Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Hello there. I am the mother of a 20yr old male who is currently being tested for conns disease. He went into hospital overnight in September for blood tests on the suspicion that he could have either s or Cushings (I'm not sure which) but the bloods came back clear however the 24hr urine test has shown something which could be connected to conns disease. This sample or result from it (I don't know which..........in fact I don't know much at all!) has been sent to an endicronoligist in London (u.k.) and we are now waiting for the results. We were told that this could take approx 4weeks as they are done in batches. My son has been unable to work for the past 18months due to a suspected mental health problem which now they think could have been caused by this disease. He sufferes from depression, acute anxiety, irritability, anger, bad memory. The physical things were passing large amounts of urine, aching muscles, cramps in the limbs, feeling like a young man trapped in an old body! Can anyone relate to these symptoms and what was the outcome and also have you any advice for us. Sometimes I find it very difficult to deal with as I never know how he is going to be on a daily basis. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Was the test sent to UK for GRA? Glucocorticoid remedial aldosteronism - the genetic form of aldosterone overpoduction? Those happen in batches. I cant imagine what other test would take that long. Are you in the UK? They do it at Yale. Did the 24 hr urine show an aldo / renin ratio that was suspicious? Or low potassium? Does he have high blood pressure? The aldo / renin isn't in most blood panels, and has to ordered separately. It is a plasma test, rather than serum, usually. The other symptoms are familiar to myself as a primary aldosteronism patient (bilateral hyperplasia). Now on spironolactone and a low sodium diet, they have disappeared along with hypertension. This was reverted to following an unsuccessful right adrenalectomy - I had the best pre ops, and a 1-cm adenoma, but half the time the surgeries still don't cure the overproduction. They do not have an absolute handle on that yet. Dave On Nov 14, 2005, at 3:46 AM, heather354851 wrote: > Hello there. I am the mother of a 20yr old male who is currently > being tested for conns disease. He went into hospital overnight in > September for blood tests on the suspicion that he could have either > s or Cushings (I'm not sure which) but the bloods came back > clear however the 24hr urine test has shown something which could be > connected to conns disease. This sample or result from it (I don't > know which..........in fact I don't know much at all!) has been sent > to an endicronoligist in London (u.k.) and we are now waiting for > the results. We were told that this could take approx 4weeks as > they are done in batches. > My son has been unable to work for the past 18months due to a > suspected mental health problem which now they think could have been > caused by this disease. He sufferes from depression, acute anxiety, > irritability, anger, bad memory. The physical things were passing > large amounts of urine, aching muscles, cramps in the limbs, feeling > like a young man trapped in an old body! > Can anyone relate to these symptoms and what was the outcome and > also have you any advice for us. > Sometimes I find it very difficult to deal with as I never know how > he is going to be on a daily basis. > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Hi , I know this can be a scarey and frustrating time. I had all of the symptoms your son has prior to my diagnosis and I had several Dr's just tell me my symptoms were stress related and that everyone else in the waiting room probably felt the same way. How is your son's blood pressure? Depression and other mental conditions can be caused by low potassium levels, but they can be caused by a host of other things as well (including just not feeling well). When untreated, my depression manifests itself as extreme frustration and anger. My psychiatrist said we could try getting off the antidepressants once my potassium levels stabilized, but he wasn't real big on the idea as depression can get worse when you discontinue and restart medications. For that reason, I continue to take antidepressant medications. Bad memory definitely is a side effect of low potassium levels. I compare my mental state when I'm hypokalemic to that of an Alzheimer's patient on a slightly better than average day. I'll hold a conversation with you and not remember it five minutes later. Passing large amounts of urine is common with aldosteronism because the kidneys have a hard time concentrating urine. Aching, weak, or cramped muscles are also signs of low potassium. Eating a diet high in potassium with lots of fruits and vegetables (fresh or frozen) and avoiding sodium (watch out for processed foods) might help to alleviate some of those symptoms. heather354851 wrote: > Hello there. I am the mother of a 20yr old male who is currently > being tested for conns disease. He went into hospital overnight in > September for blood tests on the suspicion that he could have either > s or Cushings (I'm not sure which) but the bloods came back > clear however the 24hr