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My diabetes insipidus journey

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I'm a 34 years old and was diagnosed with central diabetes insipidus in Sept 07. This diagnosis followed a prolonged headache (about 2 weeks) and fever (10 days) after which I became extremely thirsty and could hardly sleep for getting up in the night to go to the bathroom!

Unfortunately the doctors have been unable to pinpoint the reason behind why I suddenly developed this rare illness, which I understand is likely to be permanent. I now take desmopressin nasal spray about twice a day. I continue to feel very tired and sleep 10 hours a night.

I'd be very interested to hear from anyone else out there who has had a similar experience so we can compare notes and exchange coping tips! I'm fine when I have my spray with me, but am dreading the day when I forget it and am forced to return to the drink - pee - drink cycle.

7 likes, 219 replies

219 Replies

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  • david27179
    david27179 Guest

    Posted

    Hi Linda, no they could not find a cause. I was concerned about the posibility of a tumor but have had two or three scans now spaced over a few years and nothing has been found. Yes I am a man and have always considered myself to be very lucky as I have not had any of the complications that you and other DI sufferers appear to have had, well so far anyway. I know I seem to keep going on about the headache but I had it for six weeks before any other symptoms (thist/peeing) started, cannot believe that there was not some link.
  • david27179
    david27179 Guest

    Posted

    Just a thought, does everyone have a medical exemption card for free prescriptions? DI is a qualifying condition for this.
    • melloannie
      melloannie david27179

      Posted

      What is a medical exemption card? Is that only in the Uk? i am in The USA and 1 generic bottle that lasts only 2 weeks is $255.49 so a monthly supply is a little over $500.00 please if u can give me the info wink)) ty annie
    • nickys1903
      nickys1903 melloannie

      Posted

      That's is very expensive abc yes it is in the UK I brkieve 😒
  • canadianhey
    canadianhey Guest

    Posted

    Hi there everyone:

    Just thought I'd share my experiences too because as we know this is a rare condition and where I live there is nobody to talk to about it... I'm very thankful for this group smile

    My own DI developed about a year after I was diagnosed with Langerhans Cell Histiocytosis (LCH). The LCH is even more rare than DI but the two will often present together. My LCH symptoms (lesions) were all in the lower body, but when I developed DI, I was told that LCH will often affect the pituitary and cause DI. There is precious little known about LCH, so it's not really understood how that disease works, and how it causes DI -- but it does. 

    So after the DI diagnosis I had an MRI (brain scan) to look for symptoms of LCH on the pituiary (lesions or tumour) but they found nothing visible. That was about six months ago. Now I'm scheduled for another MRI in two weeks. The oncologist who treats me for LCH said that sometimes a condition like DI can precede the actual visible evidence in the brain.... This next MRI will be interesting to say the least.

    So back to the DI. For me it seemed to start all at once. Almost like a switch was flicked in my brain overnight. All of a sudden I noticed that I was terribly thirsty. Drinking 20-25 litres of ICE water per day. Always needed a bottle of ice water at my side in the car, while shopping etc. Up to pee all night and like others this caused a lot of sleep deprivation and also curtailed a lot of regular activities during the day. An avid walker for excercise, I found that I couldn't go for walks unless there were publich washrooms or discreet bushes along the way. 

    My regular doctor suggested I "suck on pastilles" to alleviate the thirst. OGM, how naive some doctors can be. The word "thirst" is so misleading. It's more than regular thirst, isn't it? For me the dry mouth feeling was so strong I was afraid I'd choke. Then when I finally saw an endochrinologist, he suggested a water deprivation test, done at home for 18 hours. I began to cry in his offce. I NEVER cry, but I just felt that to go 18 hours without a drink would kill me. I felt that I'd need clinical supervistion. My tears where not taken seriously, in fact this had a negative effect. I was terribly stressed about this test but then I happened to do some other blood tests for this same doc and he said my sodium levels were so high that he didn't need me to do the full water deprivation test. We did a modified version of the test which lasted about 8 (difficult) hours and gave him the info to confirm DI.

    Now I use Desmopressin nasal spray 2-3 times per 24 hour period. I started out doing it just twice a day but found it starts to wear out after about 8-9 hours. I try to use just two doses per 24 hours unless I'm out of the house atttending a function where I don't want to spend too much time running to the toilet, in which case I'll dose twice during the day and once at night. 

