Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 In a message dated 1/9/08 11:06:02 AM, val@... writes: > > K has been low each time I've been so bad that I went to a doc. But > remember, I've been on HCTZ for five years. The blood tests I had this > Monday should be interesting as I've been on triam/HCTZ 37.5-25 for about > two weeks. > This will likely still lead to low K if you have PA. Sounds like it is time for a spiro trial in my book. Talk with your Dr. > > That is my fifth child who is not as smart. I've read that hypothyroidism > in the mother can lower the offspring's IQ. She's no dummy (IQ about 115) > but she's lesser intelligence than the older four. She is 26 and has > thyroid antibodies. Her doc wants to talk to her about them. I've been > watching her thyroid tests and they've been good except for the antibodies. > I'm hoping my knowledge will preclude my daughters losing as much of their > lives as I have lost of mine. I am very angry that my overt signs of hypo > (ex: wearing long johns year-round and freezing) were never " noticed " and > that I was treated for ankylosing spondylitis for 14 years. I probably had > hypo and hyperparathyroidism all along. Calcium was high in all the tests > way back to 1985. It is normal now. > Sounds like your hyperpara was missed for years. We knew how to Dx it even back then. > > Fourth child (daughter) also has antibodies and her TSH is inching up. > She's been on meds for a couple of months. She is an attorney, 28 years > old. There is some research that low-dose thyroid meds can slow down the > progression to overt hypothyroidism in people who have antibodies. > > The only way I can get a " real " spell to come on is to take some Armour. As > it is, I'm still in the last spell, just not the critical stage. I'm still > having the morning sweats and BP peaks and valleys. I can also bring on a > spell (probably including paralysis) by eating a lot of salt. I'm deathly > afraid of eating salt or taking Armour. I keep wondering about the > paralysis and if it will just paralyze my lungs or heart one of these times. > > My doc won't know anything about pheo. What exact tests should I ask for? > Plasma metanephrine, urine catacholomines, etc???? She wants me to go to an > endo but again, if I'm going to Mayo, I don't want to waste money on an endo > (again). I have a very high deductible. Plus, it will take me a month to > get into one. > > I will try to find all my test records. > > > Val > > From: hyperaldosteronism@hyperaldostehyp > [mailto:hyperaldosteronism@hyperaldostehyp] On Behalf Of lowerbp2@... > > good story. Was there only one time that the K was low or is it low during > spells. > > You clearly need some urine and blood tests for pheo. Your local Dr can do > this. > > Your 4th child might have had a low thryoid problem if you were clealy low > thryoid during pregnancy but this is routinely tested for at birth in most > states now. > > The best time to collect a 24 hr urine for pheo is as soon as you can after > a > spell. See if your Dr can give you a special jug to have at home so you > can begin immediatley during or after spell to get a 24 hr sample. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 One of the classic causes of periodic paralysis is hyperthyoidism. You may have an unusual thyroid problem and need to see someone who specializes in this-again the Mayo would be good. In a message dated 1/9/08 11:06:02 AM, val@... writes: > > K has been low each time I've been so bad that I went to a doc. But > remember, I've been on HCTZ for five years. The blood tests I had this > Monday should be interesting as I've been on triam/HCTZ 37.5-25 for about > two weeks. > > That is my fifth child who is not as smart. I've read that hypothyroidism > in the mother can lower the offspring's IQ. She's no dummy (IQ about 115) > but she's lesser intelligence than the older four. She is 26 and has > thyroid antibodies. Her doc wants to talk to her about them. I've been > watching her thyroid tests and they've been good except for the antibodies. > I'm hoping my knowledge will preclude my daughters losing as much of their > lives as I have lost of mine. I am very angry that my overt signs of hypo > (ex: wearing long johns year-round and freezing) were never " noticed " and > that I was treated for ankylosing spondylitis for 14 years. I probably had > hypo and hyperparathyroidism all along. Calcium was high in all the tests > way back to 1985. It is normal now. > > Fourth child (daughter) also has antibodies and her TSH is inching up. > She's been on meds for a couple of months. She is an attorney, 28 years > old. There is some research that low-dose thyroid meds can slow down the > progression to overt hypothyroidism in people who have antibodies. > > The only way I can get a " real " spell to come on is to take some Armour. As > it is, I'm still in the last spell, just not the critical stage. I'm still > having the morning sweats and BP peaks and valleys. I can also bring on a > spell (probably including paralysis) by eating a lot of salt. I'm deathly > afraid of eating salt or taking Armour. I keep wondering about the > paralysis and if it will just paralyze my lungs or heart one of these times. > > My doc won't know anything about pheo. What exact tests should I ask for? > Plasma metanephrine, urine catacholomines, etc???? She wants me to go to an > endo but again, if I'm going to Mayo, I don't want to waste money on an endo > (again). I have a very high deductible. Plus, it will take me a month to > get into one. > > I will try to find all my test records. > > > Val > > From: hyperaldosteronism@hyperaldostehyp > [mailto:hyperaldosteronism@hyperaldostehyp] On Behalf Of lowerbp2@... > > good story. Was there only one time that the K was low or is it low during > spells. > > You clearly need some urine and blood tests for pheo. Your local Dr can do > this. > > Your 4th child might have had a low thryoid problem if you were clealy low > thryoid during pregnancy but this is routinely tested for at birth in most > states now. > > The best time to collect a 24 hr urine for pheo is as soon as you can after > a > spell. See if your Dr can give you a special jug to have at home so you > can begin immediatley during or after spell to get a 24 hr sample. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 That is a key part of our purpose here, but we also want to do what we can to teach all the Drs who missed the DX so they dont make the same mistake in other patients. If you can I would forward your story to all Drs who have previously seen you. We can help minimize others suffering! In a message dated 1/9/08 12:14:01 PM, val@... writes: > > Within eight hours of my surgery, I could sit directly on my tailbone. I > hadn't been able to sit straight on it for years. I sat on one leg to take > pressure off my tail bone. Yes, the hyperparathyroidism was definitely missed. If > nothing else, 14 years of wrong diagnosis and anti-inflammatories taught me > to research and find my own answers. > > Val > > From: hyperaldosteronism@hyperaldostehyp [mailto: > hyperaldosteronism@hyperaldostehyp] On Behalf Of lowerbp2@... > > Sounds like your hyperpara was missed for years. We knew how to Dx it even > back then. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Indeed we should have a place in our database for all former Drs and addresses the person has seen so they can be notified of the problem they missed and how to avoid it from here on. One way IMHO is to read my article on the evolution of PA and to take it/send it to all who have ever seen you. Only then can we help their many other pts with PA avoid years of suffering and potential strokes, heart attacks and sudden death from low K. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 K has been low each time I've been so bad that I went to a doc. But remember, I've been on HCTZ for five years. The blood tests I had this Monday should be interesting as I've been on triam/HCTZ 37.5-25 for about two weeks. That is my fifth child who is not as smart. I've read that hypothyroidism in the mother can lower the offspring's IQ. She's no dummy (IQ about 115) but she's lesser intelligence than the older four. She is 26 and has thyroid antibodies. Her doc wants to talk to her about them. I've been watching her thyroid tests and they've been good except for the antibodies. I'm hoping my knowledge will preclude my daughters losing as much of their lives as I have lost of mine. I am very angry that my overt signs of hypo (ex: wearing long johns year-round and freezing) were never " noticed " and that I was treated for ankylosing spondylitis for 14 years. I probably had hypo and hyperparathyroidism all along. Calcium was high in all the tests way back to 1985. It is normal now. Fourth child (daughter) also has antibodies and her TSH is inching up. She's been on meds for a couple of months. She is an attorney, 28 years old. There is some research that low-dose thyroid meds can slow down the progression to overt hypothyroidism in people who have antibodies. The only way I can get a " real " spell to come on is to take some Armour. As it is, I'm still in the last spell, just not the critical stage. I'm still having the morning sweats and BP peaks and valleys. I can also bring on a spell (probably including paralysis) by eating a lot of salt. I'm deathly afraid of eating salt or taking Armour. I keep wondering about the paralysis and if it will just paralyze my lungs or heart one of these times. My doc won't know anything about pheo. What exact tests should I ask for? Plasma metanephrine, urine catacholomines, etc???? She wants me to go to an endo but again, if I'm going to Mayo, I don't want to waste money on an endo (again). I have a very high deductible. Plus, it will take me a month to get into one. I will try to find all my test records. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2@... good story. Was there only one time that the K was low or is it low during spells. You clearly need some urine and blood tests for pheo. Your local Dr can do this. Your 4th child might have had a low thryoid problem if you were clealy low thryoid during pregnancy but this is routinely tested for at birth in most states now. The best time to collect a 24 hr urine for pheo is as soon as you can after a spell. See if your Dr can give you a special jug to have at home so you can begin immediatley during or after spell to get a 24 hr sample. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Within eight hours of my surgery, I could sit directly on my tailbone. I hadn't been able to sit straight on it for years. I sat on one leg to take pressure off my tail bone. Yes, the hyperparathyroidism was definitely missed. If nothing else, 14 years of wrong diagnosis and anti-inflammatories taught me to research and find my own answers. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2@... Sounds like your hyperpara was missed for years. We knew how to Dx it even back then. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 I am a proactive person and have always tried to right the wrongs in the world. I used to be a college teacher and was never happy until every student understood the intricate workings of supply and demand. If I could help but one human being by imparting my knowledge, I would be happy. I fully intend to send my story and Dr. Grim's paper to all those who never " got it, " especially the one I saw for more than 12 years and who treated me for ankylosing spondylitis I never had. He was board-certified internal medicine. I am going to hold off sending any letters until I find my test results, have more knowledge and possibly, a diagnosis. My BP tonight is 135/79. That's what makes it so hard to decide what to do and where to go. I've already told my husband to find " Val's Story " on my desktop and send it to Dr. D_____ in the event of my untimely expiration. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2@... That is a key part of our purpose here, but we also want to do what we can to teach all the Drs who missed the DX so they dont make the same mistake in other patients. If you can I would forward your story to all Drs who have previously seen you. We can help minimize others suffering! In a message dated 1/9/08 12:14:01 PM, val@... <mailto:val%40wyosip.com> writes: > Within eight hours of my surgery, I could sit directly on my tailbone. I > hadn't been able to sit straight on it for years. I sat on one leg to take > pressure off my tail bone. Yes, the hyperparathyroidism was definitely missed. If > nothing else, 14 years of wrong diagnosis and anti-inflammatories taught me > to research and find my own answers. > > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 In a message dated 1/9/08 11:37:00 PM, val@... writes: > > I am a proactive person and have always tried to right the wrongs in the > world. I used to be a college teacher and was never happy until every student > understood the intricate workings of supply and demand. If I could help but one > human being by imparting my knowledge, I would be happy. I fully intend to > send my story and Dr. Grim's paper to all those who never " got it, " especially > the one I saw for more than 12 years and who treated me for ankylosing > spondylitis I never had. He was board-certified internal medicine. > Was your K ever low during these times? > > I am going to hold off sending any letters until I find my test results, > have more knowledge and possibly, a diagnosis. My BP tonight is 135/79. That's > what makes it so hard to decide what to do and where to go. I've already told > my husband to find " Val's Story " on my desktop and send it to Dr. D_____ in > the event of my untimely expiration. > > Val > > From: hyperaldosteronism@hyperaldostehyp [mailto: > hyperaldosteronism@hyperaldostehyp] On Behalf Of lowerbp2@... > > That is a key part of our purpose here, but we also want to do what we can > to > teach all the Drs who missed the DX so they dont make the same mistake in > other patients. > > If you can I would forward your story to all Drs who have previously seen > you. We can help minimize others suffering! > > In a message dated 1/9/08 12:14:01 PM, val@... < > mailto:val%mailto:vamai> writes: > > > Within eight hours of my surgery, I could sit directly on my tailbone. I > > hadn't been able to sit straight on it for years. I sat on one leg to take > > pressure off my tail bone. Yes, the hyperparathyroidism was definitely > missed. If > > nothing else, 14 years of wrong diagnosis and anti-inflammatories taught > me > > to research and find my own answers. > > > > Val > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 I don't know. I may be able to find some lab tests from way back then. I suspect it was not. BP this morning (6 a.m.) was 132/82 but I was up at 4 a.m. with sweats/anxiety. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2@... especially > the one I saw for more than 12 years and who treated me for ankylosing > spondylitis I never had. > Was your K ever low during these times? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 > > I am a proactive person and have always tried to right the wrongs in the world. I used to be a college teacher and was never happy until every student understood the intricate workings of supply and demand. If I could help but one human being by imparting my knowledge, I would be happy. I fully intend to send my story and Dr. Grim's paper to all those who never " got it, " especially the one I saw for more than 12 years and who treated me for ankylosing spondylitis I never had. He was board-certified internal medicine. > > I am going to hold off sending any letters until I find my test results, have more knowledge and possibly, a diagnosis. My BP tonight is 135/79. That's what makes it so hard to decide what to do and where to go. I've already told my husband to find " Val's Story " on my desktop and send it to Dr. D_____ in the event of my untimely expiration. > > Val > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2@... > > > That is a key part of our purpose here, but we also want to do what we can to > teach all the Drs who missed the DX so they dont make the same mistake in > other patients. > > If you can I would forward your story to all Drs who have previously seen > you. We can help minimize others suffering! > > In a message dated 1/9/08 12:14:01 PM, val@... <mailto:val% 40wyosip.com> writes: > > > Within eight hours of my surgery, I could sit directly on my tailbone. I > > hadn't been able to sit straight on it for years. I sat on one leg to take > > pressure off my tail bone. Yes, the hyperparathyroidism was definitely missed. If > > nothing else, 14 years of wrong diagnosis and anti- inflammatories taught me > > to research and find my own answers. > > > > Val Dear Val, I am totally with you. I don't even remember all of the wrong diagnosises I have had and all of the wrong medication I tried. Many were from years ago and done by doctors I no longer see. I do have respect for my current doctors and I want to stay with them so I don't have to go through all of this again. I've noticed a different attitude and willingness to work on my case in the last few months. It just ocurred to me that with today's legal climate, they are always concerned about law suits. I think it's the reason they avoid committing to a diagnosis. Since I have built up a relationship with my doctors over the last 2 years, they no longer dismiss my symptoms and we discuss conditions and meds in a relaxed manner. They pretty much include me in decisions about my treatment. I'm not totally excusing them treating me for arthritis and headaches for years without looking further for the cause but I do understand that PA is so rare that doctors just don't consider it. I know that my friends with HMO's would probable die before they found out they had PA due lack of testing for financial reasons. I think our job is to get the word out to doctors and patients whenever we can. I would really like to help others with these problems avoid years of inappropriate treament and years of suffering. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 interesting article. The best study suggests that low thyoid causes HTN, low renin and low aldo (not high) so not likely to be confused with PA. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 In a message dated 1/10/08 9:27:27 PM, val@... writes: > > Dr. Grim, > > Here are some test results from 1/05. I was in a major " episode " and had > been on high K meds until one week before the tests. Note the FT3? I had > been off all T3 for two or three months. > > Renin 0.9 (0.4 - 4.5) > Aldosterone 19 (4 - 31) > ARR = 21.1 (They use 20 - 30 as indicative of PA) > Free testosterone 3.0 (0.0 - 2.2) H > ACTH 169 (0 - 60) H > Dopamine 46 (60 - 440) L > Epinephrine <3 (0 - 25) > Norepinephrine <10 (0 - 100) > Metanephrine 123 (30 - 350) > Normetanephrine 268 (50 - 650) > Cortisol 18 (5 - 25) (9 a.m.) > Prolactin 10 (2 - 15) > DHEA-S 110 (19 - 205) > Everything else normal except for low FT3 = 2.1 (2.4 - 4.2) > > There is a note that says " Urine catecholamines in this speciman show no > evidence for a secreting neuroendocrine tumor. " > > I remember some more in May of 05. ARR was 32.5 but aldosterone was not > high at all. My episode had subsided a little by then but BP was >160. > I'll continue to look. > > Val > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Thank you. Your mention of HMOs is interesting. At the time I had the HPT diagnosis, I went through five PCPs in five months, trying to find one who would let me have the surgery. I kept being told that my insurance company wouldn't allow it. Pacificare kept saying it was not involved in the decision. Finally, I figured out that Pacificare contracted with local doctor groups. It was the " physician associations " in Boulder, Colorado that wouldn't allow the surgery. At the time, my husband was the CFO of the school district and had a personal meeting with the Pacificare president. He