Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 If your BP and K are OK on even spiro and no side effects then that is the Rx of choice these days. If you get side effects from Spiro then try Inspra but may need to take 2 x a day and this adds up in costs-if insurance pays that is no problem. So I only do adrenal veins now if BP cannot be controlled or K cannot be controlled or side effects of drugs-or a bump on the adrenal and the above. Dr. Young at Mayo is excellent and has written almost as much as I have about Conn's. I have tlked to him about his experience with Inspra which is greater than mine. Many will need 200 mg per day and may need it 2 x a day-he says. I would have to think a lot about the $$. Tell you Dr. what it is you will have to pay. In a message dated 6/30/04 7:52:49, rjf_at_fts@... writes: I am diagnosed with primary hyperaldosteronism, and bilateral hyperplaysia. Adrenal vein sampling last November was inconclusive because of the right adrenal vein and the usual difficulties with getting to it. I went on Inspra in December and my symptoms have pretty much disappeared, I am doing well on it. My endocrinologist recommended me to Mayo clinic in Rochester, and I am signed up to see Dr Young there in August, to see if we can get a better diagnosis, possibly one-sided and then a possible surgery recommendation. I just found out that my insurance company will only pay for about 60% of my trip to Mayo clinic. That means at least $8,000 out of my pocket just for the vein sampling, and who knows how much more depending on what other tests ar requested, and I don't have that kind of money. I am feeling desperate about this situation - I don't know whether to put myself in debt and get the diagnosis from Mayo, or just live with the drug therapy for life. What are the consequencese of this for me? If I stay on the drug, will my health get worse, will the condition worsen, or can I lead a fairly normal life? If I get the diagnosis and then it determines I could do better with surgery, is surgery really a cure, or just a possible cure and the chances are not that great it would work? I am really in turmoil about this issue. Please respond if you have some advice that can help me. Jim Forsythe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 - Dear Jim: If Inspra works for you, where is the problem? Surgury is risky and can lead to far more side effects, for example, needing drugs for what your adrenal is providing other than aldostrone. Inspra is reversable, you can go off of it or have surgury. If you have surgury, you can't reverse it. Living with meds is a way of life as you get older. They work well most of the time. I was in La Paz a few months ago, and in the square near a church, I noticed that it was a social center. Many Mexicans and their families visiting, mostly middle aged, young, and children. I didn't see any oldsters. The only grey hairs where active senior American touristas. Inspra is probably a good diagnostic tool. It only blocks aldosterone. If your bp is good, and Potassium normal, you a lucky man. I had to wait 5 years for spirolactone, which has unpleasent side effects, and another 3 years for Inspra, which has none. Wayne -- In hyperaldosteronism , " Royden Forsythe " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 What do you mean by 200 mg/2x a day - do you mean that the need for it will increase to that level, or that some people initially need to start at that level? If you mean the need will increase to that level as the body adjusts over time, you are right about the costs... its a costly drug and unless it comes down in cost that would be a lot. Right now I am taking 25mg-1x day and doing well. Jim > If your BP and K are OK on even spiro and no side effects then that is the Rx > of choice these days. If you get side effects from Spiro then try Inspra > but may need to take 2 x a day and this adds up in costs-if insurance pays that > is no problem. > > So I only do adrenal veins now if BP cannot be controlled or K cannot be > controlled or side effects of drugs-or a bump on the adrenal and the above. > > Dr. Young at Mayo is excellent and has written almost as much as I have about > Conn's. I have tlked to him about his experience with Inspra which is > greater than mine. Many will need 200 mg per day and may need it 2 x a day-he > says. > > I would have to think a lot about the $$. > > Tell you Dr. what it is you will have to pay. > In a message dated 6/30/04 7:52:49, rjf_at_fts@y... writes: > > > > I am diagnosed with primary hyperaldosteronism, and bilateral > > hyperplaysia. Adrenal vein sampling last November was inconclusive > > because of the right adrenal vein and the usual difficulties with > > getting to it. I went on Inspra in December and my symptoms have > > pretty much disappeared, I am doing well on it. My endocrinologist > > recommended me to Mayo clinic in Rochester, and I am signed up to see > > Dr Young there in August, to see if we can get a better diagnosis, > > possibly one-sided and then a possible surgery recommendation. > > > > I just found out that my insurance company will only pay for about 60% > > of my trip to Mayo clinic. That means at least $8,000 out of my > > pocket just for the vein sampling, and who knows how much more > > depending on what other tests ar requested, and I don't have that kind > > of money. > > > > I am feeling desperate about this situation - I don't know whether to > > put myself in debt and get the diagnosis from Mayo, or just live with > > the drug therapy for life. What are the consequencese of this for me? > > If I stay on the drug, will my health get worse, will the condition > > worsen, or can I lead a fairly normal life? If I get the diagnosis > > and then it determines I could do better with surgery, is surgery > > really a cure, or just a possible cure and the chances are not that > > great it would work? I am really in turmoil about this issue. Please > > respond if you have some advice that can help me. > > > > Jim Forsythe > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Thanks for the feedback, Wayne. What has