Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. Please tell us your test values, pre spiro for: aldosterone renin potassium Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lori Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and " brain fog " ,edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Well, I do not know my values before Spiro because it was stumbled upon due to hypokalemia and I have taken Yaz as birth control for several yrs, which has a low dose Spiro in it. The tumor HAS to be making aldosterone since my levels are extremely high even on Spiro. My K+ levels have always been around 2.7-2.9 without supplementation, which is cardiac arrythmia range. I'm a nurse, I am familiar with the complications of surgery, ie general anesthesia,etc, but it is much better than living the life I am living right now, with the exhaustion and all the pills.I have a terrible quality of life. I have 2 young children, work full time as a nurse,etc. and the fatigue is interfering with every aspect of my life. -- On Mon, 9/28/09, Valarie <val@...> wrote: From: Valarie <val@...>Subject: RE: Removal of adrenal glandhyperaldosteronism Date: Monday, September 28, 2009, 3:10 PM Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. Please tell us your test values, pre spiro for: aldosterone renin potassium Val From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 This is a good link http://hyperaldosteronism.blogspot.com/ will give you some answers. > > > From: Valarie <val@...> > Subject: RE: Removal of adrenal gland > hyperaldosteronism > Date: Monday, September 28, 2009, 3:10 PM > > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > Please tell us your test values, pre spiro for: > aldosterone > renin > potassium > > > Val > > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and " brain fog " ,edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Hi, a ! Thanks for responding. If an adrenal is hyperplasiac, I thought it would not produce adequate levels of aldosterone ? I am not on the DASH diet, but I do follow low sodium and have for yrs. My renin is always in low range .BP range never consistant, can be 140/118 to 110/70. I have appt with new Endo on Oct. 21.Spiro is an adroantagonist so the levels should be lower on it as it blocks the absorbtion of the hormone, so I would think my aldosterone levels would drop off on Spiro and not raise ??? On Mon, 9/28/09, a Hall <shahall@...> wrote: From: a Hall <shahall@...>Subject: Removal of adrenal glandhyperaldosteronism Date: Monday, September 28, 2009, 4:05 PM Hi Lori, Welcome here. If you don't have copies of all your lab work you should get them. You need to list results of all blood work, including normal levels given. What is your renin, it should always be checked with aldosterone. What is your BP running now? Are you DASHing? As Val stated, you need to have AVS before surgery is even considered. There are documented cases where an adrenal with an adenoma was removed when it was actually the other hyperplastic adrenal gland that was oversecreting. And that was only discovered after surgery. The spiro will not decrease aldosterone to a normal level, it only blocks its absorption in the distal tubule. a From: Valarie <val@...>Subject: RE: [hyperaldosteronism ] Removal of adrenal glandhyperaldosteronismDate: Monday, September 28, 2009, 3:10 PM Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. Please tell us your test values, pre spiro for: aldosterone renin potassium Val From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Thank you Francis Bill ! From: Francis Bill <georgewbill@...>Subject: Re: Removal of adrenal glandhyperaldosteronism Date: Monday, September 28, 2009, 3:56 PM This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > > > From: Valarie <val@...>> Subject: RE: [hyperaldosteronism ] Removal of adrenal gland> hyperaldosteronism> Date: Monday, September 28, 2009, 3:10 PM> > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Hello Lori Please remember that Dr Grim's the expert here but my understanding is that spironolactione (and eplerenone) blocks the mineralocorticoid receptors all over the body normally filled and activated by aldosteronism by competing directly with the aldosterone. I think many people experience an increase in serum aldosterone levels whilst on mineralocorticoid receptor blockers (spiro and epleronone) but the hope is that the blockade (and low sodium diet) is protective in terms of current blood pressure and future deleterious aldosterone effects such as fibrosis within the vasculature and myocardium, meaning the absolute levels become less important. I hope this helps in the interim before Dr Grim comments. > > > From: Valarie <val@...> > Subject: RE: [hyperaldosteronism ] Removal of adrenal gland > hyperaldosteronism > Date: Monday, September 28, 2009, 3:10 PM > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > Please tell us your test values, pre spiro for: > > aldosterone > renin > potassium > > > Val > > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and " brain fog " ,edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 small typo sorry. In the first paragraph, please read aldosterone not aldosteronism. AS > > > > > > From: Valarie <val@> > > Subject: RE: [hyperaldosteronism ] Removal of adrenal gland > > hyperaldosteronism > > Date: Monday, September 28, 2009, 3:10 PM > > > > > > > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > > > Please tell us your test values, pre spiro for: > > > > aldosterone > > renin > > potassium > > > > > > Val > > > > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and " brain fog " ,edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Lori, There are two causes of Conn's Syndrome or Primary Aldosteronism; functional adrenal adenomas and/or adrenal hyperplasia. On a recent survey done by 36 of our members who have been given a diagnosis of PA by a physician, 18 said they have adrenal hyperplasia and 18 have unilateral or bilateral adenomas. It is my understanding that aldosterone acts in the kidneys by causing the retention of NA and and secretion of K. Spiro blocks the aldosterone receptors there, it does not make the amount of secreted aldosterone circulating in your bloodstream normal. The doctor that diagnosed me told me not to bother having my aldosterone checked unless something changed with me, that it would always be high. I'm sure Dr. Grim will be responding to you soon and will have much to add to our posts. a From: Valarie <val@...