    I live in Canada where this drug costs me about $100 per month, so if I can get away with two doses per day instead of three that makes me happy.

    Sorry for rambling on but I feel it's important to share, especially as there is a connection with LCH and DI which has not been mentioned here yet and might affect others DI patients.

    Cheers,

    H.

    • david27179
      david27179 canadianhey

      Posted

      Interesting to read your story and like many others here I can certainly relate to a lot of what you are saying. I guess you will have had your follow up MRI by now, I hope it all went well for you. I too find that the spray does not always last the required time so do on occasions 'top it up'. My DI seemed to start pretty quickly too, I just suddenley realised that I was having to take a drink to bed and that I was up and down to the toilet during the night. Fifteen years later and so far there does not seem to be any other problem.
    • Stefanie90589
      Stefanie90589 canadianhey

      Posted

      I know exaclty how you feel!!! You are the only person I know that had Histiocytosis (LCH) like I did 21 years ago when I was 2 years old. My pituitary was damaged because of this disease and now my body does not produce the hormone vasopressin. So now I take the synthetic hormone like everyone else on this forum called Desmopressin! It's so nice that this forum exists because I don't know anyone who has this and knows what I'm actually going through in my day to day life!

      I live in America in Minnesota actually and I was lucky I lived close to the famous hospital Mayo Clinlic. When I was 2 years old my mom noticed my symptoms of DI but she didn't know what that was just yet. I was constanly thirsty all the time and she noticed my diapers were always so soaked! My mom even told me I bit her one time because she didn't give me my milk! (sorry mom!!!). Since she had a baby before me she noticed that my thirst and excessive urinating was not normal. So she took me to the hospital and the nurses told my mom there was nothing wrong with me and that I'm a normal baby like the others. So she took me home and my symptoms were still the same so she took me back again and the nurses still said there was nothing wrong with me! By then my mom was p*ssed!! She new that there was something wrong and she demanded them to do some testing. So finally they did some tests and discovered that I had Histiocytosis. To actually confirm this they had to take a sample from my skull. I had developed lesions in my legs, arms, and skull from the LCH. Although this disease is not related at all to cancer they treated it like cancer. I had to go through chemotherapy when I was two years old to get rid of the LCH and this helped! Unfortunalty LCH had already damaged my pituitary gland to the point that vasopressin is no longer produced and I developed the DI.

      Now I'm 23 years old and I'm happy just to be alive! My life could have been ten times worse if it wasn't for my mom being so persistant when I was a baby! (Moms know best!) I mean if she discovered it later than that I probably wouldn't have gone through puberty or even survived.

      I only have DI from that experience but it really is a sucky thing to have. I always make sure I have a bottle of desmopressin everywhere! In the fridge, in my purse, at my bf's house, and at work because I dread the day I forget my medicine and I have to go several hours without it. Especially when your in class or at work and people are wondering why you are disapearing once every hour and to use the bathroom! When in doubt always keep an extra bottle somewhere smile

      I also want to mention that if you do happen to miss your desmopressin dose make sure you still drink plenty of water because if you don't you can become severely dehydrated and then it becomes much for dangerous. When I was younger my parents told me I couldn't drink anything until the desmopressin kicks in but they didn't really understand DI very well. Vasopressin helps to regulate your fluid in your body to keep everything working and stable. When you miss a dose of your desmopressin everything can become unbalanced in your body so it's important to take the medication on time and don't skip/forget to take it!

      Thanks for sharing I'm so happy I found someone else who went through what I did!

    • leannlittleton
      leannlittleton Stefanie90589

      Posted

      Hey!!

      So I had LCH when I was 10 back in 2005. Now at 21, they found symptoms of DI. I started getting symptoms in July. And then started medicine in August. The only reason I was diagnosed so quickly was because of my previous LCH diagnosis. However, since I’ve been on desmopression I have not seen a doctor due to insurance complications. I live in California. I got a MRI on 8/01 and it was clear. However it’s been 3 months since symptoms began, the doctor who diagnosed was more fascinated with me than anything because of how rare everything is. He said a tumor show grow now. (Potentially I have it rn) Since you first had LCH— then DI, did you get a tumor on your pituitary gland that needed to be removed?? My doctor also said he expects my LCH to return. Waaah. 

