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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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  • roseann94834
    roseann94834 nickys1903

    Posted

    There are at least 4 generations of my family members that have DI.  My mother-in-law, husband, son and grandson.  We do not know if my mother-in-law's father had it - as he died when she was 12 years old.  My mother-in-law is now deceased, but I deal with it daily through my husband, son and grandson.  My daughter could be a carrier, but if so, she has not passed it on to her 2 sons and daughter. All my family members take desmopressin (generic DDAVP) tablets.  I'm glad I found this board and look forward to learning from each of you.

     

  • shannon.a
    shannon.a nickys1903

    Posted

    I was recently diagnosed with DI at the age of 24. After the horrible and long diagnosis stage, I've generally had no problems until now. This month I became very ill thinking I was dehydrated, after 3 hospital visits in as many days I finally spoke to an endocrinologist who explained I had dangerously low sodium and this is something I should look out for. When I was diagnosed I received literally no information about caring for my condition and after my recent experience and after reading all of your posts it is really opening my eyes to DI! Thanks for all the education and great stories smile

    • david27179
      david27179 shannon.a

      Posted

      Hi Shannon, I have had it for over 18 years now and these things have never been explained to me either. Fortunately I have not had the issues you have had. Are you in the UK by chance? Seems that the USA and Canada do checks for more often and are probably more advanced with this stuff.
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