Sometimes referred to as "The Other Diabetes," Diabetes Insipidus (DI) is a rare endocrine condition characterized by excessive thirst and urine volume. DI can result in one of two forms: nephrogenic (failure of kidneys to respond to ADH) or central (lack of ADH production) (NIH 2008)
Now 22, I was diagnosed with Central DI at age 7. In consideration of the rare nature of my condition, (in addition to the extent to which DI has affected me) I have had a particularly difficult time growing up without any true peers (in the genuine sense of the word).
I would be very grateful to speak with anyone who has been affected (even indirectly) with Diabetes Insipidus.
Also, if you think that you may be a candidate for this diagnosis, I can tell you that it is a condition that few doctors are very knowledgeable of. My goal is to increase societal awareness of a little-known condition that has affected (at least) one person a great deal. For that reason, I am speaking out.
*Please do not hesitate to contact me!*
-Lauren.
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Diabetes Insipidus
- By MsLauren86
- Posted January 17, 2009 at 9:01 am · 43 replies
- In How my disease has changed my life
- Shared with the public
Explore topics in this discussion:
Dizziness Surgery Chronic pain Falls Confusion Stroke Diabetes Fever Anemia Metabolic disorder Constipation Pain Addison's disease Memory Rare diseases Cortisol
43 replies
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- Newest first
- By PAMom
- Posted January 18, 2009 at 4:23 am
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Hi Lauren, my daughter Kristin was diagnosed with diabetes insipidus when she was 4 1/2 years old. Her primary diagnosis is propionic acidemia (PA), a metabolic disorder in which the person fails to break down protein properly. From the start Kristin was hard to keep hydrated and required so much more water each day compared to other PA kids we knew. After starting on oral DDAVP we were able to keep her hydrated ! Then it became easier to keep her PA under control (still requires 24/7 vigilance) so we are grateful that we now have a better tool to keep Kristin healthy.
- By dizzybee
- Posted January 18, 2009 at 2:14 pm
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i only had it briefly after pituitary surgery, so I really can't weigh in on it. All I remember was getting shots in the belly like every couple of hours. I will pray that someone out there can help you.
- By MsLauren86
- Posted January 18, 2009 at 9:29 pm
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PAMom:
I can't say that I've ever heard of PA, though I am very happy that DDAVP has helped your daughter! I have a few questions if you don't mind me asking...
First, to your knowledge- do you know what the origin of the DI is? (In my case, it remains "idiopathic.")
Second, I am not sure how old your daughter is now and/or how long she has been on the DDAVP, but I was curious if she has developed any other health problems. (I also deal with chronic pain and have long since wondered if there may be a link between my endocrine issues and/or the DDAVP itself).
In any case, I appreciate your response and really look forward to hearing from you! I'm also very glad to know that your daughter is doing well : )
Take Care,
Lauren
- By MsLauren86
- Posted January 18, 2009 at 9:44 pm
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Dizzybee:
Any input is worthwhile input in my book... so thank you for writing! Your experience is one that I have read about frequently. I am glad that DI was only temporary in your case.
As far as prayers go, they are also appreciated. While DI may not be life threatening, it is undoubtedly life altering for anyone touched by it.
Best,
Lauren
- By margaretha
- Posted January 19, 2009 at 11:38 am
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Laureen,
I too have DI - at least my physician says so even if some other physicians disagree. But with medication (minirin, but I'm not sure it is called so in the States) I live a fairly normal life. Nobody seems to know if the DI is connected with my other condition, which is a rare condition without name - and so far without any remedy
Margaretha
- By MsLauren86
- Posted January 19, 2009 at 6:33 pm
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Hi Margaretha!
Thanks for writing! To my knowledge, it is most commonly sold under the brand name "Desmopressin" (or DDAVP), though I have heard of minirin, as well. I am glad to hear that you are doing OK.
As for the other condition you mentioned, I was curious what types of symptoms you suffer from.
I look forward to hearing from you!
Take Care,
Lauren.
- By margaretha
- Posted January 20, 2009 at 7:09 am
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Sorry I misspelled your name!
