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diabetes insipidus

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nickys1903
nickys1903

Hi All

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.

4 likes, 60 replies

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  • jonathanrocks
    jonathanrocks nickys1903

    Posted

    Hi

    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!

  • david27179
    david27179 nickys1903

    Posted

    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).
    • Ukandy
      Ukandy david27179

      Posted

      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?

    • david27179
      david27179 Ukandy

      Posted

      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.
    • lindalee123
      lindalee123 Ukandy

      Posted

      Hi David

      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?

    • Delboy-lee
      Delboy-lee david27179

      Posted

      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.

    • david27179
      david27179 Delboy-lee

      Posted

      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.

       

    • Delboy-lee
      Delboy-lee david27179

      Posted

      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.

      Derek

    • david27179
      david27179 Delboy-lee

      Posted

      I am from the West Midlands have had DI now for 16 years. Retired from the Fire Service 6 years ago. I can honestly say I never had a day off sick from work due to DI following diagnosis and it has never stopped me doing anything that I have wanted to do (including skiing for 2 lots of 3 months in Canada and qualifying as a ski instructor). Hopefully once they sort your medication you will have no problems. I am guessing you are on free prescriptions now, but if not apply for a medical exemption card (qualifying condition) and you will be. Have you done a water deprivation test? I did this, you dont have anything to drink and they measure your urine output. If you are peeing because you are drinking the urination will stop. If its DI you will continue to urinate although you are not drinking. They then gave me an injection of the artificial hormone and the problem stopped immediately.
    • Delboy-lee
      Delboy-lee david27179

      Posted

      Hi David thanks I'm on pension so no broblems getting Meds hoping to pickup tablets later today then got to work out how to come off current Solfenicin & start Desmopressin don't  want to be on both at same time. Had quite bad Dehydration last & got to watch I don't over do the water intake. This site very slow today for typing.

    • Delboy-lee
      Delboy-lee

      Posted

      Hi again not long been discharged from QA Hospital Cosham after Blues & Two Ambulance ride 8am Tuesday morning. Long story but basically very ill after taking only three 100 micro gram Desmopressin. Following loads of tests drips etc was admitted for care test & observation until discharged on Friday evening. Quite a frightening experience but felt safe & comfortable where I was and was disappointed to be shown the door. The level of care was excellent & staff should be commended for their efforts across the board & including the catering firm.

      Am home for recovery & hopefully clarification on tests that are being carried out to determine if I have Diabetes Insipidus and as to which type. I have made my feelings clear on this but the Tech Lab are trying to be exactly correct on this & are currently not convinced? So back with more samples on Monday morning " if I have any energy left " as running on empty at the moment. Will be a good test for the experts at QA who I'm confident will carry out this task for me & my future care professionalsly.?

      What my little space for further updates ?

      Should I have started a new " Topic "

      Appreciate all comments & assistance as this is a bit scary but so far I'm self managing by limiting my fluid input to 2.4 litres a day in blocks of 200ml per hour as & when required and as have neat regular 2 hour Urine trips this works out fine. Thirst glands at back if throat certainly give me enough earning when to sip water etc. So avoiding over hydration & trips back in an Ambulance.

      As said I am self managing & teaching my Dear wife the joys off this condition for which I am totally 100% sure I got ?? But this time no Medication ?? Can help.

      Apologies for rambling as it now only 0630 in the morning UK time.

      Happy days 😫

    • david27179
      david27179 lindalee123

      Posted

      Hi, I am from Birmingham. I had no problems for over 15 years and now all of a sudden there is a blip, dont know why. Still managing to get it at the moment. We should all get together for a day out and meet at a fountain! LOL
    • tracey42161
      tracey42161 Ukandy

      Posted

      Hi David, do you have an endocrinologist? I also have diabetes insipidus from a head injury.
    • rod93781
      rod93781 tracey42161

      Posted

      Hi Tracey I too have had DI for 49 years from a blow on the head,just wondering what you use for ddavp. And what your symptoms are if you over dose. It's just neat to communicate with actual people,that understand some of the many unknowns and struggles,that we have had to figure out on our own. I had a post last night to someone about meds,even tho I know everyone is different. I live in Alberta Canada. Be good to hear from you

      Thanks Rod

    • tracey42161
      tracey42161 rod93781

      Posted

      Hi Rod

      We're neighbors I live in Vancouver BC. I take my DDAVP every night and interestingly my DI has gotten worse since starting treatment in 2009. I was extremely ill and in the hospital every other day for years for electrolyte replacement and IVs just to keep me alive until they found a diagnosis which took four years. Some of things I noticed about my DAVPR that occasionally I'll retain a lot of fluid and I'll have to go a day without it just to offload some of the swelling in my body from fluid retention. I also notice if I exercise that it wears off faster. And that it wears off very abruptly now like I noticed instantly when I'm out of faster present in my body. I still have regular blood test to make sure my lecture lights are stable as this is been an ongoing issue with hyponatremia and hypokalemia. It's been a long lonely Journey with diabetes insipidus. Until finding this blog today there was nothing that I found years ago when I was searching on the topic. And in Vancouver I think my doctor said he only ever heard of one other person that develop this for my brain injury and that wasn't until after I had developed mine. They had never seen it here in Vancouver before and had never run the test for it before as well. I'm so grateful to find other people that have developed it the same way. How are you now? Is your DI stable ? My doctor just told me last week for the first time that we finally have it stabilized. It's been a long journey I'm sure yours has been the same. I hope you're well and have lots of energy and can live the life you were meant to live.

      Tracey

    • rod93781
      rod93781 Ukandy

      Posted

      Hi Ucandy

      I have had DI for 50 years,got it from a blow on the back of my head hitting a step falling backwards. Used the spray for years and still do during the day,when the pill wear off. I mentioned this before,but I think well worth typing. The pills swallowed only seem to kick in about half way for about 4 hrs. But if I  dissolve them under my tongue with out talking when I go to bed at night,they last from 16-30 hrs. Tried crushing them and using during the day,works a little better but not as well as the  nasal spray. Good luck. Really like to here back if it works. I’m from Alberta Canada. 

      God Bless Rod

    • sergejs99659
      sergejs99659 david27179

      Posted

      Hello . I am from Russia but have been living in the USA for a long time. I cured this disease in Russia under the strict supervision of a doctor who knew and practiced this disease for 40 years. The preparations that I used for this disease were MINIRIN 0.2 mg, I drank half a tablet of 0.1 mg at lunch and 0.1 mg in the evening before bedtime, I took a break from taking the tablets on weekends and holidays. The disease was from 3 to 22 years. Now I am 35 and I am completely healthy as a bull, I am happy to learn from my experience in this disease if you or someone else was diagnosed with 3-4 years like mine

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