Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 That is how I felt too, just like it was written about me!! Lynn Dudenhoefer ldudette@... Re: Sick and Tired Lynn - the book you recommended has come in. It describes me to a tea. I'm on page 23 and find it very good reading. Its written in English not Doctorease. Don't delay -- order your book today. in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Lynn, Judy here. I order the book the same day I read your post. It just came, can't wait to start it. I'll let you know as soon as I get started. Thanks for your suggestion I am really excited about the book. > Has anyone had a chance to check out my book recommendation yet? " Sick and Tired of Being Sick and Tired " Just wondering if anyone had read any of it yet and what your thoughts are. > Thanks > Sick and tired in Wisconsin and oh so sick of it. > Lynn Dudenhoefer > ldudette@c... > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Lynn, Judy here. I order the book the same day I read your post. It just came, can't wait to start it. I'll let you know as soon as I get started. Thanks for your suggestion I am really excited about the book. > Has anyone had a chance to check out my book recommendation yet? " Sick and Tired of Being Sick and Tired " Just wondering if anyone had read any of it yet and what your thoughts are. > Thanks > Sick and tired in Wisconsin and oh so sick of it. > Lynn Dudenhoefer > ldudette@c... > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Lynn, Judy here. I order the book the same day I read your post. It just came, can't wait to start it. I'll let you know as soon as I get started. Thanks for your suggestion I am really excited about the book. > Has anyone had a chance to check out my book recommendation yet? " Sick and Tired of Being Sick and Tired " Just wondering if anyone had read any of it yet and what your thoughts are. > Thanks > Sick and tired in Wisconsin and oh so sick of it. > Lynn Dudenhoefer > ldudette@c... > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Judy, Can't wait to hear what you think!! Lynn Re: Sick and Tired Lynn, Judy here. I order the book the same day I read your post. It just came, can't wait to start it. I'll let you know as soon as I get started. Thanks for your suggestion I am really excited about the book. > Has anyone had a chance to check out my book recommendation yet? " Sick and Tired of Being Sick and Tired " Just wondering if anyone had read any of it yet and what your thoughts are. > Thanks > Sick and tired in Wisconsin and oh so sick of it. > Lynn Dudenhoefer > ldudette@c... > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/2003 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2003 Report Share Posted October 29, 2003 Hey Lynn, My copy of the book was ordered at & Nobles, and I now have it! I have only read a few pages so far, and it IS very interesting, and I can already see all of us in that book! Thank you so much for suggesting it! Did you have snow yet? We didn't, but a few miles North they had about an inch that didn't last. Your fellow Wisconsinite, Tricia . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 My heart goes out to you, Sharon, I know it's been such a long haul. Whatever you decide, my prayers and best wishes are with you. Many Hugs, Sheena sharon <csharonxoxo@...> wrote: I'm seriously considering stopping treatment in September. I'm so tired of being ill. I'm type 2 and relapsed after a very skippy 5 months of treatment.I have to go get a transfusion every few weeks and have the shakes all the time. Also have an itchy rash that nothing touches. I have used all my cache of remedies and nothing works.I also have huge sweats most of the time and am short of breath and have no energy. I've become a complainer and I'm NOT usually like that. I believe in a positive approach to life, but this has me down to a very low point.I cannot tolerate even 15 minutes of sun without turning red and feeling burnt. I have diarrhea much of the time and have lost over half my hair. I don't know if I'll lose it all, but don't want to find out. I'm 64 and have no life outside of these @#$#@^% meds and my body problems.Thanks for giving me a place to vent. I'm serious about cutting it short tho.Sharon Ready for the edge of your seat? Check out tonight's top picks on TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 My name is Sharron too. I am sorry to hear that you are so worn out and depressed. I do not have hepatitis, but I do have a friend that has hepatitis and I am trying to learn all I can about it. I have had cancer and although I can't imagine what you're going through I can tell you a few things that have helped me immensely when I've been ready to give up. You may think I'm psycho after I tell you what's worked for me but it has. You may have already tried something like this, but this helped me tremendously. Find someone from the Community of Christ church in your area and ask them to administer to you. Even tho I am not a member of their church and am not particularly religious, their administration helped me remain free from pain etc. after surgery and during recovery. I would also suggest contacting someone who practices Reike. In many cases these practitioners can do great things for your spirit which in turn does great things for your body and your ability to heal.. I would be happy to talk to you in person if you send me your phone number, or you may call me if you like. My phone number is 512-626-4125. If you do not feel comfortable with a phone call, we can continue to correspond by email. Sharron Sick and tired I'm seriously considering stopping treatment in September. I'm so tired of being ill. I'm type 2 and relapsed after a very skippy 5 months of treatment.I have to go get a transfusion every few weeks and have the shakes all the time. Also have an itchy rash that nothing touches. I have used all my cache of remedies and nothing works.I also have huge sweats most of the time and am short of breath and have no energy. I've become a complainer and I'm NOT usually like that. I believe in a positive approach to life, but this has me down to a very low point.I cannot tolerate even 15 minutes of sun without turning red and feeling burnt. I have diarrhea much of the time and have lost over half my hair. I don't know if I'll lose it all, but don't want to find out. I'm 64 and have no life outside of these @#$#@^% meds and my body problems.Thanks for giving me a place to vent. I'm serious about cutting it short tho.Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2007 Report Share Posted July 30, 2007 Sharon, Honey, whatever you decide we will of course support you! The problems you are having are just not reasonable, its just that you have a doc who is not treating your sides.. it reminds me of what happened to sheena.. and its totally obscene that this could even happen IN AMERICA TODAY... that docs wont treat the side effects, they certainly would NOT do this to someone who is undergoing chemo for cancer... this is stupid and you should really write to the AMA about this, file complaints honey,, this is not right!!!! Since you are a geno 2, you only have to treat for 24 weeks,, how far along are you now? Arent you at least half way there? I KNOW about the fatigue, the shortness of breath, and feeling awful all the time,, but honey, remember you are fighting for your life here,, and you MUST CONCENTRATE ONLY on getting through this treatment!!! Please , if you need more support, send me your phone number via my personal email addy and honey, Ill call you and help in any way I can,, redjaxjm@... please dont make any decisions about it until you have have results of at least a 12 week PCR.. hugs honey, jackiesharon <csharonxoxo@...> wrote: I'm seriously considering stopping treatment in September. I'm so tired of being ill. I'm type 2 and relapsed after a very skippy 5 months of treatment.I have to go get a transfusion every few weeks and have the shakes all the time. Also have an itchy rash that nothing touches. I have used all my cache of remedies and nothing works.I also have huge sweats most of the time and am short of breath and have no energy. I've become a complainer and I'm NOT usually like that. I believe in a positive approach to life, but this has me down to a very low point.I cannot tolerate even 15 minutes of sun without turning red and feeling burnt. I have diarrhea much of the time and have lost over half my hair. I don't know if I'll lose it all, but don't want to find out. I'm 64 and have no life outside of these @#$#@^% meds and my body problems.Thanks for giving me a place to vent. I'm serious about cutting it short tho.SharonJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 The U of Colo endo sounds like many practicing endos, who get more arrogant when they don't know how PA progresses, how to manage a case, etc (which has been the case in four I have consulted). They have more to cover up because it is still widely thought a gland disease. Not by the researchers I've met who think of it as a sweeping systemic condition. I wouldn't wait one moment before getting a doctor that knows the situation. Then if I was feeling well enough to pursue my social conscience, I'd draft a factual letter (minus anger, exhaustiom and other emotions) to the local medical board including some of the newer case management mentions in PubMed / Medline articles. They do mention it frequently. Dr. Grim ain't whistling Dixie. Include his evolution piece. Some of the most interesting stuff I have seen lately is on the search for MC and other rhedopsin GPCR family receptors to invent new drug(s) that block those which may be associated with the calcification, eliminative and neuro function problems. Spiro and eplerenone apparently do not help in those areas with later stage cases. Excess aldo seems to go on causing harm even when BP and K are helped. Even my cardio, who is open to look at new things and does know how to manage cases is fascinated with these subjects, as someone who started out a chemist. One endo who was running the usual diabetes factory amid swarms of drug reps amd incentives was afraid if someone took spiro they'd have adrenal failure. " Why, " I asked? Not one single report, article or study; she was just afraid. This may have been a rare admission of " free floating anxiety " from a practicing endo. Dave Valarie wrote: > > Back in March of 2005, (after I posted my test results), Dr. Grim wrote: > > " Sounds like PA to me. Now the task is to find out which type you have. If > you have a FH of HTN and/or low K she should test you for GRA by doing an > overnight dex suppression test and measuring cortisol AND aldo next am. > This will help clarify Cushing's issue as well. " > > In April or May of 2005, the University of Colorado endo just flatly > said I > didn't have PA. No further interest. Last BP with her was 165/95. I was > so sick back then I couldn't fight or deal. > > Here it is April of 2008 and I'm still trying to deal. I'm not much > further > than I was back then. I've had a FAX into my current endo for a week, > asking for MEN1 testing. How many years do I have to wait? BTW, I've had a > dramatic BP reaction to 50 mg of Spiro, but I'm still getting episodes of > " gripping " and still the early morning sweats. I had K tested last > Thursday. How long do results take? > > Looking back in my FitDay entries from 2005, I think I avoided a stroke by > eating very low salt, average 986/day back then. I think I got so bad in > 2007 because we were building a house and eating junk on the fly. For the > last week, I've averaged 3,900 mg K/d and 777 mg Na/d. I'm just not > getting > better this time and I've been bad since last summer. > > I'm so angry - and so tired. > > Val > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Val, Do you have a Primary that you could work through and who would work with you? I ran into similar problems with the Endo I went to and found my Primary to be much more helpful and willing to learn about PA. He suspected PA and sent me to U of M for a diagnosis after I'd wasted 8 months and thousands of dollars on the Endo. I don't bother with the Endo any longer. He charged me $125 for a 5-10 minute office visit and kept me coming back for nothing, IMHO. As for the flushing and sweats, many of us in this group seem to have them. I've never found anything in the literature relating them to PA but it sure seems like there could be some relationship to me. Good luck, a --- Valarie <val@...