i do see endo doc and all the docs i work with in the er told me you have to be on a fluid restriction due to ddavp. no my thyroid is not working either. i see a top specialist for this problem andgo to joslin clinic known all over the world with diabetes insipidus as well.
mary tyler moore goes there for her diabetes as well. the joslin is known allover the world
I dont know maybe your doctor knows somthing that all of our doctors dont.but i will be checking into this more.
Even though Mary Tyler Moore goes there for her Diabetes… That doesn’t
DI is completely different than diabetes mellitus, which is what MTM has . .
The only thing they have in common is excessive thirst and excessive
Just an FYI,
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OK PLEASE DO CHECK INTO THIS MORE. I KNOW MARY TYLER MOORE IS THERE FOR DIABETES ONLY NOT DI , BUT DI IS TREATED AT THE JOSLIN ITSELF. I JUST SPOKE TO MY DOC THIS MORNING AND HE SAID ANYONE THAT HAS DI NEEDS , REMEMBER NEEDS TO BE ON A FLUID RESTRICTION.
ANYONE USING DDAVP LIKE IAM HAS TO BE ON IT DUE TO SODIUM AND POTASSIUM AS WELL. MY DOC SAID IT DOES NOT DROP THAT IS WHY I HAVE BLOOD WORK DONE EVERY 2 WEEKS TO MAKE SURE I AM NOT IN DANGER.
SORRY IF YOU DO NOT THINK IT IS SO BUT IT IS??
I worry about you on two counts.
The first is that you obviously have compex medical problems with a number of separate issues & the treatment and symptoms of some are possibly aggravating others, which makes it difficult to work out what’s causing what, and it’s confusing you as to how serious DI actually is (or isn’t).
Secondly, some of the information that you post is totally incorrect - it may be accurate for your particular set of medical conditions, but much of it has no relevance to uncomplicated Cental DI. If a newbie looked at your posts they may die of fright, rather than fluid retention! It certainly looks scary!
I would firstly suggest that you read through the Diabetes Insipidus Foundation website, vetted by America’s TOP Diabetes Insipidus specialist, who features at each and every Diabetes Insipidus foundation conference. Just from a point of curiosity, it’s worth knowing about the two major types so that when those with Nephrogenic DI post, you will know what they’re talking about.
In a nutshell, though, Central Diabetes Insipidus is a deficiency of vasopressin, which tells your body how much ‘free water’ to retain. It has absolutely nothing to do with your body retaining / losing potassium or any other solutes. If you have those issues, it’s something else, but is often found in the same people depending on what caused their DI in the first place. If DI ‘washed’ sodium from your body the Fluid deprivation test wouldn’t work, and we wouldn’t end up with high sodium when dehydrated, we would have what’s called volume dehydration. With CDI many people have other endocrine issues, because whatever caused their DI also caused other problems.
Sodium and Potassium are for the most part managed by your adrenal gland and kidneys. There is a bit of a myth, even among some top doctors that CDI causes low potassium. It doesn’t. If you have low potassium it’s for another reason.
(When you read the DI website you’ll see that some of those with NDI DO lose some solutes, and the main treatment for NDI is thiazide diuretics, which DO deplete potassium, but that’s not you, or me, or most of us.)
Diuretics are often used as part of the treatment for heart conditions. If that’s the case for you, that may be the cause of your low potassium. Low potassium can also be an indicator of adrenal problems. I had low potassium for 20 years, and the cause of my very high blood pressure was obscured for many years because some doctors just passed off my low potassium as a result of the DI and / or thiazide diuretics. (What was your lowest reading, do you know?)
Regarding fluid restriction: I’m not sure why your doctor is so adamant about the 700ml - that’s obviously an individual situation for you, but for anyone with uncomplicated DI, if you’re untreated, you drink what you like. If you’re treated, you drink when you’re thirsty (provided you have a normal thirst response). Your own body tells you whether or not to drink. For those of us without heart or other problems a litre or so either way is quite common. The vast majority of people with CDI don’t have blood tests from one year to the next (and don’t need to). For a fully treated person, the normal fluid intake would be around 2 litres a day. For people taking lower doses of desmopressin for whatever reason, they drink whatever they need to replace what they’ve lost. Drinking the five litres won’t hurt her, NOT drinking them will - FOR HER.
I’m not saying your doctors are wrong, I’m simply saying that your complex problems have solutions that are not really relevant for anyone else. e.g. someone drinking five litres - what’s the problem - she pees out five litres too, and NO she doesn’t pee out too much sodium and potassium.
If people with DI were dropping like flies I think we’d have heard about it. Truth is, most are just going about their business like a healthy person. It’s not a disease - i.e. it doesn’t progress like heart (disease), cancer etc. If the whole world had DI there’d be absolutely no problem having it (except there’d be a lot of lemon trees in the street.
When you talk about electrolytes you may have misunderstood about ‘dropping your sodium’, what it means is that the actual reading in your body is low (normal is 135 - 145). If you take desmopressin and drink too much (eg 6 litres, and nothing’s coming out, you dilute the sodium in your body (i.e… it’s all still in there, just had too much ‘free water’ added), you’re not ‘dropping it out of your body’. Low sodium is bad for your brain, but it needs to drop to about 120 to be life threatening.
It IS important if you are taken to hospital and given IV that they know, but I can assure you for the average DI person the problem’s minor. For a start, if you’re conscious you can tell them, if you’re not they’ll have a urine catheter in to check output. If they’ve got any brains they won’t keep plugging fluid in if there’s none coming out. If the desmopressin has worn off they’ll be wondering why you’re peeing large quantities of dilute urine and will be checking blood results and discover you’re dehydrated. The BIGGEST problem with hospitals is relying on the professionals to know what they’re doing. The problem is probably greater if your desmopressin has worn off because then you should have a lower sodium IV.
For my adrenal tests in hospital a few years ago, one of the tests was a ‘salt loading’ test, 2 litres of normal saline solution by IV over two hours, with the desmopressin working. (the tests were run by the endocrinologist in charge of that department in a major teaching hosptial). And guess who they never do this test on? Not people with DI, but people with heart conditions.
When you say people are on fluid restriction, I would challenge the ‘restriction’ word. It’s not restriction, it’s awareness. By the time most of us have too much / too little fluid in our body (and long before it’s dangerous) it’s obvious with swollen hand & feet (or loose skin if dehydrated) etc. You need to be aware of what’s leaving.
Your doctor seems to have you down to the minimum output of about 500ml per day, for some reason. You should ask. Perhaps it’s for heart reasons, perhaps it’s for kidney reasons. I had a look at the Joslin website, and even they recommend 2 - 2.5 litres if there’s no thirst response for someone taking desmopressin.
If you can only drink a limited amount, coffee would be one of the worst things. You may find drinking soda water or sparkling mineral water useful. If you’re constantly thirsty sipping this will at least make your mouth feel better for a little bit, unlike coffee etc.
Try to get hold of your blood & urine results so that you can be in control of your information, and feel free to post them here if you so wish.
Sorry about the long rant.
Happy to answer any questions, but keep in mind none of us know the details of your other problems or how the DI impacts on them.
kat11133 firstname.lastname@example.org wrote:
Those with nephrogenic di need the monitoring. Those with cranial, central
do not. Please check the DIF and NDI websites out if you have any questions
regarding that. Your endo is misinformed.
----- Original Message -----
From: “kat11133” email@example.com
Sent: Wednesday, April 09, 2008 10:52 AM
Subject: Re: [diabetes-insipidus] i see endo doctor