1. Community
  2. Diabetes and hormone problems
  3. Diabetes

diabetes insipidus

Posted , 40 users are following.

nickys1903
nickys1903

Hi All

I am now 39 years old and at the age of 36 was diagnosed with Diabetes insipidus. I am employed as a diabetes specialist nurse and had never even heard of diabetes insipidus and felt so very silly. I felt exhausted at the time as was drinking approx 6-8 liters a day and passing the same in urine. I was constantly on the toliet day and night hence I was getting no sleep and trying to continue to go to work.

I visited my GP whom was at a loss and arranged routine blood test ie glucose levels at this time it was a colleague whom mentioned diabetes insipidus and when I read more about this it fitted exactly how I was feeling. I returned to my GP whom arranged the appropriate tests and within 24 hours I was admitted to hospital.

In hospital my condition deteriated and we remain unsure why this was and no cause has ever been established for my diabetes insipidus. The results from my MRI scan did indicate substantial inflammation of the pituary gland but as to why is a loss this has since subsided without treatment for this. I have had a variety of tests and continue to be monitored very carefully and can not fault the care I recieved.

I know it is a very rare condition and would live to hear from anyone whom also has diabetes insipidus and there experiences. I was initally prescribed Desmopressin spray twicw daily but this remianed difficult to control my hydration levels and over a year ago my cosultant changed me to the tablets and these have completley changed my life for the better and I believe my diabetes insipidus is far better controlled from these. However GPs do remain reluctant to prescribe these due to cost although my GP has been excellent.

4 likes, 60 replies

60 Replies

Next
  • jo118
    jo118

    Edited

    Hi

    I have had DI since the age of 19years old I am now 64 years old. My first signs and symptoms were the same as we have all experienced on here with excess thrist, passing large volumes of urine, and weight loss not to mention the total lack of energy due to all this. But this was in the 1960s and the condition was not really heard of and my GP took three months of doing blood tests, telling my parents that it was stress related and that he could not find anything wrong with me, basically he assurred my parents thay I was just an hysterical teenager. Ond day at work I collapsed and was waken to hospital, still undiagnosed, but thankfully a doctor who hardley had any English speaking skills, knew what was wrong with me. I commenced injections of a drug called "Pitressin Tannate in oil" this was a thick nasty injection and had to be given intramuscually. I still have masses of lumps and scars on my legs and bottom even today. Six years after using the nasty injections I read myself of a nasal spray called Desmopressin that would do the job or controlling DI so off I went to my GP who said NO this is not for you its for children who "wet the bed". I persisted and begged what had I got to lose by trying it my body was sore from the big needles often needing two a day. BINGO it worked but the only down side to this was that it had to be kept in a fridge and I needed to keep it on me incase I needed to top up. Now the same nasal spray now called Desmospray is so handy and can be kept in my bag I also interchange these with Desmotabs. But the worry comes with age, it states on these medication "NOT TO BE USED AFTER THE AGE OF 65" I have no choice, but finding that my sodium levels are often so low that I feel very unwell, this never used to happen. A friend suggested I top up my electrolyte's by using those schatets of Hydration crystals that one takes when you have D & V don't know if this will work. But I have been reading that theyare working on Stem cell therapy to repair damaged Piturity glands in the USA not sure if this will be available for DI patients, would like to know if anyone else has any information on Stem Cell repair treatments?

    Thanks for taking time to read this.

    • Ducado
      Ducado jo118

      Posted

      I am nearly 72.  I have had Diabetes Insipidus for nearly 40 Years.  When I was diagnosed, I was given 18 Months to live.  I still take DDAVP which controls it well.  Where is this not to be taken over 65years?
    • Ducado
      Ducado jo118

      Posted

      I made a mistake it is over 45 Years now
    • lindalee123
      lindalee123 jo118

      Posted

      Hi jo118

      do you mind me asking have you had any children since having diabetes insipidus????? I'm 13 weeks pregnant and having awful symptoms in particular migraines all day ever day 