> wrote: > Back in March of 2005, (after I posted my test > results), Dr. Grim wrote: > > " Sounds like PA to me. Now the task is to find out > which type you have. If > you have a FH of HTN and/or low K she should test > you for GRA by doing an > overnight dex suppression test and measuring > cortisol AND aldo next am. > This will help clarify Cushing's issue as well. " > > In April or May of 2005, the University of Colorado > endo just flatly said I > didn't have PA. No further interest. Last BP with > her was 165/95. I was > so sick back then I couldn't fight or deal. > > Here it is April of 2008 and I'm still trying to > deal. I'm not much further > than I was back then. I've had a FAX into my > current endo for a week, > asking for MEN1 testing. How many years do I have > to wait? BTW, I've had a > dramatic BP reaction to 50 mg of Spiro, but I'm > still getting episodes of > " gripping " and still the early morning sweats. I > had K tested last > Thursday. How long do results take? > > Looking back in my FitDay entries from 2005, I think > I avoided a stroke by > eating very low salt, average 986/day back then. I > think I got so bad in > 2007 because we were building a house and eating > junk on the fly. For the > last week, I've averaged 3,900 mg K/d and 777 mg > Na/d. I'm just not getting > better this time and I've been bad since last > summer. > > I'm so angry - and so tired. > > Val > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Val, I honestly believe it's in all our best interests to find a Primary who will work with us. I was lucky enough to find a young guy who admitted that he didn't know much about PA but was willing to learn about it. As he said, we learned about it together but at least he knew enough to suspect that I had it. It seems the Endos don't even know that there are stages to PA. If you're not in Stage 4 with all the classic symptoms they can't figure it out. Then again, I was in State 4 and he still was unwilling or unable to give me a definite diagnosis. He THOUGHT I might have PA but seemed confounded by the fact that I wasn't constantly hypokalemic, only sometimes, and that occasionally my renin was in the low normal range. My aldo was always high, though. Duh..... The Dr. at U of M that finally diagnosed me (and in one visit, no less) was a specialist in refractory hypertension. I'd read on lots of sites including Mayo Clinic's, that spiro should be discontinued for 4-6 weeks before AVS. I was terrified, at that point I think I would have died if I'd had to go off spiro. I was amazed when they called me to set up my AVS and told me to continue taking all my current medications. I asked specifically about spiro and was told to continue it. I got worried that maybe I was told this by someone who didn't know what she was talking about or maybe I misunderstood. So I called back two days later and asked again about the spiro and was told the same thing, continue taking all meds including spiro. When I started thinking about it, it made sense. Spiro does not stop the production of aldo, it blocks the aldo receptor sites in the distal renal tubule. Samples are taken directly from the adrenal vein during AVS and measure the amount of aldo being produced by the adrenal gland. My AVS showed definite hypersecretion of both my bilateral adenomas despite the fact that I stayed on all meds. So now I can't figure out why anyone has to go off spiro for AVS. a --- Valarie <val@...> wrote: > My primary wouldn't give me spiro because she > doesn't know anything about > it. She said she'd never seen PA. I waited two > more months to get into the > endo. I think when I went in there with my labs, > Dr. Grim's paper, etc., > and told her what to look at, bells started ringing. > I honestly don't > believe she's ever treated PA. She mentioned > talking to Dr. Grim . had > other patients, etc. Then, she wanted me to wait > two weeks before going on > Inspra because she didn't know how much to give me. > When I protested, she > finally got around to phoning in an RX eight days > later. It took a full > week of Inspra nausea to get an RX for spiro. Before > I started spiro, I > asked her if there were any other tests she wanted > to do (like Dex > suppression) and she answered, " No. " Do you have to > be off spiro to do Dex? > > > I'm already out-of-pocket well over $12,000 with no > direction other than > what I've gotten on this board. I have > high-deductible insurance. My > little trip to the ER in December was over $2500. I > would pay any amount, > however, if I could just get good care and > direction. > > I know I should get a different endo but I don't > want to wait another 2 - 3 > months. I want to get MEN1 testing and then go to > Mayo and get AVS. I will > need BP meds, Ativan, and Ambien to be able to go > off spiro for six weeks. > Regardless of what happens after that, I will need > someone here. Maybe > that's when I find someone who knows something about > PA. I found three docs > who are members of the Am Soc of HTN. One is at CU > Medical - NO. The other > two are Dominquez MD and Stuart L Linas MD. > Neither one is very close > to where I live. Dr. Grim, do you know anything > about them? Do I need an > endo or an HTN specialist? > > On 50 mg of spiro, BP went from ~165 to ~135 with a > few lower/higher blips. > It was 180 at endo's office, measured improperly - > feet hanging off the > table. Now, after three days of 75 mg spiro, my BP > this morning is 120. My > sweats weren't too bad this morning. I've been on > spiro a total of 17 days. > I had a bad day yesterday (hence my whine) and it > blipped up to 159 (for a > short while) with bad sweats. Average salt intake > has been 781. I hate > this lability and don't know what I did to bring on > the 159 with bad sweats, > but I think I let myself get too hungry. It seems > that my glucose is even > labile. Saturday, I felt so well that I didn't even > take any Ativan!!! > > BTW, I found one article so far about aldo > increasing markedly when exerting > in the heat. I know I cannot stand heat. While we > were working on this > house last summer, there were many days I thought > the heat was killing me. > Others working here were hot but nothing like I was > feeling. In reading > back through our old posts, I've found heat, sweats, > etc. mentioned quite a > lot. It has been a relief for me to read others' > symptoms. That's the only > way I've been able to conclude that I'm not just > crazy. I thank God and Dr. > Grim for this board. I think researchers are more > centered on the > mechanical (measureable) aspects of disease than the > human suffering part of > it. How does one measure suffering? Do these docs > understand that taking a > week for a call-back or RX is extremely difficult > for the patient? > > Anyway, a, thanks for letting me whine a bit. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On > Behalf Of a Hall > > Do you have a Primary that you could work through > and who would work with you? I ran into similar > problems with the Endo I went to and found my > Primary > to be much more helpful and willing to learn about > PA. > He suspected PA and sent me to U of M for a > diagnosis > after I'd wasted 8 months and thousands of dollars > on > the Endo. I don't bother with the Endo any longer. > He charged me $125 for a 5-10 minute office visit > and > kept me coming back for nothing, IMHO. As for the > flushing and sweats, many of us in this group seem > to > have them. I've never found anything in the > literature relating them to PA but it sure seems > like > there could be some relationship to me. > > Good luck, > a > > > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Hi Dave, I do intend to pursue my social conscience, minus the emotion. I've always been about spinning my wheels until everything is right with the world. I will gather articles new and from way back to point out that this disease is not new and not rare. I have a fairly massive computer library of abstracts, all categorized (and all read). When in episodic crises for the last six years, I've gone to docs and ERs. They just continued me on the HCTZ. One gave me K pills. I quit going to her because I was just too weak and anxious to drive the 25 miles to her office. I just didn't realize that I (an economist by training) had to know more than they did. I am so indebted to everyone here, especially our resident doc, for providing a forum for our education. It seems that for you, calcium is attaching to tissue rather than building bone. I have heard that Vitamin K can increase the affinity of calcium to build bone instead of soft tissue calcifications, but don't know enough to speak with any knowledge. If you come across studies, I'd really appreciate your posting any further information. We are probably all at risk. When I get the immediately critical things addressed, I'm going to go to this doc. <http://www.dailycamera.com/news/2008/mar/31/the-best-medicine-best-new-boul der-center-solely/> http://www.dailycamera.com/news/2008/mar/31/the-best-medicine-best-new-bould er-center-solely/ When we first moved to Boulder, 18 years ago, he had just opened his clinic and had no patients. He said he used to go walk around the shopping center to kill time (shoulda' been reading about PA). Over the years, we have become friends. I know he will be wide open to learning about what I've been through. He always wants to talk politics; diagnosed my daughter's PCOS in the first 10 minutes of the visit, all while commenting on the local political scene. Sent her to a (good) specialist who confirmed the diagnosis and instituted treatment. It was good doctoring. The PCOS doctor was well over 65 years old. " One endo who was running the usual diabetes factory amid swarms of drug reps amd incentives was afraid if someone took spiro they'd have adrenal failure. " Why, " I asked? Not one single report, article or study; she was just afraid. " Yeah. Affirmative action? My endo didn't know anything about inspra. The GP (Harvard) has never heard of PA and wouldn't prescribe spiro. What are they teaching them? Is there no pride in the art anymore? Maybe just not enough hours in the day. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Dave The U of Colo endo sounds like many practicing endos, who get more arrogant when they don't know how PA progresses, how to manage a case, etc (which has been the case in four I have consulted). They have more to cover up because it is still widely thought a gland disease. Not by the researchers I've met who think of it as a sweeping systemic condition. I wouldn't wait one moment before getting a doctor that knows the situation. Then if I was feeling well enough to pursue my social conscience, I'd draft a factual letter (minus anger, exhaustiom and other emotions) to the local medical board including some of the newer case management mentions in PubMed / Medline articles. They do mention it frequently. Dr. Grim ain't whistling Dixie. Include his evolution piece. Some of the most interesting stuff I have seen lately is on the search for MC and other rhedopsin GPCR family receptors to invent new drug(s) that block those which may be associated with the calcification, eliminative and neuro function problems. Spiro and eplerenone apparently do not help in those areas with later stage cases. Excess aldo seems to go on causing harm even when BP and K are helped. Even my cardio, who is open to look at new things and does know how to manage cases is fascinated with these subjects, as someone who started out a chemist. One endo who was running the usual diabetes factory amid swarms of drug reps amd incentives was afraid if someone took spiro they'd have adrenal failure. " Why, " I asked? Not one single report, article or study; she was just afraid. This may have been a rare admission of " free floating anxiety " from a practicing endo. Dave Valarie wrote: > > Back in March of 2005, (after I posted my test results), Dr. Grim wrote: > > " Sounds like PA to me. Now the task is to find out which type you have. If > you have a FH of HTN