Please help

Diabetes Insipidus
#1

Hi,

I have a few questions about DI. I live in Japan and have just been
told by my doctor (in Japanese unfortunatly) that I may have DI
because I`ve been dehydrated and cannot retain water.

Ive been like this for a week now I have headaches that come and go (which is unusual for me) and I constantly feel thirsty but no matter how much I drink it only goes away periodicaly and so Im
uncomfortable most of the day.

I thought and still think that I have bad de-hydration due to using my
air-conditioner as a heater for nearly 2 weeks while i had friends
staying, drinking a bit too much green tea, and bathing coupled with
the fact that I skateboard for at least an hour everyday.

However my doctor is adament that it is not de-hydration and is now
testing for DI after a blood sugar test came back negative.
Upon going to the hospital all my tests came back okay (i guess they
were for nutrients etc, I have no idea though) however, the test for
DI wont be back untill friday next week which is really disapointing as id like to either rule out DI or move on to other causes ASAP.

Also the doctor at the hospital told me that I should limit my water
drinking to 1500mls per day, which I did for one day and although my
urine output decreased I ended up with a headache worse than what i`ve
already been having, and have gone back to drinking more water because
it feels right.

Is this sound advice that i`ve been given?

I`d really appreciate any feedback on my situation!! Please tell me if
you need more infomation background etc…

Thanks in advance

Gerard

#2

Hi,
Don’t limit your water drinking! My doctor always tells me to drink as much as I want. Your body tells you when you’re thirsty, so listen to your body.

good luck
Liesbeth

#3

the only way that I know of to diagnose this is with a water deprivation test, no blood test will show this. then you will know if you have DI, and if so, which type. don’t limit your water, you can really do yourself harm if you have DI and don’t hydrate.

if you have it, you cannot treat it without knowing which type you have.

good luck

#4

You should ask your doctor to perform a water deprivation test on you. You’ll find out right then and there if you have DI. When I was first diagnosed with DI and they did that water deprivation test (it took about 8 hours), I felt like I was going to die. I had lost a total of 10 lbs during the test and I was still using the bathrooms every 5 to 10 mins. I was sooooo weak, my mouth was dry, my head was hurting, the nurses had to help me get to the bathroom. Yeah, keep drinking if you’re thirsty, don’t drink less, but drink when you need. But really, get with your doctor and ask to do that test, you’ll know then.

To: anbsolutions@hotmail.com
From: diabetes-insipidus-cpt8243@lists.careplace.com
Subject: [diabetes-insipidus] Please help
Date: Thu, 27 Mar 2008 08:30:02 -0400

#5

Nini, sorry you had such a hard time with the test. I was fine during mine, and went to work after I got out of the hospital.

I have CDI, what type do you have? I wonder if the test is different with different types. also, my doctor kept me overnight, did you stay overnight?

#6

I don’t think you have been given very good advice.

If he thinks you may have DI, there is no way you should be limiting your water intake. DI is not lots of peeing as a result of too much drinking, it’s raging thirst due to your body’s inability to regulate the hormone that tells your body how much to retain. It’s very much a chicken and egg thing, though, unfortunately, so the only way to truly know, is to stop one (the drinking) and see what happens to the other. (i.e. a fluid deprivation test)

This MUST be done under controlled circumstances. Don’t let anyone tell you to not drink all night then come in for a test in the morning.

If you have DI, and provided you’re drinking enough to replace what you’re losing, the usual tests SHOULD be normal. i.e. a dehydrated person would show high sodium levels, but if you’re drinking enough, they would be normal or just above.

There is an easier test that can be done before the fluid deprivation one. A simultaneous blood/urine osmolality should show dilute urine with normal(or slightly above normal) blood osmolality. My endocrinologist is prepared to diagnose DI based on this alone.

I’m not sure what test there is for DI that takes that long to come back, unless it’s for vasopressin (the hormone involved). It’s a pretty pointless test to do, as anyone who’s drinking a lot (unnecessarily) automatically suppresses their vasopressin, as your body NEEDS to get rid of the extra fluid.

If you wee less when you drink less, then you definitely don’t have COMPLETE DI, but you may have partial, which can be intermittent.

It would be worth your while having a look through the DI foundation website.

Maureen.

gerard diabetes-insipidus-cpt8243@lists.careplace.com wrote:

#7

Thanks for taking the time to reply everyone,

I really don`t know the details of the tests just that they took bloods and a urine sample and mentioned something about my hormone levels and perhaps an MRI scan if the test comes back positive, or at least that is how I understood it.
Perhaps that is the test that you mentioned Maureen. If so should and assumeing the test comes back positive I assume I should request the water deprivation test to confirm in-case thay misdiagnoise me with DI?

Theyre being quite vauge about the whole thing but that is too be expected over here, unfortunatly it doesnt help me at all. Im working my way through lots of infomation that ive found on the net to try and piece together what they maybe thinking and then trying match it up with how i`m feeling.

In Regards too the water, thats a bit of a worry that he told me that because theyre definatly considering DI or at least want to rule it out. All the more reason to try and edcuate myself i guess. Thank-you Maureen, yes I have looked through the DI foundation`s site and have found some useful and if not worring infomation.

Does anybody know of or experienced dry skin in the area where you shave ie around the mouth due to DI?
Also in regards to de-hydration does anbody know if you can still pass water alot if youre de-hydrated because from what I can gather you dont urinate often if you are, is this true?
I`m realy desperatly tring to rule this out (even though the doctor already has i need to be convinced as a week is a long time to wait feeling like this).

Thanks again for your all your help, much appreciated!

Gerard

#8

GRRRR

I had a long email written to you & my email provider said I didn’t pass the verification test with those bizarre scrawly letters & numbers & deleted it!!

Grrr again.

Not knowing what the tests are it’s a bit tricky to answer. All I can say is the doctor’s comments about dehydration, DI and limiting your drinking are weird. It’s like saying you’ve got a headache, but don’t take paracetamol because the pain will go away.

Until you know what is making you thirsty you MUST just drink as much as you feel like. If you do have any form of DI, it means you are losing ‘free’ water inappropriately. i.e. the peeing is causing the thirst, not the other way round.

In a nutshell: if a healthy person drank a litre of water an hour, they would have dilute urine, ‘dilute’ blood, and very low vasopressin (i.e. the body does not need to retain much of the water so the homone is NATURALLY suppressed).

Alternatively, if a healthy person didn’t drink for a day, they would have concentrated urine, ‘concentrated’ blood (i.e. dehydrated) and high levels of vasopressin, as the body tries to retain as much ‘free’ water as it can without retaining toxins.

Someone with DI has dilute urine, which continues even when their blood is concentrated as their body does not retain the appropriate amount of ‘free’ water - thus they are constantly thirsty.

Any chance of posting the urine & blood test results?

If they suspect DI, they automatically do an MRI, more to rule out certain causes rather than to find the cause. Most DI is ‘idiopathic’ - no known cause, but it can also be caused by pituitary tumors, which is what they would be checking for.

Maureen.

gerard diabetes-insipidus-cpt8243@lists.careplace.com wrote: