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I would like to know someone else's story about their experience with Conn's syndrome. What were their symptoms before they were finally dignosed, and what is their treatment (medication or surgery). What other info can they offer. I have found no one who has even heard of this disease, let alone actually have this condition.
Exercise Surgery Back pain Meditation Common cold Menopause Prozac Fibromyalgia Stress Dizziness Asthma Stroke Diabetes Anemia Hypokalemia Inspra Hypertension Lotrel Weakness Cozaar Neurontin Aldactone Insomnia Nifedipine Hyperaldosteronism Heart failure Cancer Atenolol Chemotherapy Norvasc Osteoporosis Cortisol Spironolactone Dehydration Heart disease Triamterene Aspirin Lisinopril Sweating Kidney cancer Glaucoma Suicide Furosemide Pain Memory Cataract Heart attack Avapro Conn's syndrome Congestive heart failure Valium Depression Paralysis Eplerenone
Sad fact is, most MDs you might encounter will know very little about hyperaldosteronism and its effects on the whole organism. My PCP, for example, doesn't even know what Conn's is and has no desire to learn about it. A conscientious endocrinologist, on the other hand, will be informed enough to know that when one gland is affected (changed), this in turn affects what the other glands do. Someone here in this forum once mentioned that you have to be your own health-care advocate, and it's really true; don't let anyone brush you off or tell you your concerns are unfounded/meaningless!
I have been diagnosed with hyperaldosteronism. On Monday I will have the AVS test. My endo checked with radiology to see if they are experienced enough to do the test. And he said they were. I trust him.
This is not my first round with a difficult to diagnose disease. I have had hyperinsulinism [sometimes called hypoglycemia] since childhood and fibromyalgia for about 20-25 years. I had lymphoma 6 or 7 years ago and the adrenal gland tumor showed up for my 2nd quarter CT scan following 8 rounds of chemotherapy. Actually 2 separate tumors showed up, causing my oncologist to erroneously decide the lymphoma had returned. I became dramatically ill following the chemo that was given by mistake.
Like some of you, I gained an unbelievable amount of excess weight no matter what I did to somewhere over 350 lbs now. Your honesty on this point has been a considerable comfort to me.
My blood sugars have gone haywire...up and down to higher numbers than I ever had in the past. The lifestyle behaviors I used in the past to manage my fibromyalgia have become out of the question and I am mostly housebound.
It has been a nightmare of sorting out what was wrong from all this mess. The way I see it [I'm not a physician...but I AM a Ph.D. trained in understanding research and logical thinking], the excess aldostorone causes a cascade type of effect kind of like dominos. One hormone impacts others in a variety of ways.
I knew nothing about hyperaldostorone nor did I suspect anything like this. Instead, I have continued to try and (1) manage my blood sugars and (2) lose weight. Every time I went on a healthy weight loss diet, my blood sugars became uncontrollably extreme...mostly down but up and down as much as 80 points in around 30 minutes. I asked my very good PCP for a referral to an endo for this. At the same time, I asked the university hospital for the endo that understood adrenal gland tumors.
After my initial diagnosis, I joined that yahoo group you all write about. I am uncomfortable at the blanket recommendations that the doctor makes to people he doesn't know. Personally, I do believe it is an error for a licensed professional to offer professional advice to people without the full range of background information normally gathered in a f2f meeting.
No matter what I wrote back in that group about my experience, the advice came back: spiro & DASH diet. In my case, due to my hyperinsulinism, the ABSENCE of salt makes me very ill. This means that a low salt diet is out of the question. Finally, in my searches I learned that excess salt counters the excess insulin in my body.
But also, the healthy diets with amount restrictions of any kind [and I followed them for many months over and over again...thinking my weight might be making me sick] these diets all made me even more sickly and nonfunctional than I was.
It troubled me greatly to seek information from a yahoo group only to run into the same kind of blind rigidity I ran into in my search for an answer.
I got the most information and help from this site [http://hyperaldosteronism.blogspot.com/] that one of you all wrote to document your personal experience.
Really, it's beyond frustrating when you've been paying into insurance, and then they find some reason not to help you. I suppose there might be some people with a spare $80,000 in their pocket, but I sure don't know any. For my part, ending up homeless and bankrupt is still better than living (dying eventually) with this Conn's disease. What a society we live in...