been your experience with the drugs? Dr Grim implies that you have to keep increasing dosage and associated costs to keep the body in check. Has that been your experience? Jim > - > Dear Jim: > If Inspra works for you, where is the problem? Surgury is > risky and can lead to far more side effects, for example, needing > drugs for what your adrenal is providing other than aldostrone. > Inspra is reversable, you can go off of it or have surgury. If you > have surgury, you can't reverse it. > Living with meds is a way of life as you get older. They work > well most of the time. I was in La Paz a few months ago, and in the > square near a church, I noticed that it was a social center. Many > Mexicans and their families visiting, mostly middle aged, young, and > children. I didn't see any oldsters. The only grey hairs where > active senior American touristas. > Inspra is probably a good diagnostic tool. It only blocks > aldosterone. If your bp is good, and Potassium normal, you a lucky > man. I had to wait 5 years for spirolactone, which has unpleasent > side effects, and another 3 years for Inspra, which has none. Wayne > > > > > > > > > > > > > > > -- In hyperaldosteronism , " Royden Forsythe " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Jim, What readings did your left adrenal give off? I can personally speak from the other opition. Your screwed both ways so to speak. You have to decide the best route for yourself. If your stable and there are not irritating side effects then I would probobly hang tight, However if it gets complicated and your no longer comfortable on the meds then you can go with the surgery. High BP will kill you but so can low blood pressure. If you wound up with Addsions from the adrenalecomy then you would require daily meds. But from personal experience its not that bad. It can be though when the meds don't work right or when you become ill with another ailment. For my daugter and I sugery was the lesser of two evils. When I was small there were not many BP meds that could be used on me (I was 1 1/2) safely. My daughter had many more options but she was at or above the reccomended doses for a child her age. Even on her meds 6 initally and then 3 following the first surgery she still sustained some minor kidney damage. As it slowley repairs itself (they said it should as she is so young) her BP creeps ever lower. If I can help you as a sounding board about the surgery please let me know. W Follow your gut it is your body. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 , thanks for the honest reply. At first I was all gungho about the issue of getting it diagnosed all the way so that I could make an informed decision. The more I read on the net and hear from others, the more I am wanting to avoid surgery unless necessary. At first I was looking at it as the " cure " for this condition. Now I hear from emedicine.com that 5 years after surgery I have almost a 50% chance of getting high BP again. That plus the other risks of surgery have turned me around about this. My readings for my first sampling were normal on the left adrenal compared to the inferior vena cava, so that was the other reason I was pursuing it, but I also have bilateral hyperplaysia, so who knows if the left side might develop the problem also later on after removal of the right (if the right is even the problem, maybe its secondary hyperaldosteronism?). Its all so complicated, and I have a lot less faith in the medical profession to be able to diagnose than when I first started all this. I really agree with you, screwed both ways - no guarantees in this issue at all, and hard to decide. My gut right now tells me to stay the current course, no more testing, no surgery, wait and see. thanks for your candor, Jim > Jim, > What readings did your left adrenal give off? I can personally speak > from the other opition. Your screwed both ways so to speak. You > have to decide the best route for yourself. If your stable and there > are not irritating side effects then I would probobly hang tight, > However if it gets complicated and your no longer comfortable on the > meds then you can go with the surgery. High BP will kill you but so > can low blood pressure. If you wound up with Addsions from the > adrenalecomy then you would require daily meds. But from personal > experience its not that bad. It can be though when the meds don't > work right or when you become ill with another ailment. For my > daugter and I sugery was the lesser of two evils. When I was small > there were not many BP meds that could be used on me (I was 1 1/2) > safely. My daughter had many more options but she was at or above > the reccomended doses for a child her age. Even on her meds 6 > initally and then 3 following the first surgery she still sustained > some minor kidney damage. As it slowley repairs itself (they said it > should as she is so young) her BP creeps ever lower. If I can help > you as a sounding board about the surgery please let me know. > W Follow your gut it is your body. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 But keep the BP and K under control. In a message dated 7/1/2004 8:32:08 AM Eastern Daylight Time, " Royden Forsythe " <rjf_at_fts@...