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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.
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This is not medical advice. I am not a doctor, just someone confirmed with the condition.
Conn's Syndrome is a subset of Primary HyperAldosteronism. It is caused by a benign tumor of one of the two adrenal glands. Primary HyperAldosteronism can also be caused by an enlargement of both adrenal glands.
The condition results in excess production of the hormone aldosterone. Your blood chemistry can be greatly altered, probably showing low potassium and high sodium. CO2 and creatinine seem to also be variable though the blood test results can be affected by the unusual chemistry created by the Conn's.
There are many symptoms for Conn's. Fatigue, weakness, tight and cramping muscles, uncontrollable high blood pressure, frequent urination at all hours of the day, sudden strange sensations of the skin or soft tissues of the body, muscle twitching, temporary paralysis, chest pain, possible heart palpatations, and others. A day spent searching Google and reading forums can help find more information.
Aldactone (Spironolactone) is a usual treatment for Conn's, though eventually laparoscopic surgery might be an option if only one of the adrenal glands is involved. Inspra is another, more costly drug which may be used if Spiro side effects are not tolerable. I personally use the Spiro (300 mg / daily) and do fairly well with the side effects, especially when I compare them to how I previously felt when untreated. My dosage is good for me, but lower dosages may be good for you. It takes a few months to find what works.
Study the internet for information and read with an open mind. Do not expect to find a doctor who is an expert in this condition. It is too rare for any doctor to have seen many cases. Feel lucky if your doctor has heard of it. Don't be hesitant to talk to a treating doctor about what you are feeling during treatment. Also be active in your treatment. Make friendly suggestions and / or ask questions about your treatment. A nephrologist or endrocrinologist (perhaps both) may be more likely to have heard of the condition. Conn's is not a common cold, it is very, very uncommon. If you have it, learn to be happy that you have found out you have it. You can find treatment to feel better.
I have just been diagnosed with Conn's Syndrome. I have had issues for over two years. Several times I was told my potassium levels were critically low and sent me a series of blood work. The results came back with Conn's Syndrome 3 + weeks ago.
I have scheduled and appointment to see a kindney specialist but that isn't until June 26th.
I have been experiencing back pain have you had any other symptoms. Doctor sure isn't in a rush to see me and I'm concerned how bad can this get. It's been long enough.
I have Conn's Syndrome. You are very fortuneate to have been diagnosed after just two years. It took over 6-7 years before I was finally diagnosed. Are you taking medication for it to relieve the symptoms? I am not a doctor but I think if your potassium level is normal now and you are feeling okay it wouldn't hurt to wait until your appt. on the 26th. But if you are in doubt ask if it would be possible to go in before that date. You asked what other symptoms someone might be experiencing. Before I was diagnosed I experienced borderline to high blood pressure for years. I then began having heart palpitations periodically and especially at night after lying down. I couldn't tolerate foods with high sodium and sugar content. I was tired most of the time and just thought it was because I was getting older and everyone goes through this. I am 56 years old and began having high blood pressure since I was 46 or so. I also began having migrane headaches which I thought might be attributed to PMS but I had never experienced a migrane until my late 40's. Six months before I was diagnosed I began having back pain and muscle spasms in my back and a full feeling in my upper right abdomen. I was experiencing dizziness and just a general feeling of tiredness. When I was finally diagnosed I had a very low potassium level and my blood pressure was dangerously high even though I was taking several medications for high blood pressure. My family doctor gave me some info about Conn's Syndrome at that time and referred me to an endrocinologist for extensive testing. The specialist first had me do a 24 hour urine collection and take it to the lab. It came back normal. Then I had to go to his office and have a 4 hour IV to check for my body's reaction to sodium and to check aldosterone levels. That test showed higher than normal aldosterone levels so he ordered a CAT scan to look for a benign tumor in the adrenal gland. There was a very small benign tumor so he diagnosed me with Conn's Syndrome. He started me on the dieuretic Spirinolactone, which is a potassium- saving drug. After being on this med for 3-4 weeks I began feeling much better. My blood pressure is better than normal now. I never thought I would feel normal again. I do need to make sure that I don't eat high sodium foods and too many sweets and that I drink plenty of water. I feel my best when I eat plenty of vegetables and fruit, excercise, and drink at least 8 glasses of water per day. I probably gave you more info than you needed but I want to let others know what to expect and what they can do to feel better. Also realize that everyone is different and no one will exoerience the same symptoms as another person. I found out more about hyperaldosteronism online. You can google it or you can check webmd.com
Best wishes to you!
Thanks for replying.
I am currently not taking medications to relieve my symptons. I am 60 and have had this nagging upper right front and back right side pain for a couple of years easy. They tested me for stones but nothing showed. Pain would disapate so I would let it go and then start up again. I have been on blood pressure medication for quite some time. My current doctor recently took on a new associate who finally "heard me" and sent me for additional blood workup which I mentioned to you.
