Loading ...
Sorry, an error occurred while loading the content.

Re: [diabetesinsipidus] diabetesinsipidus breakthru low sodium

Expand Messages
  • Ruth von Rotz
    Thanks-it looks as though I am going to Palo Alto VA with an endocrine specialist there-hopefull Andrew Hoffman who is also the head of Stanford endocrinology
    Message 1 of 8 , Feb 7 12:38 PM
    • 0 Attachment
      Thanks-it looks as though I am going to Palo Alto VA with an endocrine specialist there-hopefull Andrew Hoffman who is also the head of Stanford endocrinology and specializes in pitutary disorders. I'm sorry you had such a rough go as well-It's hard to educate the docs that have no experience in this.  I feel lucky that I have managed the di so well but it was a result of pituitary surgery  that was not needed in the first place!  I will keep Gary Robertson on file.  Hopefully your di is under control. thanks
      On Feb 7, 2013, at 11:13 AM, colleen fadollone wrote:

       

      Hi
       
      I have the same disease and my brother doe's too, None of the doctors would believe us so we went to Chicago to a research doctor glr388@... Dr. Gary Robertson. we stayed there for a week and he agreed we had diabetis insipidus. He even wrote to my doctor and they refused to listen to him, but one of my doctors decided to give me some of the DDAVP which I decided not to take because it does affect your sodium levels, one nigjht I went to get some nose drops and grabbed that in error. I think I took it for a couple of days. I became deathly sick and ended in the hospital for 3 days, I was told I almost died and if I had not come into emergency when I had I would have been dead. I am not sure if you can still get dr Robertson at that email address because he retired a few years back but worth a try, he is a great doctor and will give you some good advice.
       
      Colleen Fadollone.

      From: mtnewe <rvonrotz@...>
      To: diabetesinsipidus@yahoogroups.com
      Sent: Thursday, February 7, 2013 10:30 AM
      Subject: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
       
      I have DI now for almost 20 years and have managed it fairly well. Recently my sodium was 122 which was cause for alarm with my internist. I told him that I had been peeing all night before this. (up at least 6 times- the sodium blood test was in the AM the next morning fasting) He thinks my sodium level was low due to too much DDAVP and that I was retaining y water. I disagree and believe it was due to not having enough since I was peeing it out. I wonder if this batch of pills was "bad" as I had some other breakthroughs during this time. I have my sodium checked every 6 months and it has been generally fine. This doctor and my endocrinologist have have no other patients with DI. They wanted me to take a smaller dose of DDAVP. I tried that but only had breakthroughs and a lot of peeing which I think would have lowered my sodium again. I took the medicine as I had before and levels are fine after a week with several checks. I am very frustrated by the docs who didn't listen to me. At the end of my discussion with the internist he said he was staring to believe me. Recently I have found low cortisol levels as marked by the AM test and chronic mild microvascular disease as per my latest brain MRI. I'm thinking it's time for a trip to San Francisco (about 3 1/2 hours away) to the pituitary disorder center. I also want to make sure nothing else is wrong and worry a bit about renal deterioration (although it was good enough to have the MRI with contrast) Any thoughts on this?



    • colleen fadollone
      No, I have to manage it the best I can because mine is a type they don t know how to treat it, so have gone through life with it and nothing to help me. Good
      Message 2 of 8 , Feb 7 2:18 PM
      • 0 Attachment
        No, I have to manage it the best I can because mine is a type they don't know how to treat it, so have gone through life with it and nothing to help me. Good luck to you.
         
        Colleen
         
         

        From: Ruth von Rotz <rvonrotz@...>
        To: diabetesinsipidus@yahoogroups.com
        Sent: Thursday, February 7, 2013 12:38 PM
        Subject: Re: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
         
        Thanks-it looks as though I am going to Palo Alto VA with an endocrine specialist there-hopefull Andrew Hoffman who is also the head of Stanford endocrinology and specializes in pitutary disorders. I'm sorry you had such a rough go as well-It's hard to educate the docs that have no experience in this.  I feel lucky that I have managed the di so well but it was a result of pituitary surgery  that was not needed in the first place!  I will keep Gary Robertson on file.  Hopefully your di is under control. thanks
        On Feb 7, 2013, at 11:13 AM, colleen fadollone wrote:
         

