Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 I'm seeing a knee doc this morning. You are correct about the swelling. Mine is much worse when I'm retaining water. I'm getting it addressed because it seems to be causing spasms in my back/hip and walking is difficult. I've fallen a few times in the last year because I drag my other foot to avoid putting too much pressure on the bad knee. ita, I understand your symptoms. When I went off spiro for six weeks, I had terrible crying jags. I am hot all the time - day and night I break out in sweats, then get very cold. The sweats got a little better toward the end of my last spiro experience but are back in full force again. I've never thought about the buzzing feeling as being from ants, but yes, I have a constant internal buzz or tremor going on. Sometimes it is better than others. I'm going to give spiro a good trial. If I am still symptomatic, I'm going to look elsewhere for AVS. I don't want to spend the rest of my life this way. This disease has reduced me from a strong, confident woman to a fearful wimp who cannot protect herself from an abusive doctor. Somewhere in Michigan, a had AVS without going off spiro. Her verdict was bilateral hyperplasia. I haven't read enough about having AVS while on spiro to really trust it. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of meling333 Hi Val I hope comes back for updates . How is you Knee. I had all kinds of trouble with my knee only to figure out it was from the swelling. I was taking Clariton for allergies and in two weeks i could no longer walk on my left knee. It was swollen and i figured it just got twisted some how. I was starting not to sleep from the clariton . My knee was killing me and in three days after quitting clariton my knee stopped hurting. I cant even take any estrogen as it makes me swell up real bad. It's to the point that everything rubs me the wrong way. I am truly abducted by aliens. I had symptoms for years, befor my adrenal showed mid body fullness in 06. Now it's almost a half inch. I would think adrenals dont always look wrong to be ever so awfull. I'm in calif and dr. Grim will be an hour in a half away after he moves to lake Tahoe. So far he is the only rational Dr. I have come across for the mess I am in. All the others want me to quit spiro for another AVS. Stopping spiro would kill me off. I would rather just croke quickly and be spared the suffering. I have found several individuels that stayed on spiro for AVS and are well now. I got some bad spiro pills in june. I found out what life is off spiro for about 2 weeks it made me feel suicidal I was so sick. I hope that never happenes again, bad pills. I was reduced to eating bananas and Rice with great stomach distress like I have never had befor. So now my new bottle of spiro has soaked in for a few weeks and I can eat real food again. I am so hot all the time it is so awfull. Do you feel ants crawling under you skin,? and rats they feel like they are walking on me. So many symptoms, I am them all and more. Spiro takes 6 weeks to fully soak in I hope your feeling better now that your back on them Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 If you are doing well on Spiro and DASH (once you get back up to a good dose) I would not think about AVS. I would go to Inspra before that. CE Grim MD On Aug 21, 2008, at 11:04 PM, meling333 wrote: > > Hi Val > > I hope comes back for updates . > > How is you Knee. I had all kinds of trouble with my knee only to > figure > out it was from the swelling. I was taking Clariton for allergies > and in > two weeks i could no longer walk on my left knee. It was swollen and i > figured it just got twisted some how. I was starting not to sleep from > the clariton . My knee was killing me and in three days after quitting > clariton my knee stopped hurting. I cant even take any estrogen as it > makes me swell up real bad. It's to the point that everything rubs me > the wrong way. I am truly abducted by aliens. I had symptoms for > years, > befor my adrenal showed mid body fullness in 06. Now it's almost a > half > inch. I would think adrenals dont always look wrong to be ever so > awfull. I'm in calif and dr. Grim will be an hour in a half away after > he moves to lake Tahoe. So far he is the only rational Dr. I have come > across for the mess I am in. All the others want me to quit spiro for > another AVS. Stopping spiro would kill me off. I would rather just > croke quickly and be spared the suffering. I have found several > individuels that stayed on spiro for AVS and are well now. I got some > bad spiro pills in june. I found out what life is off spiro for > about 2 > weeks it made me feel suicidal I was so sick. I hope that never > happenes > again, bad pills. I was reduced to eating bananas and Rice with great > stomach distress like I have never had befor. So now my new bottle of > spiro has soaked in for a few weeks and I can eat real food again. > I am > so hot all the time it is so awfull. Do you feel ants crawling > under you > skin,? and rats they feel like they are walking on me. So many > symptoms, > I am them all and more. > Spiro takes 6 weeks to fully soak in I hope your feeling better now > that > your back on them > > ita. > > > > > > ita, I don't have 's address. Perhaps she'll see this and > answer > > you. