Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 > Hi everyone; > > I'm a new " Conn-vert " , and I'm glad to find you. It's been lonely > out in the real world with the " norms " . This is my first post ever > so I will try to do my best. I spent several hours yesterday > reading every message on the board, all 1170+ of them. I have > learned a lot from all of you, you bless me. This whole process has > been a learning experience and I have a bull-zillion questions. I > think I will start with my story, as short as I can. > > About 15 years ago, I had a bad sinus infection, and went to the > company dispensary and they gave me an Rx of ?Duadeacin?, I had a > terrible reaction and my BP went sky high, and I guess in a way it > never came down. I have basically had uncontrollable BP ever > since. I have been on dozens of meds 4 and 5 at a time with little > control or success. My Dr. would just increase the dosage and then > change the type, an endless cycle it seemed. > > Three years ago I was in a whiplash auto accident, I was hit from > behind while sitting in traffic (a lady on a cel-phone). I got some > soft tissue damage. Then came the med doctors, physical therapists, > needle point injections, chiropractic care, and massage therapy. I > met a good friend of mine, the emergency room doctor, and told him > about my neck, and BP and GP woes. He got me to a new GP, his GP. > A really great guy, he soon made changes (different meds and adding > K for the first time) and I felt a little better BP wise inspite of > the neck injury. He checked me for Sleep Apnea, yepper, I got it. > I got to feeling a little better and my neck healed a little more. > The BP got controlled a bit better. Sleep must help those things. > Then about a year ago I got some lower back pain that just about > killed me, I literally couldn't get out of bed some mornings, my > boys would even have to dress me by putting my shoes and socks on > me. For 3 months, I could barely walk or stand, I had x-rays and > ultra-sounds that couldn't find anything but normal aging. Pain > meds, acupuncture, chiropractic, massage, nothing was releaving the > pain. Finally I was sent for a MRI, they went a little higher than > the x-rays and found a kidney stone the size of a dime. I had that > blasted, no back pain. BP went down and manageable for the first > time on 4 meds after that. But I still felt lousy and couldn't eat, > next discovery gallstones out last Nov. Still felt lousy. Lousy > equals: > > Headaches pain killers can't touch, migraine type, getting more > frequent, 4-5 days a week; ringing in the ears, especially if I try > pain pills, have only tried OTCs; bright light sensitive; frequent > Insomnia, even on CPAP; almost nightly sweats, waking for dreams > with feeling of doom and soaking wet; muscular weakness/fatique, > extreme tiredness almost always; a lot of mental dullness, > dizziness, and different twinges or waves of feelings in head and > brain at different times; easily depressed/discouraged, no > initiative; and easily out of breath. > > In Feb, I had the male 50ish tests done, a little late I'm almost > 52, but I was busy with stones. I had a colon exam and one polup > removed. My GP wanted me to take a blood test, he was suspecting a > Pheo. So I agreed, and after the colon exam I went off Lisinopril > for 10 days and gave a blood sample. My daily meds are HCTZ- 25 > mgs; Labetalol 100 mgs one morning and night; Lisinopril 40 mgs; and > K-chloride 20 meq once a day. My BP went steadily up to 225/135 the > day before the test; I felt " really " lousy. It took me about two > weeks to get back to just feeling lousy. > > Test results were: K - 3.3 mmol/L about normal for me when taking > K supplements; > Cortisol - 10 ug/dL - normal- Good News no Pheo > Serum Aldosterone - 29.3 ng/dL or 808 pmol/l - high normal for > upright - I was supine > Renin Activity - 0.2 ngmLhr - lowest normal for normal salt diet - > supine > > Calculated Aldosterone/Renin Activity Ratio - 146.5 > > Test conducted by ARUP Labortaories, Salt Lake City, UT > Aldosterone reference intervals for age 16 and older: > Upright.......................4.0 - 31.0 ng/dL > Supine..............less than 1.6 - 16.0 ng/dL > Unspecified.........less than 1.6 - 31.0 ng/dL > Renin Activity reference interval: Adult, normal sodium diet > Supine..................................0.2 - 1.6 ng/mL/hr > Upright.................................0.5 - 4.0 ng/mL/hr > An Aldosterone/Renin Activity Ratio of greater than 25 is suggestive > of hyperaldosteronism > A ratio of greater than 50 is virtually diagnostic of > hyperaldosteronism with 90-100% sensivity and specificity. ARUP > > Question: I did not go off all my meds or K, would this invalidate > my results? (K raises Renin) > > I found a study, " Screening for primary aldosteronism without > discontinuing hypertensive medications: plasma aldosterone-renin > ratio. " Gallay BJ, Ahamd S, Xu L, Toivola B, son RC. Division > of Nephrology of California , Sacramento, CA > > Bascially states that if ARR is >100, " Data suggest that the ARR is > a valid screening assay for PA and discontinuation of > antihypertensive meds is not needed for this test. " > > Had C. T. Scan of Abdomen and Pelvis with contrast > 125 cc of Omnipaque-300 > Results: Unremarkable C. T. of the abdomen and pelvis with no > Adrenal Mass being Evident. > > My Doctor ordered " thin slice Adrenal area only " we didn't get > that. He called the Radiologist, he indicated that " thin slice " > would not find anything more than what was conducted. > > Question: Is the radiologist right? (I've heard stories where they > haven't read CTs correctly in our locale) > > Question: I have read studies on the reliability of CT Scans, it's > about 50-50 on finding anything less than 7-8mm. How big does the > adenoma need to be to cause the problem? How do you find the small > ones? > > I started the Spironolactone one month ago, 25 mgs, morning and > night, in 3-4 days my BP dropped from 160-170/100-90 to 120-115/70- > 50. After two weeks we dropped the HCTZ, BP has risen to 140-135/85- > 95. All " lousy " symptoms have improved. Today we were going to > raise the Spiro to 50 mgs twice a day, but I wanted to try the > Inspra instead. I get that tomorrow at 25 mgs once a day. The side > effects of Spiro scare me a litttle, I figure if I'm just starting > out I might as well be on the new stuff. I'd like to keep my boyish > figure and what little sex life I have left.....intact. > > My doctor (he's been great and would have made a great detective) > and I are kind of at a loss of where to go from here, we are both > researching. We haven't yet found a specialist in my area, Salt > Lake is close, 170 miles, I live in Pocatello, Idaho. If anyone can > recommend someone, please do. > > Question: Without a specialist, Do I need to repeat the CT, > Aldo/Renin Test with salt loading, or do the 24 hour urine test, > Captopril test, screen for GRA or ACTH testing? (I would hate to go > off meds, especially Spiro/Inspra, again for these tests) The > radioactive Iodine I-131 Iodocholesterol (NP-59) scintigraphic > imaging test, Serum 18-hydroxycorticosterone test, and adrenal > venous sampling are not available in my area. What's a next good > step? > > I am trying to get into a NIH study with Dr. Constantine Stratakis. > My doctor has written him to see if I am eligible and we are > waiting. Your Dr. Grim is such an asset to this forum. I believe I > have seen his name on a couple of studies with Dr. Stratakis. I > have read a lot in the past several weeks and have seen CE Grim > mentioned next to some very big pioneers in this field, names like > MH Weinberger, JW Hollifield, JH Pratt, JD Blumenfeld, just to name > a few, and of course the original Conn himself. I have already > learned a lot from these researchers and will learn more, I am very > grateful for them, I owe them. > > I am sorry for such a long first post, I still have more questions, > I thank you all in advance for your help and hope I can make a > contribution to this group. I have learned so much, so fast, " I am > confused to a much higher level " . Not bad for a " slow learner and > faster forgetter " like me. > > Blessings, Randy HI RANDY - HOPE YOU DONT THINK I'M BEING RUDE BUT THAT WAS A POST AND A HALF!!!!!!!!!!!! DELIGHTED THAT YOU FOUND THIS SITE - I DID PURELY BY ACCIDENT ITS SUCH A COMFORT TO KNOW THEIR OTHERS OUT THERE - I'M GLAD YOU'RE GETTING SORTED OUT, WE'VE ALL BEEN THROUGH SIMILAR EXPERIENCES, THE MAIN THING IS NOT TO GET TO WOUND UP ABOUT IT ALL, THAT JUST MAKES THINGS MUCH WORSE. I FULLY APPRECIATE HOW ANNOYING IT IS TO BE SWITCHED FROM ONE MEDICATION TO ANOTHER TO ANOTHER, BUT ITS ALL THE PROFESSIONALS CAN DO TO FIND A SUITABLE " MIXTURE " I WENT THROUGH YEARS (LITERALLY) OF BEING SWITCHED FROM TABLET TO TABLET, THEY PUT ME ON 200MG OF SPIRO A DAY AND WHAT DO YOU KNOW MY BP'S NOW PERFECT - WELL ALMOST! IN FACT I REALLY DONT THINK HAVING " CONNS " IS SUCH A BIG DEAL ANYMORE (I'LL PROBABLEY GET SHOT DOWN IN FLAMES FOR THAT ONE!!!!!!!!!!!!!!) BECAUSE I FEEL SO MUCH BETTER NOW THAT MY BP HAS COME DOWN I KNOW NONE OF THAT IS OF MUCH COMFORT TO YOU JUST NOW BUT I'M SURE WHEN YOU GET SORTED YOU'LL AGREE WITH ME ALL THE VERY BEST LYNN - SHETLAND ISLANDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Randy, As long as you were not on Spironolactone when you tested for aldosterone there should not be a problem. Even if you were then depending on which lab did the test it still may not need to be retested. A new doctor may need some sort of imiaging done though. A MRI is some times much better at seeing if there is some sort of mass when it may be buried in an internal organ. If you can find access to some sort of cancer hospital my bet would be that you could find a interventional radiologist that would be capable of preforming the adrenal vein sampling. My daughters PA was " triggered " as well with a very severe virus and from there on we had a problem. It is like it turned itself on in a time of need but then could not turn itself off. I am glad you found us. W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 If you BP is normal and you K becomes normal on Spiro or Inspra and there are no side effects I would just follow you for now. If the BP is difficult then I would do adrenal veins with ACTH stimulation and then if it localizes to one side then have it removed with transperitoneal surgery -band aid surgery-well 3 band aids. You story again is very typical in my experenice-going to Drs for years who believe that all HTN is "essential" which is Greek for "we dont know what the hell it is". Then a low K shows up and is ignored and they muscle cramps and even epidsodic paralysis form low K. Glad you finally found someone who follows JNC guidlines and listens to you. I would like to store your story for others to read if we can do this on our web sight. Thanks for the detailed story. Genetic testing is usually indicated if there is a family Hx of HTN or eary strokes (before 50 ) in men or if anyone else has have HTN and low K. May your pressure be low! Clarence E. Grim, BS, MS, MD, FACP, FACC Professor of Medicine and Epidemiology Board Certified in Internal Medicine, Geriatrics and Hypertension Focusing on difficult to control high blood pressure and high cholesterol especially in the African Diaspora Quote Link to comment Share on other sites More sharing options...
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