        Hi
         
        I have the same disease and my brother doe's too, None of the doctors would believe us so we went to Chicago to a research doctor glr388@... Dr. Gary Robertson. we stayed there for a week and he agreed we had diabetis insipidus. He even wrote to my doctor and they refused to listen to him, but one of my doctors decided to give me some of the DDAVP which I decided not to take because it does affect your sodium levels, one nigjht I went to get some nose drops and grabbed that in error. I think I took it for a couple of days. I became deathly sick and ended in the hospital for 3 days, I was told I almost died and if I had not come into emergency when I had I would have been dead. I am not sure if you can still get dr Robertson at that email address because he retired a few years back but worth a try, he is a great doctor and will give you some good advice.
         
        Colleen Fadollone.

        From: mtnewe <rvonrotz@...>
        To: diabetesinsipidus@yahoogroups.com
        Sent: Thursday, February 7, 2013 10:30 AM
        Subject: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
         
        I have DI now for almost 20 years and have managed it fairly well. Recently my sodium was 122 which was cause for alarm with my internist. I told him that I had been peeing all night before this. (up at least 6 times- the sodium blood test was in the AM the next morning fasting) He thinks my sodium level was low due to too much DDAVP and that I was retaining y water. I disagree and believe it was due to not having enough since I was peeing it out. I wonder if this batch of pills was "bad" as I had some other breakthroughs during this time. I have my sodium checked every 6 months and it has been generally fine. This doctor and my endocrinologist have have no other patients with DI. They wanted me to take a smaller dose of DDAVP. I tried that but only had breakthroughs and a lot of peeing which I think would have lowered my sodium again. I took the medicine as I had before and levels are fine after a week with several checks. I am very frustrated by the docs who didn't listen to me. At the end of my discussion with the internist he said he was staring to believe me. Recently I have found low cortisol levels as marked by the AM test and chronic mild microvascular disease as per my latest brain MRI. I'm thinking it's time for a trip to San Francisco (about 3 1/2 hours away) to the pituitary disorder center. I also want to make sure nothing else is wrong and worry a bit about renal deterioration (although it was good enough to have the MRI with contrast) Any thoughts on this?

      • Stephanie Ramsey
        To those dealing with Diabetes Insipidus, I have had DI for 38 years now. I am grateful it is controlled with the DDAVP. Recently I traveled to Mayo Clinic
        Message 3 of 8 , Feb 10 7:45 PM
        • 0 Attachment
          To those dealing with Diabetes Insipidus,
          I have had DI for 38 years now.  I am grateful it is controlled with the DDAVP.  Recently I traveled to Mayo Clinic in Rochester, MN to the endocrine division of doctors there.  they hardly see more than an average of 10 people a year with this rare disease.  The doctors never found a cause for mine and chalked it up as idiopathic...that was also confirmed at Mayo which makes it even more rare.  
          Each of you are in my prayers and if there is anything I can do to help you, please let me know.
          Sincerely,
          Stephanie

          Sent from my iPad

          On Feb 7, 2013, at 4:18 PM, colleen fadollone <aaa_colleen@...> wrote:

           

          No, I have to manage it the best I can because mine is a type they don't know how to treat it, so have gone through life with it and nothing to help me. Good luck to you.
           
          Colleen
           
           

          From: Ruth von Rotz <rvonrotz@...>
          To: diabetesinsipidus@yahoogroups.com
          Sent: Thursday, February 7, 2013 12:38 PM
          Subject: Re: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
           
          Thanks-it looks as though I am going to Palo Alto VA with an endocrine specialist there-hopefull Andrew Hoffman who is also the head of Stanford endocrinology and specializes in pitutary disorders. I'm sorry you had such a rough go as well-It's hard to educate the docs that have no experience in this.  I feel lucky that I have managed the di so well but it was a result of pituitary surgery  that was not needed in the first place!  I will keep Gary Robertson on file.  Hopefully your di is under control. thanks
          On Feb 7, 2013, at 11:13 AM, colleen fadollone wrote:
           