explained that Pacificare paid each physician association a set amount per subscriber. How they spent it was up to them. Whatever was left over at the end of the month was split among the member physicians. I finally found a doctor 30 miles away. She was not a member of an association and contracted directly with Pacificare. She allowed the surgery. Trying to get surgery was a huge burden for me. I was already three years behind in filing my tax returns. I imagine many people in HMOs die because they can't fight. End result: Pacificare lost the school district contract of 3,300 subscribers. I think its called " poetic justice. " Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of ipscalifornia Dear Val, I am totally with you. I don't even remember all of the wrong diagnosises I have had and all of the wrong medication I tried. Many were from years ago and done by doctors I no longer see. I do have respect for my current doctors and I want to stay with them so I don't have to go through all of this again. I've noticed a different attitude and willingness to work on my case in the last few months. It just ocurred to me that with today's legal climate, they are always concerned about law suits. I think it's the reason they avoid committing to a diagnosis. Since I have built up a relationship with my doctors over the last 2 years, they no longer dismiss my symptoms and we discuss conditions and meds in a relaxed manner. They pretty much include me in decisions about my treatment. I'm not totally excusing them treating me for arthritis and headaches for years without looking further for the cause but I do understand that PA is so rare that doctors just don't consider it. I know that my friends with HMO's would probable die before they found out they had PA due lack of testing for financial reasons. I think our job is to get the word out to doctors and patients whenever we can. I would really like to help others with these problems avoid years of inappropriate treament and years of suffering. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Val, I completely understand what you went through with the PCP program. It is almost as bad, perhaps worse, than HMOs. At least with the HMO's they have quality review panels whereas with PCPs you can end up with greedy physician groups who are reviewing their cash flow. Terrible system. I was stuck in PCP years ago when I was in college, and it took me two months of driving up my primary doc's costs and annoying the hell of him by multiple office visits before he was willing to have me evaluated for a potential minuscule tear in my knee by an orthopedic surgeon. -Jeff On Jan 10, 2008 7:57 PM, Valarie <val@...> wrote: > Thank you. > > Your mention of HMOs is interesting. At the time I had the HPT diagnosis, > I > went through five PCPs in five months, trying to find one who would let me > have the surgery. I kept being told that my insurance company wouldn't > allow it. Pacificare kept saying it was not involved in the decision. > Finally, I figured out that Pacificare contracted with local doctor > groups. > It was the " physician associations " in Boulder, Colorado that wouldn't > allow > the surgery. At the time, my husband was the CFO of the school district > and > had a personal meeting with the Pacificare president. He explained that > Pacificare paid each physician association a set amount per subscriber. > How > they spent it was up to them. Whatever was left over at the end of the > month was split among the member physicians. > > I finally found a doctor 30 miles away. She was not a member of an > association and contracted directly with Pacificare. She allowed the > surgery. Trying to get surgery was a huge burden for me. I was already > three years behind in filing my tax returns. I imagine many people in HMOs > die because they can't fight. > > End result: Pacificare lost the school district contract of 3,300 > subscribers. I think its called " poetic justice. " > > > Val > > From: hyperaldosteronism <hyperaldosteronism%40> > [mailto:hyperaldosteronism <hyperaldosteronism%40>\ ] > On Behalf Of ipscalifornia > > Dear Val, > > I am totally with you. I don't even remember all of the wrong > diagnosises I have had and all of the wrong medication I tried. Many > were from years ago and done by doctors I no longer see. I do have > respect for my current doctors and I want to stay with them so I > don't have to go through all of this again. I've noticed a > different attitude and willingness to work on my case in the last > few months. It just ocurred to me that with today's legal climate, > they are always concerned about law suits. I think it's the reason > they avoid committing to a diagnosis. Since I have built up a > relationship with my doctors over the last 2 years, they no longer > dismiss my symptoms and we discuss conditions and meds in a relaxed > manner. They pretty much include me in decisions about my > treatment. I'm not totally excusing them treating me for arthritis > and headaches for years without looking further for the cause but I > do understand that PA is so rare that doctors just don't consider > it. I know that my friends with HMO's would probable die before > they found out they had PA due lack of testing for financial > reasons. I think our job is to get the word out to doctors and > patients whenever we can. > > I would really like to help others with these problems avoid years > of inappropriate treament and years of suffering. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 PCP is Primary Care Provider - the gatekeeper and (sometimes) killer used by HMOs. I now have a PPO. That's where you have to use someone in the preferred provider organization but the choice is much larger and the primary gatekeeper can't control you. I just learned that Mayo accepts my insurance. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of datawrhsdoc Val, I completely understand what you went through with the PCP program. It is almost as bad, perhaps worse, than HMOs. At least with the HMO's they have quality review panels whereas with PCPs you can end up with greedy physician groups who are reviewing their cash flow. Terrible system. I was stuck in PCP years ago when I was in college, and it took me two months of driving up my primary doc's costs and annoying the hell of him by multiple office visits before he was willing to have me evaluated for a potential minuscule tear in my knee by an orthopedic surgeon. -Jeff On Jan 10, 2008 7:57 PM, Valarie <val@... <mailto:val%40wyosip.com> > wrote: > Thank you. > > Your mention of HMOs is interesting. At the time I had the HPT diagnosis, > I > went through five PCPs in five months, trying to find one who would let me > have the surgery. I kept being told that my insurance company wouldn't > allow it. Pacificare kept saying it was not involved in the decision. > Finally, I figured out that Pacificare contracted with local doctor > groups. > It was the " physician associations " in Boulder, Colorado that wouldn't > allow > the surgery. At the time, my husband was the CFO of the school district > and > had a personal meeting with the Pacificare president. He explained that > Pacificare paid each physician association a set amount per subscriber. > How > they spent it was up to them. Whatever was left over at the end of the > month was split among the member physicians. > > I finally found a doctor 30 miles away. She was not a member of an > association and contracted directly with Pacificare. She allowed the > surgery. Trying to get surgery was a huge burden for me. I was already > three years behind in filing my tax returns. I imagine many people in HMOs > die because they can't fight. > > End result: Pacificare lost the school district contract of 3,300 > subscribers. I think its called " poetic justice. " > [mailto:hyperaldosteronism <mailto:hyperaldosteronism%40> <hyperaldosteronism%40>] > On Behalf Of ipscalifornia > > Dear Val, > > I am totally with you. I don't even remember all of the wrong > diagnosises I have had and all of the wrong medication I tried. Many > were from years ago and done by doctors I no longer see. I do have > respect for my current doctors and I want to stay with them so I > don't have to go through all of this again. I've noticed a > different attitude and willingness to work on my case in the last > few months. It just ocurred to me that with today's legal climate, > they are always concerned about law suits. I think it's the reason > they avoid committing to a diagnosis. Since I have built up a > relationship with my doctors over the last 2 years, they no longer > dismiss my symptoms and we discuss conditions and meds in a relaxed > manner. They pretty much include me in decisions about my > treatment. I'm not totally excusing them treating me for arthritis > and headaches for years without looking further for the cause but I > do understand that PA is so rare that doctors just don't consider > it. I know that my friends with HMO's would probable die before > they found out they had PA due lack of testing for financial > reasons. I think our job is to get the word out to doctors and > patients whenever we can. > > I would really like to help others with these problems avoid years > of inappropriate treament and years of suffering. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 I am thinking and theorizing: 1) In animal studies, T3 thyroid hormone increases aldosterone. I've found several such studies in animals but none in humans. 2) From the article below, thyroid dysfunction occurs in 29% of PA vs. 17% in essential hypertension (statistically significant difference) 3) PA is associated with other endocrinology pathologies (for me, hyperparathyroidism). See article below. 4) My thyroid failed (thereby lowering my T3) 5) Any introduction of T3 (for me) causes low K, elevated aldo, elevated blood pressure. When off all T3 for several months, my aldo is quite low (although ARR = 32.5). 