Guest guest Posted June 8, 2012 Report Share Posted June 8, 2012 Hi everyone! I just got my test results back from my adrenal vein sampling. The excess aldosterone is coming from the left adrenal (35 x higher), which is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any tips on recovery? I have a toddler and a baby and was just wondering what I should expect. Also I am worried that if I get one adrenal out at such a young age (31) if something could go wrong with the other adrenal down the road. I don't want to have to be stuck on steroids or anything. Any advice is greatly appreciated. So glad to have this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2012 Report Share Posted June 8, 2012 My adrenalectomy was last October. I don't have kids, but I can imagine that if I did, the biggest problem would have been lifting. I was advised to not lift anything over 10 pounds for 4 weeks... of course exactly 4 weeks to the date I was feeling fine and lifted a heavy box, and ended up ripping the internal stitches or something which caused almost as much pain as the surgery itself! Aside from that, the recovery was really speedy - much easier than I expected. I took two weeks off from work and was back to all of my normal activities - yoga, hiking, etc - shortly thereafter. -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > Hi everyone! I just got my test results back from my adrenal vein sampling. The excess aldosterone is coming from the left adrenal (35 x higher), which is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any tips on recovery? I have a toddler and a baby and was just wondering what I should expect. Also I am worried that if I get one adrenal out at such a young age (31) if something could go wrong with the other adrenal down the road. I don't want to have to be stuck on steroids or anything. Any advice is greatly appreciated. So glad to have this group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2012 Report Share Posted June 8, 2012 About 90% depending on how u define it. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 8, 2012, at 14:32, Sara <sara212729@...> wrote: Does anyone know the chances of getting another tumor on the other adrenal gland? That would be terrible. > > You will want to have some help with the children for a few days. If your > other adrenal develops an adenoma, the treatment is a mineralocorticoid > blocker (spiro or Inspra), not a steroid. > > > > Val > > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > The excess aldosterone is coming from the left adrenal (35 x higher), which > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > tips on recovery? I have a toddler and a baby and was just wondering what I > should expect. Also I am worried that if I get one adrenal out at such a > young age (31) if something could go wrong with the other adrenal down the > road. I don't want to have to be stuck on steroids or anything. Any advice > is greatly appreciated. So glad to have this group. > > . > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Dr. Grim, were you having a teenage moment or was this after a Friday Night Party? Obviously she was asking about the odds of a functioning tumor in the remaining adrenal. We all know the odds of developing a nonfunctioning tumor increases as we age, hence AVS recommended after 40. I would have to guess the odds of developing a functioning tumor is extremely low. I base this on two items: the followup for either meds or surgery would be more aggressive and if you were treating with MCBs and developed a functioning tumor in the other adrenal you would need to increase your dose. I also did a few Pubmed searches and came up empty, did anyone else have any luck? (I actually found one old case study which I didn't feel worth reporting.) > > > > > > You will want to have some help with the children for a few days. If your > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > Val > > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > should expect. Also I am worried that if I get one adrenal out at such a > > > young age (31) if something could go wrong with the other adrenal down the > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > is greatly appreciated. So glad to have this group. > > > > > > . > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Dr. Grim did I read that right that there is a 90% chance that I will get another tumor on my other adrenal gland? I thought it was more rare. > > > > > > You will want to have some help with the children for a few days. If your > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > Val > > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > should expect. Also I am worried that if I get one adrenal out at such a > > > young age (31) if something could go wrong with the other adrenal down the > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > is greatly appreciated. So glad to have this group. > > > > > > . > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Sara, don't stress on this until he documents his statement. > > > > > > > > You will want to have some help with the children for a few days. If your > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > young age (31) if something could go wrong with the other adrenal down the > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > is greatly appreciated. So glad to have this group. > > > > > > > > . > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 I was