> writes: >, thanks for the honest reply. At first I was all gungho about >the issue of getting it diagnosed all the way so that I could make an >informed decision. The more I read on the net and hear from others, >the more I am wanting to avoid surgery unless necessary. At first I >was looking at it as the " cure " for this condition. Now I hear from >emedicine.com that 5 years after surgery I have almost a 50% chance of >getting high BP again. That plus the other risks of surgery have >turned me around about this. My readings for my first sampling were >normal on the left adrenal compared to the inferior vena cava, so that >was the other reason I was pursuing it, but I also have bilateral >hyperplaysia, so who knows if the left side might develop the problem >also later on after removal of the right (if the right is even the >problem, maybe its secondary hyperaldosteronism?). Its all so >complicated, and I have a lot less faith in the medical profession to >be able to diagnose than when I first started all this. I really >agree with you, screwed both ways - no guarantees in this issue at >all, and hard to decide. My gut right now tells me to stay the >current course, no more testing, no surgery, wait and see. > >thanks for your candor, >Jim > > >> Jim, >> What readings did your left adrenal give off? I can personally speak >> from the other opition. Your screwed both ways so to speak. You >> have to decide the best route for yourself. If your stable and there >> are not irritating side effects then I would probobly hang tight, >> However if it gets complicated and your no longer comfortable on the >> meds then you can go with the surgery. High BP will kill you but so >> can low blood pressure. If you wound up with Addsions from the >> adrenalecomy then you would require daily meds. But from personal >> experience its not that bad. It can be though when the meds don't >> work right or when you become ill with another ailment. For my >> daugter and I sugery was the lesser of two evils. When I was small >> there were not many BP meds that could be used on me (I was 1 1/2) >> safely. My daughter had many more options but she was at or above >> the reccomended doses for a child her age. Even on her meds 6 >> initally and then 3 following the first surgery she still sustained >> some minor kidney damage. As it slowley repairs itself (they said it >> should as she is so young) her BP creeps ever lower. If I can help >> you as a sounding board about the surgery please let me know. >> W Follow your gut it is your body. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 Dear Jim: On spiro I actually had to eliminate some meds. Norvasc, for example, and cut back on Accupril. Spiro worked for 2 years without change in dosage. This was not true with normal blood pressure meds. With time my body would seem to adapt, and higher and higher doseages has a declining effect. Then I'd have try some new one. I've only been on Inspra for 6 months, and the 50 mg/day seem to be fine. BP about 125/85. Potassium is fine. But best of all-no side effects, as I had with Spirolactone. I understand as much as 200 mg/day of Inspra can be taken. If you are not controlled on that, then surgury is probably the best choise. Wayne > > - > > Dear Jim: > > If Inspra works for you, where is the problem? Surgury is > > risky and can lead to far more side effects, for example, needing > > drugs for what your adrenal is providing other than aldostrone. > > Inspra is reversable, you can go off of it or have surgury. If you > > have surgury, you can't reverse it. > > Living with meds is a way of life as you get older. They work > > well most of the time. I was in La Paz a few months ago, and in the > > square near a church, I noticed that it was a social center. Many > > Mexicans and their families visiting, mostly middle aged, young, and > > children. I didn't see any oldsters. The only grey hairs where > > active senior American touristas. > > Inspra is probably a good diagnostic tool. It only blocks > > aldosterone. If your bp is good, and Potassium normal, you a lucky > > man. I had to wait 5 years for spirolactone, which has unpleasent > > side effects, and another 3 years for Inspra, which has none. Wayne > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- In hyperaldosteronism , " Royden Forsythe " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 Dear Jim: On spiro I actually had to eliminate some meds. Norvasc, for example, and cut back on Accupril. Spiro worked for 2 years without change in dosage. This was not true with normal blood pressure meds. With time my body would seem to adapt, and higher and higher doseages has a declining effect. Then I'd have try some new one. I've only been on Inspra for 6 months, and the 50 mg/day seem to be fine. BP about 125/85. Potassium is fine. But best of all-no side effects, as I had with Spirolactone. I understand as much as 200 mg/day of Inspra can be taken. If you are not controlled on that, then surgury is probably the best choise. Wayne > > - > > Dear Jim: > > If Inspra works for you, where is the problem? Surgury is > > risky and can lead to far more side effects, for example, needing > > drugs for what your adrenal is providing other than aldostrone. > > Inspra is reversable, you can go off of it or have surgury. If you > > have surgury, you can't reverse it. > > Living with meds is a way of life as you get older. They work > > well most of the time. I was in La Paz a few months ago, and in the > > square near a church, I noticed that it was a social center. Many > > Mexicans and their families visiting, mostly middle aged, young, and > > children. I didn't see any oldsters. The only grey hairs where > > active senior American touristas. > > Inspra is probably a good diagnostic tool. It only blocks > > aldosterone. If your bp is good, and Potassium normal, you a lucky > > man. I had to wait 5 years for spirolactone, which has unpleasent > > side effects, and another 3 years for Inspra, which has none. Wayne > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- In hyperaldosteronism , " Royden Forsythe " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 Some may need 200 bid. But sounds like you are doning very well on only 25. Keep up the good work. Although I have not heard of anyone commenging on a need to continuely incresae the dose I have not seen that. Indeed many will need large doses at first (up to 400 spiro) and then can be tapered down to only 25 esp if they do the DASH diet. In a message dated 6/30/2004 4:45:53 PM Eastern Daylight Time, " Royden Forsythe " <rjf_at_fts@...> writes: >What do you mean by 200 mg/2x a day - do you mean that the need for it >will increase to that level, or that some people initially need to >start at that level?  If you mean the need will increase to that level >as the body adjusts over time, you are right about the costs... its a >costly drug and unless it comes down in cost that would be a lot. >Right now I am taking 25mg-1x day and doing well. > >Jim > > >> If your BP and K are OK on even spiro and no side effects then that >is the Rx >> of choice these days.  