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of meling333 > > > > > > Do you know or have her email. I need to ask her about a > contact > > at NIH who did her study. ita > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 My approach has been to do AVS on spiro if it is very difficult to stop it. Esp if there is a visible nodule on CT. BUT: if it does not localize (point to the side of the nodule) then we worry that the spiro affected this. So it is a bit of a gamble and I would rather not do it--but have done so. a's study was at U of Mich and the bill was nearly $28,000 (which must have been a billing mistake as my radiologist billers here say as I recall but her insurance covered most of it. If you search our emails you will find this I think or a can give us an update. Of course U of Mich was Conn's home and I spent a year there with him. I can recommend it highly still. CE Grim MD On Aug 22, 2008, at 7:20 AM, Valarie wrote: > I'm seeing a knee doc this morning. You are correct about the > swelling. > Mine is much worse when I'm retaining water. I'm getting it addressed > because it seems to be causing spasms in my back/hip and walking is > difficult. I've fallen a few times in the last year because I drag > my other > foot to avoid putting too much pressure on the bad knee. > > ita, I understand your symptoms. When I went off spiro for six > weeks, I > had terrible crying jags. I am hot all the time - day and night I > break out > in sweats, then get very cold. The sweats got a little better > toward the > end of my last spiro experience but are back in full force again. I've > never thought about the buzzing feeling as being from ants, but > yes, I have > a constant internal buzz or tremor going on. Sometimes it is better > than > others. > > I'm going to give spiro a good trial. If I am still symptomatic, > I'm going > to look elsewhere for AVS. I don't want to spend the rest of my > life this > way. This disease has reduced me from a strong, confident woman to a > fearful wimp who cannot protect herself from an abusive doctor. > > Somewhere in Michigan, a had AVS without going off spiro. Her > verdict > was bilateral hyperplasia. I haven't read enough about having AVS > while on > spiro to really trust it. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of meling333 > > Hi Val > > I hope comes back for updates . > > How is you Knee. I had all kinds of trouble with my knee only to > figure > out it was from the swelling. I was taking Clariton for allergies > and in > two weeks i could no longer walk on my left knee. It was swollen and i > figured it just got twisted some how. I was starting not to sleep from > the clariton . My knee was killing me and in three days after quitting > clariton my knee stopped hurting. I cant even take any estrogen as it > makes me swell up real bad. It's to the point that everything rubs me > the wrong way. I am truly abducted by aliens. I had symptoms for > years, > befor my adrenal showed mid body fullness in 06. Now it's almost a > half > inch. I would think adrenals dont always look wrong to be ever so > awfull. I'm in calif and dr. Grim will be an hour in a half away after > he moves to lake Tahoe. So far he is the only rational Dr. I have come > across for the mess I am in. All the others want me to quit spiro for > another AVS. Stopping spiro would kill me off. I would rather just > croke quickly and be spared the suffering. I have found several > individuels that stayed on spiro for AVS and are well now. I got some > bad spiro pills in june. I found out what life is off spiro for > about 2 > weeks it made me feel suicidal I was so sick. I hope that never > happenes > again, bad pills. I was reduced to eating bananas and Rice with great > stomach distress like I have never had befor. So now my new bottle of > spiro has soaked in for a few weeks and I can eat real food again. > I am > so hot all the time it is so awfull. Do you feel ants crawling > under you > skin,? and rats they feel like they are walking on me. So many > symptoms, > I am them all and more. > Spiro takes 6 weeks to fully soak in I hope your feeling better now > that > your back on them > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 I'm thankful that I did not have to go off spiro for my AVS, otherwise I don't know if I would have had it done. When the endo I was going to wanted me to be off it for 6 weeks and be on a high salt diet for 3 days for salt loading test. After being off 3 weeks I called my primary and told him I felt like I'd be dead before another 3 weeks. He told me to go back on the spiro immediately and enough is enough, you're going to U of M for evaluation. Val, I wasted almost an entire year with an endo who kept repeating the same tests over and over because a couple of my aldosterone levels were high normal and renins low normal, but most clearly indicated PA.  