          Hi
           
          I have the same disease and my brother doe's too, None of the doctors would believe us so we went to Chicago to a research doctor glr388@... Dr. Gary Robertson. we stayed there for a week and he agreed we had diabetis insipidus. He even wrote to my doctor and they refused to listen to him, but one of my doctors decided to give me some of the DDAVP which I decided not to take because it does affect your sodium levels, one nigjht I went to get some nose drops and grabbed that in error. I think I took it for a couple of days. I became deathly sick and ended in the hospital for 3 days, I was told I almost died and if I had not come into emergency when I had I would have been dead. I am not sure if you can still get dr Robertson at that email address because he retired a few years back but worth a try, he is a great doctor and will give you some good advice.
           
          Colleen Fadollone.

          From: mtnewe <rvonrotz@...>
          To: diabetesinsipidus@yahoogroups.com
          Sent: Thursday, February 7, 2013 10:30 AM
          Subject: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
           
          I have DI now for almost 20 years and have managed it fairly well. Recently my sodium was 122 which was cause for alarm with my internist. I told him that I had been peeing all night before this. (up at least 6 times- the sodium blood test was in the AM the next morning fasting) He thinks my sodium level was low due to too much DDAVP and that I was retaining y water. I disagree and believe it was due to not having enough since I was peeing it out. I wonder if this batch of pills was "bad" as I had some other breakthroughs during this time. I have my sodium checked every 6 months and it has been generally fine. This doctor and my endocrinologist have have no other patients with DI. They wanted me to take a smaller dose of DDAVP. I tried that but only had breakthroughs and a lot of peeing which I think would have lowered my sodium again. I took the medicine as I had before and levels are fine after a week with several checks. I am very frustrated by the docs who didn't listen to me. At the end of my discussion with the internist he said he was staring to believe me. Recently I have found low cortisol levels as marked by the AM test and chronic mild microvascular disease as per my latest brain MRI. I'm thinking it's time for a trip to San Francisco (about 3 1/2 hours away) to the pituitary disorder center. I also want to make sure nothing else is wrong and worry a bit about renal deterioration (although it was good enough to have the MRI with contrast) Any thoughts on this?

        • Ruth von Rotz
          Stephanie, I am glad that it is under control. Do you take the pill or the spray or than rhinal tube? This is rare.
          Message 4 of 8 , Feb 10 9:59 PM
          • 0 Attachment
            Stephanie, I am glad that it is under control. Do you take the pill or the spray or than rhinal tube? This is rare.

            On Feb 10, 2013, at 7:45 PM, Stephanie Ramsey <pasturesofpraise@...> wrote:

             

            To those dealing with Diabetes Insipidus,
            I have had DI for 38 years now.  I am grateful it is controlled with the DDAVP.  Recently I traveled to Mayo Clinic in Rochester, MN to the endocrine division of doctors there.  they hardly see more than an average of 10 people a year with this rare disease.  The doctors never found a cause for mine and chalked it up as idiopathic...that was also confirmed at Mayo which makes it even more rare.  
            Each of you are in my prayers and if there is anything I can do to help you, please let me know.
            Sincerely,
            Stephanie

            Sent from my iPad

            On Feb 7, 2013, at 4:18 PM, colleen fadollone <aaa_colleen@...> wrote:

             

            No, I have to manage it the best I can because mine is a type they don't know how to treat it, so have gone through life with it and nothing to help me. Good luck to you.
             
            Colleen
             
             

            From: Ruth von Rotz <rvonrotz@...>
            To: diabetesinsipidus@yahoogroups.com
            Sent: Thursday, February 7, 2013 12:38 PM
            Subject: Re: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
             
            Thanks-it looks as though I am going to Palo Alto VA with an endocrine specialist there-hopefull Andrew Hoffman who is also the head of Stanford endocrinology and specializes in pitutary disorders. I'm sorry you had such a rough go as well-It's hard to educate the docs that have no experience in this.  I feel lucky that I have managed the di so well but it was a result of pituitary surgery  that was not needed in the first place!  I will keep Gary Robertson on file.  Hopefully your di is under control. thanks
            On Feb 7, 2013, at 11:13 AM, colleen fadollone wrote:
             