If you click on my name you find what I've written about my illness under "About me". It covers pretty much what is to say about my symptoms - although I, like most patients, could go on for hours with all the details.....
Just ask if there's anything else you wonder.
Margaretha
- By Sailor
- Posted January 20, 2009 at 1:59 pm
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Lauren,
I have had DI since I was 25, I'm now 39, so it's been around a little while. I have a rare AutoImmune Disease and DI goes along with it most of the time, along with some other fun things! It take a little while to get used to, but, it is easy after a short while to incorporate it into life.
Good luck with it, it'll be a pain at first, but, it will get easier.
Lance
- By aneres
- Posted January 21, 2009 at 3:56 am
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Lauren,
Hi. Thanks for your post.
For close to a year now (at least) I've experienced frequent urination, large volumes, usually colorless. When I told my doctor about this he did think of DI right away (I'd done a bit of research on my own and knew it might be a concern), and he tested my ADH level. When that came back normal, though, he said that I don't have it. I don't know what the tests are for nephrogenic DI, but I know that he didn't do them.
I'd push the issue more, but I was just diagnosed with Addison's Disease (adrenal insufficiency) in November, and as I understand it, lack of the hormone aldosterone can cause excessive urination as well. (I actually think that aldosterone plays a role in the release of ADH at some point--need to research that more.) Anyway, my peeing has slowed down somewhat since I've been on replacement therapy, but I'm still not sure that the Addison's accounts for everything.
A question--your answer would help me... With DI, do you have times that are worse than others, or is the frequent urination always there? Mine seems to vary a bit. It's also worse at night--is that something that people with DI experience?
Thanks for any answers you may have. I'm sorry that you've had to deal with this from such a young age, and that it's affected your life so much.
--aneres
- By Roja
- Posted January 21, 2009 at 11:17 am
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Hi Lauren,
My DI (central) was discovered in 1998/99 while I was pregnant with my second child-I was 35. I chose not to start DDAVP until just before my son was born, but have been on it almost 10 years. For many years they thought it was idiopathic, but because I've had unexplained flank/kidney pain that started about 9 years ago-they've done loads of tests. In October '08, after MRI's (brain, bone, etc.), CT's, bone scans, and finally a biopsy of my pelvis (where they saw 'bone involvement' during a CT of my pancreas), I was diagnosed with Erdheim-Chester disease. Apparently this very, very rare disease causes lesions in one's bones, organs and brain. My kidneys have been 'messed with' (are enlarged, etc.), but thankfully still work perfectly. However, they found a lesion on my pituitary during a brain scan (as well as lesions-histiocytes-in many bones and my brain) and come to find out, many people with Erdheim Chester have DI. It's amazing to me that they are saying I have probably had ECD for 10 or so years! Fortunately for me, I don't really have other symptoms that are debilitating, but I have had to begin taking shots (I do it myself) of InterferonA on Monday, Wednesday, Friday of each week for an indeterminate time. They need to keep the lesions from moving to my heart/lungs, because that's what makes this disease potentially fatal. I have lived with DI for so long that I don't even think about it. I have a bottle of DDAVP in my purse, by my bed and in a kitchen cabinet at all times, so when I need a spray, I take one (I will not accept the kind that needs refrigeration-Bausch & Lomb?-because I can't imagine carrying a cooler everywhere!). I have found that because I don't feel thirsty most of the time, I am prone to constipation (TMI, but this is a medical type website), and now that I'm on Interferon, I'm supposed to drink loads of water!!! That is an effort for me. If you have any questions-feel free to contact me!
- By PAMom
- Posted January 23, 2009 at 1:52 am
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Hi Lauren,
My daughter is 9 now and has been on DDAVP for about 4 1/2 years since her initial diagnosis with DI. Her main health issue is the metabolic disorder propionic acidemia, for which she is on a very strict low protein diet. I have not noticed any symptoms related to her taking DDAVP, and she would let me know if she was in pain. Perhaps some symptoms may be dose related? She takes 8 tablets/day and each is 0.1 mg DDAVP (not desmopressin generic). The 8 tablets are spread out into 3 doses during the day. The only thing I notice is that when it starts to wear off she pees a lot and we have to change diapers faster.
