My diabetes insipidus journey

Hi Diana -- you asked a good question and I'm going to give you the only answer I know, which is how this applied in my specific case. I had DI

Hi Diana -- you asked a good question and I'm going to give you the only answer I know, which is how this applied in my specific case. I had DI for about two years before it became visible on the MRI and heres why: in my case (please hear me that this may NOT be your situation) the DI is part of a greater condition called Langerhans Cell Histiocytosis or LCH. When I was first diagnosed with LCH (via a skin biopsy) the doctors told me that "usually" there is a corresponding problem that develops in the pituitary gland. Soon after this I developed the symptoms of DI and was diagnosed with DI. At that time they told me that "often we get symptoms before the condition is visible on an MRI, so we will watch with regular MRIs to see if it becomes visible." Sure enough, about a year later when I went for my second or third MRI the "thickening of the pituitary stalk" became visitble and measurable. Now we are watching (with regular MRIs to see how much and how fast the thickening grows and whether or how soon it will create problems for any other hormones.

So I'm not a doctor, but I would guess that whatever is causing your DI may be active near the pituitary but in the early stages can occur without being actually visible or measurable. Please do not freak out and assume anything based on my answer because your case may or may not be LCH-related. I really don't want you to assume you have LCH, I just want you to know how the DI can be present without being visible. Hope this helps.

CDI can be caused by medication (such as lithium and there are others), head trauma without physical obstruction or with, diseases, obstruction of the pituitary gland through genetic mutation or tumor. In children if the MRI is clean it can also mean nephrogenic rather than central ( kidneys dont respond to the hormone instead of the pituitary not releasing it.) I say in children because a child would not survive to adulthood with NDI  without treatment.

Everyone here can feel ur problem...we have faced same conditions on daily basis. But after properly diagnosed n with right medicine, life is easy now. Its been 11 months now facing DI

That doesn't sound good at all. What are you using for medication the pills or the nasal spray that's the DDAVP. Have you been diagnosedwith DI. It sure sounds that's what you have is DI tho. If the medication is working you shouldn't have to drink that much water in a day. And is it the same a night. But you better talk to your doctor and he needs get on board and tell these professors what's happening because that's not fair, or give you a letter stating what you have. Let them go a few days without water or going to the bathroom, and then they will have an idea what you're going through. And yes have said many times I'm glad I have DI and not type 1 diabetes. That if u have your DI is under control,even tho we all have some challenges. But get ahold of a decent Doctor that understands it,and I know that's a challenge,to find one,but then they can help you with your medication and give the letter to explain to others what's going on.But after 48 years with mine I understand your struggles. Hopefully that's some help.

God Bless Rod

Yes, I'm diagnosed with central DI, even had an MRI etc, and I do use Minirin, but queues to the doctor's office are almost 5 months.. I got an appointment to January, and I dont have anymore prescriptions.. It's a huge problem in my country, you have to wait 5-6 months or even more to get to the doctor, even when you have chronic disease... (+ I'm currently breastfeeding, I don't even know if it's ok to take Minirin). 

And... yeah, I know I sound like an idiot, but even if I have this disease I don't completely.... understand it? I have so many questions and almost like 0 answers. Sometimes it's ok, even if I don't take DDAVP, I drink only 5 litres a day, and suddenly the next day I'm thirsty all day long, no matter how much I drink and even medications don't help (I'm allowed to take max 2x60micrograms a day, because of breastfeeding. None of my doctors didn't know how much is safe and what doses will harm my baby). I've even thought that maybe I was misdiagnosed and it's something else, even though the blood and urine tests showed DI. There's only one type of medicine for DI in my country, those "melting" tablets that go under your tongue.. no "normal" tablets or nasal spray, and 2 doses available (60mg and 120mg). Idk, maybe something else would be more effective? Any experiences with different types of medications would be helpful. 

Hi Bella! I too am 57 and also in Canada! Which part of Canada are you in? (I am in Victoria, BC) ...

