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Post by cmcgowan on Dec 2, 2008 18:01:11 GMT -5
We live in California How is a ADH tested? Blood? urine?
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Post by justaustin on Dec 2, 2008 18:44:40 GMT -5
Blood for vasopressin/ADH.
Too bad you live in CA. Do you have family/friends who live out of state (Except NY,NY and RI)? IF so, you can order labs via econolabs or healtcheckusa.com and have drawn at a labcorp closest to them. The results can be emailed/faxed/snail mailed to address of your choice.....;
Econolabs has the cheapest price for aldosterone and renin. Not sure about vasopressin. I would call and order. Use a friend/family credit card and their physical address (pay them immediately back).
I've ordered labs for my mom and brother who live out of state. I called,ordered/paid/set up email address for results to be sent to.... When they came to visit, they went to labcorp to have drawn. The point being that it can be done... Without a doc... if they refuse to do it... The prices are pretty reasonable, BTW. AND, YOU GET THE RESULTS.
Laurie
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Post by cmcgowan on Dec 2, 2008 20:30:50 GMT -5
One more question. Having aldosterone and renin tested would mean what? Would it change how we are treating her? Would it mean more meds if something came back one way or the other? I tried to to some research on aldosterone and renin and could not find much. Just wondering? I know some people that have children on the same med as my Keirsten and never have they talked about aldosterone and renin. Which probably means they have not herd ether. Why are we not told at the Dr's office of all these things? Some times I feel like Dr's don't tell you everything. I have even been to 2 conventions were endos speak on panpit and still have not herd of aldosterone and renin. Why is that? Don't get me wrong the convention are great and very informational and you meet other parents that have children like your and you make lasting relationships with these people, and can communicate with them about all the issues. The first time I herd of it was a couple of months ago from the yahoo group. Her ped dr is better then her endo. Her ped saved her life. If it was not for her quick thinking she might not be hear today. Sorry for rambling. Thanks for all the info. Carolyn
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Post by Chris Jackson on Dec 3, 2008 19:39:53 GMT -5
It could change it, but you have to consider if she still has problems retaining water. I have seen people on florinef and vasopressin, but is very uncommon. I have dealt with someone on a personal level that I suggested asking the doc to consider adding florinef (was tested and had symptoms of low aldosterone) to her Desmopressin.
Yep, docs really hold back don't they? In her case he may not know to look at aldosterone. If she has symptoms of salt wasting then aldosterone and renin should be tested.
These are the same doctors that think secondary AI people don't have low aldosterone, which they do.
You're welcome, Chris
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Post by Lethal Lee on Dec 6, 2008 23:30:43 GMT -5
Keirsten does not function well in the heat at all. She seams to crash and looks bad. She crave all kinds of food and is constantly eating, but is small for her age. 3 1/2 she is 23lbs I have asked the Dr about her aldosterone and renin tested, but was told it was not necessary. I will ask again when we go in the beginning of January and a ADH test. Thanks Carolyn Hi Carolyn, I would get Aldosterone Renin, Sodium & Potassium tested at same time early 8am Salt fasting for 24 hours. I would also get Fasting Insulin, Glucose, A1C tested too. Plus ADH of course. have you ever collected her urine for 24 hours & checked the volume? High volume may be suggestive of Aldo/Sodium issues or perhaps low ADH. One of my Twin sons wasnt dry at night until 12 years old. You can imagine how that affected him confidence wise. I never knew to test ADH I bet that was his problem. We now know he is Hashis AI & probably Hypopit too. He stopped wetting in the night very suddenly. It just went from EVERY night to none! Dont know why. How much HC is your daughter on? As Laurie said too low a dose may contribute to Hypoglycemia/blood sugar control issues.
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Post by cmcgowan on Dec 7, 2008 11:29:01 GMT -5
Keirsten is 2.5 mg 3x a day. This was just raised about 2 months ago. My Endo said that is a little high for her size but was will to try. We are going back to the endo this friday with lots of question. Thanks. Carolyn
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Post by cmcgowan on Dec 15, 2008 14:52:30 GMT -5
Thanks for all your help. She is now on DDAVP for DI. Thanks Again Carolyn
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Post by justaustin on Dec 15, 2008 20:38:42 GMT -5
Glad to read the update. What happened? Doc listened to you? Had labs drawn (obviously).
Laurie
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