If you get side effects from Spiro then try >Inspra >> but may need to take 2 x a day and this adds up in costs-if >insurance pays that >> is no problem. >> >> So I only do adrenal veins now if BP cannot be controlled or K >cannot be >> controlled or side effects of drugs-or a bump on the adrenal and the >above. >> >> Dr. Young at Mayo is excellent and has written almost as much as I >have about >> Conn's.  I have tlked to him about his experience with Inspra which is >> greater than mine.  Many will need 200 mg per day and may need it 2 >x a day-he >> says. >> >> I would have to think a lot about the $$. >> >> Tell you Dr. what it is you will have to pay. >> In a message dated 6/30/04 7:52:49, rjf_at_fts@y... writes: >> >> >> > I am diagnosed with primary hyperaldosteronism, and bilateral >> > hyperplaysia.  Adrenal vein sampling last November was inconclusive >> > because of the right adrenal vein and the usual difficulties with >> > getting to it.  I went on Inspra in December and my symptoms have >> > pretty much disappeared, I am doing well on it.  My endocrinologist >> > recommended me to Mayo clinic in Rochester, and I am signed up to see >> > Dr Young there in August, to see if we can get a better diagnosis, >> > possibly one-sided and then a possible surgery recommendation. >> > >> > I just found out that my insurance company will only pay for about 60% >> > of my trip to Mayo clinic.  That means at least $8,000 out of my >> > pocket just for the vein sampling, and who knows how much more >> > depending on what other tests ar requested, and I don't have that kind >> > of money. >> > >> > I am feeling desperate about this situation - I don't know whether to >> > put myself in debt and get the diagnosis from Mayo, or just live with >> > the drug therapy for life.  What are the consequencese of this >for me? >> > If I stay on the drug, will my health get worse, will the condition >> > worsen, or can I lead a fairly normal life?  If I get the diagnosis >> > and then it determines I could do better with surgery, is surgery >> > really a cure, or just a possible cure and the chances are not that >> > great it would work?  I am really in turmoil about this issue. >Please >> > respond if you have some advice that can help me. >> > >> > Jim Forsythe >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 Some may need 200 bid. But sounds like you are doning very well on only 25. Keep up the good work. Although I have not heard of anyone commenging on a need to continuely incresae the dose I have not seen that. Indeed many will need large doses at first (up to 400 spiro) and then can be tapered down to only 25 esp if they do the DASH diet. In a message dated 6/30/2004 4:45:53 PM Eastern Daylight Time, " Royden Forsythe " <rjf_at_fts@...> writes: >What do you mean by 200 mg/2x a day - do you mean that the need for it >will increase to that level, or that some people initially need to >start at that level?  If you mean the need will increase to that level >as the body adjusts over time, you are right about the costs... its a >costly drug and unless it comes down in cost that would be a lot. >Right now I am taking 25mg-1x day and doing well. > >Jim > > >> If your BP and K are OK on even spiro and no side effects then that >is the Rx >> of choice these days.  If you get side effects from Spiro then try >Inspra >> but may need to take 2 x a day and this adds up in costs-if >insurance pays that >> is no problem. >> >> So I only do adrenal veins now if BP cannot be controlled or K >cannot be >> controlled or side effects of drugs-or a bump on the adrenal and the >above. >> >> Dr. Young at Mayo is excellent and has written almost as much as I >have about >> Conn's.  I have tlked to him about his experience with Inspra which is >> greater than mine.  Many will need 200 mg per day and may need it 2 >x a day-he >> says. >> >> I would have to think a lot about the $$. >> >> Tell you Dr. what it is you will have to pay. >> In a message dated 6/30/04 7:52:49, rjf_at_fts@y... writes: >> >> >> > I am diagnosed with primary hyperaldosteronism, and bilateral >> > hyperplaysia.  Adrenal vein sampling last November was inconclusive >> > because of the right adrenal vein and the usual difficulties with >> > getting to it.  I went on Inspra in December and my symptoms have >> > pretty much disappeared, I am doing well on it.  My endocrinologist >> > recommended me to Mayo clinic in Rochester, and I am signed up to see >> > Dr Young there in August, to see if we can get a better diagnosis, >> > possibly one-sided and then a possible surgery recommendation. >> > >> > I just found out that my insurance company will only pay for about 60% >> > of my trip to Mayo clinic.  That means at least $8,000 out of my >> > pocket just for the vein sampling, and who knows how much more >> > depending on what other tests ar requested, and I don't have that kind >> > of money. >> > >> > I am feeling desperate about this situation - I don't know whether to >> > put myself in debt and get the diagnosis from Mayo, or just live with >> > the drug therapy for life.  What are the consequencese of this >for me? >> > If I stay on the drug, will my health get worse, will the condition >> > worsen, or can I lead a fairly normal life?  If I get the diagnosis >> > and then it determines I could do better with surgery, is surgery >> > really a cure, or just a possible cure and the chances are not that >> > great it would work?  