It's so great to hear from other people who know what we are talking about when we say "DI". I feel my symptoms are not as severe as yours, though I am desmopressin-dependant since my diagnosis 2  years ago. My DI is related to LCH (Langerhans Cell Histiocytosis, a type of cancer that attacks the pituitary stem in some cases but not all.) I was really interested to hear what you said about a rare disease group that will pay or help with cost of meds. (??) 

My meds are in the thousands per year and my income is very low, so I'd love to know more.

I was so sorry to read about your mother But it sounds like from a lifetime of dealing with this you know well how to manage your illness. I'm glad you found this little place online. Are you also on Facebook? There is a group there too... Best wishes, H.

Hi it's Rod I have had my DI for 48 years got it from a blow on the back of my head when I was 11. I also live in Canada just outside of RedDeer Alberta and would also like to know about this group that possibly helps with meds.

I use the pills 0.2 mg and the spray. But I have to be laying on my back in bed without talking to dissolve slowly under my tongue then they work up to 24 hours otherwise it they only last about four hours and then even seem to only half kick in, that's if I just swallow them. So I do that at bedtime and if the pill doesn't last till then i use a small shot of nasal spray DDAVP.

I Would like to try the melts, but Blue Cross does not cover them,and very costly. So would like to hear some feedback hopefully this helps someone with their meds.

Yes there is a rare disease foundation and they just had a fund raiser here in Calgary. You can look them up on line.just Google rare disease foundation it will come up. I am on aish and my meds are paid for by them. My melts however my doctor had to send in a letter to get those covered.  But my endocrinologist gave them to me for free until they were covered which took about a year. He gets samples from the pharmaceutical reps and he would get extra for me. I have been dealing with this a very long time but I'm still not under control my endocrinologist has never had to deal with anyone with both type 2 and insipidus before me I am his first so I'm kind of a guinea pig for him. Lol. It is my hypothalamus that doesn't work and I don't produce alot of hormones not just the vassopressin. The vassopressin tells your adrenal glands to concentrate urine. But I don't produce melatonin or serotonin and my body doesn't know the difference between night and day known as the circadian cycles. My body doesn't adjust to the changes in the barometric pressure changes or weather changes so I get migraines with every weather change..If anyone has anymore questions I may be able to help or I will try anyway. I live in Calgary by the way,and it was my aunt is lost to insipidus not my mother but I have since lost my mother and father but not to this disease. I am1 of 6 children but I am the only one who inherited insipidus. Thanks. Bella

 

I think it would be great if people asked me questions because I have been through so much I could sit here and write a book about this disease so if anyone has any questions I will do my best to answer them. Or if you have questions about things you have dealt with to see if I have also dealt with the same problems I can answer those as well. But remember I am dealing with several diseases at once not just the two types of diabetes. But these two have been the hardest to control and all the problems that come from both of them as well. Thank you Bella

Wow.. I've never heard of anyone who has died because of DI... I honestly didn't believe it can get that bad... Sorry about your aunt. How did this get that bad?  

Hi my aunt was a very rare case even more rare than I am with inherited central diabetes insipidus and type 2 diabetes as well. She had diabetes insipidus central inherited form as well as type 1 diabetes. You also have to remember this would have been the mid 30's when she was diagnosed at the age of 5. I was told when I got diagnosed that my aunt was the first patient to be diagnosed with both and they lived in Montreal and the doctor who diagnosed her did an article about her case in medical journals. The meds back then didn't work great either. So this means my grandmother was a carrier as well as my mother. It is always passed down from the mother never a father. It is very hard to control both of these diseases together we tend to have very high sugars or very low sugars it is very hard to get out sugars into the normal ranges. It is also very hard to get our fluids in the right range as well. My aunt died from a very low sugar because she didn't drink enough that day at work which affected her sugars and she went into a coma at the age of 31 and died at 32. The two diseases together are very rare to see. I can't even tell you how many there are of us but my doctor told me he thinks it is less than 10 worldwide. So we are pretty much giunea pigs for the doctors to keep trying different things on all the time. They really don't know yet how to treat us yet. Hope this explanation helps you somewhat anyway. Thanks Bella Blue