My diabetes insipidus journey

My DI occurred post surgery, so I didn't have to try to get by without DDAVP. I don't get headaches when I have to go without it either. I do get a bad headache if I take too much DDAVP over a period days. I think it is related to electrolyte imbalance and I plan to see a doctor and figure out exactly what is going on. 

Good to know thanks

Hi! I’m 22 and yes I’m 99% sure you have DI! I got symptoms and mine were so severe, I thought I was dying within a month. As a kid I had LCH (cancer like disease) and wellllll LCH causes diabetes Insipidus. There is no tumor but the posterior of my pituitary gland is dead! Get an endocrinologist ASAP. They will do a water deprivation test and it will suck but it’s necessary! Even now though, I’m famous in my doctors office because DI is sooooo rare. 

I was taking 3 .2mg pills a day and that was helping my life become normal, but I just switched to the spray and I love it!

Sounds like DI to me!  I went almost 30 years before I was diagnosed.  I hear you pain.  Definitely talk to your endocrinologist and have them do a water deprivation test to get a diagnosis (it sucks but necessary). The first time they inject you with the drug - you will freak out on how not thirsty you are...and it lasted 24 hours for me.  I couldn't believe I didn't want to drink, didn't feel dehydrated or anything. If the drugs work for you it will literally change your world.  No more excessive thirst and sleeping all night is amazing!  Good luck and hopefully you will be feeling better soon!!!  I agree with leannlittleton - the spray works better than the pills!

Hi leannlittleton and thanks for your reply! I'm sorry to hear about the LCH and hope your doing better in regards to that now and also the DI. I hope your feeling better? The spray sounds amazing and sounds like it helps a great deal!

Hi Amy and thanks for your reply! Yeah, I've noticed if I don't drink enough then things seem to get worse. I've been getting weird fevers lately as well, they never get really higher than 100.0 degrees F. Is there any tricks I could try in the meantime besides my water intake to try and improve the dehydration while I wait for some form of treatment? *Assuming that DI is the cause of the dehydration* It seems water isn't simply enough right now for me. I only have to wait until Monday, I noticed the fevers mentioned by some. Is that a common thing with DI? It's been a rather recent development which started towards the beginning of this month in my case. I've been drinking some of those Naked fruit juice drinks to try to get some extra potassium, maybe that will help? Maybe it is helping, I'm not sure. Thank you both for the encouragement and kind words. Your responses mean the world to me and have given me some form of hope.

Hang in there.  I would hate to give you advice if you have some other things going on that maybe aren't a part of DI, so definitely get to a doctor as soon as you can.  I know my kind of DI they told me it was a good thing I was drinking all the water since I was losing it as fast as I was drinking it.  Weird to think that a little part in your brain controls your water regulation for your body.  I know I had horrible leg cramps all the time.  I drank smart water and coconut water.  But what really helped with that was Magnesium pills for the cramps.  Not sure about the fevers, I don't remember having that, but there are different types of DI. I kind of forget what it's like to think of nothing but drinking water...leaving the house with huge bottles of water.  Constantly going to the bathroom.  Now I forget to go and sometimes forget to drink for hours.  It really is life changing. 

Jorden , welcome to the club of crystal clear urine.. you definitely sound like Di. When you go to your appt make sure you have your sodium level checked, it should be between 135-145. People with DI have problems with wiping out there sodium. I too dont have a tumor but have Di and the drs have never figured out why. I've had it all my life and I'm 45... any other questions send away

Hi Jordan, very sorry to hear that you have been suffering so long. As everybody is saying you sound like a classic member of the DI club. As Amy said, once you have done the water deprivation test (in fairness I did not find it such a pain as I knew it would lead to solving the problem) and they give you that injection, the relief will be immediate. I have been on the nasal spray now for 18 years and have no further issues. There are some amazing and very knowledgable people on this site so stay with it and know that support and answers will always be there. As leannlittleton said what we have is pretty rare, I have certainly never met anyone that has it  and usually have to explain it to nurses if I am in hospital for anything else. Really hope they sort the diagnosis and get you on that magic spray soon. 

