YES I WOULD LIKE TO KNOW WHO IS GIVING THE INFORMATION ON DI TO ALL OF US?? ALSO DO YOU LOSE WEIGHT AND PLUS BEING ON THE MEDICINE THE REST OF MY LIFE?? I WEAR A BRACELET THAT STATES I HAVE DI??
NEED TO CHECK WITH DOCTOR BEFORE GOING TO THE DENTIST FOR DENTAL WORK TRUE OR FALSE ON THIS??
ALSO HOW MUCH FLUID RESTRICTION ARE THE REST OF YOU ON, I AM ON 700 CC A DAY AND THAT IS VERY HARD FOR ME TO DIGEST RIGHT NOW.
NO THEY HAVE BRACELETS OUT THERE FOR DI YOU NEED ONE IN CASE SOMETHING HAPPENS AND CANNOT GIVE YOU ALOT OF IV’S REALLY. I HAD MINE MADE UP AND SAYS DIABETES INSIPIDUS RIGHT ON THE BRACELET.
YOU ALL SHOULD HAVE A MEDI ALERT BRACELET WORN, VERY SERIOUS DISEASE I READ ALL THE TIME ABOUT IT. MY BROTHER AND 2 SISTER IN LAWS ARE RN AND SAID GET THE BRACELET TO PROTECT ME, WHO WILL KNOW IF YOU DO HAVE DI IF YOU CANNOT SPEAK?? THINK ABOUT IT OK?
SO HOW MANY ARE NOT ON A FLUID RESTRICTION PLEASE RESPOND TO ME OK?? I AM SO CURIOUS ABOUT THIS?? THE DOCS SAID I HAD TO BE?? WELL BYE FOR NOW AWAIT THE ANSWERS OK?
KAT
Kat, I think that if you meds are working for the DI then you shouldn’t be that thirsty. That seems to me you might need a increased dose. The only time I don’t feel dying thirst is when my meds are working and I’m not hormonal. I definatly notice a difference during that time! I feel bad for you that you feel that thirsty! I hope you feel better soon! Kim
I get information about DI from my endocrinologist. I did not lose weight and I am not restricted in my drinking. I drink about 5 liters a day.
I don’t think there are bracelets that states you have DI, maybe you confuse DI with Diabetes Mellitus.
I see DI just as an inconvience.
I’m aware of the bracelets but I’m worried that even if they see it the first thing anyone see’s on it is the word diabetes and worry they just take that word and run with it! I’ve ben told by my endo to get one especially if I ever go out of the US.Also, leslies, I do know that DI is inconveinient but it is much more than that! Just last week I had a horrible health crisis! I had stubbornly denied signs of a heart attack and finally I did go to a great Heart Institute and I am high risk with my age 47 and having typr 2 diabetes and PCOS and family history …oh yeah-mid-section obesity! They ran many tests and finally did blood work and a cardiac cath and the blood work showed I was dangerously low on potassium levels which I know has to be from the DI. I’m thankful that it wasn;t a heart attack however I could have died from the level that my potassium had fallen to. They gave me IV potassium and some pills. I’ve taken a few days to recoup and now I need to contact my endo and go from there. The point being DI is something that can get us into big trouble if we are not careful. Thanks Kim
HI KIM,
WELL WE ALL CAN GET INTO TROUBLE WITH DI. I AM ON THE NASAL SPRAY OF DDAVP AND JUST HAD THE FIRST DOSE LAST NIGHT AND I AM SO THIRSTY AND PLUS I WENT TOTHE BATHROOM DURING THE NIGHT AS WELL. I AM SO UPSET IF I AM GOING TO GAIN MORE WEIGHT AND TRYING TO GET WEIGHT OFF INSTEAD. I AM NOT MIXED UP WITH DIABETES MELLUTUS 2 AT ALL.
I HAVE DI AND THE ENDRO TOLD US BOTH MY HUSBAND AS WELL. I WEAR THE BRACELET ALL THE TIME, INCASE SOMEONE TRIES TO GIVE ME IV AND TOO MUCH FLUID WOULD KILL ME, HEAR ME KIM KILL US ALL.
I get my info from my endocrinologist. I am his only patient with this disease. I have a bracelet, my endo told me to get one. I had it engraved on the back. you would be surprised at how much they can write on it.
“Central Diabetes Insipidus - Pituitary Disorder - Treated with DDAVP”
I wanted to make sure no one was confused.
When I was diagnosed with DI, I got no information what so ever from my doctor. All I know about DI, I learned on the internet.
It is important to limit fluid when you have DI to avoid low sodium levels and water intoxication.
You just started DDAVP last night and it may be that you need to give it a little bit of time before it starts working.
