I am now 39 years old and at the age of 36 was diagnosed with Diabetes insipidus. I am employed as a diabetes specialist nurse and had never even heard of diabetes insipidus and felt so very silly. I felt exhausted at the time as was drinking approx 6-8 liters a day and passing the same in urine. I was constantly on the toliet day and night hence I was getting no sleep and trying to continue to go to work.
I visited my GP whom was at a loss and arranged routine blood test ie glucose levels at this time it was a colleague whom mentioned diabetes insipidus and when I read more about this it fitted exactly how I was feeling. I returned to my GP whom arranged the appropriate tests and within 24 hours I was admitted to hospital.
In hospital my condition deteriated and we remain unsure why this was and no cause has ever been established for my diabetes insipidus. The results from my MRI scan did indicate substantial inflammation of the pituary gland but as to why is a loss this has since subsided without treatment for this. I have had a variety of tests and continue to be monitored very carefully and can not fault the care I recieved.
I know it is a very rare condition and would live to hear from anyone whom also has diabetes insipidus and there experiences. I was initally prescribed Desmopressin spray twicw daily but this remianed difficult to control my hydration levels and over a year ago my cosultant changed me to the tablets and these have completley changed my life for the better and I believe my diabetes insipidus is far better controlled from these. However GPs do remain reluctant to prescribe these due to cost although my GP has been excellent.
I have had DI since the age of 19years old I am now 64 years old. My first signs and symptoms were the same as we have all experienced on here with excess thrist, passing large volumes of urine, and weight loss not to mention the total lack of energy due to all this. But this was in the 1960s and the condition was not really heard of and my GP took three months of doing blood tests, telling my parents that it was stress related and that he could not find anything wrong with me, basically he assurred my parents thay I was just an hysterical teenager. Ond day at work I collapsed and was waken to hospital, still undiagnosed, but thankfully a doctor who hardley had any English speaking skills, knew what was wrong with me. I commenced injections of a drug called "Pitressin Tannate in oil" this was a thick nasty injection and had to be given intramuscually. I still have masses of lumps and scars on my legs and bottom even today. Six years after using the nasty injections I read myself of a nasal spray called Desmopressin that would do the job or controlling DI so off I went to my GP who said NO this is not for you its for children who "wet the bed". I persisted and begged what had I got to lose by trying it my body was sore from the big needles often needing two a day. BINGO it worked but the only down side to this was that it had to be kept in a fridge and I needed to keep it on me incase I needed to top up. Now the same nasal spray now called Desmospray is so handy and can be kept in my bag I also interchange these with Desmotabs. But the worry comes with age, it states on these medication "NOT TO BE USED AFTER THE AGE OF 65" I have no choice, but finding that my sodium levels are often so low that I feel very unwell, this never used to happen. A friend suggested I top up my electrolyte's by using those schatets of Hydration crystals that one takes when you have D & V don't know if this will work. But I have been reading that theyare working on Stem cell therapy to repair damaged Piturity glands in the USA not sure if this will be available for DI patients, would like to know if anyone else has any information on Stem Cell repair treatments?
I am nearly 72. I have had Diabetes Insipidus for nearly 40 Years. When I was diagnosed, I was given 18 Months to live. I still take DDAVP which controls it well. Where is this not to be taken over 65years?
I have it! I damaged my pitiary gland in a fall, I also broke my neck and i am paralysed with an indwelling catheter, hence i took myself off desmopressin spray and just drank loads, but now i am doing intermittent catheter and i am passing far more than i drink, about 1litre, as i have only just done the change from indwelling to intermittent it has not bothered me but i can see that weight is coming off . The nasal desmopressin stop me passing urine altogether and then when it wears off i pass loads? Is it desmomelt you take?
How were you diagnosed ? i have had a blood test for kidney function levels and they were fine but the drinking toilet thing is driving me mad. I only have to get up 1 or two times in the night as I am so tired I sleep very heavily.
Hi - in case this helps I just want to say that I too have Diabetes Insipidus (DI) and it is related to a rare condition which I also have: Langerhans Cell Histiocytosis or LCH. The DI came about two years after the LCH started but it took a really long time to be diagnosed for both. I was drinking about 20 litres of water per day/night, going on very little sleep and having a terrible time. The doctors were very slow to respond and take my symptoms seriously. There was immediate relief when I began taking Desmopressin through the nose, twice a day but that is no longer really sufficient. I am constantly monitorerd. The LCH can affect the pituitary gland in some cases and this is what happened with me I share this in case it helps you get closer to finding or elliminating a reason for your symptoms. Having doctors who do not understand these rare conditions can be very frustrating. I wish you the best of care and ongoing comfort. Cheers, H.