 

Thanks so much everyone. I had never heard of this at all until the urologist handed me the report and my wife noticed at home it said to evaluate for central diabetes insipidus. My first thought was there is a type besides type I and II (obviously I know now it's entirely different) diabetes? The MRI, symptoms, and y'all comments seem to give good evidence. I assume obviously the Endocrinologist will know about it even if he has never encountered it. I've known after a certain amount of time something was wrong. I have struggled with feeling like I wasn't taken seriously. I kept going in and not having answers. It got to the point where I wondered if somehow it was all psychological and my mind was making me experience the symptoms. I was actually looking into holistic approaches before after three months I finally got the MRI results. Until reading some of the replies on this forum *Not all, but some * I noticed the crystal clear urine comments. I really always thought that was normal. I figured I drink tons of water a day so obviously I'm super hydrated. Obviously that seems a flawed assumption now. Without him ordering that MRI for infertility issues, if this is DI, I'm not really sure I ever would've ever found out as much as I do know right now. You all seem to be doing well now with your DI after your struggles with it and that gives me hope. I have to endure a little longer until Monday and then hopefully the pieces begin to fall into place. A few questions for sure.

1. How long is a water deprevation test? I think someone said 12 hours on here? I literally get angry if my wife won't stop or let me stop to get water or some form of drinks for a two hour drive! Haha.

2. For all of you and I noticed one person who responded said they waited twenty years or more for a diagnosis, what factors led to your doctors recognizing DI? Did you all go through a constant battery of tests as well?

Thanks so much, your all so friendly and amazing! I'm glad I've found this place

It was almost 30 years for my diagnosis.  They kept thinking I was Type 2 Diabetes... Ton of the day-long glucose testing, drinking disgusting stuff, MRI's, other tests on my pituitary.  I had 2 endocrinologists that never diagnosed it over the 25+ years.  It wasn't until I found another one and was there about something else and just mentioned about how everyone tells me to drink water and that I could drink gallons a day and still be thirsty.  He stopped me and started asking questions. Which let to I think you have DI - I said no, they've tested me for Type 2 - he said this has nothing to do with blood sugar.  I left his office and cried.  Finally I knew what was wrong with me after almost 30 years... It's funny, when I got home I Googled DI and I was like, that is so me!  Very rare in deed, but at least there is a test and medication to live a normal life!!!

I was also freaked out about the deprivation test, mine lasted almost 8 hours.  It really wasn't that bad. You will make it.  I brought my tablet and caught up on lots of TV shows on Netflix. You will just have to urinate every hour and they draw blood.  I remember I bought 2 cases of water to put in my car for after the test so I could drink them on the way home - I lived about an hour away from the hospital.  Don't bother doing that, once they gave me the injection, I didn't care about water for 24 hours.  So crazy!  Can't wait to hear about how your testing will go!  Keep us updated!  Just remember it is one day and you will survive.  Just think about sleeping all night long without getting up!

I have no idea how you guys survived so long without a diagnosis. I fought and cried and saw 6 doctors within a month because I couldn’t handle it. For me, my thirst was so bad, I was in pain after 20 minutes of not drinking. 

The water deprivation test varies. There are different versions of it. One of them that they like to do is 8 hours and they let you do it over night and come to the lab first thing in the morning. You just stop drinking and go get blood work after 8 hours. And a pee test. It’s easier to do before you get meds for it. Basically I started getting meds 8/02 and at the end of like October when I finally got an endocrinologist, they made me do the test. Which meant I had to stop my meds for a day and then do the test! It was rough. I found myself swishing water in my mouth and then spitting it out.

When I read how much so many people on here suffered for so long without diagnosis I feel slightly embarrassed. I was clearly so so lucky to have an excellent GP who was determined to get to the bottom of it. I think from developing the symptoms until my diagnosis was about 6 months. Like everybody else I had never heard of DI. I had started with a headache for about six weeks and at some time during that had noticed that I needed to take a drink to bed with me and never went through the night without a few visits to the bathroom. I was 40 years old at the time. The drinking/peeing cycle continued from there and I could never seem to quench the thirst. Re the diagnostic tests, yes was initially tested for diabetes and then other things. Eventually, having exhausted everything else, the GP then gave me a test that she said would not necessarily indicate what was wrong but would simply show that there was something wrong. Everything came back as normal. She then said there was one other possible thing that she had never seen a case of, but it was the only thing left, DI. Thats when I was sent for the water deprivation. My water deprivation test lasted about 6-8 hours if memory serves me, was not allowed to drink and had to urinate into a container so they could measure output against no input. I was told it was to discount over drinking being the cause of excessive urinating, stop the input of fluids and if the output continues - bingo. They then gave the injection of the artificial hormone/desmopressin and the symptoms ended immediately. I was then allowed to have a drink, but from then on it was all back to normal. I live in England, what country to you live in Jordan?