He wasn't able to see the entire picture and commit to a diagnosis. Unfortunately I didn't know about this group or Dr. Grim then or I'd have known my diagnosis. Even my primary guessed that I had PA and I stick with him now.  I will be eternally grateful to Dr. Jamerson, a hypertension specialist at U of M for restoring my faith in doctors.  I admit I was not the most pleasant of patients after wasting over a year going to an endo who kept repeating tests over and over again. He actually listened to me for over one hour and made a diagnosis immediately after looking at the labs and tests results I took with me. I have bilateral adenomas and he recommended AVS on the off-chance that only one was functional and I might benefit from surgery. Dr. Cho is the interventional radiologist at U of M and he is excellent. He has done over 600 AVS and mine was a walk in the park. Everything I read recommended going off spiro before AVS but when the nurse called to set mine up she said continue all medications. I asked specifically about spiro and aspirin and she said continue everything. I called back about a week later just to confirm this and they said continue ALL current medications, including spiro. I don't know what is considered High High on AVS but it doesn't look like the spiro interferred with my results. 20 minutes after ACTH infusion my Aldosterone levels were 2407.5 right and 2539.3 left. Normal listed as 1-16. If being on spiro affected my results I wonder how high I'd have been off of it? I can't find my bill but I'm pretty sure they billed my insurance about $14,000 for my AVS and I think they paid about $5,000 which U of M accepted as payment in full. Of course if I had no insurance I'd be liable for the entire $14,000. Another member of this group got a bill for about $28,000 but I don't remember where it was done.  While my BP is good on 200 mg of spiro daily and DASHing (122/68 this PM), I feel exhausted most of the time. I continue to have sweats several times a day whether I'm on HRT or not, so I don't think it's my age. I remember having them in my mid 30's and they've gotten progressively worse through the years. At least the irregular heartbeats that I had for years have disappeared since my K+ is now normal and the numbness and tingling in my feet and legs is now about 90% better on magnesium supplements.  A note on the abnormal EKG that someone mentioned. I had my first about age 35 before a minor surgery. I remember a couple of the anesthesiologists huddled around it whispering and they mentioned that I had a " weird looking " EKG. The last stress test I had said I have an unusual baseline EKG with biphasic T waves, T wave inversion in several leads and ventricular hypertrophy but showed no perfusion abnormality after exercise. My Cardiologist says that my EKG is normally abnormal. I wonder how many of us have abnormal EKG's and if it is related to the PA.  I think most of us are just sick and tired of feeling sick and tired. I wish I could feel " normal " again but I can barely remember what that feels like.  a       > I'm seeing a knee doc this morning. You are correct about the > swelling. > Mine is much worse when I'm retaining water. I'm getting it addressed > because it seems to be causing spasms in my back/hip and walking is > difficult. I've fallen a few times in the last year because I drag > my other > foot to avoid putting too much pressure on the bad knee. > > ita, I understand your symptoms. When I went off spiro for six > weeks, I > had terrible crying jags. I am hot all the time - day and night I > break out > in sweats, then get very cold. The sweats got a little better > toward the > end of my last spiro experience but are back in full force again. I've > never thought about the buzzing feeling as being from ants, but > yes, I have > a constant internal buzz or tremor going on. Sometimes it is better > than > others. > > I'm going to give spiro a good trial. If I am still symptomatic, > I'm going > to look elsewhere for AVS. I don't want to spend the rest of my > life this > way. This disease has reduced me from a strong, confident woman to a > fearful wimp who cannot protect herself from an abusive doctor. > > Somewhere in Michigan, a had AVS without going off spiro. Her > verdict > was bilateral hyperplasia. I haven't read enough about having AVS > while on > spiro to really trust it. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism] On Behalf Of meling333 > > Hi Val > > I hope comes back for updates . > > How is you Knee. I had all kinds of trouble with my knee only to > figure > out it was from the swelling. I was taking Clariton for allergies > and in > two weeks i could no longer walk on my left knee. It was swollen and i > figured it just got twisted some how. I was starting not to sleep from > the clariton . My knee was killing me and in three days after quitting > clariton my knee stopped hurting. I cant even take any estrogen as it > makes me swell up real bad. It's to the point that everything rubs me > the wrong way. I am truly abducted by aliens. I had symptoms for > years, > befor my adrenal showed mid body fullness in 06. Now it's almost a > half > inch. I would think adrenals dont always look wrong to be ever so > awfull. I'm in calif and dr. Grim will be an hour in a half away after > he moves to lake Tahoe. So far he is the only rational Dr. I have come > across for the mess I am in. All the others want me to quit spiro for > another AVS. Stopping spiro would kill me off. I would rather just > croke quickly and be spared the suffering. I have found several > individuels that stayed on spiro for AVS and are well now. I got some > bad spiro pills in june. I found out what life is off spiro for > about 2 > weeks it made me feel suicidal I was so sick. I hope that never > happenes > again, bad pills. I was reduced to eating bananas and Rice with great > stomach distress like I have never had befor. So now my new bottle of > spiro has soaked in for a few weeks and I can eat real food again. > I am > so hot all the time it is so awfull. Do you feel ants crawling > under you > skin,? and rats they feel like they are walking on me. So many > symptoms, > I am them all and more. > Spiro takes 6 weeks to fully soak in I hope your feeling better now > that > your back on them > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Because your BP is doing so well on Spiro and DASH (and I assume no other BP meds) you might want to talk to your Dr about slowing stepping down on Spiro to see how much you still need. I know Dr. Jamerson very well and your report was what I would have expected. I serve with him on the Board of Directors of the International Society of HTN in Blacks. CE Grim MD On Aug 22, 2008, at 5:11 PM, a Hall wrote: > I'm thankful that I did not have to go off spiro for my AVS, > otherwise I don't know if I would have had it done. When the endo > I was going to wanted me to be off it for 6 weeks and be on a high > salt diet for 3 days for salt loading test. After being off 3 > weeks I called my primary and told him I felt like I'd be dead > before another 3 weeks. He told me to go back on the spiro > immediately and enough is enough, you're going to U of M for > evaluation. Val, I wasted almost an entire year with an endo who > kept repeating the same tests over and over because a couple of my > aldosterone levels were high normal and renins low normal, but most > clearly indicated PA. He wasn't able to see the entire picture > and commit to a diagnosis. Unfortunately I didn't know about this > group or Dr. Grim then or I'd have known my diagnosis. Even my > primary guessed that I had PA and I stick with him now. > > I will be eternally grateful to Dr. Jamerson, a > hypertension specialist at U of M for restoring my faith in > doctors. I admit I was not the most pleasant of patients after > wasting over a year going to an endo who kept repeating tests over > and over again. He actually listened to me for over one hour and > made a diagnosis immediately after looking at the labs and tests > results I took with me. I have bilateral adenomas and he > recommended AVS on the off-chance that only one was functional and > I might benefit from surgery. Dr. Cho is the interventional > radiologist at U of M and he is excellent. He has done over 600 > AVS and mine was a walk in the park. Everything I read recommended > going off spiro before AVS but when the nurse called to set mine up > she said continue all medications. I asked specifically about > spiro and aspirin and she said continue everything. I called back > about a week later just to confirm this and they said continue > ALL current medications, including spiro. I don't know what is > considered High High on AVS but it doesn't look like the spiro > interferred with my results. 20 minutes after ACTH infusion my > Aldosterone levels were 2407.5 right and 2539.3 left. Normal > listed as 1-16. If being on spiro affected my results I wonder > how high I'd have been off of it? I can't find my bill but I'm > pretty sure they billed my insurance about $14,000 for my AVS and I > think they paid about $5,000 which U of M accepted as payment in > full. Of course if I had no insurance I'd be liable for the entire > $14,000. Another member of this group got a bill for about $28,000 > but I don't remember where it was done. > > While my BP is good on 200 mg of spiro daily and DASHing (122/68 > this PM), I feel exhausted most of the time. I continue to have > sweats several times a day whether I'm on HRT or not, so I don't > think it's my age. I remember having them in my mid 30's and > they've gotten progressively worse through the years. At least the > irregular heartbeats that I had for years have disappeared since my > K+ is now normal and the numbness and tingling in my feet and legs > is now about 90% better on magnesium supplements. > > A note on the abnormal EKG that someone mentioned. I had my first > about age 35 before a minor surgery. I remember a couple of the > anesthesiologists huddled around it whispering and they mentioned > that I had a " weird looking " EKG. The last stress test I had said > I have an unusual baseline EKG with biphasic T waves, T wave > inversion in several leads and