- By PAMom
- Posted January 23, 2009 at 1:54 am
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Lauren, I forgot to say that the docs mentioned her DI might have been caused by her brain injury when she was 5 mos old. She had what is called a metabolic stroke when she had her initial metabolic crisis before anyone knew she had PA.
- By MsLauren86
- Posted January 24, 2009 at 1:27 am
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Aneres:
I just read your post. First, I would like to commend you on your commitment to educate yourself on your medical care; often intimidating to physicians, it is this attitude that perpetuates a diagnosis. That said, while you indicated that your doctor did not share your original suspicion of DI, it may have been that he (more accurately) did not share your knowledge of it.
In any case, you said that you began replacement therapy and experienced some level of relief from your symptoms. (what was the hormone your doctor was attempting to replace?)
Admittedly, I am not all that well-versed on the Nephrogenic end of the condition, but I can tell you that while aldosterone may indeed cause Addison's Disease-- CORTISOL is the most common culprit. As far as its diagnosis, an ACTH stimulation test makes the top of the list. A CT scan is also relatively common in diagnosing the condition.
You also asked about your urine frequency, with respect to DI. Nearly 15 years ago, my diagnosis was made subsequent to a Water Deprivation Test (a standard protocol to diagnose DI). For approx. three (3) years, I experienced what my Endo. at the time referred to as "breakthroughs" anywhere from 3-5 times a day. Without a doubt, these times were much worse when I would try to sleep at night. Fortunately, after finally figuring out what is my proper daily dose, I rarely experience any such side effects. However, I still do feel as though I urinate more than most people. (I hope that answers your question!)
In short, I would think that the urination problems you are describing are largely the result of a dose-dependent issue. Replacing [anything] which naturally occurs in the body is bound to take some time. Are you currently under the care of an Endocrinologist?
As a side note, does your skin have a dark(ish) tint to it by chance?
- By MsLauren86
- Posted January 24, 2009 at 3:31 pm
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Roja:
You certainly have an interesting experience to share! I can't say that I am very familiar with Erdheim-Chester disease at all. (Intrigued, I decided to see what research I could find... it seems as though it really truly is an incredibly rare condition).
As far as the DI goes, I'm glad that you are helped some by DDAVP. I was curious: have you ever tried using the medication in its oral tablet form? While I once used the spray, I quickly gave it up for the tablets when they came on the market. It eliminates many of the inconveniences I always associated with the nasal spray. Just a thought :)
- By Skyblue11002
- Posted March 10, 2009 at 10:48 pm
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Hi Lauren,
I'm 53 yrs old & was diagnoised about 4 yrs ago with Central DI with no know cause. I take Desmopressin, in tablet form, & can't say it's been much more than annoying. I do experience break through symptoms, usually in the evening, but it's tolerable. I don't appear to suffer from any side effects from the medication, but there's not a lot of info out there on the effects of L/T use.
Before I was properly diagnosed, it was pretty awful. I could drink quarts of water, & 5 minutes later, be untolerabily thirsty. I lived in the bathroom, often having to go several times an hour.
The symptoms,even now vary. During the day, I can go 6 hours inbetween doeses, but in the evening, I need to take more to be comfortable.
My endrocrinologist recommended, I take as few pills as possible, & to allow break through symptoms when convenient.
Do you know of any L/T effects of having DI or taking the Desmopressin?
Lorraine
- By MsLauren86
- Posted March 10, 2009 at 11:05 pm
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Hello Lorraine,
Thanks for writing! I regret that I don't know much in the way of long term effects of Desmopressin; unfortunately, there definitely exists little research about the medication as well as DI itself. I started this thread because (well, there are many reasons)... but primarily because I cannot help but think that my endocrine "issues" are in some way shape or form related to my other health problems (chronic pain).
Though I try very hard not to remind myself of it, the fact is that: no one can really be certain of anything. I have my own personal theories as to why such little research has been done and I seriously doubt it revolves around the # of people afflicted with the condition. There are many so-called rare diseases in existence that would have never materialised as such had it not been for the funding and attention that are [absolutely] necessary to alleviate the suffering of those who live in their shadows.