            Hi
             
            I have the same disease and my brother doe's too, None of the doctors would believe us so we went to Chicago to a research doctor glr388@... Dr. Gary Robertson. we stayed there for a week and he agreed we had diabetis insipidus. He even wrote to my doctor and they refused to listen to him, but one of my doctors decided to give me some of the DDAVP which I decided not to take because it does affect your sodium levels, one nigjht I went to get some nose drops and grabbed that in error. I think I took it for a couple of days. I became deathly sick and ended in the hospital for 3 days, I was told I almost died and if I had not come into emergency when I had I would have been dead. I am not sure if you can still get dr Robertson at that email address because he retired a few years back but worth a try, he is a great doctor and will give you some good advice.
             
            Colleen Fadollone.

            From: mtnewe <rvonrotz@...>
            To: diabetesinsipidus@yahoogroups.com
            Sent: Thursday, February 7, 2013 10:30 AM
            Subject: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
             
            I have DI now for almost 20 years and have managed it fairly well. Recently my sodium was 122 which was cause for alarm with my internist. I told him that I had been peeing all night before this. (up at least 6 times- the sodium blood test was in the AM the next morning fasting) He thinks my sodium level was low due to too much DDAVP and that I was retaining y water. I disagree and believe it was due to not having enough since I was peeing it out. I wonder if this batch of pills was "bad" as I had some other breakthroughs during this time. I have my sodium checked every 6 months and it has been generally fine. This doctor and my endocrinologist have have no other patients with DI. They wanted me to take a smaller dose of DDAVP. I tried that but only had breakthroughs and a lot of peeing which I think would have lowered my sodium again. I took the medicine as I had before and levels are fine after a week with several checks. I am very frustrated by the docs who didn't listen to me. At the end of my discussion with the internist he said he was staring to believe me. Recently I have found low cortisol levels as marked by the AM test and chronic mild microvascular disease as per my latest brain MRI. I'm thinking it's time for a trip to San Francisco (about 3 1/2 hours away) to the pituitary disorder center. I also want to make sure nothing else is wrong and worry a bit about renal deterioration (although it was good enough to have the MRI with contrast) Any thoughts on this?

          • Stephanie Ramsey
            Good Morning Ruth, Years ago when I was first diagnosed with DI I used the medication in a spray bottle, tried the shots (they didn t work as well) and for a
            Message 5 of 8 , Feb 11 7:14 AM
            • 0 Attachment
              Good Morning Ruth,
              Years ago when I was first diagnosed with DI I used the medication in a spray bottle, tried the shots (they didn't work as well) and for a number of years used the rhinal tube with medication.  Then about 5 years ago began taking the pill form.... By far this is the best method as no need for refrigeration like before and much easier when traveling.
              Have a good day,
              Stephanie

              Sent from my iPad

              On Feb 10, 2013, at 11:59 PM, Ruth von Rotz <rvonrotz@...> wrote:

               

              Stephanie, I am glad that it is under control. Do you take the pill or the spray or than rhinal tube? This is rare.

              On Feb 10, 2013, at 7:45 PM, Stephanie Ramsey <pasturesofpraise@...> wrote:

               

              To those dealing with Diabetes Insipidus,
              I have had DI for 38 years now.  I am grateful it is controlled with the DDAVP.  Recently I traveled to Mayo Clinic in Rochester, MN to the endocrine division of doctors there.  they hardly see more than an average of 10 people a year with this rare disease.  The doctors never found a cause for mine and chalked it up as idiopathic...that was also confirmed at Mayo which makes it even more rare.  
              Each of you are in my prayers and if there is anything I can do to help you, please let me know.
              Sincerely,
              Stephanie

              Sent from my iPad

              On Feb 7, 2013, at 4:18 PM, colleen fadollone <aaa_colleen@...> wrote:

               

              No, I have to manage it the best I can because mine is a type they don't know how to treat it, so have gone through life with it and nothing to help me. Good luck to you.
               
