Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 In a message dated 6/19/07 10:47:04 PM, hillarysbeach@... writes: > > Greetings: > > I'm new to this group, though I've been diagnosed with hyperaldosteronism > for nearly a year > now. I just had an adrenal vein sampling a few weeks ago which showed > bilateral > overproduction, with relatively more aldosterone production on my right > side. My CT was > inconclusive for tumor, and after the AVS they still aren't sure. > My guess is they are sure that it is a problem on both sides. Send us the data to look at to help them interpret it. You want the aldo and cortisol results from each side. > > Does anyone know: > 1. If there is a center or medical institute (maybe affiliated with a > university) that specializes > in hyperaldosteronism? > There are a number-where do you live. > > 2. Any thoughts on whether to go forward with a surgery to remove my right > gland if the left > gland is also overproducing? > If you can be controlled with DASH diet and spiro on Inspra we do not suggest surgery. > > Thanks! > Hillary > Can you send us a detailed " Hillary's story " for our files. I assume you are not running for president. > > > 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. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 In a message dated 6/19/07 11:03:59 PM, sheltonlayne@... writes: > > > > > > Greetings: > > > > I'm new to this group, though I've been diagnosed with > hyperaldosteronism for nearly a year > > now. I just had an adrenal vein sampling a few weeks ago which > showed bilateral > > overproduction, with relatively more aldosterone production on my > right side. My CT was > > inconclusive for tumor, and after the AVS they still aren't sure. > > > > Does anyone know: > > 1. If there is a center or medical institute (maybe affiliated > with a university) that specializes > > in hyperaldosteronism? > > > > 2. Any thoughts on whether to go forward with a surgery to remove > my right gland if the left > > gland is also overproducing? > > > > Thanks! > > Hillary > > > Hi Hillary > > Welcome to the board. I have over production on boths sides I don't > think that surgery should be the first option. I have only known > surgery recommended when there is a distinct tumor on one side and > only one side, the tumor side, is overproducing. Perhaps if one side > is overproducing and no tumor is present, but again only one side is > overproducing. For me surgery will be a last resort. > > Are you on any meds, like Spiro or Inspra? > > Are you DASHing? > > I do 225mg of Inspra daily in three 75 mg doses and I DASH > religiously. That is all for now and I have stablized most of my > symptoms. I try to stay at 600 to 750 mg of Sodium per day which > tough but doable. I am a mess if I mess with any of those two things > in my life. > > I hope you have a great stay here with us, someone will come along > that is a lot more knowledgeable than I am to help you, trust me on > that, there are some really great people here. > > Sincerely, Randy > <><May we all be DASHing!!!><> > > > Randy thanks for the update and the verification that DASHing and Spiro or Inspra can control 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. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 > > Greetings: > > I'm new to this group, though I've been diagnosed with hyperaldosteronism for nearly a year > now. I just had an adrenal vein sampling a few weeks ago which showed bilateral > overproduction, with relatively more aldosterone production on my right side. My CT was > inconclusive for tumor, and after the AVS they still aren't sure. > > Does anyone know: > 1. If there is a center or medical institute (maybe affiliated with a university) that specializes > in hyperaldosteronism? > > 2. Any thoughts on whether to go forward with a surgery to remove my right gland if the left > gland is also overproducing? > > Thanks! > Hillary > Hi Hillary Welcome to the board. I have over production on boths sides I don't think that surgery should be the first option. I have only known surgery recommended when there is a distinct tumor on one side and only one side, the tumor side, is overproducing. Perhaps if one side is overproducing and no tumor is present, but again only one side is overproducing. For me surgery will be a last resort. Are you on any meds, like Spiro or Inspra? Are you DASHing? I do 225mg of Inspra daily in three 75 mg doses and I DASH religiously. That is all for now and I have stablized most of my symptoms. I try to stay at 600 to 750 mg of Sodium per day which tough but doable. I am a mess if I mess with any of those two things in my life. I hope you have a great stay here with us, someone will come along that is a lot more knowledgeable than I am to help you, trust me on that, there are some really great people here. Sincerely, Randy <><May we all be DASHing!!!><> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Thanks to all who replied. My " story " (is there a special place to post these??) is that I struggled for nearly two years begging doctors for help before I finally got to an endocrinologist. Even the endo started out saying " its just stress " to my high blood pressure (at age 35), 5 trips to the bathroom every hour, anxiety, insomnia, shaking, lack of focus and many other symptoms that were not at all typical for me. In fact, the endo did the saline suppression test the first time, said my " numbers were off the charts " and thus " there must have been an error at the lab " and made me do it over again! Of course, they got the same results the second time. I was put on Spiro which helped tremendously with a few symptoms, like my BP. I felt like a new person for the first time in a few years. I had an extremeley stressful life experience which I believe brought this on for me, but no doctor has yet to explain why I have hyperaldosteronism or what I can do about it. Any thoughts? Can trauma cause the onset of hyperaldosteronism? My AVS showed my " gradient " on the right side gland at 2.8, though both are overproducing. So I am now seeking a second opinion about whether to have it removed. The four big concerns for me are: 1. Is it not possible to have children now that I'm on Spiro (causes birth defects) and without it, my BP is way, way too high for safety (for me or a baby); 2. Will my overproduction in both glands continue to get plentiful and thus, too hard to handle as I get older; 3. Is there a connection between hyperaldosteronism and anxiety/depression? 4. How can I sleep better at night without being addicted to sleeping pills! I live in the bay area, California, and luckily am surrounded by fantastic medical facilities. But I hoped there would be another specialist besides Dr. Eng, my current endo, for a second opinion - or a research institute I might contact for more information. And no, I'm not familiar with the " DASH " diet, but will look into it. Thanks again for any and all insights! Hillary > > > > Greetings: > > > > I'm new to this group, though I've been diagnosed with > hyperaldosteronism for nearly a year > > now. I just had an adrenal vein sampling a few weeks ago which > showed bilateral > > overproduction, with relatively more aldosterone production on my > right side. My CT was > > inconclusive for tumor, and after the AVS they still aren't sure. > > > > Does anyone know: > > 1. If there is a center or medical institute (maybe affiliated > with a university) that specializes > > in hyperaldosteronism? > > > > 2. Any thoughts on whether to go forward with a surgery to remove > my right gland if the left > > gland is also overproducing? > > > > Thanks! > > Hillary > > > Hi Hillary > > Welcome to the board. I have over production on boths sides I don't > think that surgery should be the first option. I have only known > surgery recommended when there is a distinct tumor on one side and > only one side, the tumor side, is overproducing. Perhaps if one side > is overproducing and no tumor is present, but again only one side is > overproducing. For me surgery will be a last resort. > > Are you on any meds, like Spiro or Inspra? > > Are you DASHing? > > I do 225mg of Inspra daily in three 75 mg doses and I DASH > religiously. That is all for now and I have stablized most of my > symptoms. I try to stay at 600 to 750 mg of Sodium per day which > tough but doable. I am a mess if I mess with any of those two things > in my life. > > I hope you have a great stay here with us, someone will come along > that is a lot more knowledgeable than I am to help you, trust me on > that, there are some really great people here. > > Sincerely, Randy > <><May we all be DASHing!!!><> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Hi Hillary: Where in the Bay Area do you live? I too live in the Bay Area and after a long struggle now have a good endo who is very familiar with the procedure and is in constant contact with Dr. Young from Mayo Clinic in Rochester. Also, please post your AVS results so we can take a look. Unfortunately through this forum we have learned that many doctors dont know how to interpret the lab results. Farah On 6/20/07, hillarysbeach <hillarysbeach@...