Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 I can do that..... what does PA stand for? I have my " thing " all ready to upload.... I wanted someone to read it and tell me what is wrong with me.....giggle.....wish life were that simple. But if someone has a clue, it would be wonderful. dash Re: questions from newbie my guess is that you were having hypokalemia muscle spasms. Can you get report from EKG. Also the normal angio is good news. It is very unlikely that you will get sick from or die from CAD due to atherosclerosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 PA = primary aldosteronism Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of dash I can do that..... what does PA stand for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 I talk on IM with Helen every week or so. I will ask her why she left. I don't think she is doing too well. So far, she has not been able to get her BP under control. Last I heard, she was not allowed Inspra because she's not yet in heart failure. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2 Val: I just noted that Helen Pearson signed off of our site. Any correspondance with her in last few months? I think she is the founder of this group in fact. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 I suggest we try to get her to a Dr. who I know who can get her Inspra in England. I had suggested this before but it was too far she said. Tell her I am worried about her and why she stopped. I sent her an email but have gotten no response. Perhaps we can do a collection to send her some Inspra? But she will need someone to follow her there. I dont recall if she takes her own BP for example. CE Grim, MD At least a 30 day trial would see if it helps. CE Grim MD On Apr 14, 2009, at 7:30 PM, Valarie wrote: > > > I talk on IM with Helen every week or so. I will ask her why she > left. I don't think she is doing too well. So far, she has not been > able > to get her BP under control. Last I heard, she was not allowed Inspra > because she's not yet in heart failure. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of lowerbp2 > > Val: I just noted that Helen Pearson signed off of our site. Any > correspondance with her in last few months? I think she is the > founder of > this group in fact. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 If someone has Helen's address, I can send her about 100 or so 50mg tabs. > > > > > > > I talk on IM with Helen every week or so. I will ask her why she > > left. I don't think she is doing too well. So far, she has not been > > able > > to get her BP under control. Last I heard, she was not allowed Inspra > > because she's not yet in heart failure. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of lowerbp2 > > > > Val: I just noted that Helen Pearson signed off of our site. Any > > correspondance with her in last few months? I think she is the > > founder of > > this group in fact. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 Thanks but at Val's suggestion we will hold off for now. Thanks again. CE Grim MD. On Apr 14, 2009, at 9:43 PM, rsheltondavis wrote: > > > If someone has Helen's address, I can send her about 100 or so 50mg > tabs. > > > > > > > > > > > > > I talk on IM with Helen every week or so. I will ask her > why she > > > left. I don't think she is doing too well. So far, she has not > been > > > able > > > to get her BP under control. Last I heard, she was not allowed > Inspra > > > because she's not yet in heart failure. > > > > > > Val > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of lowerbp2 > > > > > > Val: I just noted that Helen Pearson signed off of our site. Any > > > correspondance with her in last few months? I think she is the > > > founder of > > > this group in fact. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2009 Report Share Posted April 14, 2009 Why don't we all hold off and I will talk to her next time she comes on IM. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of rsheltondavis If someone has Helen's address, I can send her about 100 or so 50mg tabs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 If she is still on the inet, she can find them in some other country, herself. We, eg, can still buy in Canada. Some patients do that when they reach their annual limit before the " gap " . Is the problem price? Regards RE: Re: questions from newbie Why don't we all hold off and I will talk to her next time she comes on IM. Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 I'm not sure. I don't think she'd take anything that her current doc doesn't prescribe. She has extreme gluten sensitivity so that is a problem. Let me just talk to her when she comes on IM. I will tell her how concerned the group is. BTW, I bought myself a stock of spiro. My doc approves only one 30-day prescription at a time (like I'm going to OD on spiro) and sometimes she doesn't get back to the pharmacy for a week. I like having my own stock. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of jwwright If she is still on the inet, she can find them in some other country, herself. We, eg, can still buy in Canada. Some patients do that when they reach their annual limit before the " gap " . Is the problem price? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 You may be able to save by getting bigger pills and breaking them. Clarence E. Grim, BS, MS, MD On Wednesday, April 15, 2009, at 11:06AM, " Valarie " <val@...> wrote: >I'm not sure. I don't think she'd take anything that her current doc >doesn't prescribe. She has extreme gluten sensitivity so that is a problem. >Let me just talk to her when she comes on IM. I will tell her how concerned >the group is. > >BTW, I bought myself a stock of spiro. My doc approves only one 30-day >prescription at a time (like I'm going to OD on spiro) and sometimes she >doesn't get back to the pharmacy for a week. I like having my own stock. > >Val > >From: hyperaldosteronism >[mailto:hyperaldosteronism ] On Behalf Of jwwright > > >If she is still on the inet, she can find them in some >other country, herself. >We, eg, can still buy in Canada. Some patients do that >when they reach their annual limit before the " gap " . > >Is the problem price? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 How many other people have this only 30 days problem? With or without refills? Medicare Prescription Drug Program Part D and the New York State Medical Assistance Program both fill 90-day supply Rxs and refills for maintenance medications for people with chronic conditions. Some Part D contractors encourage 90-day dispenses by mail order. So many of the problems described on this site seem to reflect the prejudices of backwoods MDs. ======================================================================== =============== On Apr 15, 2009, at 12:06 PM, Valarie wrote: > > > I'm not sure. I don't think she'd take anything that her current doc > doesn't prescribe. She has extreme gluten sensitivity so that is a > problem. > Let me just talk to her when she comes on IM. I will tell her how > concerned > the group is. > > BTW, I bought myself a stock of spiro. My doc approves only one 30-day > prescription at a time (like I'm going to OD on spiro) and sometimes > she > doesn't get back to the pharmacy for a week. I like having my own > stock. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of jwwright > > If she is still on the inet, she can find them in some > other country, herself. > We, eg, can still buy in Canada. Some patients do that > when they reach their annual limit before the " gap " . > > Is the problem price? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 HI Arthur I have had the 30 day pill problem with the Pharmacy. I figure they can make more money billing every 30 days as pills in volume are less expensive, The pharmacy did this to me on one of my scripts that was wrote for 90 days they changed it to 30 days, I am getting ready to transfer it out. Pharmacys cant always be trusted either. ita > > > > > > > I'm not sure. I don't think she'd take anything that her current doc > > doesn't prescribe. She has extreme gluten sensitivity so that is a > > problem. > > Let me just talk to her when she comes on IM. I will tell her how > > concerned > > the group is. > > > > BTW, I bought myself a stock of spiro. My doc approves only one 30-day > > prescription at a time (like I'm going to OD on spiro) and sometimes > > she > > doesn't get back to the pharmacy for a week. I like having my own > > stock. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of jwwright > > > > If she is still on the inet, she can find them in some > > other country, herself. > > We, eg, can still buy in Canada. Some patients do that > > when they reach their annual limit before the " gap " . > > > > Is the problem price? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 My insurance will fill three months for the price of two, but endo only writes RX for 30 days at a time. To change that, I have to go pay an office call. Given my $6,000 deductible, why bother? To avoid her killing me, especially when she neglects to respond to the pharmacy in a timely manner, I have stocked up from an online source. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of arthur springer How many other people have this only 30 days problem? With or without refills? Medicare Prescription Drug Program Part D and the New York State Medical Assistance Program both fill 90-day supply Rxs and refills for maintenance medications for people with chronic conditions. Some Part D contractors encourage 90-day dispenses by mail order. So many of the problems described on this site seem to reflect the prejudices of backwoods MDs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 I do that. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lowerbp2 You may be able to save by getting bigger pills and breaking them. Clarence E. Grim, BS, MS, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 Many programs only do a copay on 30 days. they are in cahootes with someone. I always recommend that those who buy their meds do so 100 at a time as this is the stock bottle and may be cheaper as the pharm does not have to count out. Many times this is cheaper that making 3 copays. But patients do not seem to undstand this. They say yes but I dont get my copay! CE Grim MD On Apr 15, 2009, at 1:38 PM, arthur springer wrote: > > > How many other people have this only 30 days problem? > With or without refills? > Medicare Prescription Drug Program Part D and the New York State > Medical Assistance Program both fill 90-day supply Rxs and refills for > maintenance medications for people with chronic conditions. > Some Part D contractors encourage 90-day dispenses by mail order. > So many of the problems described on this site seem to reflect the > prejudices of backwoods MDs. > > ====================================================================== > == > =============== > > On Apr 15, 2009, at 12:06 PM, Valarie wrote: > > > > > > > I'm not sure. I don't think she'd take anything that her current doc > > doesn't prescribe. She has extreme gluten sensitivity so that is a > > problem. > > Let me just talk to her when she comes on IM. I will tell her how > > concerned > > the group is. > > > > BTW, I bought myself a stock of spiro. My doc approves only one > 30-day > > prescription at a time (like I'm going to OD on spiro) and sometimes > > she > > doesn't get back to the pharmacy for a week. I like having my own > > stock. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of jwwright > > > > If she is still on the inet, she can find them in some > > other country, herself. > > We, eg, can still buy in Canada. Some patients do that > > when they reach their annual limit before the " gap " . > > > > Is the problem price? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 Dr. Grim, I had an AVS done last week Friday at the U of M Hospital by Dr. Cho. Everything went fine. Absolutely no pain following the procedure and no apparent complications. Yesterday I noticed that I was feeling pain in my right kidney, even though the growth is located on my left adrenal gland. Today the pain was somewhat severe so I contacted Dr. Cho's office and was prescribed Hydrocodoneapap and sent to the local hospital for CAT scans with and without the meds that they put in through the vein. It took nearly 2 1/2 hours for the pain to subside after initially taking 2 5MG/325MG tablets. If you would please respond, I would like to know if this is typical and what might have caused the relapse. Thank-you for taking the time to read this. > > > > > > > I'm not sure. I don't think she'd take anything that her current doc > > doesn't prescribe. She has extreme gluten sensitivity so that is a > > problem. > > Let me just talk to her when she comes on IM. I will tell her how > > concerned > > the group is. > > > > BTW, I bought myself a stock of spiro. My doc approves only one > 30-day > > prescription at a time (like I'm going to OD on spiro) and sometimes > > she > > doesn't get back to the pharmacy for a week. I like having my own > > stock. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism] On Behalf Of jwwright > > > > If she is still on the inet, she can find them in some > > other country, herself. > > We, eg, can still buy in Canada. Some patients do that > > when they reach their annual limit before the " gap " . > > > > Is the problem price? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 not " typical " again we don't know because we dont have a large data base on our site of experiences after AVS. What we need to do is to have a registry for AVS studies that would include post study problems. After 100 or so contributed data we should be able to better say what is typical. After 1000 we will be even better. But more likely those who have problems will be more likely to complete registry. What we would like is a total registry for every pt in US, nay the world. Then we would be able to better answer questions. Any takers on funding such a project? My guess is that they bruised a vein and it leaked a bit. CE Grim MD On Apr 15, 2009, at 9:10 PM, Debartolo wrote: > > > Dr. Grim, > I had an AVS done last week Friday at the U of M Hospital by Dr. > Cho. Everything went fine. Absolutely no pain following the > procedure and no apparent complications. Yesterday I noticed that I > was feeling pain in my right kidney, even though the growth is > located on my left adrenal gland. Today the pain was somewhat > severe so I contacted Dr. Cho's office and was prescribed > Hydrocodoneapap and sent to the local hospital for CAT scans with > and without the meds that they put in through the vein. It took > nearly 2 1/2 hours for the pain to subside after initially taking 2 > 5MG/325MG tablets. If you would please respond, I would like to > know if this is typical and what might have caused the relapse. > Thank-you for taking the time to read this. > > > > > > > > > > > > > I'm not sure. I don't think she'd take anything that her > current doc > > > doesn't prescribe. She has extreme gluten sensitivity so that is a > > > problem. > > > Let me just talk to her when she comes on IM. I will tell her how > > > concerned > > > the group is. > > > > > > BTW, I bought myself a stock of spiro. My doc approves only one > > 30-day > > > prescription at a time (like I'm going to OD on spiro) and > sometimes > > > she > > > doesn't get back to the pharmacy for a week. I like having my own > > > stock. > > > > > > Val > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism] On Behalf Of > jwwright > > > > > > If she is still on the inet, she can find them in some > > > other country, herself. > > > We, eg, can still buy in Canada. Some patients do that > > > when they reach their annual limit before the " gap " . > > > > > > Is the problem price? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 I can't even get a response for a case volume registry in NY. Good luck with the world. On Apr 16, 2009, at 11:25 AM, Clarence Grim wrote: > > > not " typical " again we don't know because we dont have a large data > base on our site of experiences after AVS. > > What we need to do is to have a registry for AVS studies that would > include post study problems. After 100 or so contributed data we > should be able to better say what is typical. After 1000 we will be > even better. But more likely those who have problems will be more > likely to complete registry. What we would like is a total registry > for every pt in US, nay the world. Then we would be able to better > answer questions. > > Any takers on funding such a project? > > My guess is that they bruised a vein and it leaked a bit. > > CE Grim MD > > On Apr 15, 2009, at 9:10 PM, Debartolo wrote: > > > > > > > Dr. Grim, > > I had an AVS done last week Friday at the U of M Hospital by Dr. > > Cho. Everything went fine. Absolutely no pain following the > > procedure and no apparent complications. Yesterday I noticed that I > > was feeling pain in my right kidney, even though the growth is > > located on my left adrenal gland. Today the pain was somewhat > > severe so I contacted Dr. Cho's office and was prescribed > > Hydrocodoneapap and sent to the local hospital for CAT scans with > > and without the meds that they put in through the vein. It took > > nearly 2 1/2 hours for the pain to subside after initially taking 2 > > 5MG/325MG tablets. If you would please respond, I would like to > > know if this is typical and what might have caused the relapse. > > Thank-you for taking the time to read this. > > > > > > > > > > > > > > > > > > > I'm not sure. I don't think she'd take anything that her > > current doc > > > > doesn't prescribe. She has extreme gluten sensitivity so that > is a > > > > problem. > > > > Let me just talk to her when she comes on IM. I will tell her > how > > > > concerned > > > > the group is. > > > > > > > > BTW, I bought myself a stock of spiro. My doc approves only one > > > 30-day > > > > prescription at a time (like I'm going to OD on spiro) and > > sometimes > > > > she > > > > doesn't get back to the pharmacy for a week. I like having my > own > > > > stock. > > > > > > > > Val > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism] On Behalf Of > > jwwright > > > > > > > > If she is still on the inet, she can find them in some > > > > other country, herself. > > > > We, eg, can still buy in Canada. Some patients do that > > > > when they reach their annual limit before the " gap " . > > > > > > > > Is the problem price? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 CT scans will miss most PA problems. Need to do aldo and renin first. I prefer HTN MRI which looks at renal arteries and adrenals. On Apr 13, 2009, at 11:46 PM, Debartolo wrote: > > > I'm not sure what heart spasms are, but when my potassium dipped > below 3.0 my heart took off like a race horse. Scared the heck out > of me and took me to emergency. Personally, I'd request a CAT scan > of your adrenal glands. That's how they located mine. CAT scans of > kidneys, urine tests and ultrasounds proved nothing. The starting > point was the CAT scan of the adrenal glands. > > > > From: dash <dash4@...> > Subject: questions from newbie > hyperaldosteronism > Date: Monday, April 13, 2009, 10:05 PM > > I have low potassium, and I also have heart spasms, and high blood > pressure.. Swelling at times and also other signs of kidneys not > working right (edema) but no kidney disease. > > What would be any other physical symptoms of hyperalderonsim? I am > also pre osteoporosis and low vitamin d. I took calcium religiously > since age 28 and I am now 66. Does this sound like it? I would like > to know what to ask my doctor that I will be seeing on Friday this > week. Any thoughts? dash > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Hello all, I am still reading all the info and slowly starting the diet the last few days. I find the egg drink great for my schedule. It was just what I was looking for. Transitioning completely should not be too long for me because my current diet is very close already. However, I have some questions. 1. I have tested positive for many food allergies, one being coconut. I am concerned about taking the coconut oil. Should I? Or can I substitute something else in all these recipes etc? I used olive oil today. 2. Is there a reason why you should make your own saurkraut juice and not use the stuff you can buy at the store? Note- I used to drink the canned stuff during meals when I first starting getting the stomach pains months ago and it seemed to help. I then quit when they gave me the allergy diet. On reading your site decided to try it again while waiting for my own to ferment. I got stomach pains as soon as I drank it. Not sure why. thanks, Heidi 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.