urine test has shown something which could be > connected to conns disease. This sample or result from it (I don't > know which..........in fact I don't know much at all!) has been sent > to an endicronoligist in London (u.k.) and we are now waiting for > the results. We were told that this could take approx 4weeks as > they are done in batches. > My son has been unable to work for the past 18months due to a > suspected mental health problem which now they think could have been > caused by this disease. He sufferes from depression, acute anxiety, > irritability, anger, bad memory. The physical things were passing > large amounts of urine, aching muscles, cramps in the limbs, feeling > like a young man trapped in an old body! > Can anyone relate to these symptoms and what was the outcome and > also have you any advice for us. > Sometimes I find it very difficult to deal with as I never know how > he is going to be on a daily basis. > Thanks, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Hi , I know this can be a scarey and frustrating time. I had all of the symptoms your son has prior to my diagnosis and I had several Dr's just tell me my symptoms were stress related and that everyone else in the waiting room probably felt the same way. How is your son's blood pressure? Depression and other mental conditions can be caused by low potassium levels, but they can be caused by a host of other things as well (including just not feeling well). When untreated, my depression manifests itself as extreme frustration and anger. My psychiatrist said we could try getting off the antidepressants once my potassium levels stabilized, but he wasn't real big on the idea as depression can get worse when you discontinue and restart medications. For that reason, I continue to take antidepressant medications. Bad memory definitely is a side effect of low potassium levels. I compare my mental state when I'm hypokalemic to that of an Alzheimer's patient on a slightly better than average day. I'll hold a conversation with you and not remember it five minutes later. Passing large amounts of urine is common with aldosteronism because the kidneys have a hard time concentrating urine. Aching, weak, or cramped muscles are also signs of low potassium. Eating a diet high in potassium with lots of fruits and vegetables (fresh or frozen) and avoiding sodium (watch out for processed foods) might help to alleviate some of those symptoms. heather354851 wrote: > Hello there. I am the mother of a 20yr old male who is currently > being tested for conns disease. He went into hospital overnight in > September for blood tests on the suspicion that he could have either > s or Cushings (I'm not sure which) but the bloods came back > clear however the 24hr urine test has shown something which could be > connected to conns disease. This sample or result from it (I don't > know which..........in fact I don't know much at all!) has been sent > to an endicronoligist in London (u.k.) and we are now waiting for > the results. We were told that this could take approx 4weeks as > they are done in batches. > My son has been unable to work for the past 18months due to a > suspected mental health problem which now they think could have been > caused by this disease. He sufferes from depression, acute anxiety, > irritability, anger, bad memory. The physical things were passing > large amounts of urine, aching muscles, cramps in the limbs, feeling > like a young man trapped in an old body! > Can anyone relate to these symptoms and what was the outcome and > also have you any advice for us. > Sometimes I find it very difficult to deal with as I never know how > he is going to be on a daily basis. > Thanks, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 What is his K. Do others in the family have HTN and low K? Does he eat licorice every day. Get his renin and aldo numbers for us. At a young age he should be evaluated for GRA as well. There are gene tests as well. In a message dated 11/14/05 7:18:39 PM, leslie@... writes: Hi , I know this can be a scarey and frustrating time. I had all of the symptoms your son has prior to my diagnosis and I had several Dr's just tell me my symptoms were stress related and that everyone else in the waiting room probably felt the same way. How is your son's blood pressure? Depression and other mental conditions can be caused by low potassium levels, but they can be caused by a host of other things as well (including just not feeling well). When untreated, my depression manifests itself as extreme frustration and anger. My psychiatrist said we could try getting off the antidepressants once my potassium levels stabilized, but he wasn't real big on the idea as depression can get worse when you discontinue and restart medications. For that reason, I continue to take antidepressant medications. Bad memory definitely is a side effect of low potassium levels. I compare my mental state when I'm hypokalemic to that of an Alzheimer's patient on a slightly better than average day. I'll hold a conversation with you and not remember it five minutes later. Passing large amounts of urine is common with aldosteronism because the kidneys have a hard time concentrating urine. Aching, weak, or cramped muscles are also signs of low potassium. Eating a diet