sue1234 Posted July 31, 2009 Report Posted July 31, 2009 I'm sorry--I don't know the range as I didn't get a paper copy. Does anyone know if this is significant? I requested this test specifically of my doctor as I've read/heard of people taking DDAVP and finally being able to tolerate the heat and actually sweat, along with helping the orthostatic issues. Thanks. Quote
firewatcher Posted July 31, 2009 Report Posted July 31, 2009 It completely depends on when it was taken, what your blood and urine osmolalities were and whether or not you were fluid fasting.If your ADH was 0.8 and your blood osmolality was 298 and your urine osmolality was 200...it matters=diabetes insipidus.If your ADH was 0.8 and your blood osmolality was 283 and your urine osmolality was > 400 its completely normal.ADH is the hormone that is secreted by the pituitary to tell your kidneys to increase their water absorption. If you don't make enough, you urinate LOTS of clear urine, dumping all the water in your system and your blood gets thick (osmolality.) If you have hypovolemia (low total blood volume) and you take ADH you will retain water only and need to take in more salt or your electrolytes will become "deranged" and you'll have problems. If you get all the dosing right you will increase total blood volume and your orthostatics will be more manageable. Quote
sue1234 Posted July 31, 2009 Author Report Posted July 31, 2009 Well, I had the blood drawn at 7:30 a.m., fasting, and had not had anything to drink, except a bedtime sip, for about 12 hours. I didn't do any urine work, so don't know the osmolality. I guess I don't have enough information to actually make any conclusions on this. Quote
firewatcher Posted July 31, 2009 Report Posted July 31, 2009 Nope, sorry. All depends on Serum/Urine Osm.s and serum sodium levels. I had an ADH of <0.8 at 12 hours fasting and a SOsm of 296. I also had an ADH of <0.5 and a SOsm of 304 (normal is 285-295) after fasting, but based on the urine Osm it was determined that I did not have diabetes insipidus. Several doctors are still arguing over that one. Without the other tests, I'm afraid it doesn't mean much. Sorry. Quote
sue1234 Posted August 6, 2009 Author Report Posted August 6, 2009 Anyone else have any stories about their ADH levels and if it was treated? Quote
firewatcher Posted August 7, 2009 Report Posted August 7, 2009 Sorry to be the only one answering you, but I've had many discussions with many doctors about ADH and diabetes insipidus. I have been dxed and anti-dxed with partial DI and they still can't tell me what is going on. My ADH has been <0.8 at a serum Osm of 296 and <0.5 (below the detectable limit) at a serum Osm of 304, but they are not calling it DI despite frequently inappropriate dilute urine.A big question is unfortunately the test itself. If the sample is handled inappropriately or processed wrongly it is a worthless test. Oftentimes it is completely inaccurate even when properly processed. There is a Swiss study underway right now for a better marker of ADH secretion using copeptin. The results will be out summer of 2010. Copeptin is a far more stable marker of ADH levels and easier and more accurate to measure, they are working on a study sample so that they have accurate reference intervals for the various ADH issues. I also wonder if anti-vasopressin antibodies would also cause or show a low level of ADH on the assay or in the body (like anti-thyroglobulin AB.) If you have anti-ADH antibodies, does it negate the effect of your natural ADH causing DI or just cause a falsely low test level? Quote
Sophia3 Posted August 7, 2009 Report Posted August 7, 2009 I thought the only test for Dia Insipid is water deprivation tests.I had extreme thirst (still do but to lesser degree) and even tho i drank it was not huge amount but I could urinate a lot. some days worse than others...every 15 minutes and 5lbs of fluids in waking hours.8 years ago On my own I researched this and heard of DDAVp. In one of many books on ANS problems I scanned either from hospital library where friend used to work or Grubb's edited SYNCOPE Mechanisms and management or an article DDAVP was mentioned. I ran it by my endocrinologist who had checked many other things. He gave me some samples and we decided to go by OBVIOUS clinical signs I had and not by what blood tests said. Those are guidelines and sometimes are bodies are tweaked differently.Since DDAVP helped me so much to hold FLUIDS even when salt and Florinef did not, I am on it years later as needed..most always at bedtime and sometimes during the day.NEVER heard of it helping with heat intolerance or sweating. I lost ability to perspire almost 85% years ago and even then not to heat but other stuff, stress or cold (feet or armpits)I still feel like crap in the heat. But DDAVP helps me to use less chapstick, and hold water as I mentioned.Not familiar with your test. Why isn't your doctor explaining it to you? Quote