Hello again ilene123,
My husband and I researched MichaelBUS’s recommendation to have an AVS (Adrenal Venous Sampling). I also recommend that you look into it. All the research we (my husband and I) have found stated an AVS is a must for 100% clarification of hyperaldosterone. Please check out this one site that shows comparisons of correct identification of hyperaldosterone via different methods:
http://jcem.endojournals.org/cgi/content/full/93/4/1366
Since you do not have Conn Disease, this test is of greater importance to you. It will tell you which adrenal gland is the ailing gland and/or if both glands are ailing. This is very important to ensure you get correct treatment.
I truly hope I have been of help to you. You have helped me in your honesty with your symptoms that I can relate to. Misery loves company, as they say.
Ginger Peaches
Hello MichaelBus,
Thank you very much for your suggestion of AVS. My husband and I had not heard of it before. Unfortunately, I do not have time to take the test as my surgery is 1 ½ weeks away. Regardless, there are cases where Conn Disease is so prevalent, an AVS procedure is not necessary. I believe this is why my endocrinologist did not recommend it. I am pretty messed up. After the endocrinologist, I went to a surgeon, a very well known surgeon, and he thoroughly checked my CT scan and blood and urine tests and history. He also wanted me in surgery as soon as possible. My current surgeon also recommended immediate surgery without mentioning AVS. (Long story, I will tell uplandbill about that.)
While I do agree with you on the AVS test being necessary for everyone, in fact, a must-have to ensure a correct diagnosis, the procedure is to be done by an experienced doctor and they are not available in a good portion of the country. I would not like people to worry or be discouraged if they cannot get it. The other tests are good, just not as reliable and fast, and it may take a bit longer and need more testing, resulting in longer experimenting with the meds to get the right combination to work in accordance with the correct disease. Also, Conn Disease has a tumor. You are right in the tumor’s possibility of not being the cause of hyperaldosterone; however, if you have all the symptoms and a tumor, the odds are great you have Conn Disease. Please see the site I listed above in ilene123 for more details.
I have seen your name around this site before and have noted you are also going to have surgery soon. Please post what is going on with you, if you are able, and how it is going. Would you also, please, let me know where it may be posted, if not posted here. I do not know how to look for specifics on this site.
This site is very helpful and informative. I feel much better about my upcoming surgery and all I have been thru. You are a great help. If you think of anything else, please let me know. If the information is too late for me, it may help someone else.
Thank you again, and I wish you an easy surgery and recovery.
Ginger Peaches
Hello uplandbill,
You are the person I was hoping to find to get back in touch with a few days ago. I still don’t know how to move around this site to get to a particular place I have been. I am glad you posted a note to me.
We, my husband and I, had checked out UCLA and USC and they were both highly rated and suggested. However, I could not tolerate the drive in my condition. Kind of a catch 22. My husband really pushed for it. I just couldn’t go.
I did find a wonderfully perfect surgeon at UCI, Doctor Ralph Clayman. I love him. Of course, while at UCI, UCI being a teaching medical hospital like USC AND UCLA, there were always clusters of people watching and noting everything we said and did. As long as Dr. Clayman was there, I had no problem with them. Doctor Clayman is well known around the world for his teaching and inventions. He invented the hand-assisted thingy to go with the laparoscopic surgery (which my new Surgeon said he may use). Dr. Clayman sees patients only after he has received all their information and reviewed it. He then chooses who he deems is different/difficult to perform surgery on as a teaching process. He set aside 4 ½ hours for my surgery.
The sad thing was, 1 ½ weeks before my surgery (at least it wasn’t one hour, like you), my insurance finally came clean and said they weren’t paying for my surgery due to my condition being pre-existing. UCI gave us a bottom starting, get-in-the-door, rate of $80,000. So we had to cancel because we knew the surgery would end up costing well over $100,000.
Unfortunately, I had to wait one year before my insurance deemed me to be insurable and not a pre-existing condition. Furthermore, by that time, Dr. Clayman took a promotion and no longer does any surgery whatsoever. My husband and I had to start looking all over again. Of course, he pushed for USC and UCLA again, to no avail.
We then came across the DaVinci Robot. We loved its aspects and decided on using a surgeon who would use it on me. My husband was talking to our neighbor, who is a pediatric surgeon, and he suggested his friend, who happens to be the surgeon who heads the department at St. Joseph’s for the DaVinci Robot. After much communication with this surgeon, we finally found out he does not take our insurance, Aetna PPO. He said, “I am the best, why should I discount my services.” Needless to say, we moved on and found my current surgeon. When my neighbor came back the other day to find out how I was doing because he knew of the insurance thing, my husband told him about my new surgeon and our neighbor lit up. Our neighbor seemed happier for us to have my new surgeon than his friend, the head of the department. Why our neighbor did not suggest my new surgeon in the first place, we do not know.
