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.
Diabetes Insipidus Remission 1:
http://www.imperialendo.co.uk/metmed/S004.htm
very informative.thank you for sharing
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.
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.
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
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.
Diabetes Insipidus is not a blood sugar related condition.
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
Diabetes Insipidus Remission 2:
https://www.ncbi.nlm.nih.gov/m/pubmed/17663299/
Diabetes insipidus remission 3:
https://www.nejm.org/doi/full/10.1056/NEJM197810052991406?query=recirc_curatedRelated_article
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?
Autoimmine form of diabetes insipidus and vasopressin antibodies:
https://www.ncbi.nlm.nih.gov/m/pubmed/6345118/?i=4&from=/8137514/related
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
Great responses. I had no idea. I'll carry on as an enthusiastic observer,
THANKS
Curious to know if anyone on this discussion
has any other auto- immune issues. In my case I never have so far . 73 now. Ive been
pretty fortunate health wise. Other than DI only mild hypertension and some pretty minor prostate issues
TOM C
Hi, I am so glad to have found your post. I couldn't have described what is happening with me for 10 years more accurately than you. I have random bouts of frequent urination with clear in color. There are days when i go about only 6 times in a day and urine looks concentrated and yellow. The other days it is at it's worst - I can go about 20 times a day and each time I pass clear urine and lots of volume. My blood tests have been normal for all kidney test, diabates other etc. My urine osmolality ranges between 200 - 700 ( 700 being best days. Interesting thing is the first urine after waking up is yellow and i get urge to go in another 1 hour and second time it is clear like water and lots of volume again. This sets the day as I keep going once after waking up. The more water i drnk, more i have to urinate. I had a water deprivation test where doctor mentioned urine is concentrating slowly. Blood sodium has been normal. Another interesting points is that my wife who was pretty normal, picked this symptom as well and she struggled as well. But all tests related to urine routine and culture were normal. The only blood test which has been out of range is IgE - 1100 . I seem to have idiopathic condiition of diabetes insipidus . I have been on spray DDVAP , which works sometimes and doesn't work other times. The ariticle about mast cell disorder has interested me as it seems to be related to IGe. I used to struggle with asthma during child hood. If you have any more information, please post as I've come to stage where i'm not able to bear anym ore of this
Another interesting aspoect i s that i'm never thirsty. I just drink since i lose water in loads.
hi i dont see anyone responding. can you reply please?
I can only comment based on my own experiences. I find it a little strange that the DDVAP spray only works sometimes? I find this to have an immediate affect on the drinking/urination cycle. The other comment I would make relates to your 'never thirsty' comment. Without the spray, I experience thirst like you could never imagine if you have not experienced it. Before being diagnosed with DI, I once drank about 5 litres of diluted cordial in less than an hour and was still thirsty!