DIABETIS INSIPIDUS

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I'm a 77 year old male physician  diagnosed with central Diabetis Insipidus about 8 months ago after experiencing headaches and very large volumes of urine per day. My MRI was normal and my blood tests consistently showed zero ADH (although this is not an accurate test.) I have a history of auto-immune issues  (low thyroid, hearing loss, etc), so I am certain this is the cause of my diabetis insipidus, too.

I originally used Desmopressin spray, which resulted in less urination but more headaches and low sodium levels. Then I started Desmopressin 0.1 mg tablets, which work extremely rapidly and very well for me. (Acceptable urine volumes, stable weight and no headaches!) 

The curious thing to me is that all I need is one quarter (!) of a 0.1 mg sesmopressin tablet at bedtime, which lasts 24 hours. I weigh myself at bedtime and in the morning so I know I have been stable in terms of my weight and fluid balance. What is even more curioser is that about every month or so I don't require any desmopressin at all for about 3 days! Then my urine volume steadily increases again.   

I wonder if anyone in this forum has found that a very low dose of a desmopressin

tablet once a day works well for them. Although I am a physician (a pediatrician, actually), I think my best source for comments about such low desmopressin doses is from patients themselves, since Information from my medical colleagues or in medical  textbooks is scant to say the least. 

So what do actual patients think about very low doses of desmopressin? By the way, my diagnosis of diabetis insipidus is accurate.   

 

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4 Replies

  • Posted

    Interesting after 49 years of experimental pretty much on my own with DI. Many of us frustrated that there's still so little know. Every body needs a little different dosage. I take .02 mg. and if I don't dissolve it under my tongue laying down it does nothing for me if I swallow it. And we all seem to have a little different symptoms. Welcome to the world of unknown DI. Some day I hope this changes.

    And I'm so thankful to have finally found this web site after 48 years of frustration and see that there really are other people out there with some of the same struggles and not very good answers.

    God Bless

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    • Posted

      Thank you for your warm and intelligent reply. You are surely accurate in referring to "the world of unknown DI." After 55 years as a medical doctor it's still relatively unknown to me and I am finding my most practical and helpful information right here on the forum.

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    • Posted

      I have suffered from Diabetes Type 2 for 30 years. and one thing you mentioned was the cluster of Auto immune issues you suffer from.I also suffer from a raft of similar.     .Diabetes

      2, Glaucoma,Hearing loss, Low thyroid,Sick sinus syndrome (pacemaker fitted)  Polymyalgia, Enlarged prostate,Baretts oesophagus Are they all related to auto immune problems? I had never heard of DI before..but can relate to large volume of urine during the night. About 1 litre.

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  • Posted

    Diabetes Mellitus type 2 is a totally different type of disease than Diabetes Insipidus, BUT, both reflect the body being in "dis-ease" or imbalance, to which we doctors then give fancy names and treat differently.

    In any case, once the body is out of balance it can then be host to an entire array of problems, so it's common to several disease problems at once. Auto-immunity is a strange phenomenon in which various parts of the body create antibodies to itself--literally attacking itself. So if someone has an underactive thyroid, or a sudden loss of hearing, or an arthritic condition like your polymyalgia, and Diabetis Mellitus on top of all that, then it's indeed a reflection of the body being out of balance. In my  case, which is sudden hearing loss, low thyroid, and Diabetes Insipidus (for no detectable reason like a tumor), then it's also an autoimmune phenomenon. 

    Best things for both DI and Diabetis type 2 besides taking the proper meds are still regular exercise (just a brisk 20 minute walk most days is great), NOT smoking, a Mediterranean style diet with lots of fresh veggies, fruits, fish and very little dairy and red meat, use portion control to manage obesity, take a good multivitamin plus extra vitamin C and about 300 mg tumeric a day, try not to stress and take time for   meditation or prayer every day. Have fun, too, and also make a gratitude list. Anyway, that's what I do in addition to taking my Desmopressin every day. 

    Doctor Ed 

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