Ddavp And Adh...

[lauralulu]

I was just wondering, how would one go about having their levels checked? I'd like to find out because my main and most troubling (horrible!) symptom is being EXTREMELY thirsty and peeing a lot. I've been checked for diabetes mellitus (I've heard of diabetes insipidus too but was told by my uro there was no point testing me for that because it's so rare...).

I really would like to find an answer as to why I am so chronically thirsty, it really gets me down at times, forever going to the bathroom, OR feeling like I'm terribly dehydrated (if I go for just an hour without a drink, I feel like I've been in the Sahara).

Who would I need to see about it, an endocrinologist? And what tests would I need to ask for? I already feel put through the wringer trying to find out if I have POTS, I'm semi reluctant to beg my Doctor for yet MORE tests but I feel like now is the time I should be proactive about my health and if I feel something is wrong, surely it's my right to get it checked out?!!

Any advice/info would be much appreciated.

[firewatcher]

Testing for ADH levels is notoriously inaccurate. The test itself is spotty and this summer there will be a new test for Copeptin levels that is far more accurate. They are working on the reference intervals now. I have been diagnosed with and without Central Diabetes Insipidus about 6 times now. Two docs say yes and two docs say no. To be absolutely accurate, you have to go to a pituitary endocrinologist and have a water deprivation test done (NOT pleasant at all!) Then they test your serum sodium levels against your serum and urine osmolality. I take dDAVP because it helps and the two docs that say yes to DI are my primary docs. I have had repeatedly low urine osmolality with high serum osmolality and consistently, unmeasurably low ADH levels (but that could be the inaccuracy of the test.) IF you take dDAVP your serum sodium levels need to be monitored weekly for the first month or so and you have to limit your liquid intake, otherwise you can really screw up your electrolytes.

[joy]

a symptom of dysautonomia is excessive thirst, like you can never get enough because your symptoms are similar to one who is dehydrated, so your body thinks it needs more and more.

I too have this, I require about 100 oz. I drink constantly.

[lauralulu]

It's such a dreadfully frustrating symptom, coupled with having an 'overactive' bladder that will only comfortably hold 200-250ml (with meds). I just hope I can get my diagnosis and some meds that will help...! I've learned to live with this, but lately it's gotten worse, to the point where my mouth is parched and I'm drinking constantly yet it feels as if the water itself is stripping my mouth of all moisture and it's passing through me like I'm a sink with an open drain!!

[kayjay]

I found increasing my salt and potassium really help me "hold"fluids better. Once I started drinking v8 a couple of times I day I realized sometimes I even sleep though the night without getting up to use the bathroom.

Mayo clinic told me that I was drinking too much plain water. You can drink sports drinks... that should help.

[Sophia3]

if you are LOW on the ADH hormone aka anti diuretic hormone=DDAVP, you could drink and eat salt by the boat loads. Won't help squat.

DDAVP can be quality of life fixer for those of us who need it and know how to use it. it helps us to concentrate urine. I would and still can push out clear urine at times. I dont put out a gallon of urine like some do (THAT NEEDS INVESTIGATING!!)

I could lose 8lbs urinating a day some times. I Still am cotton mouthed and use lots of chapstick but helped by DDAVP immensely, as needed. My autonomic/endocrinologist says water deprivation test too risky and he would never trust it to be done correctly (He can't do it himself by staying with me 24/7)

In my case we tried the DDAVP when I came across an article on it 8 or so years ago. Samples he had helped IMMENSELY with many issues.

[erik]

Certainly don't do one on yourself because it is both dangerous and useless (to diagnose anything you must perform lab measurements along the way, you can not simply judge looks or urine/weight changes... though perhaps one could use "taste test", he he . However, here's a great description of a water deprivation test (precise protocol varies):

http://www.diabetesinsipidus.org/medical.htm

It includes some indications of when not to perform the test (and of course a physician will be in a position to expand on these concerns for your specific case). They say not to do it when certain key measures/systems known to be out of range from the get go (adrenal, thyroid, hypovolemia, bad diabedes melitus, et. al.). It also mentions the need for continuous monitoring, both for safety and to ensure exogenous events do not foul results (including some things that we all tend to have either normally or especially as we dehydrate). I think the test can stop as soon as one crosses a diagnostic threshold so one might be lucky enough to confirm diagnosis before pushing to inconvenient or risky extreme.