high in potassium with lots of fruits and vegetables (fresh or frozen) and avoiding sodium (watch out for processed foods) might help to alleviate some of those symptoms. heather354851 wrote: > Hello there. I am the mother of a 20yr old male who is currently > being tested for conns disease. He went into hospital overnight in > September for blood tests on the suspicion that he could have either > s or Cushings (I'm not sure which) but the bloods came back > clear however the 24hr urine test has shown something which could be > connected to conns disease. This sample or result from it (I don't > know which..........in fact I don't know much at all!) has been sent > to an endicronoligist in London (u.k.) and we are now waiting for > the results. We were told that this could take approx 4weeks as > they are done in batches. > My son has been unable to work for the past 18months due to a > suspected mental health problem which now they think could have been > caused by this disease. He sufferes from depression, acute anxiety, > irritability, anger, bad memory. The physical things were passing > large amounts of urine, aching muscles, cramps in the limbs, feeling > like a young man trapped in an old body! > Can anyone relate to these symptoms and what was the outcome and > also have you any advice for us. > Sometimes I find it very difficult to deal with as I never know how > he is going to be on a daily basis. > Thanks, May your pressure be low! Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS Clinical Professor of Medicine and Epidemiology Director, Hypertension Diagnosis and Treatment Center Board Certified in Internal Medicine, Geriatrics and Hypertension Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes. Listed in Best Doctors in America Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Does he snore and/or go to sleep during the day when he should not? He might have obstructive sleep apneas-esp if he has a BMI over 30 In a message dated 11/16/05 7:06:11 AM, cheribell65@... writes: >  > >  > Hello there. I am the mother of a 20yr old male who is currently >  > being tested for conns disease. He went into hospital overnight >  in >  > September for blood tests on the suspicion that he could have >  either >  > s or Cushings (I'm not sure which) but the bloods came back >  > clear however the 24hr urine test has shown something which could >  be >  > connected to conns disease. This sample or result from it (I >  don't >  > know which..........in fact I don't know much at all!) has been >  sent >  > to an endicronoligist in London (u.k.) and we are now waiting for >  > the results. We were told that this could take approx 4weeks as >  > they are done in batches. >  > My son has been unable to work for the past 18months due to a >  > suspected mental health problem which now they think could have >  been >  > caused by this disease. He sufferes from depression, acute >  anxiety, >  > irritability, anger, bad memory. The physical things were passing >  > large amounts of urine, aching muscles, cramps in the limbs, >  feeling >  > like a young man trapped in an old body! >  > Can anyone relate to these symptoms and what was the outcome and >  > also have you any advice for us. >  > Sometimes I find it very difficult to deal with as I never know >  how >  > he is going to be on a daily basis. >  > Thanks, >  >Hi , >  My name is Cheri. I am a 40 year old mother of two and have been >  living with hyperaldosteronism for the past 8 years. I >  know how scary this is for you, but once he has a proper diagnosis >  and is on >  the proper dosage of medication he will feel a world better.When I >  was first diagnosed my main symptoms were muscle pain,fatigue, >  extreme thirst,high blood pressure and excessive urination.Most days >  it was hard to just get out of bed and take care of my then two >  young daughters. I don't remember having any >  of the psycological symptoms that your son has. Although I was on >  depression medication at the time of my diagnosis fom a previous >  bout with depression which may have kept the feelings of depression >  at bay for me. I am no longer on depression medication and haven't >  been for the last 6 years. So even though he may need it now, he may >  not always need it. It is completely normal to be depressed when you >  are first dealing with a disease, especially a rare one like this. I >  do not have the tumors on the adrenal glands >  that some people with the disease have. Which means no surgery was >  necessary for me. Living with the disease is not all that difficult >  and I am rarely bothered by it at all. I do have to take daily >  medication,called Aldactone, for it but that is it. It did take some >  time for the doctor to get the dosage right on the medication but >  once he did I felt a world better.I see the doctor once a year for >  check-ups and have blood work done. I don't know if I have helped >  ease your mind, but will gladly talk with you or your son and answer >  any questions you may have. Sometimes it is very helpful to be able >  to talk to someone who has been living with the disease. Good Luck >  to you both. Hang in there it will get better. Please let me know >  how he is doing. > > > > > > >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 > > Hello