Anyone with Diabetes Insipidus (DI) or anyone out there that has Complex Central DI? I am wondering what meds you take, What your struggles are? My struggle is with me forcing to drink a lot of water to make sure my sodium isn’t too high. (160’s been the highest for me) I also cannot lower sodium too fast bc once in the hospital, the nurses did with IV, and i was an 8 year old hallucinating, very scary. Average sodium is 155ish for a “normal” level. Major med i take is Desmopressin. Used to take nose spray but endocrinologist changed it to tablet to be more effective. I am on a bunch of other meds as well, but Desmo is one i NEED.


Levothyroxine Sodium


avoid sodium

Diabetes Insipidus (DI)

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  • StripedTurtle


    What?! My endo said the nasal is more effective over the pills. DI is by far my most inconsistent and frustrating conditions. I feel its always up and down and all over the place, so frustrating!!

    • rezz_berry


      I did the nose spray age 8-10ish so maybe it was because it was done incorrectly? Ex. not blowing my nose, ect lol, but my endocrinologist doctor changed it and i’ve been taking the pill for years and it has been working well! But yes it is extremely frustrating, growing up with it for about 15 years i am totally over it

      • Peanut1T


        I've lived with Diabetes Insipidus since I was 7 and I took the spray in my childhood, but it kept giving me staph infections and my endocrinologist changed to the DDAVP (Desmopressin Acetate). I'm in my 40's now and have to take 4 a day. It works much better for me, than the spray did.

  • RoseVirgo


    My biggest struggle is managing my water intake,as I don’t have a thirst mechanism.

    • rezz_berry


      Ugh same! I really have to force myself once i start getting dehydration symptoms

  • RoseVirgo


    I take desmopressin as well.

  • Kharma75


    I take the desmopression nasal spray as I have been told it's better than the tablet. Before that I was taking Minirin nasal drops which is a lot safer to take than desmopression but I can no longer get it in my country which is why I switched. My specialist told me to stop taking it once a week to give my organs a rest. I must admit when I don't take it I am enjoying feeling thirsty again.

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