wondering about that 90% too! Before agreeing to my adrenalectomy, I asked my surgeon what she thought the odds were that I'd develop a functioning adenoma in my remaining adrenal. She told me that based on my scans, which showed a very enlarged and lumpy left adrenal vs. a very normal and unremarkable-looking right one, her estimate would be " less than 5%. " Of course nobody can say with certainty, but even if she had said " 50% " I would have proceeded with the surgery. I couldn't worry about what *might* happen - I needed my life back *now*! -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > > > > > > > You will want to have some help with the children for a few days. If your > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > young age (31) if something could go wrong with the other adrenal down the > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > is greatly appreciated. So glad to have this group. > > > > > > > > . > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 As my bias is that most PA is due to hyperplasia then there are always small bumps on both sides. So if one comes out and u ate not cured ie no BP meds needed then there is still a little one(s) on the other side. Anyway in an individual time and and BP will tell. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 9, 2012, at 11:23, <jclark24p@...> wrote: Dr. Grim, were you having a teenage moment or was this after a Friday Night Party? Obviously she was asking about the odds of a functioning tumor in the remaining adrenal. We all know the odds of developing a nonfunctioning tumor increases as we age, hence AVS recommended after 40. I would have to guess the odds of developing a functioning tumor is extremely low. I base this on two items: the followup for either meds or surgery would be more aggressive and if you were treating with MCBs and developed a functioning tumor in the other adrenal you would need to increase your dose. I also did a few Pubmed searches and came up empty, did anyone else have any luck? (I actually found one old case study which I didn't feel worth reporting.) > > > > > > You will want to have some help with the children for a few days. If your > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > Val > > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > should expect. Also I am worried that if I get one adrenal out at such a > > > young age (31) if something could go wrong with the other adrenal down the > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > is greatly appreciated. So glad to have this group. > > > > > > . > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 The rare of " cure" is about 36% oner the long haul Say 5 years. So if not cured then there must be bumps on the other side. So the 1 year rate of a bump on the other side increasing BP is 64%. As time goes by cure rate decreases. Anyway it depends on the pathology of the removed gland looked at carefully. Which is not usually done as most are blinded by the big bump that is the sought after gold at the end of the Aldo rainbow. Still most with good AVS studies will feel a lot better than they have for years. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 9, 2012, at 11:55, Sara <sara212729@...> wrote: Dr. Grim did I read that right that there is a 90% chance that I will get another tumor on my other adrenal gland? I thought it was more rare. > > > > > > You will want to have some help with the children for a few days. If your > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > Val > > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > should expect. Also I am worried that if I get one adrenal out at such a > > > young age (31) if something could go wrong with the other adrenal down the > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > is greatly appreciated. So glad to have this group. > > > > > > . > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Again the most common form of PA is due to bilateral disease. So my prediction is that with say 20 year follow up most will not be cured. But no one has such a database that they have published on. We are now 10 years old here and if everybody is entering their data we would have at least some 10 year data. But most seem to leave after surgery and we don't have that long term data. Wish we did. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 9, 2012, at 12:28, <jclark24p@...> wrote: Sara, don't stress on this until he documents his statement. > > > > > > > > You will want to have some help with the children for a few days. If your > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > young age (31) if something could go wrong with the other adrenal down the > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > is greatly appreciated. So glad to have this group. > > > > > > > > . > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Did the path report show a bumpy gland or only one bump?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 9, 2012, at 12:36, msmith_1928 <janeray1940@...