Also, I like my new surgeon a lot. He is no-nonsense and spent about 1 ½ hours with my husband and me at our first face-to-face meeting. We really grilled him. We talked about everything. He never got upset. I once had a doctor actually walk out on me saying, “You don’t need me, you have the internet, you know everything.”
If your insurance covers you to go to St. Joseph’s in Orange, perhaps you would like to see/interview my doctor. You can communicate via email first to check him out, if you wish. He is closer than USC. Please let me know and I will give you his information. You could even wait and use me as a test for his surgical abilities and to see if I recommend him afterward.
By the way, my new surgeon scheduled 2 ½ hours for surgery and said it may go longer if he is making progress. If he finds himself at a standstill in removing my gland, he will then make the incision and use the hand-assisted thingy. Please note, this incision is not the full open incision. It is only 3-4 inches. You questioned this, and so did we. I know it seems wrong that I should be cut, but Dr. Clayman had also said my tumor/adrenal gland was going to be difficult. My new surgeon knows Dr. Clayman and disagrees in his decision with me being under for 4 ½ hours. He said it is too unsafe and would rather make the incision and keep the surgery moving, than keep me under and manipulate my insides (not his exact words, obviously). He also said Dr. Clayman needed the extra time to teach and he moves slowly in doing so. I find it uneasy that a surgeon would keep you under longer just to teach, but I did not contact Dr. Clayman for a rebuttal.
Anyway, I wanted you to know, because you want to continue to go to USC at your own cost. Up front, the hospitals are very friendly and then zap you with an enormous bill afterwards. So many people have lost their houses because of doctor bills. Both the hospital and the insurance carrier actually lie about the cost. We almost fell into the trap with our insurance company misleading us by saying I was covered. Sure, I was covered, but not for any pre-existing condition. My waiting time was one year, not three months as usual.
Whichever way you choose, I wish you an easy surgery and recovery. And thank you for posting to my post. That is so cool.
Ginger Peaches
Hypoaldosterone here, and it sucks too and was very hard to diagnose.
Ginger -- If you can somehow manage it, you should see Dr Michael Yeh at UCLA Endocrine Surgery Center. Like you, I was set up (Blue Cross HMO -- not good) with a local surgeon (Upland CA). He was to do adrenalectomy 10/16: Conn's with adenoma on right adrenal. At the last hour (!) this surgeon canceled my operation: he admitted he could not do it. So now I'm just paying out-of-pocket to see Dr Yeh 10/26. It is possible to remove your right adrenal without someone sticking his hand in your mid-section. In any case, best wishes in your pursuit of help: many here say the adrenalectomy made an enormous difference in their health.
Make sure you get Adrenal Venous Sampling before surgery to make sure its the tumor that is causing your symptoms. Sometimes we get tumors that mean nothing while it is both glands that cause the problem.
it took a long time before i was diagnosed with
hyperaldosteronism,no doctor had knowledge of
a disease like mine.My symtoms started out very
slow, muscle weakness, lower back pain and
finally paralysis.I lost most of my potassium and
was paralyzed from the waist down for about a ,
month.The doctors filled me up with potassium
before leaving the hospital.A few days later the
symptoms started again and i made the trip to
the hospital again. This went on for several years
before my doctor began to look deeper for the
cause, he didnt know where to start so he inlisted
other doctors to do research to find the cause.
i personally believe my diease is linked to diaretics.
i was on a lot of fluid pills for hbp before my ,,,,
potassium bottomed out.
Hello ilene123,
This is my first time responding to this Nord Rare Disease site, or any site for that matter. Last night I came across this site and started crying and could not stop. The postings of people talking about the things I have been complaining about for years and years to my own doctors make me feel not alone, and that someone else truly does know what is going on with me.
After all the messes I have been thru with doctors for over 15 years, I now finally found this site for support. I wanted to write and couldn’t. I was crying too much. When I just now went back on the site to look around some more, I came across your posting, Ilene. I have Conn’s Disease but I believe our two diseases have the same effect on our systems. As you have not been responded to yet, and I can relate to everything you said, I hope some of my ordeals will help put you at ease and perhaps, save you a lot of heartache.
In the beginning, I noticed whenever I got stressed I would gain weight. I paid very close attention to what I ate, as I wanted to ensure I was not an emotional eater. I had my husband count calories and physical activity with me to ensure I was doing nothing to deserve my weight gain. Than I began to get weak, both in strength and in general condition. I spoke with my doctor who I had been going to for years. Nothing came of it. Then I went blind due to cataracts in both eyes at 36 years of age. No reason given as to why. My weight continued to rise and I started doing drastic measures. I think the horrific diets I put myself on (that did not work by the way) are what caused me to have Acute Pancreatitis. I was in the hospital for one weak before they could operate to remove my gall bladder. They had to bring my body to a safe operating condition as I was so weak. After that episode, my life went straight downhill.