I am really in turmoil about this issue. >Please >> > respond if you have some advice that can help me. >> > >> > Jim Forsythe >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Agreed, and I implied that in what I was saying. In my diet I am keeping salt down, K up, and exercising 30 minutes minimum daily. Question for you Dr Grim: my K seems stable right now - how often should I get it checked? Jim > >> Jim, > >> What readings did your left adrenal give off? I can personally speak > >> from the other opition. Your screwed both ways so to speak. You > >> have to decide the best route for yourself. If your stable and there > >> are not irritating side effects then I would probobly hang tight, > >> However if it gets complicated and your no longer comfortable on the > >> meds then you can go with the surgery. High BP will kill you but so > >> can low blood pressure. If you wound up with Addsions from the > >> adrenalecomy then you would require daily meds. But from personal > >> experience its not that bad. It can be though when the meds don't > >> work right or when you become ill with another ailment. For my > >> daugter and I sugery was the lesser of two evils. When I was small > >> there were not many BP meds that could be used on me (I was 1 1/2) > >> safely. My daughter had many more options but she was at or above > >> the reccomended doses for a child her age. Even on her meds 6 > >> initally and then 3 following the first surgery she still sustained > >> some minor kidney damage. As it slowley repairs itself (they said it > >> should as she is so young) her BP creeps ever lower. If I can help > >> you as a sounding board about the surgery please let me know. > >> W Follow your gut it is your body. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Agreed, and I implied that in what I was saying. In my diet I am keeping salt down, K up, and exercising 30 minutes minimum daily. Question for you Dr Grim: my K seems stable right now - how often should I get it checked? Jim > >> Jim, > >> What readings did your left adrenal give off? I can personally speak > >> from the other opition. Your screwed both ways so to speak. You > >> have to decide the best route for yourself. If your stable and there > >> are not irritating side effects then I would probobly hang tight, > >> However if it gets complicated and your no longer comfortable on the > >> meds then you can go with the surgery. High BP will kill you but so > >> can low blood pressure. If you wound up with Addsions from the > >> adrenalecomy then you would require daily meds. But from personal > >> experience its not that bad. It can be though when the meds don't > >> work right or when you become ill with another ailment. For my > >> daugter and I sugery was the lesser of two evils. When I was small > >> there were not many BP meds that could be used on me (I was 1 1/2) > >> safely. My daughter had many more options but she was at or above > >> the reccomended doses for a child her age. Even on her meds 6 > >> initally and then 3 following the first surgery she still sustained > >> some minor kidney damage. As it slowley repairs itself (they said it > >> should as she is so young) her BP creeps ever lower. If I can help > >> you as a sounding board about the surgery please let me know. > >> W Follow your gut it is your body. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 Thanks for the feedback, its always good to hear others experience. Jim > Dear Jim: > On spiro I actually had to eliminate some meds. Norvasc, for > example, and cut back on Accupril. Spiro worked for 2 years without > change in dosage. This was not true with normal blood pressure > meds. With time my body would seem to adapt, and higher and higher > doseages has a declining effect. Then I'd have try some new one. > I've only been on Inspra for 6 months, and the 50 mg/day seem to > be fine. BP about 125/85. Potassium is fine. But best of all-no > side effects, as I had with Spirolactone. > I understand as much as 200 mg/day of Inspra can be taken. If > you are not controlled on that, then surgury is probably the best > choise. Wayne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 I like this quote: W Follow your gut it is your body. and would like to add. What goes in your gut becomes your body. CE Grim MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Hi Jim, My story is similar to yours - I have bilateral lesions and the typical right side problems made vein sampling inconclusive. When first diagnosed, I was on 200 mg of Spiro and 80 meq's of K daily. I'm now down to 25 mg. of Spiro and 60 meq's of K. I also lost a significant amount of weight (at least 60 pounds since diagnosed), and I'm sure that contributed to my blood pressure lowering some on it's own. I think the advice you've gotten so far is good, just wanted to let you know that you're not alone out there. I'm desperate! I am diagnosed with primary hyperaldosteronism, and bilateralhyperplaysia. Adrenal vein sampling last November was inconclusivebecause of the right adrenal vein and the usual difficulties withgetting to it. I went on Inspra in December and my symptoms havepretty much disappeared, I am doing well on it. My endocrinologistrecommended me to Mayo clinic in Rochester, and I am signed up to seeDr Young there in August, to see if we can get a better diagnosis,possibly one-sided and then a possible surgery recommendation.I just found out that my insurance company will only pay for about 60%of my trip to Mayo clinic. That means at least $8,000 out of mypocket just for the vein sampling, and who knows how much moredepending on what other tests ar requested, and I don't have that kindof money.I am feeling desperate about this situation - I don't know whether toput myself in debt and get the diagnosis from Mayo, or just live withthe drug therapy for life. What are the consequencese of this for me?If I stay on the drug, will my health get worse, will the conditionworsen, or can I lead a fairly normal life? If I get the diagnosisand then it determines I could do better with surgery, is surgeryreally a cure, or just a possible cure and the chances are not thatgreat it would work? I am really in turmoil about this issue. Pleaserespond if you have some advice that can help me.Jim Forsythe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Where do you live? In a message dated 7/10/2004 6:33:03 AM Eastern Daylight Time, " M. " <leslie@...