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I was diagnosed and had surgery for acromegaly 7 years ago and then was diagnosed with DI and put on DDAVP. Since I have had severe fluid fluctuation issues, and most recently severe high blood. In a panic over my extreme high blood pressure last week, I stopped taking the DDAVP. My blood pressure quickly nomalized and I have dropped several pounds of fluid and I feel good. Has anyone else had this experience.
hi there, yes! I am having a terrible time with weight gain on the DDAVP. my endocrinologist doesn't believe it could be the case. I have tried to find another endo, but no one knows anything about it. have you gotten any answers? my direct email is gatormom17@aol.com
After my surgery, Nov 05 I developed high blood pressure as well. I was taking medication but it was affecting my heart rate, thus I stopped. I was only because I was beginning to feel extremely faint that I pursued the matter with my heart specialist. I have found that the medical community that will assist with my condition, acromegaly, is small - Endocrinolgist and Eye Doctor. My family physican is somewhat cautious, but most times says go see the Specialist. That is very difficult when you only see that every six months, and can not get an appointment because of medical complaints or changes. Sometimes I feel that it doesn't really matter, cause there is nothing they can do for me anyways. I continue to monitor my own health, and ensure that I get appropriate heart tests, thyroid testing and ultra-sounds as I feel are necessary = yearly.
Hi. I know a few children with the same syndrome as my daughter (ROHHAD) that have taken DDAVP for DI and have also had the fluid retention. One of the little girls was so bloated she looked like she was going to pop and her skin actually started cracking and bleeding. They took her off it and she lost 22 pounds of fluid. Doesn't sound like a very nice medication to me.
Hi, First let me start by stating that for the past four years I have tried to communicate to my endo that the DDAVP, was affecting me adversly. I was experiencing high blood pressure, heart palpatations, bloating and weight gian, 50 lbs in the past five years. Not to mention the feeling that I was on a sinking ship. I was taking0.01 mg of DDAVP, and I was actually scrapping with my teeth just as little as possible, and it was too much on my body. I went to my MD, she said oh no, you DNA is what is causing this high blood pressure, 185/115 that day, I felt like I was going to burst. She perscribed a water pill 25 mg. So I decided that is it, I am done with the DDAVP. In the first two weeks I lost 19 lbs, in the following three weeks I could feel the water accumulating in my mid sections. I have been seeing an endo at Jefferson Hospital, Phillly. He kept telling me that it was not the DDAVP, I should consider gastric bi pass. I made an appointment with a new endo in Maple Shade, he said that he felt it was idiopathic edema. He ran blood test, urine test, a water load test, a 24 hour urione test and I am going back to him this morning. However, God had given me some insight, last week. I was feeling cloudy, almost like a hang over feeling in the morning, I was having palpatations, and I felt that there was water in and around my heart. I was feeling sick. I went to a hair dressing appointment and the lady was stating that someone who worked for her went to the hospital, and come to find out it was lack of potassium. This was a confirmation for me, it was all God, anyway, I came home and started to research and sure enough, lack of potassium had the symptoms I was experiencing. I order minerals from my herbalist, I have been on them 6 days and I am feeling much better. I believe that the amount of urine I am letting go of has effected by mineral balance. Which I will discuss with the new endo today,
I know two things for sure at this point, one ask God for direction, and listen carefully and listen to your body.
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