and/or low K she should test you for GRA by doing an > overnight dex suppression test and measuring cortisol AND aldo next am. > This will help clarify Cushing's issue as well. " > > In April or May of 2005, the University of Colorado endo just flatly > said I > didn't have PA. No further interest. Last BP with her was 165/95. I was > so sick back then I couldn't fight or deal. > > Here it is April of 2008 and I'm still trying to deal. I'm not much > further > than I was back then. I've had a FAX into my current endo for a week, > asking for MEN1 testing. How many years do I have to wait? BTW, I've had a > dramatic BP reaction to 50 mg of Spiro, but I'm still getting episodes of > " gripping " and still the early morning sweats. I had K tested last > Thursday. How long do results take? > > Looking back in my FitDay entries from 2005, I think I avoided a stroke by > eating very low salt, average 986/day back then. I think I got so bad in > 2007 because we were building a house and eating junk on the fly. For the > last week, I've averaged 3,900 mg K/d and 777 mg Na/d. I'm just not > getting > better this time and I've been bad since last summer. > > I'm so angry - and so tired. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Wow, if I didn't have to go off spiro, that would be a relief. I'd be strong enough to make the trip. I've wondered why people have to go off spiro if it doesn't affect the absolute secretion of it. What is U of M? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of a Hall Val, I honestly believe it's in all our best interests to find a Primary who will work with us. I was lucky enough to find a young guy who admitted that he didn't know much about PA but was willing to learn about it. As he said, we learned about it together but at least he knew enough to suspect that I had it. It seems the Endos don't even know that there are stages to PA. If you're not in Stage 4 with all the classic symptoms they can't figure it out. Then again, I was in State 4 and he still was unwilling or unable to give me a definite diagnosis. He THOUGHT I might have PA but seemed confounded by the fact that I wasn't constantly hypokalemic, only sometimes, and that occasionally my renin was in the low normal range. My aldo was always high, though. Duh..... The Dr. at U of M that finally diagnosed me (and in one visit, no less) was a specialist in refractory hypertension. I'd read on lots of sites including Mayo Clinic's, that spiro should be discontinued for 4-6 weeks before AVS. I was terrified, at that point I think I would have died if I'd had to go off spiro. I was amazed when they called me to set up my AVS and told me to continue taking all my current medications. I asked specifically about spiro and was told to continue it. I got worried that maybe I was told this by someone who didn't know what she was talking about or maybe I misunderstood. So I called back two days later and asked again about the spiro and was told the same thing, continue taking all meds including spiro. When I started thinking about it, it made sense. Spiro does not stop the production of aldo, it blocks the aldo receptor sites in the distal renal tubule. Samples are taken directly from the adrenal vein during AVS and measure the amount of aldo being produced by the adrenal gland. My AVS showed definite hypersecretion of both my bilateral adenomas despite the fact that I stayed on all meds. So now I can't figure out why anyone has to go off spiro for AVS. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 The University of Michigan, or as Dr. Grim says, where it all started. He trained with Dr. Conn at U of M. a --- Valarie <val@...> wrote: > Wow, if I didn't have to go off spiro, that would be > a relief. I'd be > strong enough to make the trip. I've wondered why > people have to go off > spiro if it doesn't affect the absolute secretion of > it. > > What is U of M? > > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Wonderful quesion, a. Dr. Grim? Is this one of those old ideas that die harder for non-medical reasons? Dave a Hall wrote: > > Val, > I honestly believe it's in all our best interests to > find a Primary who will work with us. I was lucky > enough to find a young guy who admitted that he didn't > know much about PA but was willing to learn about it. > As he said, we learned about it together but at least > he knew enough to suspect that I had it. It seems the > Endos don't even know that there are stages to PA. If > you're not in Stage 4 with all the classic symptoms > they can't figure it out. Then again, I was in State > 4 and he still was unwilling or unable to give me a > definite diagnosis. He THOUGHT I might have PA but > seemed confounded by the fact that I wasn't constantly > hypokalemic, only sometimes, and that occasionally my > renin was in the low normal range. My aldo was always > high, though. Duh..... > The Dr. at U of M that finally diagnosed me (and in > one visit, no less) was a specialist in refractory > hypertension. I'd read on lots of sites including > Mayo Clinic's, that spiro should be discontinued for > 4-6 weeks before AVS. I was terrified, at that point > I think I would have died if I'd had to go off spiro. > I was amazed when they called me to set up my AVS and > told me to continue taking all my current medications. > I asked specifically about spiro and was told to > continue it. I got worried that maybe I was told this > by someone who didn't know what she was talking about > or maybe I misunderstood. So I called back two days > later and asked again about the spiro and was told the > same thing, continue taking all meds including spiro. > When I started thinking about it, it made sense. > Spiro does not stop the production of aldo, it blocks > the aldo receptor sites in the distal renal tubule. > Samples are taken directly from the adrenal vein > during AVS and measure the amount of aldo being > produced by the adrenal gland. My AVS showed definite > hypersecretion of both my bilateral adenomas despite > the fact that I stayed on all meds. So now I can't > figure out why anyone has to go off spiro for AVS. > > a > > --- Valarie <val@... <mailto:val%40wyosip.com>> wrote: > > > My primary wouldn't give me spiro because she > > doesn't know anything about > > it. She said she'd never seen PA. I waited two > > more months to get into the > > endo. I think when I went in there with my labs, > > Dr. Grim's paper, etc., > > and told her what to look at, bells started ringing. > > I honestly don't > > believe she's ever treated PA. She mentioned > > talking to Dr. Grim . had > > other patients, etc. Then, she wanted me to wait > > two weeks before going on > > Inspra because she didn't know how much to give me. > > When I protested, she > > finally got around to phoning in an RX eight days > > later. It took a full > > week of Inspra nausea to get an RX for spiro. Before > > I started spiro, I > > asked her if there were any other tests she wanted > > to do (like Dex > > suppression) and she answered, " No. " Do you have to > > be off spiro to do Dex? > > > > > > I'm already out-of-pocket well over $12,000 with no > > direction other than > > what I've gotten on this board. I have > > high-deductible insurance. My > > little trip to the ER in December was over $2500. I > > would pay any amount, > > however, if I could just get good care and > > direction. > > > > I know I should get a different endo but I don't > > want to wait another 2 - 3 > > months. I want to get MEN1 testing and then go to > > Mayo and get AVS. I will > > need BP meds, Ativan, and Ambien to be able to go > > off spiro for six weeks. > > Regardless of what happens after that, I will need > > someone here. Maybe > > that's when I find someone who knows something about > > PA. I found three docs > > who are members of the Am Soc of HTN. One is at CU > > Medical - NO. The other > > two are Dominquez MD and Stuart L Linas MD. > > Neither one is very close > > to where I live. Dr. Grim, do you know anything > > about them? Do I need an > > endo or an HTN specialist? > > > > On 50 mg of spiro, BP went from ~165 to ~135 with a > > few lower/higher blips. > > It was 180 at endo's office, measured improperly - > > feet hanging off the > > table. Now, after three days of 75 mg spiro, my BP > > this morning is 120. My > > sweats weren't too bad this morning. I've been on > > spiro a total of 17 days. > > I had a bad day yesterday (hence my whine) and it > > blipped up to 159 (for a > > short while) with bad sweats. Average salt intake > > has been 781. I hate > > this lability and don't know what I did to bring on > > the 159 with bad sweats, > > but I think I let myself get too hungry. It seems > > that my glucose is even > > labile. Saturday, I felt so well that I didn't even > > take any Ativan!!! > > > > BTW, I found one article so far about aldo > > increasing markedly when exerting > > in the heat. I know I cannot stand heat. While we > > were working on this > > house last summer, there were many days I thought > > the heat was killing me. > > Others working here were hot but nothing like I was > > feeling. In reading > > back through our old posts, I've found heat, sweats, > > etc. mentioned quite a > > lot. It has been a relief for me to read others' > > symptoms. That's the only > > way I've been able to conclude that I'm not just > > crazy. I thank God and Dr. > > Grim for this board. I think researchers are more > > centered on the > > mechanical (measureable) aspects of disease than the > > human suffering part of > > it. How does one measure suffering? Do these docs > > understand that taking a > > week for a call-back or RX is extremely difficult > > for the patient? > > > > Anyway, a, thanks for letting me whine a bit. > > > > Val > > > > From: hyperaldosteronism > <mailto:hyperaldosteronism%40> > > [mailto:hyperaldosteronism > <mailto:hyperaldosteronism%40>] On > > Behalf Of a Hall > > > > Do you have a Primary that you could work through > > and who would work with you? I ran into similar > > problems with the Endo I went to and found my > > Primary > > to be much more helpful and willing to learn about > > PA. > > He suspected PA and sent me to U of M for a > > diagnosis > > after I'd wasted 8 months and thousands of dollars > > on > > the Endo. I don't bother with the Endo any longer. > > He charged me $125 for a 5-10 minute office visit > > and > > kept me coming back for nothing, IMHO. As for the > > flushing and sweats, many of us in this group seem > > to > > have them. I've never found anything in the > > literature relating them to PA but it sure seems > > like > > there could be some relationship to me. > > > > Good luck, > > a > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 When aldo is blocked, renin goes up as does AI and AII. This can stimulate both adrenals and make it look like one has bilateral hyperplasia. As you are doing well I would sit tight now. On Apr 7, 2008, at 8:49 PM, Dave wrote: > o now I can't > > figure out why anyone has to go off spiro for AVS. > > May your pressure be low! CE Grim BS, MS, MD High Blood Pressure Consulting Specializing in Difficult to Manage High Blood Pressure Consult the following at for details bloodpressureline hyperaldosteronism Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Yes and if you recall our mission here it to train as many primarys as we can on how to recognize and manage PA which is present in many of their patients. We want to be sure their other pts with PA don't go thru the hell many of those on this site. On Apr 7, 2008, at 1:40 PM, a Hall wrote: > Val, > I honestly believe it's in all our best interests to > find a Primary who will work with us. I was lucky > enough to find a young guy who admitted that he didn't > know much about PA but was willing to learn about it. > As he said, we learned about it together but at least > he knew enough to suspect that I had it. It seems the > Endos don't even know that there are stages to PA. If > you're not in Stage 4 with all the classic symptoms > they can't figure it out. Then again, I was in State > 4 and he still was unwilling or unable to give me a > definite diagnosis. He THOUGHT I might have PA but > seemed confounded by the fact that I wasn't constantly > hypokalemic, only sometimes, and that occasionally