> writes: >Hi Jim, > >My story is similar to yours - I have bilateral lesions and the typical right side problems made vein sampling inconclusive. When first diagnosed, I was on 200 mg of Spiro and 80 meq's of K daily. I'm now down to 25 mg. of Spiro and 60 meq's of K. I also lost a significant amount of weight (at least 60 pounds since diagnosed), and I'm sure that contributed to my blood pressure lowering some on it's own. I think the advice you've gotten so far is good, just wanted to let you know that you're not alone out there. > > > I'm desperate! > > > I am diagnosed with primary hyperaldosteronism, and bilateral > hyperplaysia. Adrenal vein sampling last November was inconclusive > because of the right adrenal vein and the usual difficulties with > getting to it. I went on Inspra in December and my symptoms have > pretty much disappeared, I am doing well on it. My endocrinologist > recommended me to Mayo clinic in Rochester, and I am signed up to see > Dr Young there in August, to see if we can get a better diagnosis, > possibly one-sided and then a possible surgery recommendation. > > I just found out that my insurance company will only pay for about 60% > of my trip to Mayo clinic. That means at least $8,000 out of my > pocket just for the vein sampling, and who knows how much more > depending on what other tests ar requested, and I don't have that kind > of money. > > I am feeling desperate about this situation - I don't know whether to > put myself in debt and get the diagnosis from Mayo, or just live with > the drug therapy for life. What are the consequencese of this for me? > If I stay on the drug, will my health get worse, will the condition > worsen, or can I lead a fairly normal life? If I get the diagnosis > and then it determines I could do better with surgery, is surgery > really a cure, or just a possible cure and the chances are not that > great it would work? I am really in turmoil about this issue. Please > respond if you have some advice that can help me. > > Jim Forsythe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 I'm in Hartland, about a half hour from downtown Milwaukee, WI. I'm desperate!>>> I am diagnosed with primary hyperaldosteronism, and bilateral> hyperplaysia. Adrenal vein sampling last November was inconclusive> because of the right adrenal vein and the usual difficulties with> getting to it. I went on Inspra in December and my symptoms have> pretty much disappeared, I am doing well on it. My endocrinologist> recommended me to Mayo clinic in Rochester, and I am signed up to see> Dr Young there in August, to see if we can get a better diagnosis,> possibly one-sided and then a possible surgery recommendation.>> I just found out that my insurance company will only pay for about 60%> of my trip to Mayo clinic. That means at least $8,000 out of my> pocket just for the vein sampling, and who knows how much more> depending on what other tests ar requested, and I don't have that kind> of money.>> I am feeling desperate about this situation - I don't know whether to> put myself in debt and get the diagnosis from Mayo, or just live with> the drug therapy for life. What are the consequencese of this for me?> If I stay on the drug, will my health get worse, will the condition> worsen, or can I lead a fairly normal life? If I get the diagnosis> and then it determines I could do better with surgery, is surgery> really a cure, or just a possible cure and the chances are not that> great it would work? I am really in turmoil about this issue. Please> respond if you have some advice that can help me.>> Jim Forsythe>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 I was going to recommend a local speicalist for you to see but since you are in Milwaukee I know I can find one for you. Who are you seeing now? In a message dated 7/11/2004 10:05:40 PM Eastern Daylight Time, " M. " <leslie@...> writes: >I'm in Hartland, about a half hour from downtown Milwaukee, WI. > I'm desperate! > > > > > > I am diagnosed with primary hyperaldosteronism, and bilateral > > hyperplaysia. Adrenal vein sampling last November was inconclusive > > because of the right adrenal vein and the usual difficulties with > > getting to it. I went on Inspra in December and my symptoms have > > pretty much disappeared, I am doing well on it. My endocrinologist > > recommended me to Mayo clinic in Rochester, and I am signed up to see > > Dr Young there in August, to see if we can get a better diagnosis, > > possibly one-sided and then a possible surgery recommendation. > > > > I just found out that my insurance company will only pay for about 60% > > of my trip to Mayo clinic. That means at least $8,000 out of my > > pocket just for the vein sampling, and who knows how much more > > depending on what other tests ar requested, and I don't have that kind > > of money. > > > > I am feeling desperate about this situation - I don't know whether to > > put myself in debt and get the diagnosis from Mayo, or just live with > > the drug therapy for life. What are the consequencese of this for me? > > If I stay on the drug, will my health get worse, will the condition > > worsen, or can I lead a fairly normal life? If I get the diagnosis > > and then it determines I could do better with surgery, is surgery > > really a cure, or just a possible cure and the chances are not that > > great it would work? I am really in turmoil about this issue. Please > > respond if you have some advice that can help me. > > > > Jim Forsythe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Actually, I wasn't looking for a specialist (I was just responding to another comment about them in general), but since you offered.... :-) I'm not seeing anyone specifically for my PA - once I was diagnosed and surgery was ruled out as an alternative, I wasn't given any instructions for follow-up care (I did specifically ask if the tumors should be rechecked on occasssion for changes, but didn't get a definite answer). What I mean by that is that my K is checked every few months, but any adjustments to K or Spiro doses are initiated at my request. I monitor my own BP at home. My primary care Dr. (Dr. Thiru in Waukesha) continues writing the prescriptions as needed (she also has asked if I knew what other follow up should be done). Dr. Dembski in Waukesha is my nephrologist, he continues to see me on occassion for K and BP