              Colleen
               
               

              From: Ruth von Rotz <rvonrotz@...>
              To: diabetesinsipidus@yahoogroups.com
              Sent: Thursday, February 7, 2013 12:38 PM
              Subject: Re: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
               
              Thanks-it looks as though I am going to Palo Alto VA with an endocrine specialist there-hopefull Andrew Hoffman who is also the head of Stanford endocrinology and specializes in pitutary disorders. I'm sorry you had such a rough go as well-It's hard to educate the docs that have no experience in this.  I feel lucky that I have managed the di so well but it was a result of pituitary surgery  that was not needed in the first place!  I will keep Gary Robertson on file.  Hopefully your di is under control. thanks
              On Feb 7, 2013, at 11:13 AM, colleen fadollone wrote:
               

              Hi
               
              I have the same disease and my brother doe's too, None of the doctors would believe us so we went to Chicago to a research doctor glr388@... Dr. Gary Robertson. we stayed there for a week and he agreed we had diabetis insipidus. He even wrote to my doctor and they refused to listen to him, but one of my doctors decided to give me some of the DDAVP which I decided not to take because it does affect your sodium levels, one nigjht I went to get some nose drops and grabbed that in error. I think I took it for a couple of days. I became deathly sick and ended in the hospital for 3 days, I was told I almost died and if I had not come into emergency when I had I would have been dead. I am not sure if you can still get dr Robertson at that email address because he retired a few years back but worth a try, he is a great doctor and will give you some good advice.
               
              Colleen Fadollone.

              From: mtnewe <rvonrotz@...>
              To: diabetesinsipidus@yahoogroups.com
              Sent: Thursday, February 7, 2013 10:30 AM
              Subject: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
               
              I have DI now for almost 20 years and have managed it fairly well. Recently my sodium was 122 which was cause for alarm with my internist. I told him that I had been peeing all night before this. (up at least 6 times- the sodium blood test was in the AM the next morning fasting) He thinks my sodium level was low due to too much DDAVP and that I was retaining y water. I disagree and believe it was due to not having enough since I was peeing it out. I wonder if this batch of pills was "bad" as I had some other breakthroughs during this time. I have my sodium checked every 6 months and it has been generally fine. This doctor and my endocrinologist have have no other patients with DI. They wanted me to take a smaller dose of DDAVP. I tried that but only had breakthroughs and a lot of peeing which I think would have lowered my sodium again. I took the medicine as I had before and levels are fine after a week with several checks. I am very frustrated by the docs who didn't listen to me. At the end of my discussion with the internist he said he was staring to believe me. Recently I have found low cortisol levels as marked by the AM test and chronic mild microvascular disease as per my latest brain MRI. I'm thinking it's time for a trip to San Francisco (about 3 1/2 hours away) to the pituitary disorder center. I also want to make sure nothing else is wrong and worry a bit about renal deterioration (although it was good enough to have the MRI with contrast) Any thoughts on this?

            • mtnewe
              Yes, Stephanie the pill is the easiest. I think I got a bad batch of them! This new batch seems to be working fine.
              Message 6 of 8 , Mar 10, 2013
              • 0 Attachment
                Yes, Stephanie the pill is the easiest. I think I got a bad batch of them! This new batch seems to be working fine.