My doctor realized I was having a domino effect and prescribed drugs and more drugs to get my uncontrollable blood pressure down. She could only get it down to the 150-160’s at best. She had a lot of tests done on me to no avail. I began to complain of my right kidney hurting and how much weaker I was getting. She checked this out and gave me more drugs. Years have gone by and I was up to eight horse pills of potassium a day and four different kinds of blood pressure medicine. She put me on Prozac and stomach medicine. She really did try but I thought she should send me to someone else since she was not finding anything. Obviously, something was wrong.
I eventually had put on 175 pounds to make me 300 pounds. I cannot walk across the room without holding onto furniture. Some days I cannot stand. I cannot bend my ankles at all in the morning. I have given up on losing or maintaining weight, as I know gaining weight is not of my doing. I am not depressed, I am angry, frustrated. I cannot think or do anything without getting emotional. I sleep all day and am up at night. I am so thirsty and always going to the bathroom. I do not answer the telephone or door. I shut myself off. I am too panicked to talk with anyone. I do emails only and on my timetable. I am too tired to watch television. My husband takes me to the doctor. I have no life.
I had survived an almost suicide ordeal. I had it with life and all the drugs I was taking. The drugs weren’t helping. By now, my doctor had told me I had congestive heart failure and that I was just getting older and slowing down. I decided to just quit the drugs and deal with my condition as it was and let myself die off. But first, I wanted to know how bad my heart was and what condition I would die from and how soon. I went to another doctor and got an EKG. My heart was fine. I stated what my doctor said. She took the EKG to another doctor and later called me with the same result. This was what brought me back to my original doctor causing me to complain that I wanted something done now.
I complained so much, she sent me off to an endocrinologist to check my hormones. By this time I was 50 years old and menopausal. I think she just did not want to deal with my complaints anymore.
I told the endocrinologist all the drugs I was taking. He had my blood taken and ordered a 24 hour urine test. That was it. He found it. But then he had to confirm it with a CT scan. He put me on that Spiro drug and three others and changed some of my then-current meds. He also said he wanted me to have surgery immediately. I have Conn’s Disease.
Wow, I feel much better now. Guess just talking/typing helps. I did not mean to say all this. I apologize for the book. By the way, having been put on that Spiro drug and meds worked miraculously. It was like a new me. Granted I still cannot walk far, but I can walk around the house without holding onto furniture. I am still having a lot of the same symptoms, but not as severe.
I am going Nov. 4, 2009, to St. Joseph's in Orange, CA to have an adrenalectomy. I have a stupid tumor, yes stupid, causing my Conn's Disease. I sit here in tears again. I am such a mess still, even with all the medications I take. I am also panicing and causing my very calm and wonderfully patient husband to take a lot of aspirin again. I am about ready to cancel the surgery because of the lame nurses involved. I just don't know if it is the disease or correct judgment in my decisions anymore. (I bet it is the disease.) My husband just wants me to be happy and confident in my decisions. Sorry for the blabbering. Obviously, I am in a low mode again now. See how fast the moods come and go? Apparently, we are not alone.
My Surgeon is very honest in that he does say he is having another Surgeon in his office assist because I was going to be a difficult patient because my tumor is in an inconvenient area on my right adrenal gland. My gland is separate from my kidney and higher in my chest under my liver by a main vein/artery. My Surgeon is going to use the DaVinci Robot laparoscopicly (sp), but said he may have to also cut a 3-4 inch incision (hand-assisted laparos…) so he could get his hand in to lift up my liver to get at the tumor. He scheduled 2 ½ hours. He said his main concern is to not have me under anesthesia for too long.
I have also, on this site, been reading of a few people who have already had the surgery and said it is very painful and took a week to recover just from the pain. I was not expecting that and, of course, I am getting stressed some more.
I am telling you all of this because I had no one. (My husband is with me all the way but it just is not the same.) You have had this disease for a long time also and sound as bad as I am. Some people are bringing up the topic of the “dark side”. I think that needs to be addressed. I was there. I think you have too. Please realize, it is just part of this disease.
My ordeal is almost over. I wish yours was. I hope you check into a surgical option or get better drugs to help you thru this. You shouldn’t live with all of these problems. There is help... I wish I knew sooner.
I would like to thank everyone who contributes to this site. It has done wonders for my morale in just this 24 hours I have known of it. Thank you.