Thanks so much for the advice! I will hang in there and think of the positives for sure!

He Leann,

I'm not sure really. I think for me it wasn't as much of a deal until this potentially started all kinds of weird symptoms. I had no idea it could be related to the heavy thirst and water. It started when I was a kid, at least to some degree. Not sure if that even be possibly related to this back then, but have always been keen on water. Now however, it just all seemed to come together and stuff. Never would I ever have thought it was abnormal otherwise. I know when my wife and I would go out to eat, I would feel somewhat embarrassed over the water or tea drinking and sometimes make a joke about it to the server. As far as now Leann, I guess I didn't possess the strength you did to advocate fully for myself. I switched GPs once, however, I didn't do a good job of challenging them on things and saying "Hey something is wrong here, I'm not sure what it is but something is wrong and I need an answer and need one soon here." I did state multiple times it was impacting my life negatively, however that didn't do the trick. I'm glad you advocated for yourself and I wish I had done the same! That's great and I need to make darn sure I present my struggles well to the Endocrinologist on Monday.

Hi Jordan, I have central diabetes insipidus resulting from a benign tumor on my anterior pituitary stalk. I'm also curious about where you live and if you will be monitored while you take the water deprivation test? You could get really dehydrated. Have they done blood tests to monitor your potassium and magnesium levels? It is dangerous to have them get low. You should ask the doctor about that.

Just looking at Wikipedia gives lots of information on central DI and the other kinds. Its only correlation to diabetes mellitus is the urine. Diabetics have sweet urine but with DI you have tasteless urine. 

 

Hi David, I typed a reply last night but my phone didn't send it apparently. I think it's great you got a diagnosis earlier than some and found a doctor who at least had heard of it and checked for it. That's awesome! Sounds like she took your concerns seriously and that is what doctors should do! At the least, she had heard of it it seems? That sounds promising about the water deprivation test and the injection to at least ease the symptoms temporarily. I hope the diagnosis is quick after this test or does it take a while to process the results? I'm from the US, from Iowa and now live in Texas. The heat here really gets to me haha. Lately, I can't really be outside for long periods or I get extremely dizzy and out of it. I don't want any illness, no one does, however, this fits and the MRI seems to support the symptoms. I really hope Monday is the beginning of a concrete answer, however, at this point I will 100% believe it when I hear it. Thanks for the reply, David!

Hi Linda, I live in the United States and I have a history of stones so I've been to the ER a few times for those. Lately, two more times for bad dizziness and kidney type pain that wasn't stone sand they couldn't figure it out. I do have low potassium, I'm not sure about magnesium? I will say, IV fluids have seemed to help when I get them for a short time. It's been really bizarre. My potassium throughout the years has been generally low, however, I have increased vegetable intake lately and eat bananas. Still, though, nothing has worked in that regard to raise the levels. I saw a nephrologist for the kidney type pain and once again, all checked out. The MRI showed no tumor on mine, just mentioned the screening for central diabetes insipidus and the Urologist said he'd never seen it before...That the posterior shows no signs of functionality and no bright spot was seen. Not sure what the correlation is to a posterior bright spot, that's above my knowledge. As far as the test, I see the Endocrinologist on Monday and I'm hopeful they will be able to help. It does all fit, I've just gone without an answer for a while to the point I am scared it will be another dead end (even with the MRI saying that (the first real clue I've ever had) and I will go back to square one. Not as long as 30 years though like someone on here and I couldn't even imagine that, it just seems like a while to me. It's obvious to me things continue to get worse and not better. . I'm afraid to sleep because after all is said and done when I wake up I ache all over as if I have the flu and then cramp really bad. All other tests have come back pretty normal, urinalysis never shows any infection, never show much of anything as far as I know as I've never been told of anything. Monday will be interesting, I've had my a1c checked numerous times and it's never been at diabetic or prediabetic levels (which is great). Thanks for the reply, Linda.

