Jennifer J
Senior Member
- Messages
- 997
- Location
- Southern California
This is part of a letter I faxed to my Endocrinologist, which via her receptionist she didn't answer my questions, which has me still in the dark and concerned. I'm really not even if sure she read my questions.
My doctor recommended decreasing my DDAVP pills (I'm presently at .1mg am, .1mg pm) or decreasing my water (I'm drinking 60 ounces a day now - a little less than 8 - 8 oz glasses). Below are my questions to her which she is too busy or ? to talk to me and she can't see me at this time. She's booked out for 5 months!
I did see her end of July and was under the impression she was going to work with me in monitoring this and regulating it, which hasn't been the case. She even said she was concerned that I could have a seizure or die cause my sodium levels have been decreasing as time goes on. (I've called several times and have had a few urgent care visits. Every message has been answered by her via the receptionist which hasn't answered my concerns. I was told I could fax her.)
I'm so foggy and fatigued trying to read about this on the internet is too difficult at this time. If anyone has experience and can answer any of my questions, I will be forever grateful, as I already am thankful for everyone on this site.
Here's the part of the fax to her:
I was surprised that my sodium was low. I really thought it would be much higher due to changes made. I haven't felt good at all, at times I feel horrible, for the past month or so. Headaches for weeks (which I practically never have), legs crampy, heart pounding, very weak , bubbly sensations in calves and feet, parched, and periods of dizziness.
It's very hot in my room with the heat we've had this summer. I'm sweating and I've drenched my bed several times. It was during these extra hot days I've started to have the leg crampiness, bubbly sensations, and the other symptoms noted above.
I'm doing my best to stay cooler yet can't do much. I am very limited due to my ME/CFS. I'm bedbound most of the time, struggling, it's a monumental effort to even put some yogurt in a dish, feeling like I'm going to collapse, and I do collapse afterwards. Any effort, I pay for with being worst off and longer. It's complicated.
My DI has not been controlled for at least this past month even more so in the past 4 days. I am urinating too often and I'm parched.
Questions:
-Are my sodium levels less because I'm urinating so much?
-What about dehydration with this heat? Why the cramping and bubbly sensations that started with the heat?
-Less water? I'm at 6 - 10 oz cups a day which doesn't seem like enough with the heat, my symptoms and how much I'm sweating at times.
-I don't feel good on more sodium (the 1300 mgs). It may be affecting my DI acting up too. I know in the past more sodium threw me off.
-I'm urinating so much right now and I'm parched. To decrease the DDAVP will make that worst. Isn't urinating more decreasing my sodium?
-Can we test my sodium again, and dehydration minerals? One night I kept sipping on water when waking up (accidentally sipped a cups worth which would have brought my water up to 7 cups that day only), not sure if it was the night before my labs were done.
-The water machine in my building I haven't been able to use since mid September. I've been drinking purified water (reverse osmosis and several other steps) from a water store. Is that affecting anything or will as time goes on cause less minerals, etc?
I need help regulating and monitoring all this as it changes, and as it still isn't adjusted to where I feel well and it's controlled. Please help me.
Thank you everyone on PR. I'm here cheering you on and wishing better health for all.
My doctor recommended decreasing my DDAVP pills (I'm presently at .1mg am, .1mg pm) or decreasing my water (I'm drinking 60 ounces a day now - a little less than 8 - 8 oz glasses). Below are my questions to her which she is too busy or ? to talk to me and she can't see me at this time. She's booked out for 5 months!
I did see her end of July and was under the impression she was going to work with me in monitoring this and regulating it, which hasn't been the case. She even said she was concerned that I could have a seizure or die cause my sodium levels have been decreasing as time goes on. (I've called several times and have had a few urgent care visits. Every message has been answered by her via the receptionist which hasn't answered my concerns. I was told I could fax her.)
I'm so foggy and fatigued trying to read about this on the internet is too difficult at this time. If anyone has experience and can answer any of my questions, I will be forever grateful, as I already am thankful for everyone on this site.
Here's the part of the fax to her:
I was surprised that my sodium was low. I really thought it would be much higher due to changes made. I haven't felt good at all, at times I feel horrible, for the past month or so. Headaches for weeks (which I practically never have), legs crampy, heart pounding, very weak , bubbly sensations in calves and feet, parched, and periods of dizziness.
It's very hot in my room with the heat we've had this summer. I'm sweating and I've drenched my bed several times. It was during these extra hot days I've started to have the leg crampiness, bubbly sensations, and the other symptoms noted above.
I'm doing my best to stay cooler yet can't do much. I am very limited due to my ME/CFS. I'm bedbound most of the time, struggling, it's a monumental effort to even put some yogurt in a dish, feeling like I'm going to collapse, and I do collapse afterwards. Any effort, I pay for with being worst off and longer. It's complicated.
My DI has not been controlled for at least this past month even more so in the past 4 days. I am urinating too often and I'm parched.
Questions:
-Are my sodium levels less because I'm urinating so much?
-What about dehydration with this heat? Why the cramping and bubbly sensations that started with the heat?
-Less water? I'm at 6 - 10 oz cups a day which doesn't seem like enough with the heat, my symptoms and how much I'm sweating at times.
-I don't feel good on more sodium (the 1300 mgs). It may be affecting my DI acting up too. I know in the past more sodium threw me off.
-I'm urinating so much right now and I'm parched. To decrease the DDAVP will make that worst. Isn't urinating more decreasing my sodium?
-Can we test my sodium again, and dehydration minerals? One night I kept sipping on water when waking up (accidentally sipped a cups worth which would have brought my water up to 7 cups that day only), not sure if it was the night before my labs were done.
-The water machine in my building I haven't been able to use since mid September. I've been drinking purified water (reverse osmosis and several other steps) from a water store. Is that affecting anything or will as time goes on cause less minerals, etc?
I need help regulating and monitoring all this as it changes, and as it still isn't adjusted to where I feel well and it's controlled. Please help me.
Thank you everyone on PR. I'm here cheering you on and wishing better health for all.