ventricular hypertrophy but showed > no perfusion abnormality after exercise. My Cardiologist says that > my EKG is normally abnormal. I wonder how many of us have abnormal > EKG's and if it is related to the PA. I think most of us are just > sick and tired of feeling sick and tired. I wish I could feel > " normal " again but I can barely remember what that feels like. > > a > > > > > > > > > > > I'm seeing a knee doc this morning. You are correct about the > > swelling. > > Mine is much worse when I'm retaining water. I'm getting it > addressed > > because it seems to be causing spasms in my back/hip and walking is > > difficult. I've fallen a few times in the last year because I drag > > my other > > foot to avoid putting too much pressure on the bad knee. > > > > ita, I understand your symptoms. When I went off spiro for six > > weeks, I > > had terrible crying jags. I am hot all the time - day and night I > > break out > > in sweats, then get very cold. The sweats got a little better > > toward the > > end of my last spiro experience but are back in full force again. > I've > > never thought about the buzzing feeling as being from ants, but > > yes, I have > > a constant internal buzz or tremor going on. Sometimes it is better > > than > > others. > > > > I'm going to give spiro a good trial. If I am still symptomatic, > > I'm going > > to look elsewhere for AVS. I don't want to spend the rest of my > > life this > > way. This disease has reduced me from a strong, confident woman to a > > fearful wimp who cannot protect herself from an abusive doctor. > > > > Somewhere in Michigan, a had AVS without going off spiro. Her > > verdict > > was bilateral hyperplasia. I haven't read enough about having AVS > > while on > > spiro to really trust it. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism] On Behalf Of meling333 > > > > Hi Val > > > > I hope comes back for updates . > > > > How is you Knee. I had all kinds of trouble with my knee only to > > figure > > out it was from the swelling. I was taking Clariton for allergies > > and in > > two weeks i could no longer walk on my left knee. It was swollen > and i > > figured it just got twisted some how. I was starting not to sleep > from > > the clariton . My knee was killing me and in three days after > quitting > > clariton my knee stopped hurting. I cant even take any estrogen > as it > > makes me swell up real bad. It's to the point that everything > rubs me > > the wrong way. I am truly abducted by aliens. I had symptoms for > > years, > > befor my adrenal showed mid body fullness in 06. Now it's almost a > > half > > inch. I would think adrenals dont always look wrong to be ever so > > awfull. I'm in calif and dr. Grim will be an hour in a half away > after > > he moves to lake Tahoe. So far he is the only rational Dr. I have > come > > across for the mess I am in. All the others want me to quit spiro > for > > another AVS. Stopping spiro would kill me off. I would rather just > > croke quickly and be spared the suffering. I have found several > > individuels that stayed on spiro for AVS and are well now. I got > some > > bad spiro pills in june. I found out what life is off spiro for > > about 2 > > weeks it made me feel suicidal I was so sick. I hope that never > > happenes > > again, bad pills. I was reduced to eating bananas and Rice with > great > > stomach distress like I have never had befor. So now my new > bottle of > > spiro has soaked in for a few weeks and I can eat real food again. > > I am > > so hot all the time it is so awfull. Do you feel ants crawling > > under you > > skin,? and rats they feel like they are walking on me. So many > > symptoms, > > I am them all and more. > > Spiro takes 6 weeks to fully soak in I hope your feeling better now > > that > > your back on them > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Oh a, your story is a heartbreaker. Unfortunately, it is probably my story, too. There are some days when I don't think I can stand another sweat. My heart rate elevates a little and I feel a bit breathless. Is it sodium bouncing around, or maybe potassium bouncing around? Today, I felt somewhat " normal " (whatever that is) until late afternoon. I had several hours without sweats. Then the " brittles " set in. I don't know what else to call the sieges when I feel brittle. I'd avoided exogenous estrogen for a couple of days thinking maybe it was making me worse. For a disease w/o symptoms, we surely have them. I'm going to give spiro another good trial of say, two months. If I'm not considerably better, I'm going to go look for a different good place to have AVS. If there is any chance I could be healed, I want that chance. I don't even care if I have residual hypertension. Supposedly, it is the " silent killer, " but there is nothing about my experience that is " silent. " I could deal with the silent killer as long as it didn't scream all the time. My husband tells me I'm better today but not as good as before I went off spiro. He says that when I feel brittle, I have a tranced look on my face. We drove when I went to Mayo so we could take