Kat, I think you should increase your DDAVP. It works within 30 minutes. Now you’re thirsty all day and your doctor told you not to drink more than 700 cc, that’s horrible. My doctor tells me to drink when I am thirsty! Otherwise you get dehydrated! I think you should call him and tell him you’re so thirsty, that’s not ok. Don’t take more DDAVP without talking to your doctor. Why should too much fluid kill you? I don’t understand? Too less fluid will kill you!
Kimbo, for me DI is just inconvenient. Once a year I go to my doctor, he checks my blood, than I get a phonecall everything is ok. I still drink a lot more than “normal” people, but when I take more Minrintablets I get terrible headaches. So I don’t take more and drink more, but that’s ok.
Inregards to Kats MD saying to watch her fluid intake…if you are taking your meds you can become severly over hydrated if you continue to drink with the gusto that we DI’s can drink! It can be very dangerous! That is why it is important to get the med’s adjusted to help with the thirst control.Kim
I am not on fluid restriction. I was told to drink when I am thirsty because that means the body is dehydrating. I’ve never been told to check with the doctor before seeing the dentist. I’ve done my dental work many times ever since I got CDI and I was fine.
Through my experience, stress can ‘tear off’ my ddavp. When I have work pressure, or travel for a long journey, or worried of something, the ddavp will ‘tear off’. A dose should last me for 8 hours but when I am sick or stress, I’ll be peeing and drinking even though I’ve taken a shot 3-4 hrs before.
Perhaps the fluid restriction and the weight problem contribute some stress. DI patients are prone to have weight issues due to water retention. Or perhaps you have other health problem that gives some kind of body response and affected the ddavp effectiveness. Besides DI, I hv other health issues resulted from the complete pituitary failure (pituitary is the master gland that work together with other glands).
Perhaps you need another visit to your endo. Prof told me, do not take too little (the ddavp)…or I’ll be dehydrating, and do not take too much …or I won’t be able to pee. Maybe that’s the reason why yr endo suggested for the water measurement. Regards.
great insight, and I do think you are right about the weight gain due to water retention
I am a dental hygienist, and there is no need to premedicate prior to dental treatment. the only time we premedicate patients is when there can be problems due to valve problems in their heart. impants in the body might also require premedication. basically, you want to prevent bacteria in the bloodstream that might happen from oral bleeding to lodge on heart valves or implants in the body.
even now in more recent years. restrictions on premedication have been lifted in most cases according to the american heart assoc.
I thought of my CDI as just an inconvenience as well until my hands and feet became huge, purple, blue and black at my knuckles. I went to the regular doc (not thinking it had anything to do with DI). She had no idea and thought it was just because I had gained weight since my last visit (my rings fit 2 nights ago…now they don’t…hmmmm). Oh and btw, I had gained 20lb in 3 months - they said I was not being honest about how many calories I had been eating - the only way to gain weight is to eat too much - right. So, the doc ordered a lab and told me not to eat salty foods. After complications with the docs I was told that my sodium was low and to eat more salt. A few phone calls later, I get another doc w/half of a brain and was told not to drink much. As it turns out my sodium was 127.
I gave up and went to an urgent care center…i was water intoxicated. I went off the DDAVP for 4 days (amazingly lost that 20 lb!) and went in to an endo. She told me I was fine, take the DDAVP when I needed it and drink when I’m thirsty…funny, but that’s what I had been doing for 7 years and this is what happened. I’m still desperately trying to find the balance!!!
ITeach, thanks for your post. I have been trying to figure out what is going on with me, and have been thinking that water retention is my problem. I have been monitoring my salt intake, and notice that when I eat anything more salty I am not only incredibly uncomfortable with swelling like you mentioned, but my weight goes up. also the terrible feeling in my mouth returns with thirst. so I have been trying to reduce sodium levels in my food, not all that easy, and when I do I am more comfortable, rings aren’t glued tight on my fingers and weight decreases slightly.
I have a regular endo checkup appt today, and am going to ask him about this. I was also thinking it might be worth a visit with a dietician to get a handle on low sodium living if he agrees it would help. I just don’t want to go low sodium and have my levels in my blood unhealthy, yikes! what a mess to balance.
I thought when I was diagnosed in January with CDI and went on the spray my troubles would be over - ha!
I will post later after my appointment. thanks again.
In a message dated 4/22/2008 10:01:48 P.M. Central Daylight Time,
diabetes-insipidus-cpt8455@lists.careplace.com writes:
<<<<<A few phone calls later, I get another doc w/half of a brain and was
told not to drink much. As it turns out my sodium was 127.