there. I am the mother of a 20yr old male who is currently > being tested for conns disease. He went into hospital overnight in > September for blood tests on the suspicion that he could have either > s or Cushings (I'm not sure which) but the bloods came back > clear however the 24hr urine test has shown something which could be > connected to conns disease. This sample or result from it (I don't > know which..........in fact I don't know much at all!) has been sent > to an endicronoligist in London (u.k.) and we are now waiting for > the results. We were told that this could take approx 4weeks as > they are done in batches. > My son has been unable to work for the past 18months due to a > suspected mental health problem which now they think could have been > caused by this disease. He sufferes from depression, acute anxiety, > irritability, anger, bad memory. The physical things were passing > large amounts of urine, aching muscles, cramps in the limbs, feeling > like a young man trapped in an old body! > Can anyone relate to these symptoms and what was the outcome and > also have you any advice for us. > Sometimes I find it very difficult to deal with as I never know how > he is going to be on a daily basis. > Thanks, >Hi , My name is Cheri. I am a 40 year old mother of two and have been living with hyperaldosteronism for the past 8 years. I know how scary this is for you, but once he has a proper diagnosis and is on the proper dosage of medication he will feel a world better.When I was first diagnosed my main symptoms were muscle pain,fatigue, extreme thirst,high blood pressure and excessive urination.Most days it was hard to just get out of bed and take care of my then two young daughters. I don't remember having any of the psycological symptoms that your son has. Although I was on depression medication at the time of my diagnosis fom a previous bout with depression which may have kept the feelings of depression at bay for me. I am no longer on depression medication and haven't been for the last 6 years. So even though he may need it now, he may not always need it. It is completely normal to be depressed when you are first dealing with a disease, especially a rare one like this. I do not have the tumors on the adrenal glands that some people with the disease have. Which means no surgery was necessary for me. Living with the disease is not all that difficult and I am rarely bothered by it at all. I do have to take daily medication,called Aldactone, for it but that is it. It did take some time for the doctor to get the dosage right on the medication but once he did I felt a world better.I see the doctor once a year for check-ups and have blood work done. I don't know if I have helped ease your mind, but will gladly talk with you or your son and answer any questions you may have. Sometimes it is very helpful to be able to talk to someone who has been living with the disease. Good Luck to you both. Hang in there it will get better. Please let me know how he is doing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Hi Cheri, thanks so much for your message. Yes, this has been a difficult time and more so because we don't yet know what is properly wrong with Jon. People think that because he looks o.k. that he feels o.k. and that he is "pretending" to be ill. (even his own brother sometimes can't quite believe that he is not a well person) This is very frustrating for him and for me too as it's an awful feeling knowing that people are looking at him, wondering why he is not working, why he becomes irritable, can't sleep, or sleeps during the day. They seem to think that he is lazy but the truth is that he feels like he is trapped within an old mans body! How he would love to be able to get his life back again. (he is missing out on his yourth which you can't recapture!) Soooooooooo it's nice to hear that you have got your life back and without surgery too! It is the waiting and not knowing that is the worst to deal with at the moment as I can't concentrate on anything other than finding out what is wrong and then to try to help Jon to deal with it. This illness has affected our whole family unit and some days is terrible. Still..........there's always hope! Thanks for your words of comfort and for taking the time to contact me, .x Re: New here, need advice please >> Hello there. I am the mother of a 20yr old male who is currently > being tested for conns disease. He went into hospital overnight in > September for blood tests on the suspicion that he could have either > s or Cushings (I'm not sure which) but the bloods came back > clear however the 24hr urine test has shown something which could be > connected to conns disease. This sample or result from it (I don't > know which..........in fact I don't know much at all!) has been sent > to an endicronoligist in London (u.k.) and we are now waiting for > the results. We were told that this could take approx 4weeks as > they are done in batches.> My son has been unable to work for the past 18months due to a > suspected mental health problem which now they think could have been > caused by this disease. He sufferes from depression, acute anxiety, > irritability, anger, bad memory. The physical things were passing > large amounts of urine, aching muscles, cramps in the limbs, feeling > like a young man trapped in an old body!