Diabetes Insipidus...or is it? A possible cure?

Posted , 22 users are following.

I am creating this thread in the hope it can be a place of hope and support for those with diabetes insipidus (or health issues that mimick this condition) and also possibly provide information to help some people resolve their symptoms, or dare I say it, find a cure.

First, please let me state I am not a medical professional so please do your own research, I'm am just sharing my thoughts and ideas.

From my research over the past 2 years I have reached the conclusion that many people diagnosed with cranial diabetes insipidus, particularly idiopathic cranial diabetes insipidus may have a different underlying condition that may be causing their symptoms and may actually be able to resolve these issues and possibly cure the disease.

I find new cases whenever I look, of diabetes insipidus that has gone into remission or gone away after a patient has taken certain medications for conditions not thought to be related to diabetes insipidus.

There seems to be a link between immunosuppressent drugs given to patients that has often resulted in the symptoms of diabetes insipidus disappearing. Could diabetes insipidus for some people actually be caused by an autoimmine condition? And some medications taken for autoimmine issues can possibly resolve diabetes insipidus?

I'm my opinion there are those with diabetes insipidus due to genuine pituitary / hypothalamus issues be it from a tumor, inflammation, head trauma etc but there are also those who have an autoimmine condition which somehow suppress vasopressin. I also believe there are those that do not have anything organically wrong with their production of vasopressin but for some reason the body has become confused and has become hypersensitive to fluid intake and believes the body needs far less fluid then is actually adequate. As if the water level for the body has been lowered dramatically and whenever you try and hydrate the body instantly wants to dump the fluids out but at the same time people with this issue can still produce vasopressin and their condition often fluctuates.

I have probably said enough for now but I will share some studies and stories of diabetes insipidus in my next posts.

Please feel free to get involved and share your experiences and ideas on this subject and if you kmow of any stories of improvement/cure of diabetes insipidus please post them here.

I will find a way. Thank you.

3 likes, 36 replies

36 Replies

  • Posted

    I read your post with interest as I was diagnosed with idiopathic DI nearly 20 years ago and have been on Desmopressin since then. It seems to me that research into this condition is sadly lacking. I always get the feeling that when I attend my annual 'check-up' for the condition, that the consultant is learning more from me than the other way around. It saddens me greatly that on visits to hospitals for other issues, I usually end up having to explain what the condition is to medical professionals. Especially when trying to prevent them from taking blood to check sugar levels when they hear I have 'diabetes' (how I wish our condition had been called something else!).

    In respect of the observation on fluid levels and the body somehow becoming hypersensitive to fluid intake, that is an interesting theory. In particular the suggestion that the body may still produce fluctuating levels of vasopressin, someting I have often wondered about. I tend to view it a little like failing eyesight, you wear corrective glasses and your eyes get weaker to fall in with the lenses. I am certainly finding that the one spray up each nostril, twice a day, is not now covering the full 24 hours. Although I tend to attribute this to the very poor quality of the spray devices which I often feel have not delivered the correct dose.

    I am very interested to hear other peoples views on this post and to see how it develops.

    • Posted

      Thank you for the reply David. I feel your frustration.

      It's funny you say the desmopressin doesn't cover you for the full 24 hours now. The more desmopressin I take, the more I seem to need. Then if I go a few days without it, I need less again.

      My vasopressin definitely fluctuates as if I get very hot or exercise and sweat my urine can get reasonably dark, without being on desmopressin. So heat and sweat definitely triggers the release of vasopressin to an extent for those that can still produce it.

      I am currently trying to post links to some studies demonstrating diabetes insipidus remission but the posts are waiting to be moderated and I'm unsure if they will let me post links here.

  • Posted

    Thanks for the information. Others are correct in that most medical practitioners

    don't seem to know much about this condition. I was diagnosed with this condition when I was 7 years old. I am now

    73. So Ive dealt with it for 66 years. Ive been on lots of different meds over the years. Started with Vasopressin injections for the first 25 years. Also used nasal sprays both

    liquid and powder-pre cursors to DDAVP I guess. Nothing worked great. Meds were

    always short lived and DI symptoms were never totally gone only relieved for several hours. Then about 40 years ago started on

    diabinese(chlorpropamide) 250 mg/ day. Totally controlled the DI. Never had any return of symptoms unless I skipped meds for a few days. Now Mylan ceased production of it about 6 months ago. Guess I

    will have to try DDAVP but am not looking

    forward to it. Ibuprophen also helps me as well. Not sure if it is the antinflammatory

    effect or that it potentiates circulating ADH.

    It sure would be nice if they came up with

    a cure or some other treatment. Thanks for

    the information.

    Tom C

    • Posted

      That is very interesting.

      So do you also have diabetes Mellitus, is that why you were prescribed chlorpropamide? Or did they let you try that for DI?

      If the drug has been discontinued is there not a similar drug they can try you on?

    • Posted

      Hi Tom,

      I'm coming back to this post after nearly a year and half and coincidentally I have been looking into Chlorpropamide and other medications as alternatives to Desmopressin as it just doesn't do much for me.

      How are you getting on, are you still taking the Desmopressin?

      I've done a lot of reading over the past couple of years on the subject of DI and there are so many different sub types and possible causes that are never spoken about.

      For now I am attempting to find somebody who will allow me to try a different medication. As well as Chlorpropamide, there is Indapamide, Clofibrate, Carbamazepine and Oxcarbazepine which have all been used in the past and shown to improve DI .

      Any ideas how I can go about getting one of these medications as my Endocrinologist is just too out of her depth to consider letting me try something different.

  • Posted

    Hello Recoverandheal,

    thank you for starting this discussion.

    I didn't know there was such a condition, but it makes sense. I have a friend who underwent bariatric surgery following massive weight gain due to steroids. She has since developed blood sugar issues similar in some ways to diabetes.

    I have also read some on a condition caused by a blocked gallbladder/ pancreatic duct that causes a bunch of autoimmune problems, gut problems and of course blood sugar issues.

    I think the two main causes for the sort of condition you ask about are stress and medications. Both cause autoimmune disease. Stress causes constriction that may contribute to blocked pancreatic duct.

  • Edited

    HI again everyone . Just so everyone understands DI has nothing to do with sugar metabolism or insulin or blood sugar. Name

    is really a misnomer. It all has to do with the

    kidneys. DI is a condition in which the kidneys excrete excessive amounts of urine. This leads to tremendous thirst with some people drinking gallons of water and fluids a day. Blood sugar levels are normal. As the

    previous article explained there are 2 types.

    Nephrogenic and cranial. Different treatments for each. Not related to regular

    diabetes at all. Even insurance companies

    get it confused. Im always getting health

    emails from insurance and medicare telling me how good im doing with my blood sugar .

    They just cant understand that Chlorpropamide will treat DI as well as DM.

    Tom C

  • Posted

    Thanks for the interest. No I dont have DM. And never really had any issues with hypoglycemia from the chlorpropamide.

    Chlorpropamide is an off label treatment

    for partial cranial diabetes insipidus. Totally

    different mechanism than when it was used

    to treat DM . Its a very old drug and probably with very little demand today. Not

    aware of any related drug to it thats available

    and that is effective. Thiazide diuretics work

    for some but I think its more effective for

    nephrogenic than cranial Di. Also some other older drugs were used off label like tegretol and clofibrate Im not sure they were very effective . Desmopressin(DDAVP) is probably what Ill have to switch to. It is the drug of choice today. Forty years ago it wasnt really available. Chlorpropamide worked so well

    there was no reason to switch.

    Tom C

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