40 or more years ago. It was called Diapid (arginine vasopressin) and not available in US now. Similar to ddavp spray but not

    exactly the same. I remember it working sporadically. It was not consistently effective. It could have been related to inconsistent delivery amounts from the spray bottle. Delivery system was pretty basic. I'm not sure how sophisticated the ddavp spay bottle is now because I haven't tried it .

    When i was much younger the only thing available

    was vasopressin in oil that was an im injection. That also was somewhat inconsistent. It always worked but the duration could vary from one to as much as 3 days.

    So in summary my experience has been that there is variability in how effective these meds are on a day to day basis. Even when I was on chlorpropamide I would experience an occasional day when the medication was not just totally effective. Often wondered if it was related to any special foods. Crazy but I always suspected pork

    products but couuld never really prove this.

    Hope this provides some useful insight from a long time diabetes insipidus(cranial) patient

    TOM C

    • Posted

      Very interested to hear your experiences with various medications. Sadly your comment about inconsistent and poor spray delivery resonates with me as I have always commented on the poor quality of the spray delivery system. I often have to waste two or three sprays to 'prime' it before every use. I have had my DI for 20 years now and am finding that the spray does not last the full 12 hours (as it used to). I have also experienced odd days when it did not seem to do the job (usually put that down to a low dose from the spray), but am interested in your 'food' theory.

    • Posted

      Hi to All. I was the one that asked yesterday if anything new was known. Then saw many of your frustrations which are all to true. From teaching our Doctors, to Medication variations and problems with the DDAVP pumps. They used to work well but they must’ve change suppliers and their junk now. And also Novo-Desmopressin 0.2mg pills not working. I drink from 18 to 26 li. in 24 hrs. With out medication.

      I’ve shared some of this before but seeing some of the comments I think it my be worth sharing some again. Ive had DI for 51 years and and im 62 now. Got it from falling backward at school and hitting my head on a cement step.

      I started with an intermuscular shot for the first 9 years in the behind,then started with the nasal spray what a blessing.Worked well other than some side effects such as a very sore abdomen which took many many years to figure out on my own.Cant wear a seat belt without a clip holding it from pulling tight.Or any tight clothing including underwear.

      But what i want to share mostly is that when The pills came out I tried them but they would only partly kick in for about four hours. talking to my pharmacist he said there was a melt that goes under your tongue but they weren’t covered by our insurance and very expensive. I had tried the regular pills enough to know that there wasnt much of a taste so tried dissolving them under my tongue. But I have to do it lay down at night when I go to bed and not saying a word to my wife or it doesn’t work nearly as well. It takes up to an hr to dissolve. And it will last from 12-30 hrs. When i try during the day upright they dont work.And if it wears off before i go to bed i use a shot of nasal spray. Depending how long till bed I will vary the amount. And if im at home and it wares off a couple hrs. before bed I often just pee and drink. I have to be careful if its not wearing off by bed time not to continue taking the pill because if the meds start stacking I will get a Very Very sore abdomen. So if anybody else has this abdomen problem please let me know. So try this with the pills I found it was a real blessing. And again had to figure this all out on my own. Finally years later the nasal spray lists a side effect of sore abdomen. I chased doctors for 10 years or more with this Very Very sore abdomen only to find out it was a side effect.

      So Im not a Doctor but hopefully somebody can benefit from this. 51 years of experience and still learning. Check with your Doc.I know we’re all different and everybody reacts differently, so give it a try theres nothing to lose and a lot to gain. I live in Alberta Canada.

      So look forward to some feed back. God Bless Rod

  • Posted

    my urine osmolality results vary from 150 to 650. with or without desmopressin. i feel i dont have primary insipids, but something is suppresing the hormone.

  • Posted


    Your post has been so valuable to me… Thank you! I will try and be brief with my condition. I simply woke up one morning with an incredible thirst and needing to urinate about every 20 minutes due to consuming so much liquid. I was having to drink about 25 litres of ice-cold water a day. I didn’t sleep for more than half an hour at a time due to waking up thirsty and needing a wee. I went to the doctors twice, the second time in tears and they told me I was addicted to water and try not to drink so much!! I ended up seeing a private specialist and they sent me straight away for a water deprivation test which confirmed DI. They gave me desmopressin and I went for MRI which also confirmed DI.