a cooler with food I could eat. It was not an easy trip, and by the time I met with the doctor, my brain would not function. I could not question anything and felt totally defeated in very short order. Perhaps my sodium was too low for my brain to work. I'm going to write to Mayo lab and ask for normal levels of renin and aldosterone, given my low urinary sodium level. Avoiding sodium is the only way I can somewhat control the " brittles, " and certainly, low, low salt and spiro have mostly stopped my skipping and fluttering heart. I only feel the thump of skipped beats once or twice a week now. I feel like I got on spiro just in time. I was wondering how much longer my heart could stand the gripping feeling I was having. That, for the most part, is gone. I had a lot of heart tests at National Jewish. My EF is about 75% so I'm likely okay there. I have some bicuspid? and mitral valve damage but that is called " trace " and is probably from phen-fen. Maybe the valves will work until it is time for me to die. I had a normal EKG in 1999 and an abnormal one last December. I haven't really studied the heart reports yet, perhaps because I trust the doctor who ordered them. I don't feel like I have to understand every little measurement and nuance. My sleep study, BTW, was negative for sleep apnea. It seems to me that if spiro was going to affect AVS, it would affect both adrenals equally? Maybe I'm missing something? Is there some way spiro could equalize the aldo production from both adrenals? I've read over and over that spiro will absolutely affect AVS results, but have not found exactly how it affects results. I would like to know that. Perhaps the requirement to be off spiro will become an urban legend in time. a, thanks for posting your experiences again. When I first joined the list, these postings were so helpful to me. In fact, they still are. Sometimes I feel very alone. I'm sure there are new people who benefit from what we post. Mayo accepted my BCBS so no worry there. I'd already paid the $6,000 deductible (second time of chasing this down). I almost feel like protesting the physician part of the bill but hate to burn bridges. I have a friend who went to an endo at U of Chicago and got rotten, abusive treatment. She refused to pay the bill, stated her case, and they cancelled it. And Dr. Grim, thank you for putting up with our moaning and groaning all the time. You probably saved my heart from stopping. Val PS. Since the cortisone injection, my knee won't bend beyond about 5%. It seems like a minor problem. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of a Hall I'm thankful that I did not have to go off spiro for my AVS, otherwise I don't know if I would have had it done. When the endo I was going to wanted me to be off it for 6 weeks and be on a high salt diet for 3 days for salt loading test. After being off 3 weeks I called my primary and told him I felt like I'd be dead before another 3 weeks. He told me to go back on the spiro immediately and enough is enough, you're going to U of M for evaluation. Val, I wasted almost an entire year with an endo who kept repeating the same tests over and over because a couple of my aldosterone levels were high normal and renins low normal, but most clearly indicated PA. He wasn't able to see the entire picture and commit to a diagnosis. Unfortunately I didn't know about this group or Dr. Grim then or I'd have known my diagnosis. Even my primary guessed that I had PA and I stick with him now. I will be eternally grateful to Dr. Jamerson, a hypertension specialist at U of M for restoring my faith in doctors. I admit I was not the most pleasant of patients after wasting over a year going to an endo who kept repeating tests over and over again. He actually listened to me for over one hour and made a diagnosis immediately after looking at the labs and tests results I took with me. I have bilateral adenomas and he recommended AVS on the off-chance that only one was functional and I might benefit from surgery. Dr. Cho is the interventional radiologist at U of M and he is excellent. He has done over 600 AVS and mine was a walk in the park. Everything I read recommended going off spiro before AVS but when the nurse called to set mine up she said continue all medications. I asked specifically about spiro and aspirin and she said continue everything. I called back about a week later just to confirm this and they said continue ALL current medications, including spiro. I don't know what is considered High High on AVS but it doesn't look like the spiro interferred with my results. 