I gave up and went to an urgent care center…i was water intoxicated. I
went off the DDAVP for 4 days (amazingly lost that 20 lb!) and went in to an
endo. She told me I was fine, take the DDAVP when I needed it and drink when I’m
thirsty…funny, but that’s what I had been doing for 7 years and this is
what happened. I’m still desperately trying to find the balance!!!>>>>>>
ITeach, I am going through some problems right now also. The end of Feb. I
had terrible swelling one day with 8 lbs. gain and stopped the DDAVP for 15
hrs. and lost the 8 lbs. I had just weighed the day before and couldn’t
figure out what was going on. I went to my regular Dr. and my blood sodium was
low. He told me to cut back by 1 DDAVP per day. (I was taking a total of five
.1mg pills per day before that) I did that and things were fine until last
week!! So now I have about a 5 lb. weight gain and not going to the bathroom
much so I have been breaking my pills in half and not taking them until I
start running to the bathroom. I called my endo last week and couldn’t get in
until tomorrow. I have been writing notes of how much DDAVP I take and when
to show him. I am down to a total of only 1-2 pills per day! What is going
on?? I am almost more bothered now than when I was untreated cause now I
have been scared to drink too much but it’s been in the 80’s and I’m thirsty!
I was trying to do a little research but there’s so little about CDI. I did
see that CDI rarely goes away unless other problems develop. One can be
adrenLisal insufficiency or hypothyroidism. I know my thyroid was checked about
6 months ago by my regular Dr. I really don’t think I have been drinking
too much. I’m sure the Endo will do lots of labs tomorrow. My daughter and
sister are hypothyroid. Who knows, maybe I am now too. I figure my Endo won’t
find anything and say do what you’re doing breaking pills in half, take as
needed. I think it can take up to a week for labs to come back.
One more thing. I went to a walk in clinic about a month ago. I thought I
had a UTI, which I did not. The Nurse Practitioner asked if I had been
fasting, I had ketones in my urine!! (and blood in my urine and I had surgery no
periods) That’s what you usually have with regular diabetes. I had NOT been
fasting and had just had a physical at my regular Drs. office the week
before which included fasting before. I’m sure I was checked for regular
diabetes. Any ideas from anyone? I feel like my body is falling a part! Sorry this
is so long.
Lisa
**************Need a new ride? Check out the largest site for U.S. used car
listings at AOL Autos.
(http://autos.aol.com/used?NCID=aolcmp00300000002851)
ITeach, I am going through some problems right now also. The end of Feb. I
had terrible swelling one day with 8 lbs. gain and stopped the DDAVP for 15
hrs. and lost the 8 lbs. I had just weighed the day before and couldn’t
figure out what was going on. I went to my regular Dr. and my blood sodium was
low. He told me to cut back by 1 DDAVP per day. (I was taking a total of five
.1mg pills per day before that) I did that and things were fine until last
week!! So now I have about a 5 lb. weight gain and not going to the bathroom
much so I have been breaking my pills in half and not taking them until I
start running to the bathroom. I called my endo last week and couldn’t get in
until tomorrow. I have been writing notes of how much DDAVP I take and when
to show him. I am down to a total of only 1-2 pills per day! What is going
on?? I am almost more bothered now than when I was untreated cause now I
have been scared to drink too much but it’s been in the 80’s and I’m thirsty!
I was trying to do a little research but there’s so little about CDI. I did
see that CDI rarely goes away unless other problems develop. One can be
adrenal insufficiency or hypothyroidism. I know my thyroid was checked about 6
months ago by my regular Dr. I really don’t think I have been drinking too
much. I’m sure the Endo will do lots of labs tomorrow. My daughter and
sister are hypothyroid. Who knows, maybe I am now too. I figure my Endo won’t
find anything and say do what you’re doing breaking pills in half, take as
needed. I think it can take up to a week for labs to come back.
One more thing. I went to a walk in clinic about a month ago. I thought I
had a UTI, which I did not. The Nurse Practitioner asked if I had been
fasting, I had ketones in my urine!! (and blood in my urine and I had surgery no
periods) That’s what you usually have with regular diabetes. I had NOT been
fasting and had just had a physical at my regular Drs. office the week
before which included fasting before. I’m sure I was checked for regular
diabetes. Any ideas from anyone? I feel like my body is falling a part! Sorry this
is so long. I’ll let everyone know what the Endo says.
Lisa
**************Need a new ride? Check out the largest site for U.S. used car
listings at AOL Autos.
(http://autos.aol.com/used?NCID=aolcmp00300000002851)
Lisa,
I wish it could have stayed the same for me too! CDI was just an inconvenience then. Something that affected my life only when I was away from my DDAVP when I needed it. Now, it’s a royal pain! I have had everything checked that I can have checked and I’m “normal.” I don’t understand.
I hope you get some answers from your endo. Hopefully yours is more informed than any within 200 miles of me!!! But seriously, good luck!