my > renin was in the low normal range. My aldo was always > high, though. Duh..... > The Dr. at U of M that finally diagnosed me (and in > one visit, no less) was a specialist in refractory > hypertension. I'd read on lots of sites including > Mayo Clinic's, that spiro should be discontinued for > 4-6 weeks before AVS. I was terrified, at that point > I think I would have died if I'd had to go off spiro. > I was amazed when they called me to set up my AVS and > told me to continue taking all my current medications. > I asked specifically about spiro and was told to > continue it. I got worried that maybe I was told this > by someone who didn't know what she was talking about > or maybe I misunderstood. So I called back two days > later and asked again about the spiro and was told the > same thing, continue taking all meds including spiro. > When I started thinking about it, it made sense. > Spiro does not stop the production of aldo, it blocks > the aldo receptor sites in the distal renal tubule. > Samples are taken directly from the adrenal vein > during AVS and measure the amount of aldo being > produced by the adrenal gland. My AVS showed definite > hypersecretion of both my bilateral adenomas despite > the fact that I stayed on all meds. So now I can't > figure out why anyone has to go off spiro for AVS. > > a > > --- Valarie <val@...> wrote: > > > My primary wouldn't give me spiro because she > > doesn't know anything about > > it. She said she'd never seen PA. I waited two > > more months to get into the > > endo. I think when I went in there with my labs, > > Dr. Grim's paper, etc., > > and told her what to look at, bells started ringing. > > I honestly don't > > believe she's ever treated PA. She mentioned > > talking to Dr. Grim . had > > other patients, etc. Then, she wanted me to wait > > two weeks before going on > > Inspra because she didn't know how much to give me. > > When I protested, she > > finally got around to phoning in an RX eight days > > later. It took a full > > week of Inspra nausea to get an RX for spiro. Before > > I started spiro, I > > asked her if there were any other tests she wanted > > to do (like Dex > > suppression) and she answered, " No. " Do you have to > > be off spiro to do Dex? > > > > > > I'm already out-of-pocket well over $12,000 with no > > direction other than > > what I've gotten on this board. I have > > high-deductible insurance. My > > little trip to the ER in December was over $2500. I > > would pay any amount, > > however, if I could just get good care and > > direction. > > > > I know I should get a different endo but I don't > > want to wait another 2 - 3 > > months. I want to get MEN1 testing and then go to > > Mayo and get AVS. I will > > need BP meds, Ativan, and Ambien to be able to go > > off spiro for six weeks. > > Regardless of what happens after that, I will need > > someone here. Maybe > > that's when I find someone who knows something about > > PA. I found three docs > > who are members of the Am Soc of HTN. One is at CU > > Medical - NO. The other > > two are Dominquez MD and Stuart L Linas MD. > > Neither one is very close > > to where I live. Dr. Grim, do you know anything > > about them? Do I need an > > endo or an HTN specialist? > > > > On 50 mg of spiro, BP went from ~165 to ~135 with a > > few lower/higher blips. > > It was 180 at endo's office, measured improperly - > > feet hanging off the > > table. Now, after three days of 75 mg spiro, my BP > > this morning is 120. My > > sweats weren't too bad this morning. I've been on > > spiro a total of 17 days. > > I had a bad day yesterday (hence my whine) and it > > blipped up to 159 (for a > > short while) with bad sweats. Average salt intake > > has been 781. I hate > > this lability and don't know what I did to bring on > > the 159 with bad sweats, > > but I think I let myself get too hungry. It seems > > that my glucose is even > > labile. Saturday, I felt so well that I didn't even > > take any Ativan!!! > > > > BTW, I found one article so far about aldo > > increasing markedly when exerting > > in the heat. I know I cannot stand heat. While we > > were working on this > > house last summer, there were many days I thought > > the heat was killing me. > > Others working here were hot but nothing like I was > > feeling. In reading > > back through our old posts, I've found heat, sweats, > > etc. mentioned quite a > > lot. It has been a relief for me to read others' > > symptoms. That's the only > > way I've been able to conclude that I'm not just > > crazy. I thank God and Dr. > > Grim for this board. I think researchers are more > > centered on the > > mechanical (measureable) aspects of disease than the > > human suffering part of > > it. How does one measure suffering? Do these docs > > understand that taking a > > week for a call-back or RX is extremely difficult > > for the patient? > > > > Anyway, a, thanks for letting me whine a bit. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On > > Behalf Of a Hall > > > > Do you have a Primary that you could work through > > and who would work with you? I ran into similar > > problems with the Endo I went to and found my > > Primary > > to be much more helpful and willing to learn about > > PA. > > He suspected PA and sent me to U of M for a > > diagnosis > > after I'd wasted 8 months and thousands of dollars > > on > > the Endo. I don't bother with the Endo any longer. > > He charged me $125 for a 5-10 minute office visit > > and > > kept me coming back for nothing, IMHO. As for the > > flushing and sweats, many of us in this group seem > > to > > have them. I've never found anything in the > > literature relating them to PA but it sure seems > > like > > there could be some relationship to me. > > > > Good luck, > > a > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > May your pressure be low! CE Grim BS, MS, MD High Blood Pressure Consulting Specializing in Difficult to Manage High Blood Pressure Consult the following at for details bloodpressureline hyperaldosteronism Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 I am always happy to talk to them. I am not sure I recall talking