> wrote: I was wondering about that 90% too! Before agreeing to my adrenalectomy, I asked my surgeon what she thought the odds were that I'd develop a functioning adenoma in my remaining adrenal. She told me that based on my scans, which showed a very enlarged and lumpy left adrenal vs. a very normal and unremarkable-looking right one, her estimate would be "less than 5%." Of course nobody can say with certainty, but even if she had said "50%" I would have proceeded with the surgery. I couldn't worry about what *might* happen - I needed my life back *now*! -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > > > > > > > You will want to have some help with the children for a few days. If your > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > young age (31) if something could go wrong with the other adrenal down the > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > is greatly appreciated. So glad to have this group. > > > > > > > > . > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 Just one bump. The enlargement and lumpy shape turned out to be because the gland was surrounded by fat deposits - something my medical team didn't comment on other than to say that they hadn't ever seen such a thing in a patient who was not overweight. > > > > > > > > > > > > You will want to have some help with the children for a few days. If your > > > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > > > young age (31) if something could go wrong with the other adrenal down the > > > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > > > . > > > > > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 I am certainly aware of your biases as you are probably aware of mine! I believe in thorough and proper testing and to never assume until all tests have been done. I never believed in " trial and error " , probably because it confuses computers! I also believe there can be co-existing causes for HTN so if an ADx does not cure it after a period of time (most professionals give it up to a year) testing should be repeated. I think my experience with spironolactone taking 10months to get all SX of PA under control after controlling BP is an example. (I'm a month into testing eplerenone with the same experience, BP running 130/70 but flank & testis pain continues!) I'm assuming that if kidneys, veins and arteries or heart have been damaged the HTN will continue. It would be interesting if anyone has tried to treat with ACE, ARB, etc. class meds. They should work if renin has returned, right? I'm not exactly sure how MCBs work but if you were treating with meds and a new adenoma became functionl wouldn't you need to increase the dosage? Also, do you know of anybody who has validted your hypothesis? (I would seem someone would have done it at autopsy and if indeed it was true they would be less likely to recommend ADx. In fact the <40 difference would make even less sense.) > > > > > > > > > > You will want to have some help with the children for a few days. If your > > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > > young age (31) if something could go wrong with the other adrenal down the > > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > . > > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 You're assuming the dose would need to be increased based on a new adenoma producing MORE aldsoterone than was there previously, I guess? But I suspect it is not a pure linear relationship meaning we have to keep upping the spiro based on the level of aldosterone. But looking at numbers people have put up, and their reports of good luck on spiro or epe, this does not seem to be the case. If that is the only cause of HTN, and if one keeps sodium down, it appears aldosterone doesn't reach that threshhold either way and may be fairly inert in relationship to our pressure. In the normal person, aldosterone and renin (and the whole complement of hormones, steriods, proteins etc) are released in response to an issue we have, usually low volume of some sort - blood loss, dehydration, etc. and that triggers it. - it is not just being released ad lib like in you and I due to the adrenal problems. In your case, you have documented on the list a myriad of problems you have, many which contribute to, or cause HTN, other than just PA. So an MCB may take longer to work in you because PA is not your only problem, or the MCB DIDN'T ever work and it was something else. And did we account for ALL other measures taken in the 10 months that may have contributed to lowering your pressure? Like OSA treatment or improved treatment? PTSD treatment or a change in meds that can cause HTN? Blood sugar control? and anything else that may have done it instead of the spiro? My case is different. I do not have mutliple diagnoses or a colorful health history. My life is as full as the rest of us with tragedy and hard times and I have stress, and have seen things the average person will never see, even in my teens (remember I worked out in South Central Los Angeles as a medic), but I am so blessed I am not saddled with depression or mental health issues, thank heavens. I have had some run-ins with hyperthyroidism - don't know why, but it is okay right now. Most other issues I had were related to PA/low K. Spiro brought my pressure down in 2 doses, and it is well documented that I had very high uncontrolled HTN for at least 7-8 years prior to that, on many many meds and treatments, and no effect. I say it again for those reading for the first time, that I was 180/140 the very day (night) I started spiro, AND I was on 5 meds at that time with it that high, and in 2 doses of spiro it was 120/80. So I have no doubt spiro did it for me. I was 43 yo at the time (2010). One more day of 180/140 could have been my CVA day and my wifes widowmaker anniversary. So trial and error, in my case worked. Well trial worked, and wasn't the error side to find out, and that may have saved my life. I am glad I do not have the opposite to report on. BTW they only checked aldo and renin after I was on spiro. They have never done a single test right. But I am not going off of spiro to find out. I went too long with HTN to begin with and who knows what hidden damage has not reared it's head yet. So for me, I am not hung up on testing. I know what it is, not to perfection, but the clues are there at least in relation to HTN and hypokalemia. I keep sodium low and I do not even have to take the spiro - I did last week a couople of times as I got a bad sinus infection and it seemed to keep my pressure up - I am eating less so I don't know why. But last few days I have been okay. Not a perfect science, but I know what does work. If it changes we explore. From: <jclark24p@...