checks, but isn't specifically following up on the PA. ly, the only reason I see both is for back-up should I have a question or need a refill when one is unavailable. The endo. that ordered the tests and did the final diagnosis was Dr. Crelin, also in Waukesha (I work in Waukesha). I haven't actively seen him since the diagnosis, but I had initiated a call with him to find out if I should get another CT scan to follow-up up since it has been over a year since they saw the tumors. I haven't scheduled it yet, but figured I might as well have it looked at together with an abdominal CT scan that my primary care Dr. recommended to look at what we think is a chronic abdominal muscle spasm that has been bothering me for a few years and continues to get worse. I'd like to try Inspra, but don't know that any of these Dr.'s would be that interested in experimenting. I also have other questions, like the one I posted the other day about excess aldosterone being cardiotoxic that I would like to discuss with someone more knowledgeable. -- Original Message ----- From: lowerbp2@... hyperaldosteronism Sent: Sunday, July 11, 2004 9:20 PM Subject: Re: I'm desperate! I was going to recommend a local speicalist for you to see but since you are in Milwaukee I know I can find one for you. Who are you seeing now?In a message dated 7/11/2004 10:05:40 PM Eastern Daylight Time, " M." <leslie@...> writes:>I'm in Hartland, about a half hour from downtown Milwaukee, WI.> I'm desperate!> >> >> > I am diagnosed with primary hyperaldosteronism, and bilateral> > hyperplaysia. Adrenal vein sampling last November was inconclusive> > because of the right adrenal vein and the usual difficulties with> > getting to it. I went on Inspra in December and my symptoms have> > pretty much disappeared, I am doing well on it. My endocrinologist> > recommended me to Mayo clinic in Rochester, and I am signed up to see> > Dr Young there in August, to see if we can get a better diagnosis,> > possibly one-sided and then a possible surgery recommendation.> >> > I just found out that my insurance company will only pay for about 60%> > of my trip to Mayo clinic. That means at least $8,000 out of my> > pocket just for the vein sampling, and who knows how much more> > depending on what other tests ar requested, and I don't have that kind> > of money.> >> > I am feeling desperate about this situation - I don't know whether to> > put myself in debt and get the diagnosis from Mayo, or just live with> > the drug therapy for life. What are the consequencese of this for me?> > If I stay on the drug, will my health get worse, will the condition> > worsen, or can I lead a fairly normal life? If I get the diagnosis> > and then it determines I could do better with surgery, is surgery> > really a cure, or just a possible cure and the chances are not that> > great it would work? I am really in turmoil about this issue. Please> > respond if you have some advice that can help me.> >> > Jim Forsythe> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 I would be happy to see you as a patient to discss and manage the PA. This is on of my areas of expertise. Don't know what your ins coverage is to see me at St. Micheal's. In a message dated 7/11/2004 11:07:05 PM Eastern Daylight Time, " " <leslie@...> writes: >Actually, I wasn't looking for a specialist (I was just responding to another comment about them in general), but since you offered.... :-) > >I'm not seeing anyone specifically for my PA - once I was diagnosed and surgery was ruled out as an alternative, I wasn't given any instructions for follow-up care (I did specifically ask if the tumors should be rechecked on occasssion for changes, but didn't get a definite answer). What I mean by that is that my K is checked every few months, but any adjustments to K or Spiro doses are initiated at my request. I monitor my own BP at home. My primary care Dr. (Dr. Thiru in Waukesha) continues writing the prescriptions as needed (she also has asked if I knew what other follow up should be done). Dr. Dembski in Waukesha is my nephrologist, he continues to see me on occassion for K and BP checks, but isn't specifically following up on the PA. ly, the only reason I see both is for back-up should I have a question or need a refill when one is unavailable. The endo. that ordered the tests and did the final diagnosis was Dr. Crelin, also in Waukesha (I work in Waukesha). I haven't actively seen him since the diagnosis, but I had initiated a call with him to find out if I should get another CT scan to follow-up up since it has been over a year since they saw the tumors. I haven't scheduled it yet, but figured I might as well have it looked at together with an abdominal CT scan that my primary care Dr. recommended to look at what we think is a chronic abdominal muscle spasm that has been bothering me for a few years and continues to get worse. I'd like to try Inspra, but don't know that any of these Dr.'s would be that interested in experimenting. I also have other questions, like the one I posted the other day about excess aldosterone being cardiotoxic that I would like to discuss with someone more knowledgeable. > > > >-- Original Message ----- > From: lowerbp2@... > hyperaldosteronism > Sent: Sunday, July 11, 2004 9:20 PM > Subject: Re: I'm desperate! > > > I was going to recommend a local speicalist for you to see but since you are in Milwaukee I know I can find one for you. Who are you seeing now? > > In a message dated 7/11/2004 10:05:40 PM Eastern Daylight Time, " M. " <leslie@...