For me the diagnosis was immediate. The deprivation test was completed, they gave the injection straight away and I think waited to see if it had sorted the problem all whilst I was still at the hospital as a day patient. Once they realised it had sorted it that was that and was prescribed the nasal spray there and then. I accept that others have had different issues but I have always said if I have to have something this will do as it has been no trouble since my diagnosis. I do have periodic (every few years) brain scans to check for tumours, etc, on the Piturity Gland but so far so good. They do tell you to miss a dose of the nasal spray every so often to allow your system to flush out and prevent a fluid build up, this does mean you start the drink/pee process again but only until you retake the spray, immediate relief. 

Thanks for sharing that David and it sounds promising that you and others seem not to have issues after receiving a proper diagnosis and proper treatment! I will let everyone know what's said on Monday. I'm hopeful that things will go into motion fairly quickly here... I hope so anyways, I feel like I can't get enough water and I feel rundown. I will be back for an update Monday.

Hello

So pleased to have found this forum.

My daughter, 29 was diagnosed in April this year with DI. Symptoms improved with desmopressin (excuse my spelling). She’s gone from 1 tablet a day to 3. She collapsed at work last week, rushed to hospital and admitted to endocrinology ward.

Shes had scans, MRI. CT, umpteen blood tests, complete body scans etc

Her consultant, based on the results of the tests she’s had, is 90% certain she has LCH, Langerhans Cell Histiocytosis.

To be completely certain she had a bronchoscopy this morning and some fluid and cells taken for biopsy. She has nodules on her lungs and also bone lesions.

Shes also menopausal at 29 as a result of LCH/DI

Just wondered if anyone else is or suffered similar.

DI diagnosed first and menopause confirmed. 90% certain she has LCH which has caused DI. I know LCH is rare in adults and affects children mostly.

Any advice would be much appreciated 

Thanks

Hello!

So sorry to hear about your daughter. When I was 10 (back in 2005) I was diagnosed with Central Nervous System LCH. There was a tumor on my optic nerve. Did a biopsy and chemo and became cancer free. On my 21st birthday last year I presented with DI symptoms. And once I found a doctor to take me seriously, he knew right away, since I already had LCH, the onset of DI meant it was coming back. There were calcium deposits on my pituitary gland, but we caught it before a tumor had the chance to grow. 

In 2005 I did Vinblastine & Prednisone for my chemo. Now as an adult, I’m 10/12 rounds down of cytarabine. I go M-F once a month for treatment. Haven’t lost my hair (didnt the first time either). Just have a steroid face and some days are worse than others. My DI is controlled with 3-.2mg pills a day (every 8 hrs like clockwork) OR two doses on the nasal spray a day. 

I’m only 22 and still on active treatment for LCH. Haven’t had any issues with menopause yet.

Thank you for your detailed reply, very helpful.

From what I’ve read, LCH usually comes first, then the DI. The lesions they’ve found in her pelvis region, have hardened and,have caused a fracture in her pelvis.

Shes had a bronchoscopy, but were unable to get anything for a biopsy for a diagnosis of LCH. Next step is to do a biopsy from her pelvis. The danger being that it could make the fracture worse. She will be on crutches for 6 weeks.

As you know LCH in female adults is extremely rare, half the drs she’s seen have never heard of it and have to google it!

At least now she’s not being fobbed off with drs saying she’s a hypochondriac, it’s pyscosymatic, Health anxiety and offering her CBT.

Her endocrinologist has said he’s not experienced or knowledgeable enough to decide which course of treatment is the best for her. Either  with steroids or chemotherapy, so wants to refer her to a specialist team in London.

Will update when I know anymore

Thanks again

jane

Hello! Hopefully you find someone knowledgeable! There is a specialist team in Texas USA. At the children’s hospital. They are the ones that helped my doctor find my course of treatment this time even though I’m an adult! Dr. McClain in Texas is a leading doctor on LCH!