    • meagan58879
      meagan58879 lindalee123

      Posted

      I'm a genetic carrier which I did not know until I had my first boy. If you carry a genetic form of ndi the odds of a boy having ndi is 50/50. If a girl she will most likely be a carrier, but according to our doctor's do not receive the genetic mutation as bad or as often as boys. Signs during pregnancy were (self) very sick, gestational diabetes, fatty liver and extreme uncalled for dehydration. In fetus there were immediate signs of excess fluid in the kidneys. Pre-term labor at 28 wks, 31 weeks and born at 35. First signs upon birth was very rapid sudden weight loss in baby, as much as 2 pounds in first day of life. My son would become very red in slight heat. He was very colic. The biggest sign was after breastfeeding and draining me he was still "hungry" which now know was thirst. he would drink 8oz of formula from infancy every hr to two hrs and never seemed satisfied. At 4 mo the sodium built to such a high level 188) that he had seizures. I was initially accused of starving my child before I had to refuse treatment and forced transfer to a children's facility because I knew I was definitelu not starving my child, if anything he ate obscene amounts for his age. This change in hospitals made the world of difference. I requested a central line be put into an artery because drawing blood with high sodium is nearly impossible and he was being tortured as they stuck him over and over. This made routine blood checks much easier and lead to the diagnosis after they realized his urin was in large quantity and clear for his sodium levels. He was a big projectile vomit or. We now know this is because he was trying to Expell excess salt from the body.a according to our doctor this is a trait of all kids with ndi.

      Don't know any other way to be a mom, so i wanted another child. Second pregnancy was the same. It was a boy so we knew our shot was 50/50. Same exact pregnancy. Gestational diabetes. Excess fluid in kidneys. Extreme contractions due to dehydration that I could not keep up with. Fatty liver. Very sick. Hospitalized for dehydration repeatedly. This time pre-term labor came abruptly at 24 weeks. Sadly, I lost him. I haven't had the opportunity to talk to other mothers that have had children with NDI. There are several warning signs that doctors can very easily dismiss as normal baby problems if they are not familiar with NDI (and in my experience here in new England, not many drs know what it is) so in my experience find yourself a child nephrologist and have them see the baby through first few months of life. Do not depend on a pediatrician because this is not a common issue.usually most children's bodies show definite clear signs by 4 mo or with first exposure to food.

    • ashleen1212
      ashleen1212 meagan58879

      Posted

      Hi can u give me more info about diabetes insiptous my daughter aged 12 jus diagnosed please thanks 
    • eleanor21085
      eleanor21085 ashleen1212

      Edited

      Hi I hope this helps anyone new to this disease. I am a 42 year old female and have had a partial form of diabetes insipidus now for 8 years, ever since the birth of my son. I drink approx. 5 litres of water a day without medication.

      The best way to start taking medication is take a small amount and gradually increase it to avoid fluid overload.

      I initially started on 2 tablets a day (0.1mg of desmopressin) and worked my way up to 3 tablets. You should be aiming to drink about 2 litres of water a day while on the medication.

      Its a good idea to miss a dose once a week or delay taking a dose to avoid too much fluid retention especially when you start taking the meds. Also a really good idea to weigh yourself every day to avoid too much water retention. I find I sleep better if I miss a dose. It took me a good 6 months to get back on my feet but it is manageable. And it is possible to have a good life with this disease

      Best wishes

      Ellie

  • paul78055
    paul78055 nickys1903

    Posted

    I have it! I damaged my pitiary gland in a fall, I also broke my neck and i am paralysed with an indwelling catheter, hence i took myself off desmopressin spray and just drank loads, but now i am doing intermittent catheter and i am passing far more than i drink, about 1litre, as i have only just done the change from indwelling to intermittent it has not bothered me but i can see that weight is coming off sad. The nasal desmopressin stop me passing urine altogether and then when it wears off i pass loads? Is it desmomelt you take?
  • sally05249
    sally05249 nickys1903

    Posted

    How were you diagnosed ? i have had a blood test for kidney function levels and they were fine but the drinking toilet thing is driving me mad. I only have to get up 1 or two times in the night as I am so tired I sleep very heavily. 
    • meagan58879
      meagan58879 sally05249

      Posted

      They generally diagnose ndi by monitoring urin output levels along with checking your sodium levels as part of the metBolic panel in your blood. The urin always looks almost clear in high volume as if fully hydrated but the blood work reflects high sodium levels which means you are dehydrated. To diagnose whether you have central diabetes Insipidus (which is when the pituitary gland does not create the adh hormone) they start usually by administering vasopressin which is a synthetic form of the hormone. If you have this form you will have immediate results of hydration. If there is not an immediate response then the problem is caused by the kidneys not having the ability to respond to the hormone caused by a defect within the kidneys (which makes it nephrogenic) This is much harder to balance especially in young children. This is treated by using diuretics such as amiliroid, diuril and older times hydrochlorothiazide. In severe cases indomethacin may be used to decrease polyurea (excessive urination) which does this by damaging the kidneys. Please avoid indomethacin for your own sake. This drug causes kidney failure which we are now dealing with my boy.
  • canadianhey
    canadianhey nickys1903