    At first the Desmopressin was a miracle and worked wonders, for about 6 months I had no issues at all although other than I had no thirst at all which was annoying but that was the only issue. Then I got hyponatremia twice in two months, one of the times resulted in a 5-night stay in hospital. Since then (about 2 months ago now) I have felt generally unwell with good and bad days.

    Two days ago I woke up and realised I had only been up once in the night for a wee (normally it would be a few times). Then I realised I also didn’t need to go for a wee which was also very strange as it would normally be the first thing I would do when I woke up. I decided not to take my morning tablets and wait for the DI to kick in as I needed to limit the number of tablets I was taking to control my sodium deficiency. Nothing happened, I appeared to be normal and I couldn’t quite believe it. That was two days ago, and my DI seems to of disappeared as quickly as it came.

    I have sent my specialist an email asking what I should do now, but she has not replied. Do you think I should check for other illness or just be happy its gone and get on with my life?

    Thank you so much for sharing 😊

    • Posted

      Hi Louisaede, you might look into balancing your electrolites and minerals. Also, adrenal exhaustion can mess up potassium, leading to water imbalances, hypothyroidism and other issues.

      I've been through the wringer looking after my mother while in hospital and nursing homes. My experience has been that when they treat based on bloodwork rather than clinical exam, things get messed up fast. The more they do, the worse it gets and the blood based treatment protocols seem extremely flawed, causing tons of other problems, medicating my mother within an inch of her life.

      I'm responding to the overall theme of your question, which is that you are really feeling like you're not getting lasting results. If it were me, I'd try a good quality vitamin and mineral supplement, consult a practitioner of TCM, and try a more holistic approach that included dietary and other changes.

      If you're determined to work within your existing medical system, you could try shopping around for a good endocrinologist, as the endocrine system often needs treatment as a whole.

  • Posted


    I recently diagnosed with DI

    since 2 years I was suffering from severe allergic food reactions

    and this Dec I diagnosed with DI

    I got DI after 2 days of allergic reaction

    don't know what happen next

    this is something new in DI

  • Edited

    one of the patient from jammu successfully cured it with the help of doctor

    so yes, underlying cause's treatment can cure this disease but sadly not all doctors are interested in cure... they just give them hormonal treatment...

    for cure, history, lifestyle, and immune system plays an important role

    • Posted

      yes i have same issue and im looking into a condition called mast cell disorder. interestingly my wofe also devwloped samw condition as me.,

  • Posted

    Thank you for creating this thread! I was diagnosed with DI about 18 months ago and have had a rocky road since then. I was on tablets to begin with, which lowered my sodium and made me feel rubbish - I ended up in hospital two or three times. Over time my body built up a tolerance to them and they started to work better without causing sodium issues. However, I was still not able to do 2 things that I love without having a horrible dehydrated sleep that night - 1. rigorous exercise (I am a heavy sweater) and 2. having some alcoholic drinks. It seemed that most of the joy had been taken out of my life - the dehydrated sleeps are not really sleep at all - you wake up feeling absolutely dreadful, your body tingling and aching, light-headed and exhausted beyond belief. It actually feels like you have not slept at all. It take me anywhere from 2-5 days to fully get over one of those. 2 months ago i switched to the nasal spray which i found to be far more effective. However, i share the same frustrations as everyone else with the spray not working properly every time, making it very difficult to know if you've had enough (or too much). For the last 2 months, I felt great like I was finally back to normal. I can exercise and sweat and I can enjoy a few alcoholic drinks so long as I drink plenty of water and electrolytes as I go. A few nights ago however i had a few glasses of red wine (my favourite drink, but also the one that i find dehydrates me the most!), and had one of the dreaded "dehydrated sleeps" i speak about above. It's 3 days later and I still feel pretty damn average (no, it's not a hangover. I know the difference between the 2 and I would far rather have a standard hangover let me tell you!). I'm a bit downtrodden as I'm starting to realise even with the nasal spray being more effective, I will always have to keep my DI front of mind and limit the amount of rigorous exercise and drinking that I do. Grateful if anyone else has any stories or techniques to be able to enjoy these two activities without issues whilst managing their DI. Many thanks

    PS I should also say I am intrigued by the prospect of alternative treatments / possible cures. This is particularly relevant for me as they still have not found a cause for my DI - I have had no head injuries and my MRI results are normal. Anyone else in this boat?

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