In either event, cautious trial use of DDAVP seems an alternative in cases where direct diagnostics aren't desired. Typical concerns of DDAVP use are avoiding hypertension (supine hypertension, sleeping hypertension, especially) and electrolyte derangement... not unlike other meds we tend to make use of (fludrocortisone, midodrine, etc.).

I've had phases of significant urine dumping and it is always a huge component of weight changes for me... in fact I use my weight scale to confirm my intuitive sense of hydration level. Weighing myself is useless to assess fat loss except over long term (months) or in combination with my subjective sense of what was water and what was fat/muscle. I'll vary 5 lbs easily inside the day in normal circumstances (a little over 2 liters of water)... and up to 10 lbs (almost 4.5 liters) if something is changing or amiss.

One can simplify and characterize ADH as being rather specific to "water retention signaling" whereas Aldosterone is more about sodium vs. potassium balance (albeit with significant water retention coming as a "side-effect" of sodium retention). Both are involved in more complicated interactions than that (for example with Renin/Angiotensin, hypothalamus, pituitary, adrenal glands, vascular tissues, etc.) as are all hormones, but those are the prime effects one is typically after (or measuring). Desmopressin (DDAVP) is the synthetic analog of ADH... fludrocortisone is essentially that of aldosterone (plus cortisol/glucocorticoid effect to a lesser extent).

If you have "nephrogenic" D.I., then you might not have a shortage of ADH... just an underresponsiveness to it in the kidney. If you have pituitary problem, you might have an under-production of it. If you have hypothalamic trouble, the means of production might be fine but measuring the need might be amiss. Maybe brainstem issues can dysregulate the response too (or eratic BP/flow issues could miscalibrate ANS response). Other hormone imbalance might cascade to awkward ADH response indirectly. I would personally "reckon" that a dysautonomia could mysteriously/indirectly account for a D.I. effect, even without a classic D.I. cause too.

[lauralulu]

I would personally "reckon" that a dysautonomia could mysteriously/indirectly account for a D.I. effect, even without a classic D.I. cause too.

Greatly informative response, thanks! I believe this myself too

[firewatcher]

My nephrologist looked at my labs and decided to go the dDAVP trial route to see if it was a kidney or pituitary issue. When I responded to a single dose (with blood and urine tests before and after) it was determined that my kidneys respond, so the problem must be on the other end. After much back and forth between endocrinologists, I finally got that water deprivation test (NOT FUN!) and while my ADH was still non-existent, I did concentrate my urine. Under normal circumstances, I appear to have DI, but in extreme conditions something kicks in and makes the system work. With low brain blood-flow, I think that the pituitary just doesn't get enough blood to function appropriately and that causes a whole cascade of endocrine symptoms that we all enjoy.

[lauralulu]

With low brain blood-flow, I think that the pituitary just doesn't get enough blood to function appropriately and that causes a whole cascade of endocrine symptoms that we all enjoy.

That makes sense!

I'd love to TRY DDAVP and see if it helped at all... not sure how open to that Drs over here would be... it's something I can keep in consideration for the future I guess.

[firewatcher]

There is one overview article, I think by B. Grubb that mentions dDAVP as a treatment for POTS. You could print the article and take it to your doc and ask for a trial. You'll know within an hour if it works for you or not. It is not dangerous or painful to take it, and when it wears off you will "dump" all the water your body actually saved...that's also a fun part! Don't be far from a bathroom! If your doctor is receptive to trying drugs to help your symptoms, it should be an easy question for him/her. The only adverse side effects come with repeated use and over-drinking. You have to be very careful to drink ONLY when thirsty and up your sodium intake, never drink just plain water on dDAVP.

[joy]

I see you aren't formally dxed yet, if you get a disautonomia Dx and you can get a prescription for florinef, this may help you. increase your salt intake, and then with this drug it helps you retain salt because salt retains fluids