directly to her. You can also suggest they come to our site. Pehaps we need a site for Drs?? but I think it would be best to learn from our whole team her. On Apr 7, 2008, at 11:11 AM, Valarie wrote: > My primary wouldn't give me spiro because she doesn't know anything > about > it. She said she'd never seen PA. I waited two more months to get > into the > endo. I think when I went in there with my labs, Dr. Grim's paper, > etc., > and told her what to look at, bells started ringing. I honestly don't > believe she's ever treated PA. She mentioned talking to Dr. Grim . had > other patients, etc. Then, she wanted me to wait two weeks before > going on > Inspra because she didn't know how much to give me. When I protested, > she > finally got around to phoning in an RX eight days later. It took a > full > week of Inspra nausea to get an RX for spiro. Before I started spiro, > I > asked her if there were any other tests she wanted to do (like Dex > suppression) and she answered, " No. " Do you have to be off spiro to > do Dex? > > I'm already out-of-pocket well over $12,000 with no direction other > than > what I've gotten on this board. I have high-deductible insurance. My > little trip to the ER in December was over $2500. I would pay any > amount, > however, if I could just get good care and direction. > > I know I should get a different endo but I don't want to wait another > 2 - 3 > months. I want to get MEN1 testing and then go to Mayo and get AVS. I > will > need BP meds, Ativan, and Ambien to be able to go off spiro for six > weeks. > Regardless of what happens after that, I will need someone here. Maybe > that's when I find someone who knows something about PA. I found > three docs > who are members of the Am Soc of HTN. One is at CU Medical - NO. The > other > two are Dominquez MD and Stuart L Linas MD. Neither one is very > close > to where I live. Dr. Grim, do you know anything about them? Do I need > an > endo or an HTN specialist? > > On 50 mg of spiro, BP went from ~165 to ~135 with a few lower/higher > blips. > It was 180 at endo's office, measured improperly - feet hanging off > the > table. Now, after three days of 75 mg spiro, my BP this morning is > 120. My > sweats weren't too bad this morning. I've been on spiro a total of 17 > days. > I had a bad day yesterday (hence my whine) and it blipped up to 159 > (for a > short while) with bad sweats. Average salt intake has been 781. I hate > this lability and don't know what I did to bring on the 159 with bad > sweats, > but I think I let myself get too hungry. It seems that my glucose is > even > labile. Saturday, I felt so well that I didn't even take any Ativan!!! > > BTW, I found one article so far about aldo increasing markedly when > exerting > in the heat. I know I cannot stand heat. While we were working on this > house last summer, there were many days I thought the heat was > killing me. > Others working here were hot but nothing like I was feeling. In > reading > back through our old posts, I've found heat, sweats, etc. mentioned > quite a > lot. It has been a relief for me to read others' symptoms. That's the > only > way I've been able to conclude that I'm not just crazy. I thank God > and Dr. > Grim for this board. I think researchers are more centered on the > mechanical (measureable) aspects of disease than the human suffering > part of > it. How does one measure suffering? Do these docs understand that > taking a > week for a call-back or RX is extremely difficult for the patient? > > Anyway, a, thanks for letting me whine a bit. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of a Hall > > Do you have a Primary that you could work through > and who would work with you? I ran into similar > problems with the Endo I went to and found my Primary > to be much more helpful and willing to learn about PA. > He suspected PA and sent me to U of M for a diagnosis > after I'd wasted 8 months and thousands of dollars on > the Endo. I don't bother with the Endo any longer. > He charged me $125 for a 5-10 minute office visit and > kept me coming back for nothing, IMHO. As for the > flushing and sweats, many of us in this group seem to > have them. I've never found anything in the > literature relating them to PA but it sure seems like > there could be some relationship to me. > > Good luck, > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 " But you are almost there " . CEG On Apr 6, 2008, at 10:49 PM, Valarie wrote: > Back in March of 2005, (after I posted my test results), Dr. Grim > wrote: > > " Sounds like PA to me. Now the task is to find out which type you > have. If > you have a FH of HTN and/or low K she should test you for GRA by > doing an > overnight dex suppression test and measuring cortisol AND aldo next > am. > This will help clarify Cushing's issue as well. " > > In April or May of 2005, the University of Colorado endo just flatly > said I > didn't have PA. No further interest. Last BP with her was 165/95. I > was > so sick back then I couldn't fight or deal. > > Here it is April of 2008 and I'm still trying to deal. I'm not much > further > than I was back then. I've had a FAX into my current endo for a week, > asking for MEN1 testing. How many years do I have to wait? BTW, I've > had a > dramatic BP reaction to 50 mg of Spiro, but I'm still getting > episodes of > " gripping " and still the early morning sweats. I had K tested last > Thursday. How long do results take? > > Looking back in my FitDay entries from 2005, I think I avoided a > stroke by > eating very low salt, average 986/day back then. I think I got so bad > in > 2007 because we were building a house and eating junk on the fly. For > the > last week, I've averaged 3,900 mg K/d and 777 mg Na/d. I'm just not > getting > better this time and I've been bad since last summer. > > I'm so angry - and so tired. > > Val > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Is anyone interested in setting up a free conference call daily 9 am est to check in and do the thirty days? Just a ten min. call.. Lu Quote Link to comment Share on other sites More sharing options...
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