>Subject: Re: Adrenalectomyhyperaldosteronism Date: Saturday, June 9, 2012, 10:50 PM I am certainly aware of your biases as you are probably aware of mine! I believe in thorough and proper testing and to never assume until all tests have been done. I never believed in "trial and error", probably because it confuses computers! I also believe there can be co-existing causes for HTN so if an ADx does not cure it after a period of time (most professionals give it up to a year) testing should be repeated. I think my experience with spironolactone taking 10months to get all SX of PA under control after controlling BP is an example. (I'm a month into testing eplerenone with the same experience, BP running 130/70 but flank & testis pain continues!)I'm assuming that if kidneys, veins and arteries or heart have been damaged the HTN will continue. It would be interesting if anyone has tried to treat with ACE, ARB, etc. class meds. They should work if renin has returned, right?I'm not exactly sure how MCBs work but if you were treating with meds and a new adenoma became functionl wouldn't you need to increase the dosage? Also, do you know of anybody who has validted your hypothesis? (I would seem someone would have done it at autopsy and if indeed it was true they would be less likely to recommend ADx. In fact the <40 difference would make even less sense.)> > > > >> > > > > You will want to have some help with the children for a few days. If your> > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid> > > > > blocker (spiro or Inspra), not a steroid.> > > > > > > > > > > > > > > > > > > > Val> > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara> > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling.> > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which> > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any> > > > > tips on recovery? I have a toddler and a baby and was just wondering what I> > > > > should expect. Also I am worried that if I get one adrenal out at such a> > > > > young age (31) if something could go wrong with the other adrenal down the> > > > > road. I don't want to have to be stuck on steroids or anything. Any advice> > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > .> > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId> > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950>> > > > >> > > > > > > >> > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 , which came first the chicken or the egg? If you look at my problems which are not attributed to or exaserbated by PA? I was DXed w/OSA in 2002 (3 years before the first ct-scan that shows the adenoma but it could have very well have been there). It worsened and they had to raise bi-pap pressures to 19/13. That sleep study determined I needed oxygen so LVH had developed and could have increased the problem. T2DM was DXed and controlled w/1000mg of metformin. When Spiro took full effect (4/23/2011) BS shot up and we had to double metformin. (I have daily readings to back this up) Flank pain disappeared on that day also. PTSD depression meds stayed the same. I lost 20 lbs. Everything was going well and controlled until I developed bumps in my boobs. That's when I decided I didn't want to fix my HTN and die of breast cancer and stopped the spironolactone. That started the regression part of the test. BP was up after a week or so, flank pain back w/i month, I was having low oxygen readings by April and still notice excess congestion and I gained 15+ lbs. I have been on eplerenone for month and BP is running around 130/70, HR in the high 60's, BS ave. 128, weight down 10 lbs. Pain is still present and feeling upper resp. conjestion but I expect they will resolve. With that background I think most if not all can be attributed to PA . I still think if you spill one bucket of water you can clean it up with one sponge but if you spill two buckets you may need two sponges! (Of course if you are over dosing on the MCB, like many appear to be IMHO, you wouldn't need to increase it!) Remind me how were you DXed w/PA. It may be that you never really had it since they are using MCBs for a lot more than PA these days. > > > > > >> > > > > > You will want to have some help with the children for a few days. If your> > > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid> > > > > > blocker (spiro or Inspra), not a steroid.> > > > > > > > > > > > > > > > > > > > > > > > Val> > > > > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara> > > > > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling.> > > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which> > > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any> > > > > > tips on recovery? I have a toddler and a baby and was just wondering what I> > > > > > should expect. Also I am worried that if I get one adrenal out at such a> > > > > > young age (31) if something could go wrong with the other adrenal down the> > > > > > road. I don't want to have to be stuck on steroids or anything. Any advice> > > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > > > .> > > > > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId> > > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950>> > > > > >> > > > > > > > > >> > > >> > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 Please send your AVS results so we can review them.We have caught errors in the past. Just a double check.CE Grim MDOn Jun 8, 2012, at 12:22 PM, Valarie wrote: You will want to have some help with the children for a few days. If your other adrenal develops an adenoma, the treatment is a mineralocorticoid blocker (spiro or Inspra), not a steroid. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Sara Hi everyone! I just got my test results back from my adrenal vein sampling. The excess aldosterone is coming from the left adrenal (35 x higher), which is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any tips on recovery? I have a toddler and a baby and was just wondering what I should expect. Also I am worried that if I get one adrenal out at such a young age (31) if something could go wrong with the other adrenal down the road. I don't want to have to be stuck on steroids or anything. Any advice is greatly appreciated. So glad to have this group. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 Can you add this to your data base notes on adrenal pathology?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 9, 2012, at 21:06, msmith_1928 <janeray1940@...> wrote: Just one bump. The enlargement and lumpy shape turned out to be because the gland was surrounded by fat deposits - something my medical team didn't comment on other than to say that they hadn't ever seen such a thing in a patient who was not overweight. > > > > > > > > > > > > You will want to have some help with the children for a few days. If your > > > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > > > young age (31) if something could go wrong with the other adrenal down the > > > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > > > . > > > > > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 At the time I was of the impression that BP, which resolved immeditely, was the marker that Spiro was working. Max dose that my body would accept was 25 mg bid. Above that caused gastric issues, did not qualify for epler because BP was well controlled. You may recall that was enough to cause gynecomastia, did not qualify for epler because gynecomastia was not painful. Was told boobs would go away after stopping spironolactone, have seen no sign of it happening in 6months! Salting was the same for the entire 10 months and actually started paying attention to DASH two months after everything resolved, after oral surgery. > > > > > > > > > > > > > > You will want to have some help with the children for a few days. If your > > > > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > > > > young age (31) if something could go wrong with the other adrenal down the > > > > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > > > > > . > > > > > > > > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 I was getting the gyneco on 50mg, then a little on the 25mg. Seems it stopped when I was on 12.5mg a day, and again, mine was not that dramatic appearance wise, but the pain in and under the nipples was intense. It sure went down as the dose did though. From: <jclark24p@...>Subject: Re: Adrenalectomyhyperaldosteronism Date: Sunday, June 10, 2012, 9:09 PM At the time I was of the impression that BP, which resolved immeditely, was the marker that Spiro was working. Max dose that my body would accept was 25 mg bid. Above that caused gastric issues, did not qualify for epler because BP was well controlled. You may recall that was enough to cause gynecomastia, did not qualify for epler because gynecomastia was not painful. Was told boobs would go away after stopping spironolactone, have seen no sign of it happening in 6months!Salting was the same for the entire 10 months and actually started paying attention to DASH two months after everything resolved, after oral surgery.> > > > > > >> > > > > > > You will want to have some help with the children for a few days. If your> > > > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid> > > > > > > blocker (spiro or Inspra), not a steroid.> > > > > > > > > > > > > > > > > > > > > > > > > > > > Val> > > > > > > > > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara> > > > > > > > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling.> > > > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which> > > > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any> > > > > > > tips on recovery? I have a toddler and a baby and was just wondering what I> > > > > > > should expect. Also I am worried that if I get one adrenal out at such a> > > > > > > young age (31) if something could go wrong with the other adrenal down the> > > > > > > road. I don't want to have to be stuck on steroids or anything. Any advice> > > > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > > > > > .> > > > > > > > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId> > > > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950>> > > > > > >> > > > > > > > > > > >> > > > >> > > > > > > >> > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2012 Report Share Posted June 11, 2012 Here is a 2003 study that shows the prevalence of incidental adenomas at autopsy is 2.3% in 71,206 cases: " Prevalence and natural history of adrenal incidentalomas " Source: http://eje-online.org/content/149/4/273.full.pdf Note that the likelihood increases with age to 6.9% in persons oF 70 and older. > > > > > > You will want to have some help with the children for a few days. If your > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > Val > > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > should expect. Also I am worried that if I get one adrenal out at such a > > > young age (31) if something could go wrong with the other adrenal down the > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > is greatly appreciated. So glad to have this group. > > > > > > . > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2012 Report Share Posted June 11, 2012 Dr Grim, are you saying there is a 90% chance of developing a tumor in the remaining adrenal gland? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2012 Report Share Posted June 11, 2012 Here's an older one: " Autopsy Study of Adrenals in Unselected Normotensive and Hypertensive Patients " Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1930349/?tool=pubmed Of course there appears to be no consideration of people being treated with MCBs so I believe this and my previous post overstate the number. There is also no mention of individuals with no adrenals which is the solution for Cushing's. > > > > > > > > You will want to have some help with the children for a few days. If your > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > young age (31) if something could go wrong with the other adrenal down the > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > is greatly appreciated. So glad to have this group. > > > > > > > > . > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 If I understand correctly this study was autopsies on random individuals though, not people who were necessarily diagnosed with PA previously, right? And "incidental" means the adenoma was asymptomatic? I wish my adenoma was incidental. If only lol. Virginia Wall31 year old femaleDASHingAVS scheduled June 27, 2012 at BJC Hospital St. Louis, MO3 cm adenoma in right adrenalDiagnosed February 2012Low K & High BP since appx. 2007Possible family history of hyperaldosteronismMeds: K Cl 20 meq 2 tabs bidPrenatal vitaminBreastfeeding; 5 month old with G6PDDOn Jun 11, 2012, at 11:34 PM, " " <jclark24p@...> wrote: Here is a 2003 study that shows the prevalence of incidental adenomas at autopsy is 2.3% in 71,206 cases: "Prevalence and natural history of adrenal incidentalomas" Source: http://eje-online.org/content/149/4/273.full.pdf Note that the likelihood increases with age to 6.9% in persons oF 70 and older. > > > > > > You will want to have some help with the children for a few days. If your > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > Val > > > > > > > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > should expect. Also I am worried that if I get one adrenal out at such a > > > young age (31) if something could go wrong with the other adrenal down the > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > is greatly appreciated. So glad to have this group. > > > > > > . > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Current thinking is about 80% of adenomas are non functioning. Maybe this is because 80% of the time they fail to do proper testing. > > > > > > > > > > You will want to have some help with the children for a few days. If your > > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > > young age (31) if something could go wrong with the other adrenal down the > > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > > is greatly appreciated. So glad to have this group. > > > > > > > > > > . > > > > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Note this study states cushing is the most likely disorder that may ensue. > > > > > > > > You will want to have some help with the children for a few days. If your > > > > other adrenal develops an adenoma, the treatment is a mineralocorticoid > > > > blocker (spiro or Inspra), not a steroid. > > > > > > > > > > > > > > > > Val > > > > > > > > > > > > > > > > From: hyperaldosteronism > > > > [mailto:hyperaldosteronism ] On Behalf Of Sara > > > > > > > > > > > > Hi everyone! I just got my test results back from my adrenal vein sampling. > > > > The excess aldosterone is coming from the left adrenal (35 x higher), which > > > > is the one with the 1 cm tumor. I am going to have an adrenalectomy. Any > > > > tips on recovery? I have a toddler and a baby and was just wondering what I > > > > should expect. Also I am worried that if I get one adrenal out at such a > > > > young age (31) if something could go wrong with the other adrenal down the > > > > road. I don't want to have to be stuck on steroids or anything. Any advice > > > > is greatly appreciated. So glad to have this group. > > > > > > > > . > > > > > > > > > > > > <http://geo./serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > > =43906/stime=1339162511/nc1=3848643/nc2=5191951/nc3=5191950> > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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