> wrote: > > Thanks to all who replied. My " story " (is there a special place to post > these??) is that I > struggled for nearly two years begging doctors for help before I finally > got to an > endocrinologist. Even the endo started out saying " its just stress " to my > high blood > pressure (at age 35), 5 trips to the bathroom every hour, anxiety, > insomnia, shaking, lack > of focus and many other symptoms that were not at all typical for me. In > fact, the endo > did the saline suppression test the first time, said my " numbers were off > the charts " and > thus " there must have been an error at the lab " and made me do it over > again! Of course, > they got the same results the second time. > > I was put on Spiro which helped tremendously with a few symptoms, like my > BP. I felt like > a new person for the first time in a few years. I had an extremeley > stressful life experience > which I believe brought this on for me, but no doctor has yet to explain > why I have > hyperaldosteronism or what I can do about it. Any thoughts? Can trauma > cause the onset > of hyperaldosteronism? > > My AVS showed my " gradient " on the right side gland at 2.8, though both > are > overproducing. So I am now seeking a second opinion about whether to have > it removed. > The four big concerns for me are: > > 1. Is it not possible to have children now that I'm on Spiro (causes birth > defects) and > without it, my BP is way, way too high for safety (for me or a baby); > > 2. Will my overproduction in both glands continue to get plentiful and > thus, too hard to > handle as I get older; > > 3. Is there a connection between hyperaldosteronism and > anxiety/depression? > > 4. How can I sleep better at night without being addicted to sleeping > pills! > > I live in the bay area, California, and luckily am surrounded by fantastic > medical facilities. > But I hoped there would be another specialist besides Dr. Eng, my current > endo, for a > second opinion - or a research institute I might contact for more > information. > > And no, I'm not familiar with the " DASH " diet, but will look into it. > > Thanks again for any and all insights! > Hillary > > > > > > > > > Greetings: > > > > > > I'm new to this group, though I've been diagnosed with > > hyperaldosteronism for nearly a year > > > now. I just had an adrenal vein sampling a few weeks ago which > > showed bilateral > > > overproduction, with relatively more aldosterone production on my > > right side. My CT was > > > inconclusive for tumor, and after the AVS they still aren't sure. > > > > > > Does anyone know: > > > 1. If there is a center or medical institute (maybe affiliated > > with a university) that specializes > > > in hyperaldosteronism? > > > > > > 2. Any thoughts on whether to go forward with a surgery to remove > > my right gland if the left > > > gland is also overproducing? > > > > > > Thanks! > > > Hillary > > > > > Hi Hillary > > > > Welcome to the board. I have over production on boths sides I don't > > think that surgery should be the first option. I have only known > > surgery recommended when there is a distinct tumor on one side and > > only one side, the tumor side, is overproducing. Perhaps if one side > > is overproducing and no tumor is present, but again only one side is > > overproducing. For me surgery will be a last resort. > > > > Are you on any meds, like Spiro or Inspra? > > > > Are you DASHing? > > > > I do 225mg of Inspra daily in three 75 mg doses and I DASH > > religiously. That is all for now and I have stablized most of my > > symptoms. I try to stay at 600 to 750 mg of Sodium per day which > > tough but doable. I am a mess if I mess with any of those two things > > in my life. > > > > I hope you have a great stay here with us, someone will come along > > that is a lot more knowledgeable than I am to help you, trust me on > > that, there are some really great people here. > > > > Sincerely, Randy > > <><May we all be DASHing!!!><> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Hi Hillary, Here are my thoughts on your concerns: 1) You can get pregnant but need to plan it carefully so that you aren't on Spiro. I'm not sure if they know yet if Inspra is safe during pregnancy, but it would be worth asking your OB/GYN. Pregnancy improves PA in many cases so they only risky time would be while you were trying to get pregnant but even then if you maintained a VERY strict low sodium diet (i.e. DASH which stands for Dietary Approach to Stopping Hypertension) you could probably get by without Spiro or Inspra. I am one of the few PA people I know whose blood pressure worsened while pregnant, but that could've been due to other pregnancy complications and I'm assuming it would've been a problem for me whether I had PA or not. 2) As for overproduction, my guess is that it won't get worse. I've had follow-up scans and there was no change in the size of either tumor. Generally, you can control the overproduction through diet and medication, if needed. 