firewatcher Posted August 7, 2009 Report Posted August 7, 2009 "I thought the only test for Dia Insipid is water deprivation tests."That is the definitive/gold standard test, but is not completely accurate for partial DI. Hopefully the new copeptin test will be."I had extreme thirst (still do but to lesser degree) and even tho i drank it was not huge amount but I could urinate a lot. some days worse than others...every 15 minutes and 5lbs of fluids in waking hours."same here, lost 4-6 pounds a day."Since DDAVP helped me so much to hold FLUIDS even when salt and Florinef did not, I am on it years later as needed..most always at bedtime and sometimes during the day."I just will not hold fluids if I don't. Dr. Biaggioni wants me to try Florinef, but until my kidney function is accurately determined, it would be dangerous for me to try it."NEVER heard of it helping with heat intolerance or sweating. I lost ability to perspire almost 85% years ago and even then not to heat but other stuff, stress or cold (feet or armpits)I still feel like crap in the heat. But DDAVP helps me to use less chapstick, and hold water as I mentioned."I have not heard it help with heat tolerance or sweating either."Why isn't your doctor explaining it to you?" I agree, (although I think you asked for the test??) did he test anything else at the time (blood sodium, potassium, etc??)dDAVP is prescribed "off label" for other things, like bedwetting, but it is NOT a "safe" drug. If you overdrink you could very easily end up hyponatremic and in the hospital. If you try it, you need to alter your drinking behavior, which can be hard at first if you are chugging gallons of anything now. My doc wants me to have a "dump" in between doses, when I get rid of any excess water (at the time of day when I am least symptomatic.) When I mean dump, I mean DUMP...running to the bathroom every 10-20 minutes and don't be in the car or asleep when that hits! Within five minutes you can go from giving up a tablespoon of yellow urine to gushing a quart of pure water. Quote
sue1234 Posted September 24, 2009 Author Report Posted September 24, 2009 Well, Firewatcher, I retested, but we'll not know if I actually have true DI. My ADH was again low at 0.8(0.0-4.7) and this time I have a hard copy, with the blood osmolality at 292(275-295). But no urine test, so don't know that. He did prescribe some DDAVP(?), but I won't start it just yet, as I'm going to a new cardio next that is supposed to run all kinds of tests--he said he was blocking off most of the day for my stuff. Quote
firewatcher Posted September 24, 2009 Report Posted September 24, 2009 Well, Firewatcher, I retested, but we'll not know if I actually have true DI. My ADH was again low at 0.8(0.0-4.7) and this time I have a hard copy, with the blood osmolality at 292(275-295). But no urine test, so don't know that. He did prescribe some DDAVP(?), but I won't start it just yet, as I'm going to a new cardio next that is supposed to run all kinds of tests--he said he was blocking off most of the day for my stuff.Sue, That is low for SOsm of 292, but with no urine Osm the test is inconclusive. Were you thirsty when that was drawn? Usually thirst stimulation begins at SOsm of 293, yours may be set lower if you were ACTUALLY thirsty. Good luck with your other tests! Quote
sue1234 Posted September 25, 2009 Author Report Posted September 25, 2009 I had it drawn fasting in the a.m. I wake up around 1:00 a.m. to go to the bathroom and my mouth is always dry, but I don't drink anything. And, of course, when I wake in the morning, mouth dry and thirsty. Thanks for the heads up on my testing! I hope something positive comes of it, and not just another dead end street. And, also want to make sure the cardio thinks with my vital signs that the DDAVP will be o.k. to try and see if it helps. Quote
firewatcher Posted September 25, 2009 Report Posted September 25, 2009 I had it drawn fasting in the a.m. I wake up around 1:00 a.m. to go to the bathroom and my mouth is always dry, but I don't drink anything. And, of course, when I wake in the morning, mouth dry and thirsty. Thanks for the heads up on my testing! I hope something positive comes of it, and not just another dead end street. And, also want to make sure the cardio thinks with my vital signs that the DDAVP will be o.k. to try and see if it helps.If your SOsm was only 292 and you were fasting it does not sound like diabetes insipidus. My SOsm was 304 after an overnight fast and my ADH was undetectable. The ADH test is notoriously inaccurate. If they clear you to use dDAVP, please be careful NOT to consume too much water and drink only when thirsty. It has helped me tremendously, but I had to "get used" to how much to drink. Quote
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