Well, I apologize for getting off on a tangent there! Again, I really appreciate your post... it's been awhile since I've checked this forum- so it was nice to read another message :) In fact, you made my day! Please feel free to write anytime! Take care Lorraine!
- By MsLauren86
- Posted March 10, 2009 at 11:15 pm
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Reading over your post... I just noticed that you did ask if I was aware of any of the long term effects of DI... (woops!) Actually, as a result of my many, many dr. visits over the years- I have been told a number of "possible" outcomes. Now, I will also tell you that I would take them with a grain of salt, as my own research has contradicted what some physicians have speculated. Indeed, it seems I will have to be the judge : (
First, there is a possibility that someone with DI may develop cardiovascular problems later in life. My very first endo. (extremely intelligent man who has since passed away told me this when I was 7). Moreover, he noted that pts. w/ DI are known to be at increased risk for developing osteoporis. I can tell you that this speculation makes absolute sense in my own case, as I currently suffer from both anemia and very low Vitamin C & D.
In retrospect, his other info. pertained to secondary hormonal deficiencies (as I developed GH deficiency ~2 wks. subsequent to the DI). After I began the injections, I stayed on them for approx. 3 years before I reached my "adult height." Now, at age 22, I believe that I still lack HGH as an adult and I am convinced that I require it (as all adults do) in order to maintain quality of life. Unfortunately, the test required to assess levels cannot be performed locally.
*I hope I haven't babbled too much!
- By Roja
- Posted March 11, 2009 at 8:29 am
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Skyblue,
I have never tried the tablets, but have to say, the nasal spray is much less 'medicine-like'. I already have to take various pills (allergy, vitamins, etc.), so I find that just reaching in my handbag or the drawer by my bed, giving myself a quick spray and going on with my day is almost automatic-never invasive.
I have asked endocrinologists about allowing myself to let the meds wear off between 'snorts', but none of mine have ever had a clear answer. I find that I sometimes let it go until I am definitely in need of my DDAVP and other times I first begin to feel the need to urinate more freq./a little thirst before I have a dose. Honestly, no offense to endo's, but they really don't have any idea what your dose should be (as far as the nasal spray goes)-I'm always asked, 'how many times do you take your meds a day' and I say, 'whenever I need it'-that's the way DI is-you can't pinpoint anyone's exact dosage! You just have to be smart and take it when you need it-wait for some symptoms before dosing, but not be uncomfortable EVER. That's why I recommend the spray-one spritz and you're on your way.
Honestly, in 10 years, the only complaint I've had is occasional constipation (and if you don't drink water-that happens). I have had so many tests-from cardiac to bone scans to brain/organ MRI's with no obvious side-effects.
My goal with this disease (now coupled with my ECD), is to live my life as normally as possible...I've been able to accomplish that with the nasal spray since it requires no swallowing, getting a glass of water, etc... Perhaps your endo. can prescribe this for you-just don't get the generic (Bausch & Lomb) because it needs refridgeration.
- By mikeandecd
- Posted March 11, 2009 at 11:10 am
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Roja,
My husband has ECD (dx 5/06) and is also on interferon-alpha 2a (switched to 2b recently) and takes it by self injection 3 x/week. He has been doing this since his dx and his last CTPET scan showed no new sites if infiltration and previous sites stopped. If you have not already done so, please check out www.erdheim-chester.org. This website was started as a support group for ECD patients and their loved-ones or caregivers. We began with 6 cases and now have 40 cases registered with the site. We have regular chat sessions and would love to have you join us. I would like to know more about your case as well - I think it is always good to compare notes with rare diseases as our group ECD Global Alliance (completely volunteer and no cost to join) goal is to raise awareness about ECD as it might not be as rare as thought. Please check us out - we are always ready to help anyone with ECD. Best of luck, Carol
- By Roja
- Posted March 11, 2009 at 3:46 pm
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Carol,
I am a member of the ECD group, but haven't had a chance to do the 'chat'. I find that many of the discussions deal with more intense symptoms than I have, so I don't know what I could add!?!!
Why did your hubby switch to interferon B if A was working? Just wondering. I've only been on the A since December 16. Roz
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