Re: Post Adrenalectomy Medications

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Good lets start as early as we can in your Hx and all the details. Maybe just between you and me till we get it in order. CE Grim MDOn Apr 22, 2012, at 1:08 AM, Bingham wrote: That's funny you write it like that as I was born in 1967 "the Summer of Love"....and Jimi Hendrix! I agree there that I had ALL the signs. I mean I was young, I was healthy, VERY athletic, NO risk factors like smoking, drinking, etc, and then about 2002-2003 started noticing HTN at checkups and then by the end of 2003 the signs of low K were no doubt happening (I have journals from then that state what I mean) and it got higher and higher and K was replaced maybe 20 times between 2004 and 2010! And PA was never ever checked even in the hospital stays. So we can sure do a "missing the missing link" article and I have been DASHing (and not even fanatically as I have said yet it is making such a difference). From: Clarence Grim <lowerbp2@...>Subject: Re: Post Adrenalectomy Medicationshyperaldosteronism Cc: "Clarence Grim" <lowerbp2@...>Date: Sunday, April 22, 2012, 12:18 AM But I argue that you are a classic case of missed PA for a long time. No! Since 1967, when Conn's group eliminated the need for patient to have low K to Dx primary aldo, no patient with HTN (esp if difficult to control) and low K should be missed by not investigating this classic combination of findings. So as soon as HTN and low K appeared you should have been tested. I assume this started after 1967? The rapid response to spiro if a diagnostic test that you are making too much aldo and eating too much salt. Most PAs do NOT have adrenal abn on CT or MRI until the lesion(s) get big enough to detect with today's technology. I cannot find out what a MGBA scan is???? MIBG maybe? That is to test for pheo not PA. CE Grim MD but I do not have the classic labs to back it up. Again the classic labs are HTN and low K! I also have a new endo now that I have not met yet since the ol d one is no longer taking our insurance. But after the years of serious uncontrolled HTN on as many as 5 meds at once, multiple hospitalizations, and very well documented cases of hypokalemia for years, the spiro finally did the trick and did it dramatically. So as for me being an example in a journal I feel like I do not have labs backing up my diagnosis because while they eventually did them, it was only AFTER we started the spiro, and they kept me on the spiro (and I may have still been on an ACEI too) I believe, and nothing was done right. I had at that time the hyperthyroid complicating things also - (though I had NO changes in any thyroid parameter all through 2011 - but tsh is creeping low now 0.60 and some s/s seem to firing up.) My CT said nothing but a 1cm cyst on Kidney and adrenals clear - if I trust it. MGBA scan was clear also. SO I am not a textbook case. What we do know about my case is: 1. Spiro worked at once over 10-20 meds I had tried or been on over 5-6 years - even over 5 meds I was on at the time I started it. 2. Potassium, I still take, worked wonders physically and emotionally on a personal level and seemed to be the root of all my evils at times (I take mag and vit C and iron also for the unk reason anemia) CE Grim MD On Apr 21, 2012, at 12:32 PM, Bingham wrote: Remember though, and I say this alot, is that we came to conclude (the cardiologist initially, and then the endocrinologist) that I had Conn's based primarily on my history and my reaction immediately to the spiro, but I do not have the classic labs to back it up. Again the classic labs are HTN and low K! I also have a new endo now that I have not met yet since the old one is no longer taking our insurance. But after the years of serious uncontrolled HTN on as many as 5 meds at once, multiple hospitalizations, and very well documented cases of hypokalemia for years, the spiro finally did the trick and did it dramatically. So as for me being an example in a journal I feel like I do not have labs backing up my diagnosis because while they eventually did them, it was only AFTER we started the spiro, and they kept me on the spiro (and I may have still been on an ACEI too) I believe, and nothing was done right. I had at that time the hyperthyroid complicating things also - (though I had NO changes in any thyroid parameter all through 2011 - but tsh is creeping low now 0.60 and some s/s seem to firing up.) My CT said nothing but a 1cm cyst on Kidney and adrenals clear - if I trust it. MGBA scan was clear also. SO I am not a textbook case. What we do know about my case is: 1. Spiro worked at once over 10-20 meds I had tried or been on over 5-6 years - even over 5 meds I was on at the time I started it. 2. Potassium, I still take, worked wonders physically and emotionally on a personal level and seemed to be the root of all my evils at times (I take mag and vit C and iron also for the unk reason anemia) 3. I do DASH well - BUT nothing fanatical, and the weak link is I am not getting the K from diet like I could. I exercise as much as I can and make even the smallest effort every night to do SOMETHING. I have a graduate certificate in sports psychology that I did just for self-interest, but I also notice and believe in all of us, exercise is so helpful, but not the amount - sometimes its just the tiniest focused effort and our bodies seem to pick up the slack and if we can just do "something" it will help us ten-fold. I can do, broken up in sections, 50 push ups, 5minutes of jumping jacks and a little weight lifting and I feel incredible. 