> Can anyone relate to these symptoms and what was the outcome and > also have you any advice for us.> Sometimes I find it very difficult to deal with as I never know how > he is going to be on a daily basis.> Thanks, >Hi ,My name is Cheri. I am a 40 year old mother of two and have been living with hyperaldosteronism for the past 8 years. I know how scary this is for you, but once he has a proper diagnosis and is on the proper dosage of medication he will feel a world better.When I was first diagnosed my main symptoms were muscle pain,fatigue, extreme thirst,high blood pressure and excessive urination.Most days it was hard to just get out of bed and take care of my then two young daughters. I don't remember having any of the psycological symptoms that your son has. Although I was on depression medication at the time of my diagnosis fom a previous bout with depression which may have kept the feelings of depression at bay for me. I am no longer on depression medication and haven't been for the last 6 years. So even though he may need it now, he may not always need it. It is completely normal to be depressed when you are first dealing with a disease, especially a rare one like this. I do not have the tumors on the adrenal glands that some people with the disease have. Which means no surgery was necessary for me. Living with the disease is not all that difficult and I am rarely bothered by it at all. I do have to take daily medication,called Aldactone, for it but that is it. It did take some time for the doctor to get the dosage right on the medication but once he did I felt a world better.I see the doctor once a year for check-ups and have blood work done. I don't know if I have helped ease your mind, but will gladly talk with you or your son and answer any questions you may have. Sometimes it is very helpful to be able to talk to someone who has been living with the disease. Good Luck to you both. Hang in there it will get better. Please let me know how he is doing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 > > > > Hello there. I am the mother of a 20yr old male who is currently > > being tested for conns disease. He went into hospital overnight > in > > September for blood tests on the suspicion that he could have > either > > s or Cushings (I'm not sure which) but the bloods came back > > clear however the 24hr urine test has shown something which could > be > > connected to conns disease. This sample or result from it (I > don't > > know which..........in fact I don't know much at all!) has been > sent > > to an endicronoligist in London (u.k.) and we are now waiting for > > the results. We were told that this could take approx 4weeks as > > they are done in batches. > > My son has been unable to work for the past 18months due to a > > suspected mental health problem which now they think could have > been > > caused by this disease. He sufferes from depression, acute > anxiety, > > irritability, anger, bad memory. The physical things were passing > > large amounts of urine, aching muscles, cramps in the limbs, > feeling > > like a young man trapped in an old body! > > Can anyone relate to these symptoms and what was the outcome and > > also have you any advice for us. > > Sometimes I find it very difficult to deal with as I never know > how > > he is going to be on a daily basis. > > Thanks, > >Hi , > My name is Cheri. I am a 40 year old mother of two and have been > living with hyperaldosteronism for the past 8 years. I > know how scary this is for you, but once he has a proper diagnosis > and is on > the proper dosage of medication he will feel a world better.When I > was first diagnosed my main symptoms were muscle pain,fatigue, > extreme thirst,high blood pressure and excessive urination.Most days > it was hard to just get out of bed and take care of my then two > young daughters. I don't remember having any > of the psycological symptoms that your son has. Although I was on > depression medication at the time of my diagnosis fom a previous > bout with depression which may have kept the feelings of depression > at bay for me. I am no longer on depression medication and haven't > been for the last 6 years. So even though he may need it now, he may > not always need it. It is completely normal to be depressed when you > are first dealing with a disease, especially a rare one like this. I > do not have the tumors on the adrenal glands > that some people with the disease have. Which means no surgery was > necessary for me. Living with the disease is not all that difficult > and I am rarely bothered by it at all. I do have to take daily > medication,called Aldactone, for it but that is it. It did take some > time for the doctor to get the dosage right on the medication but > once he did I felt a world better.I see the doctor once a year for > check-ups and have blood work done. I don't know if I have helped > ease your mind, but will gladly talk with you or your son and answer > any questions you may have. Sometimes it is very helpful to be able > to talk to someone who has been living with the disease. Good Luck > to you both. Hang in there it will get better. Please let me know > how he is doing. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.