Hi. I have just recently been diagnosed with LCH. Has taken over a year to get a diagnosis but am now awaiting further mri scans before they deciding on best course of treatment. am abit overwhelmed at the moment. How have you found things? With the condition being so rare... Be nice to talk to someone who going through similar xx
I am 35 years old and I have diabities insipidus,I as diagnosed at 8 years old..I'm am 13 weeks pregnant and suffering terribly with migraines fatigue have you come across anybody with diabities insipidus pregnant???? Maybe we could swap email addresses then we can exchange experiences love to hear from you.
do you mind me asking have you had any children since having diabetes insipidus????? I'm 13 weeks pregnant and having awful symptoms in particular migraines all day ever day
I have had DI for about 40 years so I have been through the gamat of treatment options. Drug avaiability has increased substatinally, in my view due to the prescription of DDAVP etc. for bed wetting. I have noticed that medical persons' aewareness has increased as well although you have be be diligent to make sure that when a nurse or whoever takes down your medical information they record the correct diabetes!
Hi nickys1903, I have had DI for over 16 years and, like everyone else that has it, recognise your description of excessive drinking and urinating. Re lack of knowledge of DI, I had certainly never heard of it before and have never met anyone else that has it. On the couple of occasions I have had hospital stays for unrelated stuff I have been constantly rebuffing attempts to test my blood sugar levels after they hear I have DI but have no idea what it is (I even had a ward sister just walk away from me when I tried to explain it). I have not tried the tablets but have had a couple of occasions recently when my usual pharmacist has been unable to obtain my sprays (very worrying). I wonder if this might become the norm and lead to a change to the tablets? You dont say which country you come from (I am UK).
Hi david27179, I have DI as a result of a head injury 40 years ago and live in the uk. I have been unable to obtain the nasal spray which is the only thing that works for me to get decent sleep at night since November last year, so have to take tablets that don't work as long so I need toilet every few hours which is exhausting. Have you the same issue due to no supply and do you know why?
I had no problem getting it until about 6 months ago. My usual pharmacy could not get it but I managed to sort it at another shop. My last try there was a little blip but I did get it. I have no idea why we are suddenley having the problems but Boots said it may be because the manufacturers were developing something new.
Hello, I didn't see your note before. How are you doing?
I am 58, live in the US, and I've had hypopituitarism - no pituitary function - and diabetes insipidus for 26 years. I've had 2 children since having diabetes insipidus and I didn't have any problems.
Why are u unable to get the spray? Very strange it's on tap for me here in Lancashire the tabs take to long to get into my system so don't work for me.what has your consultant said? Where abouts in UK are u?
Hi David I am 68 young and have just been diagnosed with DI following a recent course of Tamisolin for suspected Overactive Prostate & currently Solifenacin for Overactive Bladder & as you can guess none have worked for my constant visits to the toilet to wee, averaging 15 times a day at the moment. Finally convinced my Doctor to look at DI after reading various comments on this site for which I am very thankful. Still waiting confirmation by Lab Blood & Urine but confident of our diagnosis. Following bad Dehydration this afternoon doctor has agreed to start me on the tablets as soon as I can get them. Thanks for all the great advise.
Hi Delboy, really feel for you and what you have been going through with this. I think its fair to say that non of us really forget the period just before diagnosis, although for me, fortunately it was a relatively short period. The good news is that the medication (I am on the nasal sprays) works very quickly. Once you have the medication and its right, hopefully everything will be fine from then. I have always said that if I have to have any medical condition in my life I am happy it is this as it has very little impact on my day to day life as long as I have the nasal sprays. Let us know how you get on once they get you on the tablets.
Thanks David really appreciate any help especially in early days as nobody I know including me & my family have ever heard of DI & complications so it's a steep learning curve. Been somewhat lucky as I kept faith in my Doctor & just went process of elimination from the so called experts. Next few weeks are going to be interesting to see how I settle into the Tablets? Don't really know why I did not go for the spray but sure if need be Doctor will accommodate if practical. Just for update I am in South of UK & retired 4 years now. So much for an enjoyable retirement. Will keep in touch & advise how I progress.