4. In 2008 I had significant LVH according to Dr Brogan of the Lubbock Heart Institute and spent time in the hospital in Lubbock as his guest. All heart studies done and all was well except LVH and I still was sent home severely HTN and low K. 5. Last echo, late 2010 the doc said no LVH and everything was perfect - though this cardiologist had a mental breakdown my very next visit (long story) and I believe he's since had some "special" care for mental health according to his receptionsist So I am not a picture perfect case. There has to be someone where good labs were done, adenomas found, and so on. I have none of that to date. -- On Sat, 4/21/12, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Post Adrenalectomy Medicationshyperaldosteronism Cc: "Clarence Grim" <lowerbp2@...>Date: Saturday, April 21, 2012, 11:39 AM I think you have the best documented de-evolution of PA we have here with meds and finally DASHing. I recommend we put this together for a care report for some medical journals esp those that go to PAs and NPs. But know you are busy. you can respond to me at my email. lowerbp2@... CE Grim MD On Apr 18, 2012, at 12:54 AM, Bingham wrote: Kind of an odd question. If it's Post-adrenalectomy why would you need either one (I know there's some catch-up time after surgery)? The whole idea behind yanking your adrenal gland is to stop the hyperaldosteronism (or whatever the issue was). If you have the same high blood pressure after then it wasn't pa and you just lost an adrenal gland...or it still is and they got the wrong one. Hopefully pulling the adrenal solves the problem and you feel better, and you can exercise better and get healthier. And I am sure you are/were already eating as best you can to try and solve the issue on your own before surgery. And Dr G is mainly referring to those medication classes in regards to PA because they are mostly ineffective in that case. Many of us (most maybe?) also have shown evidence of LVH (enlarged left side heart) because of our hypertension being untreated/misdaignosed/ignored for so long .....pick the reason.....but that is recoverable once we control the HTN - usually. Post MI, the BB and ACEI (like lisinopril) show good benefit in remodeling the heart after a heart attack, but spiro has shown, with very good studies, to reduce LVH in those with PA (and some without) when they use it. But here's my take on it.........I so far am a good example as I haven't taken my spiro - except for a couple days last week when I was sick and my BP spiked - for over a month because it was doing great on DASHing and exercise. I am by no means a fanatic for either one and not perfect in either one as I am way too aloof to ever be obsessed over anything, but I am putting in effort and it's really paid off (I am only 44 years old with 7 kiddos and a crazy, but beautiful, red-headed wife ). My story in a nutshell is for many years (2002/2003 was maybe the first inkling of something wrong) and hospital stays, maybe a hundred office/er all total visits over those years and always misdiagnosed/ignored/missed the PA. BP back then was easily 160/120 plus daily for years even on 5 meds sometimes. After two doses of spiro on a cardiologists hunch (I was 184/140 in his office and HE took it over and over and I was on 5 meds that day) I had the very first normal BP in over 5 years (that was in 11/2010). The misdiagnoses and especially the chronic low K caused ALOT of problems that built up over the years, and has nearly ruined me professionally, did ruin us financially (long long story), but I am healthy. I never dashed until I found this site and did as Dr G and everyone suggested (I should have known better but I didn't) and went from 50mg to 25mg to 12.5 mg to nothing. I do still take my K as that part of my diet is the weakest, but I do feel a difference between natural K and the pills. Now I had tests done, but never was one ever done right (they never took me off any meds), and I never had any AVS. My CT did not show anything on my adrenals (can't say I fully trust it, but it is what it is for now - if I come up with the cash I will have Dr G review all my stuff). Endocrine did not want to take me off of the spiro after it worked so well, and said he wouldn't consider me a surgery candidate anyway with the unstable pressure off of it (and I had thyroid trouble too), and so I just worked my butt off. I have some other health issues, but dealing with those as we go. Oh yeah...I tend to ramble a bit, so I aologize, but I meant to say also that at my last echo a year ago at least, the LVH I had was gone. So hopefully you have taken control and DASH and exercise and get off those meds if you can .....and fix that ticker too. You can do it! I've seen Dr. Grim post several times that BB's and CCB's are not the best BP meds for PA. Does this apply to post adrenalectomy as well and is spironolactone still an option? In looking through the files I was unable to locate the appropriate file or study containing this info.I'm returning to my cardiologist on Thursday and was looking for information to share regarding the best medications for my condition keeping in mind that I also have other heart issues. (CABG & LBBB) My systolic BP has been creeping up steadily over the last three weeks and my dystolic has been creeping down. I have also begun to retain fluid which may account for the BP changes. Lab test 2.5 weeks ago showed normal K (mid-range), low NA and low magnesium.Brief Summary Average BP & HR 3 weeks ago118/78 HR 75Average BP & HR last 7 days 130/64 HR 82Lab results (don't have numbers)K - normal in Mid-rangeNa - Below normal rangeMagnesium - Below normal rangeAldosterone - within Normal rangeRetaining fluid past 7 days - Swollen feet and legs up 6 lbsMEDICATIONS2.5 Bystolic.25 Digoxin40 mg Lasix