-Ginger Peaches
I have hyperaldostroism, was diagnosed in 2000.
I have had excessive weight gain,i exercise and
eat light and cant lose weight..I have cramps in
my legs,muscle pain and depression. I am emotional
a lot of the time and cannot motivate myself anymore.
i find that walking helps to calm me ,reading inspiring
books also helps. the depression can be very dark,
i have mood swings and negative thinking at times.
I was in error, Spiro is the diuretic. Weird that you would also be on another diuretic as well.
I believe Spironolactone is a potassium-saving diuretic.
Jacque
Most facilities do AVS as an outpatient. NIH is more risk averse.
Spiro is not a diuretic, so taking it won't interfere with what you are taking.
In continuing my treatment, I met with a surgeon yesterday...he was very thorough, showed me my CT scan and pointed out the tumor; however, he is still scheduling me for the AVS procedure prior to surgery. He said he wants to be 100% sure which adrenal gland is overproducing the aldosterone. Rather than a 3-day procedure, I was told it would be out-patient and that I just needed a driver because I would have some medication. Perhaps I should have asked more questions! He also prescribed Spironolactone, as I've read many of you are taking. I inquired if I should continue with my other BP medications also and he said "yes." I'm a little unsure about continuing to take my daily 2 doses of Traimterene/Hctz, along with the Spironolactone...seems like alot of diuretics to me! I'm also to continue taking the 4 potassium tablets - with the 2 potassium-sparing diuretics. Maybe I should give up my daily banana?? :-) Thanks again for all the support!
NIH changed my meds and retested 24 hour urine and saline suppression. I did not suppress, so the AVS is scheduled for Sept 14. NIH does this as an inpatient procedure, so I go in on the 13th and can leave (and go to work from NIH) on the 15th.
The meds they have me on initially produced tachycradia, but that has been resolved and BP is under pretty good control. They added back the diruertic, which gets removed again on the 7th.
Good luck with everything!! Please let us know how you make out. I find that the more we all share, the less scary it is for everyone. Take care, K.
Recent Conn's Diagnosis
By travel02
Posted today at 9:18 am · 0 replies
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After experiencing high blood pressure for years and more recent low potassium levels, my "new" primary care physician (my old one retired) said she felt like she would be doing me a disservice if she didn't send me to an Endocrynologist for further evaluation/testing regarding my symptoms. After many tests...blood tests, 4-hour saline infusion, CT scans...I have an appointment with a surgeon this week to discuss further treatment. I've been taking blood pressure medication, a diuretic (2 X day), and 40 MEQ of potassium daily for what seems like forever. However, I too have wavered between what results I was hoping for as the tests were conducted. One day it was just to have high blood pressure and low potassium...the next day I wanted to have the adrenal tumor so I could be off the medication. After finding this site and reading all these messages, I realize that my feelings are pretty normal! After reading what some of you had to go through to get a diagnosis, I'm thankful for my family doctor pressuring me to follow through with the testing. I feel like I'm a much more "informed" patient from reading about all your experiences with this disease...and I thank you for sharing.
Michael,
I would be really interested to continue hearing about your progress. I am seeing a small town endo but have an appointment with an endo in Philadelphia next week. Have been off all Aldactone to get "valid" test numbers. I understand exactly how you feel. Part of me wants to just have low potassium/high blood pressure and be on meds. The other part wants the adenoma removed so that I can stop experiencing all of the symptoms. Am really scared about what would be involved with the AVS and the adrenalectomy. Good luck and please keep us posted!
I have been referred to NIH for AVS and surgery, but first they are redoing all labs (except CT, which I got on disk - as well as my renal dopler ultrasound). Last week the did baseline testing (they started changing meds 2 weeks ago), yesterday I did 24 hour urine and today I had a redo of salt suppression. BP was high at points, but I had meds with me. I think I survived. I did not pee as much this time as last time, but considering I am no longer on a diuretic that is to be expected. We will see if the results are any different on this testing regime. Part of me wants to just have essential hypertension with a need for adjusting meds and the other part wants the adrenal with the 2cm tumor out.
AVS is either in 3 weeks or 3 weeks after results come back. This gives me time to earn some money for that hospital stay, plus the 3 weeks I will be out of commission for adrenalectomy, if it comes to that.
Dr. Grivas at Wildwood Hospital in Wildwood Ga diagnosed my Conns Syndrome. I had to pee in a bottle of acid for 24 hrs etc. The had the CT Scan with contrast and that is when they found the tumor. My Aldosterone level was 50 mg.
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