    • canadianhey
      canadianhey leannlittleton

      Posted

      Hi leannlittleton--

      My LCH was diagnosed first and nobody mentioned that DI can follow/accompany this, so when I got symptoms of DI it took a while for everyone to get on the same page and for me to start using desmopressin... At that time however they also started watching for tumors with regular MRIs... At first, no tumor visible but doctors said, even if not visible now, that's probably what is causing the DI, so let's keep watching. Sure enough, I think it was after the second MRI the tumor because visible... maybe 1.5 years ago(?) Since then I've had another MRI  April 2017 to monitor growth of tumor but thankfully, there was not change. This left me feeling relieved. However, last week I had two "episodes" which could relate to change in tumor. One was tremors in my right hand, and then a few days later flashing lights and weirdness in my right eye. So I'm being fast-tracked for the next MRI, and we shall see.... So this tells you my experience to date with the tumor, but so far, no need for removal. Fingers firmly crossed here ... Best of luck to you, glad you are on the desmo, it's a life-changer.

       

  • lilyfb
    lilyfb Guest

    Posted

    Please can someone help me. I've got my self in such a pickle and don't know what to do. I've been having extreme thirst and weeing @every hour (up 4 times a night) since about July last year. Went to the drs in Sept. They've been doing tests since then. I had a blood osmolality which came back ok. I did the 24 hour collection which came back ok (despite bring 6 litres in 24 hours). Last week I had the urine osmolality test and it was abnormal. So had it re done this week and came back very low. 130, when normal is 300 to 900.

    My gp has referred me to endocrinology who rang today, and despite gp saying it was urgent, 1st available apt is 10 April, nearly 7 weeks away.

    I've been on Google 24/7 and my worry is, I had breast cancer 4.5 years ago, and DI can be caused my breast cancer mets on the pituitary gland. Does any one know anything about this? And what are the other reasons for it happening? I've got myself all worked up thinking my breast cancer has spread, and don't know how I can make it to April without knowing xxxx

    • canadianhey
      canadianhey lilyfb

      Posted

      While I'm not qualified to advise on your specific health issues, I can tell you what has worked for me in the past for getting into appointments that are booked too far into the future. Believe me, I really do feel for you on this issue. Just recently I was referred to a specialist and the first appointment they could give me was about six months away... even though it was not my first time seeing this doctor. Like you, I felt that the wait would be devasting to my condition. I've used the following technique in the past and it seems to work if you are able to overcome any "shyness" at the prospect. What I do is that I walk into the office and very nicely explain my situation, I tell them I am in extreme discomfort etc, and with full respect ask to be put on a waiting list for when they have cancellations. Luckily in my situation I live close enough to the medical building so I can get there on fairly short notice. Also, since I work from home I can be a little more flexible than some people. Reason I go in there in person to ask this is that I like to make eye contact with the secretary etc. I feel this has more impact than just phoning. It lets them know how serious I am about trying to get medical attention sooner, rather than later. In most cases where I've done this it has really worked to my advantage -- sometimes saving me months of waiting. 

      I know it can be time consuming to personally travel to and walk into a doctor's office just to have a one minute conversation with the secretary, but if it saves you weeks of waiting and agony, this is so worth it. Hope this helps smile

    • lilyfb
      lilyfb canadianhey

      Posted

      Thank you. All worth a try. I cannot live with this worry for nearly 7 weeks xxx
    • melloannie
      melloannie canadianhey

      Posted

      I can tell u exactly what u can do ... walk in the emergency room complaining of of head pain and other symptoms they will check u right there probably admit you and they CALL THE SPECIALIST IN ASAP.. i myself had to do something similar 2x already and it worked. .. will keep you in my prayers. .. annie
    • nickys1903
      nickys1903 lilyfb

      Posted

      Hi I hope you are sorted if you are struggling as previous post said go to a and e or out of hours due to lack of knowledge of DI I am sure they would get an endocrine specialist to review you but be persistent. Let us know how you get on. Also pituatory tumors do tend to be benign but you stil need IT all sitting bless you. Nicky
    • david27179
      david27179 melloannie

      Posted

      Sadly this probably wont work here in the UK, they will probably tell you to go home and take a paracetamol!
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