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Do you have POTS + Dilute Urine?


michiganjan
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My primary care doctor is interested in researching the possible connection between POTS and dilute urine because I have both symptoms. I was tested for Diabetes Isipidus (failure of the body to concentrate urine) and found to have an unusual form that seems to be both central (brain) and nephretic (kidney) in origin. I know there are others here with POTS who take DDAVP to help them retain fluids.

If you have POTS and have dilute urine or use DDAVP to help you retain fluids would you please send an email to me at:

methree@comcast.net

Please identify yourself in the email . . . your Dinet name is enough. I will not be sharing any identies or contact info with my doc. I just need to be able to prove to him that there is a subset of people with POTS who have the urine concentration problem.

If you wish to participate please include the following information in the email:

1. Confirm that you have POTS and dilute urine. If you have also been diagnosed with diabetes Insipidius, please include what type it is.

2. Do you have multiple chemical sensitivities?

3. Do you take very very small doses of drugs? In other words, do medications affect you at very low doses?

Thank you for your help. I will post anything I learn from this here.

Michigan Jan

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Hi...I am one of the people with POTS and dilute urine. I take DDAVP .1 spray once in the morning and once in the evening. My nephrologist did a water deprivation test and said that I had diabetes insipidus. However, at the Mayo Clinic they redid the test and said I didn't have it.

The problem with dilute urine surfaces whenever my POTS is really bad.

Dr. Low at the Mayo told my internist just a few weeks ago when I was hospitalized with dilute urine problems and dehyration that I should go back on DDAVP.

I do not have other chemical sensitivities. I am not sensitive to medications.

Please email me if you want to "chat" more about this.

Lois

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michiganjan...

i am one of those dilute urine, ddavp folks...

but i gotta go dig up the medical records so i can give you better info...

so, i wanted to let you know that i will do that as soon as i can...but that i didn't forget about your post here...and this way you will at least know there is one more of us!

so, i will get back to you with more details...i'm a little slow sometimes to catch up on things...so if you need to nag me, i understand! :)

i would like to hear what all you find out in the end b/c i am very interested in this also...

emily

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1. Confirm that you have POTS and dilute urine. If you have also been diagnosed with diabetes Insipidius, please include what type it is.

*** Count me in. Though I never had a formal "dilute urine" test ... I figure if it is clear like tap water that would be it. I am confirmed Tilt Table Test POTS. Began DDAVP Last Devember. I take .1 tablet once a day. Though I am trying to see if I can cut back ...

2. Do you have multiple chemical sensitivities?

****Again no formal test, but we use only vinager to clean in the house, everything must be unscented etc. etc. etc.

3. Do you take very very small doses of drugs? In other words, do medications affect you at very low doses?

***Yep. Child's dose on everything from advil to antibiotics.

Good luck on your healing journey.

EM

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Don't know if "dilute urine" is the same as what I experienced, but my urine was clear and I was in the bathroom once or twice an hour during daytime, and usually about 3-5 times during the night. I took parlsey capsules for a few weeks and the nighttime problem went away. I dissolved 4 different cell salts in my water twice a day for a few months and the daytime trouble went away as well as the extreme dehydration. My understanding is that my specific gravity was too low, therefore the water had no holding power in my system - it was just flushed out immediately. The salts gave the water "weight" so that my body could absorb it.

I am hypoglycemic, not diabetic.

Many herbs backfire on me, and most prescriptions are too strong. But I haven't taken any prescriptions for years except a tiny dose of beta-blocker on a need-only basis (actually, fairly rare now) for adrenaline rushes.

I do have much trouble with allergies to many things, although it's somewhat better since leaving my old job above a large printing business. My worst allergy: smoke.

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michigan jan!

sorry it took me so long to get back to you. i thought i could find the medical records but couldn't (i am in the process of collecting all of my records and getting them organized.) aaaarggghhhh....i have become my dad! he is the classic absent-minded professor who can never find anything in all of his piles!

anyway, i DID find the urology records, just not the endo records....

1. Yes, i have POTS....no questions on that. diagnosed via tilt and confirmed many times by different docs. my question...what counts as 'dilute urine.'? can you let me know. at one visit to the urologist my urine specific gravity was 1.003. does this help? i did 24-hour urine collections and had output of b/w 3750 cc and 4575 ccs over 3 different times. i had to pee all of the time! i was then referred for an endo eval. and had that water deprivation test. i was diagnosed with 'partial diabetes insipidus' and i think he suspected it to be the pituitary type. the problem here is that i am not sure how well the test was done or if he really knew what he was doing, so i am not sure how sound that diagnosis is. unfortunatly, the bladder stuff and peeing is sort of at the bottom of my health-priority list right now given a bunch of other stuff going on...so, i am sorry to be less than 'up' on this all. at one point i had this all memorized, but it is not coming to me right now! so, do you need more info. or is this enough to help you out with your survey/doctor? let me know. i know i have those records somewhere and can keep looking if you need them!

2. i don't think that i have mcs...but i don't use stuff that would aggravate that either.

3. i DO need teeny-tiny doses of meds. like, pediatric or smaller! but, after a while, i can usually tolerate the med...for example i would have done the same thing as you with the lexapro...but for me, i don't think that i would have had the same improvment as you did on less than a whole pill...but, i still take what are often considered not to be 'therapeutic' doses for the 'general population.'

i know you wanted short and sweet...but my case isn't very clear cut. as the docs say to me 'you are in the gray area on everything..." gotta love it! :lol:

oh, and, i now take DDAVP 2x per day... i take .1 mg in the morning and .1 at bedtime. i honestly could take more...every eight hours b/c once it wears off i am back to peeing all of the time. i tried taking it 3x a day but then my sodium went to low. i really do need to follow up with a better endo but i will have to find somewhere to travel for it. the DDAVP is a miracle drug for me in the sense of not having to pee constantly. still, i have to really watch my fluid intake or i still have to pee like crazy. the urologist htought my bladder was normal in function since i could hold 300-400 ccs at a time. but, he never investigated further. my POTS doc has suggested i look into that more...so i may do that next!

i hope this helps....could you please let us know as much as you can and find out from this! this is a topic that i am very interested in. this symptom drives me bonkers.

later alligator and happy thanksgiving.

emily

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Emily, One of the country's leading experts on diabetes insipidus is at Georgetown University should you ever decide to follow it up. Do you use the spray or the pill? The Georgetown specialist told me that the spray was much more effective--hard to believe that something that you spray in your nose can stop you from going to the bathroom. It does last longer than the pill.

Lois

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Yes, I have POTS that is ever so slowly improving over the last 2 1/2 years.

Yes, I frequently use the bathroom for large amounts of urine, this symptom also improving.

Yes, I always take pediatric doses of medications if I take any medication at all. I am extremely reactive to most medications. I can't tolerate perfumes. Martha

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