20 minutes after ACTH infusion my Aldosterone levels were 2407.5 right and 2539.3 left. Normal listed as 1-16. If being on spiro affected my results I wonder how high I'd have been off of it? I can't find my bill but I'm pretty sure they billed my insurance about $14,000 for my AVS and I think they paid about $5,000 which U of M accepted as payment in full. Of course if I had no insurance I'd be liable for the entire $14,000. Another member of this group got a bill for about $28,000 but I don't remember where it was done. While my BP is good on 200 mg of spiro daily and DASHing (122/68 this PM), I feel exhausted most of the time. I continue to have sweats several times a day whether I'm on HRT or not, so I don't think it's my age. I remember having them in my mid 30's and they've gotten progressively worse through the years. At least the irregular heartbeats that I had for years have disappeared since my K+ is now normal and the numbness and tingling in my feet and legs is now about 90% better on magnesium supplements. A note on the abnormal EKG that someone mentioned. I had my first about age 35 before a minor surgery. I remember a couple of the anesthesiologists huddled around it whispering and they mentioned that I had a " weird looking " EKG. The last stress test I had said I have an unusual baseline EKG with biphasic T waves, T wave inversion in several leads and ventricular hypertrophy but showed no perfusion abnormality after exercise. My Cardiologist says that my EKG is normally abnormal. I wonder how many of us have abnormal EKG's and if it is related to the PA. I think most of us are just sick and tired of feeling sick and tired. I wish I could feel " normal " again but I can barely remember what that feels like. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 The theoretical concern about spiro is that as it blocks aldo effect, the body sodium goes down and renin goes up in response. The adrenal that was suppressed by the very low renin during the high aldo is very sensitive to AII from the renin and may hyperrespond thus increasing the aldo from the normal tissue. As you might imagine there have not be a systematic study of pts with PA who underwent AVS on and off spiro to make a good statement about the results. I have done it and if it localized felt that surgery was indicated- because I only do AVS when surgey will be done if it localizes. If it does not localize on spiro then the next choice is to stop the sprio and repeat. I don't recall ever doing this. But my data base in my computer does not go back more that about 15 years. CE Grim On Aug 22, 2008, at 10:07 PM, Valarie wrote: > Oh a, your story is a heartbreaker. Unfortunately, it is > probably my > story, too. There are some days when I don't think I can stand another > sweat. My heart rate elevates a little and I feel a bit breathless. > Is it > sodium bouncing around, or maybe potassium bouncing around? Today, > I felt > somewhat " normal " (whatever that is) until late afternoon. I had > several > hours without sweats. Then the " brittles " set in. I don't know what > else > to call the sieges when I feel brittle. I'd avoided exogenous > estrogen for > a couple of days thinking maybe it was making me worse. For a > disease w/o > symptoms, we surely have them. > > I'm going to give spiro another good trial of say, two months. If > I'm not > considerably better, I'm going to go look for a different good > place to have > AVS. If there is any chance I could be healed, I want that chance. > I don't > even care if I have residual hypertension. Supposedly, it is the > " silent > killer, " but there is nothing about my experience that is " silent. " > I could > deal with the silent killer as long as it didn't scream all the > time. My > husband tells me I'm better today but not as good as before I went off > spiro. He says that when I feel brittle, I have a tranced look on > my face. > > We drove when I went to Mayo so we could take a cooler with food I > could > eat. It was not an easy trip, and by the time I met with the > doctor, my > brain would not function. I could not question anything and felt > totally > defeated in very short order. Perhaps my sodium was too low for my > brain to > work. I'm going to write to Mayo lab and ask for normal levels of > renin and > aldosterone, given my low urinary sodium level. Avoiding sodium is > the only > way I can somewhat control the " brittles, " and certainly, low, low > salt and > spiro have mostly stopped my skipping and fluttering heart. I only > feel the > thump of skipped beats once or twice a week now. I feel like I got > on spiro > just in time. I was wondering how much longer my heart could stand the > gripping feeling I was having. That, for the most part, is gone. > > I had a lot of heart tests at National Jewish. My EF is about 75% > so I'm > likely okay there. I have some bicuspid? and mitral valve damage > but that > is called " trace " and is probably from phen-fen. Maybe the valves > will work > until it is time for me to die. I had a normal EKG in 1999 and an > abnormal > one last December. I haven't really studied the heart reports yet, > perhaps > because I trust the doctor who ordered them. I don't feel like I > have to > understand every little measurement and nuance. My sleep study, > BTW, was > negative for sleep apnea. > > It seems to me that if spiro was going to affect AVS, it would > affect both > adrenals equally? Maybe I'm missing something? Is there some way spiro > could equalize the aldo production from both adrenals? I've read > over and > over that spiro will absolutely affect AVS results, but have not found > exactly how it affects results. I would like to know that. Perhaps the > requirement to be off spiro will become an urban legend in time. > > a, thanks for posting your experiences again. When I first > joined the > list, these postings were so helpful to me. In fact, they still are. > Sometimes I feel very alone. I'm sure there are new people who > benefit from > what we post. > > Mayo accepted my BCBS so no worry there. I'd already paid the $6,000 > deductible (second time of chasing this down). I almost feel like > protesting the physician part of the bill but hate to burn bridges. > I have > a friend who went to an endo at U of Chicago and got rotten, abusive > treatment. She refused to pay the bill, stated her case, and they > cancelled > it. > > And Dr. Grim, thank you for putting up with our moaning and > groaning all the > time. You probably saved my heart from stopping. > > Val > > PS. Since the cortisone injection, my knee won't bend beyond about > 5%. It > seems like a minor problem. > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of a Hall > > I'm thankful that I did not have to go off spiro for my AVS, > otherwise I > don't know if I would have had it done. When the endo I was going > to wanted > me to be off it for 6 weeks and be on a high salt diet for 3 days > for salt > loading test. After being off 3 weeks I called my primary and told > him I > felt like I'd be dead before another 3 weeks. He told me to go back > on the > spiro immediately and enough is enough, you're going to U of M for > evaluation. Val, I wasted almost an entire year with an endo who kept > repeating the same tests over and over because a couple of my > aldosterone > levels were high normal and renins low normal, but most clearly > indicated > PA. He wasn't able to see the entire picture and commit to a > diagnosis. > Unfortunately I didn't know about this group or Dr. Grim then or > I'd have > known my diagnosis. Even my primary guessed that I had PA and I > stick with > him now. > > I will be eternally grateful to Dr. Jamerson, a hypertension > specialist at U of M for restoring my faith in doctors. I admit I > was not > the most pleasant of patients after wasting over a year going to an > endo who > kept repeating tests over and over again. He actually listened to > me for > over one hour and made a diagnosis immediately after looking at the > labs and > tests results I took with me. I have bilateral adenomas and he > recommended > AVS on the off-chance that only one was functional and I might > benefit from > surgery. Dr. Cho is the interventional radiologist at U of M and he is > excellent. He has done over 600 AVS and mine was a walk in the park. > Everything I read recommended going off spiro before AVS but when > the nurse > called to set mine up she said continue all medications. I asked > specifically about spiro and aspirin and she said continue > everything. I > called back about a week later just to confirm this and they said > continue > ALL current medications, including spiro. I don't know what is > considered > High High on AVS but it doesn't look like the spiro interferred > with my > results. 20 minutes after ACTH infusion my Aldosterone levels were > 2407.5 > right and 2539.3 left. Normal listed as 1-16. If being on spiro > affected > my results I wonder how high I'd have been off of it? I can't find > my bill > but I'm pretty sure they billed my insurance about $14,000 for my > AVS and I > think they paid about $5,000 which U of M accepted as payment in > full. Of > course if I had no insurance I'd be liable for the entire $14,000. > Another > member of this group got a bill for about $28,000 but I don't > remember where > it was done. > > While my BP is good on 200 mg of spiro daily and DASHing (122/68 > this PM), I > feel exhausted most of the time. I continue to have sweats several > times a > day whether I'm on HRT or not, so I don't think it's my age. I > remember > having them in my mid 30's and they've gotten progressively worse > through > the years. At least the irregular heartbeats that I had for years have > disappeared since my K+ is now normal and the numbness and tingling > in my > feet and legs is now about 90% better on magnesium supplements. > > A note on the abnormal EKG that someone mentioned. I had my first > about age > 35 before a minor surgery. I remember a couple of the > anesthesiologists > huddled around it whispering and they mentioned that I had a " weird > looking " > EKG. The last stress test I had said I have an unusual baseline EKG > with > biphasic T waves, T wave inversion in several leads and ventricular > hypertrophy but showed no perfusion abnormality after exercise. My > Cardiologist says that my EKG is normally abnormal. I wonder how > many of us > have abnormal EKG's and if it is related to the PA. I think most of > us are > just sick and tired of feeling sick and tired. I wish I could feel > " normal " > again but I can barely remember what that feels like. > > a > > > Quote Link to comment Share on other sites More sharing options...
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