6) Even though I take T4, my T3 is always very low. Normally, one would convert T4 to T3 as needed. I don't convert well at all. 7) My body keeps my T3 low to suppress aldosterone. My next step is to chemically suppress aldo, wait until my anxiety, BP, and sweats stabilize, and try T3 again. While it will be a study of n of 1, I think I might have hit on something. Normally, my " episodes " take many months to stabilize but that is on HCTZ. This is a set of emails between Dr. Grim and me back in 2005: Thank you for this, Dr. Grim. My " theory " of the connection of my parathyroid adenoma, hypothyroidism, K, aldosterone and renin is probably correct, but apparently little is known about it. Val -----Original Message----- [mailto:hyperaldosteronism ]On Behalf Of lowerbp2@... Recenti Prog Med. 2005 Jul-Aug;96(7-8):352-6. [High prevalence of thyroid disfunction in primary hyperaldosteronism] Santori C, Di Veroli C, Di Lazzaro F, Caliumi C, Petramala L, Cotesta D, Iorio M, Serra V, Celi M, D'Erasmo E, Letizia C. Day Hospital di Medicina Interna e dell'Ipertensione Arteriosa, Dipartimento di Scienze Cliniche. Primary hyperaldosteronism is associated with other endocrinology pathologies, like pheochromocytoma, Cushing's syndrome, hyperprolactinemia, primary hyperparathyroidism and a type of multiple endocrine neoplasia. Furthermore, association between hyperaldosteronism and thyroid diseases were already pointed out. Aim of the study was to value the prevalence of some thyroid diseases in a series of patients with primary hyperaldosteronism. We studied 105 consecutive patients with primary hyperaldosteronism, 43 (40.95%) with adrenal adenoma, 62 (50.05%) with bilateral adrenal hyperplasia and a control group of 223 patients with essential arterial hypertension. In all patients we tested thyroid function (FT3, FT4, TSH), thyroid antibodies (AbTPO, AbTG) and, sometimes, thyroid morphology by ultrasonography (US scan). The results of the study show that thyroid disfunction occur in 28.6% of patients with primary hyperaldosteronism and in 16.6% of patients with essential hypertension, with a statistically significative difference (chi2 = 0.012). At present, the relationship between primary hyperaldosteronism and thyroid diseases is unclear, but it can be hypothesized that there are common pathogenetic mechanisms, like an imbalance between various growth factors. Further studies are necessary to confirm the results of our study. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Val, Like I said, its been a while since I was on that lousy plan. It definitely was not an HMO, but used PCP's in private practice as gatekeepers. The PCP got paid a set rate per individual listing the doc as primary. It was up to the doctor or practice group to manage profitability. Referrals (which required forms) and expensive tests hit his bottom line. I know this because I finally got my PCP to disclose how he was paid by my insurer. It might have been called a POS plan, but I'm not entirely sure. I am sure that was a Piece Of Sh@? plan. I've been on PPOs with non-restrictive referral policies ever since. -jeff On 1/11/08, lowerbp2@... <lowerbp2@...> wrote: > > In a message dated 1/10/08 9:27:27 PM, val@... writes: > > > > > > Dr. Grim, > > > > Here are some test results from 1/05. I was in a major " episode " and had > > been on high K meds until one week before the tests. Note the FT3? I had > > been off all T3 for two or three months. > > > > Renin 0.9 (0.4 - 4.5) > > Aldosterone 19 (4 - 31) > > ARR = 21.1 (They use 20 - 30 as indicative of PA) > > Free testosterone 3.0 (0.0 - 2.2) H > > ACTH 169 (0 - 60) H > > Dopamine 46 (60 - 440) L > > Epinephrine <3 (0 - 25) > > Norepinephrine <10 (0 - 100) > > Metanephrine 123 (30 - 350) > > Normetanephrine 268 (50 - 650) > > Cortisol 18 (5 - 25) (9 a.m.) > > Prolactin 10 (2 - 15) > > DHEA-S 110 (19 - 205) > > Everything else normal except for low FT3 = 2.1 (2.4 - 4.2) > > > > There is a note that says " Urine catecholamines in this speciman show no > > evidence for a secreting neuroendocrine tumor. " > > > > I remember some more in May of 05. ARR was 32.5 but aldosterone was not > > high at all. My episode had subsided a little by then but BP was >160. > > I'll continue to look. > > > > Val > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 I want to block aldo to normalize BP and try a little T3 again. This should be interesting. I need to study spiro before I take it. It apparently has some effect on estrogen and progesterone that I might not like. Probably will just ask for Inspra. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2@... You have stage 1 (personal hyperaldosteronism) in my evolution article. When renin is this low aldo should be also but it is not. My guess is that spiro and DASHing will correct most of your problems. The urine tests make it very unlikely you have a pheo. Good to know! May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 > > > Dear Val, > > I am totally with you. I don't even remember all of the wrong > diagnosises I have had and all of the wrong medication I tried. Many > were from years ago and done by doctors I no longer see. I do have > respect for my current doctors and I want to stay with them so I > don't have to go through all of this again. I've noticed a > different attitude and willingness to work on my case in the last > few months. It just ocurred to me that with today's legal climate, > they are always concerned about law suits. > Or, maybe that all the literature has recently been updated with a sentence like " . . .traditionally thought to be rare, less than one percent of the population of hypertensives. . .shown to be. . .18 percent. . . " That made one of my old friends, who noticed on her own - an ICU doctor - call me up and apologise. She believed the water cooler gossip for 20 years, she said. I told her " at least you're reading journals. " I want to needle some of my old docs with " if you think any remedy must undergo the most rigorous scientific testing prior to being applied, why did you operate on something " traditionally thought. . . " to be/* anything */for so long? " Mustard plasters and Gentian Violet were 'traditionally thought. . .' but have gone the way of the Edsel. . " This profession has a built-in arrogance factor that is breathtaking. > > I think it's the reason > they avoid committing to a diagnosis. Since I have built up a > relationship with my doctors over the last 2 years, they no longer > dismiss my symptoms and we discuss conditions and meds in a relaxed > manner. They pretty much include me in decisions about my > treatment. I'm not totally excusing them treating me for arthritis > and headaches for years without looking further for the cause but I > do understand that PA is so rare > Or, as the new article intros and lit reviews now say " . . ..traditionally thought. . . " to be rare. > that doctors just don't consider > it. I know that my friends with HMO's would probable die before > they found out they had PA due lack of testing for financial > reasons. I think our job is to get the word out to doctors and > patients whenever we can. > > I would really like to help others with these problems avoid years > of inappropriate treament and years of suffering. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 In a message dated 1/11/08 12:15:43 AM, val@... writes: > > I want to block aldo to normalize BP and try a little T3 again. This should > be interesting. I need to study spiro before I take it. It apparently has > some effect on estrogen and progesterone that I might not like. Probably will > just ask for Inspra. > > Val > > > 10 x difference in cost but Inspra is likely the best choice but it has not been around as long as spiro (50 years) May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 In a message dated 1/11/08 1:33:29 AM, riothamus2@... writes: > Or, as the new article intros and lit reviews now say " . . > .traditionally thought. . . " to be rare. > Don't forget that Conn wrote a paper in 1964 suggesting that maybe 20% of pts with HTN have PA. Indeed this is the reason I got into the PA business---to prove him wrong. Not been able to do so for 44 years now! May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 In a message dated 1/11/08 7:50:10 AM, val@... writes: > > Dave, even though I don't always respond to your messages, I really value > your input and totally appreciate your " nudging. " Obviously, I cannot go on > the way I am. I intend to write my story in a non-threatening way and send > it to them, especially my doc for about 12 years and especially the CU endo. > They need to learn from my misery. Perhaps some of that built-in arrogance > can be tempered. > > Val > > > As we say: What you want is a doctor with excellent judgment and experience. Judgment comes from experience. Experience comes from bad judgment. May your pressure be low! Clarence E. Grim, BS, MS, MD Senior Consultant to Shared Care Research and Consulting, Inc. (sharedcareinc.com) Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI Clinical Professor of Nursing, Univ. of WI, Milwaukee Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Dave, even though I don't always respond to your messages, I really value your input and totally appreciate your " nudging. " Obviously, I cannot go on the way I am. I intend to write my story in a non-threatening way and send it to them, especially my doc for about 12 years and especially the CU endo. They need to learn from my misery. Perhaps some of that built-in arrogance can be tempered. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Dave I want to needle some of my old docs with " if you think any remedy must undergo the most rigorous scientific testing prior to being applied, why did you operate on something " traditionally thought. . . " to be/* anything */for so long? " Mustard plasters and Gentian Violet were 'traditionally thought. . .' but have gone the way of the Edsel. . " This profession has a built-in arrogance factor that is breathtaking. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.