3) There is a relationship between anxiety/depression and hypokalemia. However, many of us on the group still experience (or are treated for) symptoms of depression or inappropriate rage so my guess is that there is a link it just hasn't been researched and explained that I'm aware of. 4) I wish I knew the answer to getting a good night's sleep! I use Benadryl occasionally but most just go to bed really late. As for how you got PA and what to do about it - I don't believe there is any known cause for PA. The preferred treatment is Spiro or Inspra and dietary modifications (DASH). Surgery helps some but not all. Both of my glands are overproducing, they think (I have a discreet MRI-visible tumor on each adrenal), but they couldn't get a good sample from my right side during the AVS. I wouldn't consider surgery at this point without some type of evidence that it would significantly benefit me. Good luck! Re: Just had my AVS Thanks to all who replied. My " story " (is there a special place to post these??) is that I struggled for nearly two years begging doctors for help before I finally got to an endocrinologist. Even the endo started out saying " its just stress " to my high blood pressure (at age 35), 5 trips to the bathroom every hour, anxiety, insomnia, shaking, lack of focus and many other symptoms that were not at all typical for me. In fact, the endo did the saline suppression test the first time, said my " numbers were off the charts " and thus " there must have been an error at the lab " and made me do it over again! Of course, they got the same results the second time. I was put on Spiro which helped tremendously with a few symptoms, like my BP. I felt like a new person for the first time in a few years. I had an extremeley stressful life experience which I believe brought this on for me, but no doctor has yet to explain why I have hyperaldosteronism or what I can do about it. Any thoughts? Can trauma cause the onset of hyperaldosteronism? My AVS showed my " gradient " on the right side gland at 2.8, though both are overproducing. So I am now seeking a second opinion about whether to have it removed. The four big concerns for me are: 1. Is it not possible to have children now that I'm on Spiro (causes birth defects) and without it, my BP is way, way too high for safety (for me or a baby); 2. Will my overproduction in both glands continue to get plentiful and thus, too hard to handle as I get older; 3. Is there a connection between hyperaldosteronism and anxiety/depression? 4. How can I sleep better at night without being addicted to sleeping pills! I live in the bay area, California, and luckily am surrounded by fantastic medical facilities. But I hoped there would be another specialist besides Dr. Eng, my current endo, for a second opinion - or a research institute I might contact for more information. And no, I'm not familiar with the " DASH " diet, but will look into it. Thanks again for any and all insights! Hillary > > > > Greetings: > > > > I'm new to this group, though I've been diagnosed with > hyperaldosteronism for nearly a year > > now. I just had an adrenal vein sampling a few weeks ago which > showed bilateral > > overproduction, with relatively more aldosterone production on my > right side. My CT was > > inconclusive for tumor, and after the AVS they still aren't sure. > > > > Does anyone know: > > 1. If there is a center or medical institute (maybe affiliated > with a university) that specializes > > in hyperaldosteronism? > > > > 2. Any thoughts on whether to go forward with a surgery to remove > my right gland if the left > > gland is also overproducing? > > > > Thanks! > > Hillary > > > Hi Hillary > > Welcome to the board. I have over production on boths sides I don't > think that surgery should be the first option. I have only known > surgery recommended when there is a distinct tumor on one side and > only one side, the tumor side, is overproducing. Perhaps if one side > is overproducing and no tumor is present, but again only one side is > overproducing. For me surgery will be a last resort. > > Are you on any meds, like Spiro or Inspra? > > Are you DASHing? > > I do 225mg of Inspra daily in three 75 mg doses and I DASH > religiously. That is all for now and I have stablized most of my > symptoms. I try to stay at 600 to 750 mg of Sodium per day which > tough but doable. I am a mess if I mess with any of those two things > in my life. > > I hope you have a great stay here with us, someone will come along > that is a lot more knowledgeable than I am to help you, trust me on > that, there are some really great people here. > > Sincerely, Randy > <><May we all be DASHing!!!><> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 Hi Hillary, Thanks for posting your story, there is a section in files (look over on far left of your screen) to include this. It is helpful having the stories in one place for easy review, I only wish more here would include there stories. I am suffering from extreme 'brain fog' this am, so please excuse typos, etc. I also was diagnosed 'officially' with hypertension in my mid 30s, after the birth of my last son in 1992. During all 3 pregnancies I had pre-eclampsia (high BP) that complicated matters. Was able to bear all 3 to term successfully however!! No drugs while pregnant at all, natural childbirth included. Altho with the 2 I had to be induced because labor not progressing and baby stressed. I then went over 10 years of being treated for Hypertension unsuccessfully, they were never able to get it withing 'normal' ranges with meds. Not until I went to Mayo in March of 05 was I diagnosed with PA and treated successfully. BTW, the MRIs I have had all show plenty of 'lesions' in my brain which they told me were caused by either/both hypertension and migraines. No wonder I can never remember anything!! So Hillary, you are actually pretty lucky to be diagnosed so quickly!! Hang in there...Inspra, combined with verapamil, toprol and Maxzide did the trick for a while. Then my BP started climbing again and spiking at times. Just recently switched to Spiro and increased verapamil to 240. Also am now off of Toprol (I believe it may have been making my raynauds's worse, and wasn't doing a thing to lower BP). While my systolic is now pretty good, usually in the 130s, i still have trouble getting my diastolic down under 100. I have also wondered about the connection between stress and PA. I was diagnosed with PTSD in 1987 because of severe longterm childhood abuse. I have often wondered if maybe the adrenals just get 'pooped' out after all those years of constant 'fight or flight' impulses...no Doc has ever said much about this, one way or the other. I just get a kind of strange look and a 'hmmmmmm'. Dr. Grim, have you ever noticed a connection between PTSD and development of adrenal disorders? How did you get them to do an AVS so soon? It must have been your lab results being 'off the charts'? No one I have seen wants to go there with me, they just keep trying to medicate it. > > ..... I had an extremeley stressful life experience > which I believe brought this on for me, but no doctor has yet to explain why I have hyperaldosteronism or what I can do about it. Any thoughts? Can trauma cause the onset of hyperaldosteronism?..... > You may want to try an muscle relaxer to help you sleep. Another option would be melatonin, but get the time release kind. I have found that the muscle relaxer i use (zanaflex) helps me go right to sleep, but I am still up 1-2 times because of nocturia (better than 3-5 times like it was before the zanaflex). I didn't have much luck with the melatonin (OTC), but some do. Definately look into the Dash Diet, it has helped me the most. Get the book by , you will probably have to have your bookstore order it, or get it from Amazon. Salt in you diet must be eliminated, or reduced to bare minimum!! I had one piece of pizza last night and am sure paying for it today--- BP up, excessive sweating, yuck!! Good luck Hillary, I hope you find someone there who can help you get well. Kim in MN > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 In a message dated 6/24/07 7:51:47 AM, cornerstone@... writes: > While my > systolic is now pretty good, usually in the 130s, i still have trouble > getting my diastolic down under 100. > If you are using an automatic machine then I woud ignore the diastolic pressure but be certain your provider doucments your device is accurate on you. > > I have also wondered about the connection between stress and PA. I was > diagnosed with PTSD in 1987 because of severe longterm childhood > abuse. I have often wondered if maybe the adrenals just get 'pooped' > out after all those years of constant 'fight or flight' impulses...no > Doc has ever said much about this, one way or the other. I just get a > kind of strange look and a 'hmmmmmm'. > Not likley pooped out. More likely stiumulated causing hyperplasia. Maybe early PA. See my article. > > Dr. Grim, have you ever noticed a connection between PTSD and > development of adrenal disorders? > Nope reason we need a good data base to collect information on as many as possible. 1000 would make us the best database in the world on PA. Recurit all your friends with PA. > > How did you get them to do an AVS so soon? It must have been your lab > results being 'off the charts'? No one I have seen wants to go there > with me, they just keep trying to medicate it. > If meds work do not do AVS. > > > > ..... I had an extremeley stressful life experience > > which I believe brought this on for me, but no doctor has yet to > explain why I have hyperaldosteronism or what I can do about it. Any > thoughts? Can trauma cause the onset of hyperaldosteronism? thou > 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. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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