>Subject: RE: [hyperaldosteronism ] Removal of adrenal glandhyperaldosteronismDate: Monday, September 28, 2009, 3:10 PM Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. Please tell us your test values, pre spiro for: aldosterone renin potassium Val From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Spironolactone blocks the effects of also and in many cases Aldo foes up as renin goes up Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Sep 28, 2009, at 3:28 PM, <amsc05@...> wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 The point is, that without AVS, you really have no idea of which adrenal is overproducing. Sometimes all adenomas do is sit there and look dumb. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lori Thank you Francis Bill ! --- On Mon, 9/28/09, Francis Bill <georgewbill@...> wrote: From: Francis Bill <georgewbill@...> This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...> > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > Please tell us your test values, pre spiro for: > aldosterone > renin > potassium > > > Val > > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 U seem to be confusing hypo (lower)and hyper.(hi)CE grim MD Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Sep 28, 2009, at 3:28 PM, <amsc05@...> wrote: small typo sorry. In the first paragraph, please read aldosterone not aldosteronism. AS > > > > > > From: Valarie <val@> > > Subject: RE: [hyperaldosteronism ] Removal of adrenal gland > > hyperaldosteronism > > Date: Monday, September 28, 2009, 3:10 PM > > > > > > > > > > > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > > > Please tell us your test values, pre spiro for: > > > > aldosterone > > renin > > potassium > > > > > > Val > > > > From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Lori > > > > > > > > > > > > > > > > > > Hello, all ! I have a 3 cm x3 cm tumor on right adrenal. My aldosterone level at last check was 33 on 50 mg Spironolactone. It has been increased to 100 mg plus 60 meq potassium daily. I feel absolutely no difference in my symptoms. This is month number 4 on increased dose. I have extreme fatigue and "brain fog",edema, BP still elevated.I am literally so tired that I can barely put one foot in front of the other. I am seeing an endo who is supposed to consult with a surgeon about removal of tumor and gland.This has given me some hope that this will get better. Has anyone else here had an adrenalectomy ? If so, what it open or laparoscopic ? How soon before you noticed a difference in your symptoms ? How soon were you able to return to work ? Any input regarding this is very much appreciated ! Thanks in advance ! Lori > > > > > > > Messages in this topic (9) Reply (via web post) | Start a new topic MARKETPLACE Mom Power: Discover the community of moms doing more for their families, for the world and for each other Recent Activity 1 New Links Visit Your Group New business? Get new customers. List your web site in Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 What u want is the best guarantee that taking out the bump will make all well. AVS IS THE BEST WAY TO DUE THIS. Please send Renin and Aldo ##Any FH of Htn or low K?assume ur drs have already asked about licorice?Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Sep 28, 2009, at 9:46 PM, Valarie <val@...> wrote: The point is, that without AVS, you really have no idea of which adrenal is overproducing. Sometimes all adenomas do is sit there and look dumb. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lori Thank you Francis Bill ! --- On Mon, 9/28/09, Francis Bill <georgewbill > wrote: From: Francis Bill <georgewbill > This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...> > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > Please tell us your test values, pre spiro for: > aldosterone > renin > potassium > > > Val > > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 I had an AVS, which was inconclusive and will be repeated - although the Aldo on the right adrenal was high. Regardless of whether the left adrenal produces aldosterone, should the 2 cm tumor on the right be watched lest it become something more sinister with time? Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com From: Francis Bill <georgewbill >This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...>> > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 No FMH of HTN or hypokalemia. No, I do not eat black licorice. Have grandfather that died from adrenal carcinoma that was initially dxd as benign adrenal tumor which concerns me somewhat . AVS scheduled for 10/21. I am starting to suspect Cushings based on the adenoma, the severe fatigue,weight gain, HTN,hypokalemia,"moon" face,edema,etc. I guess my best bet is just see new endo in a few wks .Thnx anyway,Lori From: Francis Bill <georgewbill >This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...>> > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 Hi, !Well, I am having the AVS repeated on 10/21 due to inconclusive results as well. Best my doctor could tell, my hyperaldosterone was from the adrenal w tumor on it. It is 3.4 cm x 3.9 cm from US.This has been a very frustrating ordeal and I am starting to wonder if it is truly Conn's or not.I want to know what other's symptoms have been. I am having trouble maneuvering thru this forum. Lori From: Francis Bill <georgewbill >This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...>> > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 Lori, where are you having the AVS, i.e. what hospital and where? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lori Sent: Tuesday, September 29, 2009 2:07 PM hyperaldosteronism Subject: Re: Re: Removal of adrenal gland No FMH of HTN or hypokalemia. No, I do not eat black licorice. Have grandfather that died from adrenal carcinoma that was initially dxd as benign adrenal tumor which concerns me somewhat . AVS scheduled for 10/21. I am starting to suspect Cushings based on the adenoma, the severe fatigue,weight gain, HTN,hypokalemia, " moon " face,edema,etc. I guess my best bet is just see new endo in a few wks .Thnx anyway,Lori From: Francis Bill <georgewbill > This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...> > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > Please tell us your test values, pre spiro for: > aldosterone > renin > potassium > > > Val > > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 You can check these sites. http://www.inspire.com/groups/rare-disease/discussion/conns-syndrome-hyperaldost\ eronism/ http://www.kidneyatlas.org/book3/adk3-04.QXD.pdf#search=%22Glucocorticoid%20Reme\ dial%20Aldosteronism%22 > > > From: Valarie <val@> > > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little. > > > > Please tell us your test values, pre spiro for: > > aldosterone > > renin > > potassium > > > > > > Val > > > > > > > > > > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 St. Francis in Tulsa. Why do you ask ? Are you familiar w/ them ? From: Francis Bill <georgewbill >This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...>> > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 Thanks ,Francis Bill That is awesome ! I really appreciate it. Very useful sites ! Lori From: Francis Bill <georgewbill@...>Subject: Re: Removal of adrenal glandhyperaldosteronism Date: Tuesday, September 29, 2009, 5:24 PM You can check these sites. http://www.inspire. com/groups/ rare-disease/ discussion/ conns-syndrome- hyperaldosteroni sm/ http://www.kidneyat las.org/book3/ adk3-04.QXD. pdf#search= %22Glucocorticoi d%20Remedial% 20Aldosteronism% 22 > > > From: Valarie <val@>> > > > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > > > Please tell us your test values, pre spiro for:> > aldosterone> > renin> > potassium> > > > > > Val> > > > > > >> > > > .> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 Val- That's pending my insurance company's approval on the AVS being done at all.They have given me a really hard time and haven't paid anything relative to this. From: Francis Bill <georgewbill >This is a good link http://hyperaldoste ronism.blogspot. com/ will give you some answers. > From: Valarie <val@...>> > Lori, there is no reason to have surgery if the adenoma is not over-producing aldosterone. You need to have adrenal vein sampling before you let any knives near you. Your 100 mg of spironolactone may still be much too little.> > Please tell us your test values, pre spiro for:> aldosterone> renin> potassium> > > Val> > > .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2009 Report Share Posted September 29, 2009 No, I'm not familiar with that place. Dr. Grim might be. Have they done many AVS procedures? What is their success rate? I can't remember but have you posted your aldosterone and renin numbers? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lori St. Francis in Tulsa. Why do you ask ? Are you familiar w/ them ? From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Lori, Barring complications, the AVS is an outpatient procedure so your main concern should be the Interventional Radiologist who will be performing it. Ask him how many AVS he has performed. Then ask him how many AVS he has SUCCESSFULLY done, meaning canulated and gotten a good sample from both left and right adrenal veins. It's not a procedure that just any Radiologist is capable of or should be performing. If you're not sure that your insurance is going to cover it I'd ask in advance how much the charge will be since they seem to vary wildly. If I remember correctly one person in this group got a bill for $36,000, or some such ridiculous amount. Dr. Grim will have to address this further but I don't believe it's possible to have Conn's if Spiro or Inspra does nothing for you, MC's are the only thing that works for us. Or like he said, maybe you just need a higher dose. a From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 NIH is doing my AVS for free. Have your endo send them your results and films and maybe they will take you on. NIH invented the procedure and the person who did mine was trained by the originator. Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 -Is that in land ? The plane ticket would probably be alot cheaper than the procedure ! That would be great. I will sure do that. I really appreciate the suggestion. From: Valarie <val@...> Lori, where are you having the AVS, i.e. what hospital and where? Val .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Lori, I understand. My experience at U of Colorado was awful. The endo had erroneous information about PA and wrote it in my record. She concluded, because an adenoma could not be seen on a 5 mm CT, that PA was not possible. Once she ruled out Cushing's, she lost interest. I'm sure there are brilliant individuals at those institutions but, unfortunately, we haven't seen them. It still depends on the experience of radiologist. That's why his/her experience should be ascertained. AVS is not a benign procedure. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lori Do you mean OU Medical Center ? I hate that place ! I was a nurse in Trauma there. It is very difficult to get in due to long wait, it is a teaching hospital, they are notorious for their crappy tx of patients . My MD knows the endo in Tulsa really well and St. Francis in Tulsa is a sister hospital to the one I work for now. We do not have endo any longer at my hospital. Plus no OKC docs are in network w/ my insurance. I am praying they will pay for some of this ,_._,___ Quote Link to comment Share on other sites More sharing options...
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