> writes: > > >I'm in Hartland, about a half hour from downtown Milwaukee, WI. > > I'm desperate! > > > > > > > > > I am diagnosed with primary hyperaldosteronism, and bilateral > > > hyperplaysia. Adrenal vein sampling last November was inconclusive > > > because of the right adrenal vein and the usual difficulties with > > > getting to it. I went on Inspra in December and my symptoms have > > > pretty much disappeared, I am doing well on it. My endocrinologist > > > recommended me to Mayo clinic in Rochester, and I am signed up to see > > > Dr Young there in August, to see if we can get a better diagnosis, > > > possibly one-sided and then a possible surgery recommendation. > > > > > > I just found out that my insurance company will only pay for about 60% > > > of my trip to Mayo clinic. That means at least $8,000 out of my > > > pocket just for the vein sampling, and who knows how much more > > > depending on what other tests ar requested, and I don't have that kind > > > of money. > > > > > > I am feeling desperate about this situation - I don't know whether to > > > put myself in debt and get the diagnosis from Mayo, or just live with > > > the drug therapy for life. What are the consequencese of this for me? > > > If I stay on the drug, will my health get worse, will the condition > > > worsen, or can I lead a fairly normal life? If I get the diagnosis > > > and then it determines I could do better with surgery, is surgery > > > really a cure, or just a possible cure and the chances are not that > > > great it would work? I am really in turmoil about this issue. Please > > > respond if you have some advice that can help me. > > > > > > Jim Forsythe > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Blue Cross / Blue Shield PPO I'm desperate!> > >> > >> > > I am diagnosed with primary hyperaldosteronism, and bilateral> > > hyperplaysia. Adrenal vein sampling last November was inconclusive> > > because of the right adrenal vein and the usual difficulties with> > > getting to it. I went on Inspra in December and my symptoms have> > > pretty much disappeared, I am doing well on it. My endocrinologist> > > recommended me to Mayo clinic in Rochester, and I am signed up to see> > > Dr Young there in August, to see if we can get a better diagnosis,> > > possibly one-sided and then a possible surgery recommendation.> > >> > > I just found out that my insurance company will only pay for about 60%> > > of my trip to Mayo clinic. That means at least $8,000 out of my> > > pocket just for the vein sampling, and who knows how much more> > > depending on what other tests ar requested, and I don't have that kind> > > of money.> > >> > > I am feeling desperate about this situation - I don't know whether to> > > put myself in debt and get the diagnosis from Mayo, or just live with> > > the drug therapy for life. What are the consequencese of this for me?> > > If I stay on the drug, will my health get worse, will the condition> > > worsen, or can I lead a fairly normal life? If I get the diagnosis> > > and then it determines I could do better with surgery, is surgery> > > really a cure, or just a possible cure and the chances are not that> > > great it would work? I am really in turmoil about this issue. Please> > > respond if you have some advice that can help me.> > >> > > Jim Forsythe> > >> > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 That should give you good coverage. Would need to get all labs and reports from other hosptials. In a message dated 7/12/2004 1:07:43 AM Eastern Daylight Time, " " <leslie@...> writes: >Blue Cross / Blue Shield PPO > I'm desperate! > > > > > > > > > > > > I am diagnosed with primary hyperaldosteronism, and bilateral > > > > hyperplaysia. Adrenal vein sampling last November was inconclusive > > > > because of the right adrenal vein and the usual difficulties with > > > > getting to it. I went on Inspra in December and my symptoms have > > > > pretty much disappeared, I am doing well on it. My endocrinologist > > > > recommended me to Mayo clinic in Rochester, and I am signed up to see > > > > Dr Young there in August, to see if we can get a better diagnosis, > > > > possibly one-sided and then a possible surgery recommendation. > > > > > > > > I just found out that my insurance company will only pay for about 60% > > > > of my trip to Mayo clinic. That means at least $8,000 out of my > > > > pocket just for the vein sampling, and who knows how much more > > > > depending on what other tests ar requested, and I don't have that kind > > > > of money. > > > > > > > > I am feeling desperate about this situation - I don't know whether to > > > > put myself in debt and get the diagnosis from Mayo, or just live with > > > > the drug therapy for life. What are the consequencese of this for me? > > > > If I stay on the drug, will my health get worse, will the condition > > > > worsen, or can I lead a fairly normal life? If I get the diagnosis > > > > and then it determines I could do better with surgery, is surgery > > > > really a cure, or just a possible cure and the chances are not that > > > > great it would work? I am really in turmoil about this issue. Please > > > > respond if you have some advice that can help me. > > > > > > > > Jim Forsythe > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 It would depend on your biochemistry tests (renin and aldo) and how much trouble you are having controlling your BP. My next step, if not controlled, would be to have adrenal vein smapling done under ACTH stimuations by someone who does a lot of them. May your pressure be low! Clarence E. Grim, BS, MS, MD, FACP, FACC Professor of Medicine and Epidemiology Board Certified in Internal Medicine, Geriatrics and Hypertension Focusing on difficult to control high blood pressure and high cholesterol especially in the African Diaspora “Of all the forms of injustice, inequality in health is the most shocking and inhumanâ€: Dr. Luther King, Jr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 PS some tumors can be less than 5 mm indiameter so a 5 mm scan may miss one--bbut wouild not repeat-if BP or K cannot be controlled with you feeling well then adrenal vein sampling is the final test you need. May your pressure be low! Clarence E. Grim, BS, MS, MD, FACP, FACC Professor of Medicine and Epidemiology Board Certified in Internal Medicine, Geriatrics and Hypertension Focusing on difficult to control high blood pressure and high cholesterol especially in the African Diaspora “Of all the forms of injustice, inequality in health is the most shocking and inhumanâ€: Dr. Luther King, Jr. Quote Link to comment Share on other sites More sharing options...
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