                --- In diabetesinsipidus@yahoogroups.com, Stephanie Ramsey <pasturesofpraise@...> wrote:
                >
                > Good Morning Ruth,
                > Years ago when I was first diagnosed with DI I used the medication in a spray bottle, tried the shots (they didn't work as well) and for a number of years used the rhinal tube with medication. Then about 5 years ago began taking the pill form.... By far this is the best method as no need for refrigeration like before and much easier when traveling.
                > Have a good day,
                > Stephanie
                >
                > Sent from my iPad
                >
                > On Feb 10, 2013, at 11:59 PM, Ruth von Rotz <rvonrotz@...> wrote:
                >
                > > Stephanie, I am glad that it is under control. Do you take the pill or the spray or than rhinal tube? This is rare.
                > >
                > > On Feb 10, 2013, at 7:45 PM, Stephanie Ramsey <pasturesofpraise@...> wrote:
                > >
                > >>
                > >> To those dealing with Diabetes Insipidus,
                > >> I have had DI for 38 years now. I am grateful it is controlled with the DDAVP. Recently I traveled to Mayo Clinic in Rochester, MN to the endocrine division of doctors there. they hardly see more than an average of 10 people a year with this rare disease. The doctors never found a cause for mine and chalked it up as idiopathic...that was also confirmed at Mayo which makes it even more rare.
                > >> Each of you are in my prayers and if there is anything I can do to help you, please let me know.
                > >> Sincerely,
                > >> Stephanie
                > >>
                > >> Sent from my iPad
                > >>
                > >> On Feb 7, 2013, at 4:18 PM, colleen fadollone <aaa_colleen@...> wrote:
                > >>
                > >>>
                > >>> No, I have to manage it the best I can because mine is a type they don't know how to treat it, so have gone through life with it and nothing to help me. Good luck to you.
                > >>>
                > >>> Colleen
                > >>>
                > >>>
                > >>>
                > >>> From: Ruth von Rotz <rvonrotz@...>
                > >>> To: diabetesinsipidus@yahoogroups.com
                > >>> Sent: Thursday, February 7, 2013 12:38 PM
                > >>> Subject: Re: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
                > >>>
                > >>> Thanks-it looks as though I am going to Palo Alto VA with an endocrine specialist there-hopefull Andrew Hoffman who is also the head of Stanford endocrinology and specializes in pitutary disorders. I'm sorry you had such a rough go as well-It's hard to educate the docs that have no experience in this. I feel lucky that I have managed the di so well but it was a result of pituitary surgery that was not needed in the first place! I will keep Gary Robertson on file. Hopefully your di is under control. thanks
                > >>> On Feb 7, 2013, at 11:13 AM, colleen fadollone wrote:
                > >>>>
                > >>>>
                > >>>> Hi
                > >>>>
                > >>>> I have the same disease and my brother doe's too, None of the doctors would believe us so we went to Chicago to a research doctor glr388@... Dr. Gary Robertson. we stayed there for a week and he agreed we had diabetis insipidus. He even wrote to my doctor and they refused to listen to him, but one of my doctors decided to give me some of the DDAVP which I decided not to take because it does affect your sodium levels, one nigjht I went to get some nose drops and grabbed that in error. I think I took it for a couple of days. I became deathly sick and ended in the hospital for 3 days, I was told I almost died and if I had not come into emergency when I had I would have been dead. I am not sure if you can still get dr Robertson at that email address because he retired a few years back but worth a try, he is a great doctor and will give you some good advice.
                > >>>>
                > >>>> Colleen Fadollone.
                > >>>>
                > >>>> From: mtnewe <rvonrotz@...>
                > >>>> To: diabetesinsipidus@yahoogroups.com
                > >>>> Sent: Thursday, February 7, 2013 10:30 AM
                > >>>> Subject: [diabetesinsipidus] diabetesinsipidus breakthru low sodium
                > >>>>
                > >>>> I have DI now for almost 20 years and have managed it fairly well. Recently my sodium was 122 which was cause for alarm with my internist. I told him that I had been peeing all night before this. (up at least 6 times- the sodium blood test was in the AM the next morning fasting) He thinks my sodium level was low due to too much DDAVP and that I was retaining y water. I disagree and believe it was due to not having enough since I was peeing it out. I wonder if this batch of pills was "bad" as I had some other breakthroughs during this time. I have my sodium checked every 6 months and it has been generally fine. This doctor and my endocrinologist have have no other patients with DI. They wanted me to take a smaller dose of DDAVP. I tried that but only had breakthroughs and a lot of peeing which I think would have lowered my sodium again. I took the medicine as I had before and levels are fine after a week with several checks. I am very frustrated by the docs who didn't listen to me. At the end of my discussion with the internist he said he was staring to believe me. Recently I have found low cortisol levels as marked by the AM test and chronic mild microvascular disease as per my latest brain MRI. I'm thinking it's time for a trip to San Francisco (about 3 1/2 hours away) to the pituitary disorder center. I also want to make sure nothing else is wrong and worry a bit about renal deterioration (although it was good enough to have the MRI with contrast) Any thoughts on this?
                > >
                > >
                >
              Your message has been successfully submitted and would be delivered to recipients shortly.