    Posted

    Hi - in case this helps I just want to say that I too have Diabetes Insipidus (DI) and it is related to a rare condition which I also have: Langerhans Cell Histiocytosis or LCH. The DI came about two years after the LCH started but it took a really long time to be diagnosed for both. I was drinking about 20 litres of water per day/night, going on very little sleep and having a terrible time. The doctors were very slow to respond and take my symptoms seriously. There was immediate relief when I began taking Desmopressin through the nose, twice a day but that is no longer really sufficient. I am constantly monitorerd. The LCH can affect the pituitary gland in some cases and this is what happened with me sad I share this in case it helps you get closer to finding or elliminating a reason for your symptoms. Having doctors who do not understand these rare conditions can be very frustrating. I wish you the best of care and ongoing comfort. Cheers, H. 
    • gemma_02432
      gemma_02432 canadianhey

      Posted

      Hi. I have just recently been diagnosed with LCH. Has taken over a year to get a diagnosis but am now awaiting further mri scans before they deciding on best course of treatment. am abit overwhelmed at the moment. How have you found things? With the condition being so rare... Be nice to talk to someone who going through similar xx
  • Ducado
    Ducado nickys1903

    Posted

    I have had Diabetes Insipidus now for close to 40 Years and take the DDAVP 2 or 3 times Daily and it controls it. There is no cure, I am told.
  • lindalee123
    lindalee123 nickys1903

    Posted

    Hi Nicky 

    I am  35 years old and I have diabities insipidus,I as diagnosed at 8 years old..I'm am 13 weeks pregnant and suffering terribly with migraines fatigue have you come across anybody with diabities insipidus pregnant???? Maybe we could swap email addresses then we can exchange experiences love to hear from you.

    • linda28225
      linda28225 lindalee123

      Posted

      Hello, I didn't see your note before. How are you doing? 

      I am 58, live in the US, and I've had hypopituitarism - no pituitary function - and diabetes insipidus for 26 years. I've had 2 children since having diabetes insipidus and I didn't have any problems. 

       

    • ashleen1212
      ashleen1212 lindalee123

      Posted

      Hi can u reply back to me please daughter aged 12 jus diagnosed diabetes insiptous n is on depropressing but her periods hav stopped.. scared 😟 thanks 

    • linda28225
      linda28225 ashleen1212

      Posted

      What caused the diabetes Insipidus or what does the doctor think caused it?
    • ashleen1212
      ashleen1212 linda28225

      Posted

      Hi linda long story lol drinking so much water and goin to toilet during the night - lack of sleep.. but thankfully there’s no side effects r other problems she went thru 33 blood tests 2 mri scans lumber puncture so everything is ruled out so hopefully she grows out of it. I don’t know much about it to tell u the truth so I came on here to get more information but a lot of people hav worst problems sad so goin to see the main woman who specialises on this condition in 2 weeks il no more. Thanks 
    • ashleen1212
      ashleen1212

      Posted

      It can run in the family miss generation. A hit or a fall.. major accidents it can cause this I think lol new to this 
    • maddien19
      maddien19 ashleen1212

      Posted

      My name is Madeline! I am 18 years old and have grown up with severe diabetes insupidus. It definitely changes the daily routine but is completely manageable. I know it’s scary but your daughter will be fine! 

    • sergejs99659
      sergejs99659 maddien19

      Posted

      Hi all . I am Roman, I was diagnosed at the age of 3, I was cured of this disease by the age of 22, I started therapy at 18, and by the age of 22 I completely eliminated the disease in myself. I'm 35 now, I had a checkup in New York the other day, I'm completely healthy with the exception of minor kidney problems (drinking a lot of water did not go unnoticed) But overall everything is fine.

      Just like me, my sister had the same disease, only she did not undergo treatment (the disease was also detected in her sister at the age of 3). My sister is 3 years younger than me and now she is 32 years old. At the moment she has a partial loss of vision, huge problems with her kidneys and the health of the body, she did not do therapy, as I used and uses drugs for diabetes insipidus. all drugs that are intended for this disease have caused irreparable damage to the health of the body

    • Teshy74
      Teshy74 sergejs99659

      Posted

      Hi Roman. I have only just joined the forum. i read your post. Could you please clarify what you mean by 'i started therapy at 18'? Does that mean you saw a Counsellor / Therapist / Psychologist type person and healed yourself that way rather than using drugs/medicines? Thanks for your help. Philip

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.