You mentioned you do have a benighn tumor so I take it that surgery wasn't neccesary. I am concerned about that. I thought that was the only relief I would get.
I will be seeing the dr on 6/27 and let you know what the plan for my treatment is.
Dear All
There is an excellent support group at yahoo groups
hyperaldosteronism@yahoogroups.com
really worth a try - probably the entire globe of Conn's folks is represented with really excellent and certified medical advice
Good luck to all
hey a wud like 2 meet u freinds with hyperaldosteronism
I was on the internet searching information about Conn's Syndrome or hyperaldosteronism when I found this site and decided to join. I live in ALberta Canada and I have been not feeling well since 2004 or a bit before. I have most of the symptoms but those symptoms can be alot of other things and I have been told, I have myofascial pain/fibromyalgia tendencies. I believe I do have myofascial pain but I also believe that I have something else and I have always said that to my doctor. My doctor does not know much about any of these syndromes. I have been trying to find out if Conn's can be inherited and from what I have read, it can be. My brother and I started having similar symptoms around the same time and we did not know it for several months until we got together at Christmas time and started comparing. My blood pressure was not as high as his but it is pretty tempermental and hard to control with medication. (I also had very high blood pressure when I was 14 yrs old and it was eventually treated with the birth control pill!!!!!) Anyway, a tumor was found on my brother's adrenal gland and eventually removed. In the mean time I am still messing around with doctors and feeling awful. Not sure where to go but I would love to hear about others experiences. Hope to hear from some of you.
Conn's Syndrome or Hyperaldosteronism is difficult to diagnose. The first step is to ask your primary physician for a referral to an Endrocinologist who will know what tests to run and whether or not Conn's is a possibility judging from your symptoms. It is a rare condition, and many times it goes undiagnosed until the symptoms become very serious and difficult to live with. That is what happened to me. I lived with borderline high blood pressure for a few years before taking meds, and even while taking high blood pressure meds my blood pressure was never quite low enough to satisfy me or my doctor. So he continued to adjust and change my meds to bring my blood pressure down but nothing worked. And for several years I had an intolerance for spicy, salty foods and also when I had too many sweets, I just felt not quite right after eating those foods but I can't really describe it.
When my symptoms became more severe and consistent, for instance, muscle spasms in my back and a full feeling in my upper abdomen. I also had more frequent headaches, a few being migranes and I experienced dizziness and feeling very tired. My doctor ran blood tests and found my potassium to be very low and my blood pressure was very high- 180/110. He referred me to an endrocinologist. That dr. ran extensive tests and finally decided to have a CAT scan done according to what he found in the tests, which was a high aldosterone level. A very small benign tumor was found in one adrenal gland. He immedietly put me on a med called Spironolactone. This is a potassium-saving dieuretic. This was 3 years ago and I have felt great. I have not had the tumor removed because I am doing so well on just the one medication. I have chosen not to have it removed because I have done so well. I do need to have a CAT scan done every 2 years or so. I may have it taken out eventually but as long as my dr. doesn't think its necessary I won't do it.
I have probably given more info than you wanted but I knew how I felt when I was uncertain about what was going on. The one positive thing through all this is that there is a treatment that will help you to feel normal again and probably a cure if you have the benign tumor removed.
I hope this has helped you.
Jacque
Thank you Jacque. It is so nice to realize that there is someone out there that does understand. It was about 4 yrs ago I started having dizzy episodes or spells and became extremely tired and weak feeling. These spells can almost be linked to times during a day or I can almost forcast when I will get them. I don't have them as much in the evening. Does this sound familar to you or anyone out there. My doctor claims to have tested me for the blood levels of various things that would indicate Conns and he says I am okay. My potassium is on the low side but within guidelines. He did refer me to the same endocronologist as my brother but he said since the tests my doctor had done on me didn't reveal anything and Conns is NOT inherited he didn't want his time wasted basically. I have read that you can still have it and tests show normal and that it can be inherited (Chromosone 8). I am definitely getting worse. I have pressure on my upper right abdomen and pain through to my back occassionally and my left side is starting to bother me. I wake up in the night, feeling bloated, puffy especially around the eyes and have to go to the bathroom. I wake up with headaches and I know that is not good. I am always tingling and take neurontin for that. (used for Fibro/myofascial pain). I still think I have conns or something very similar. Do you think I am nuts because that is how I am starting to feel from doctors. In the mean time I just get feeling worse. I have had to quit working and my life has drastically changed. Thanks again for your support and would like to hear from others that may or may not know about Conn's being inherited.
Hi Elems,
If you google Hereditary Hyperaldosteronism you will find info on that.
My potassium level was always within range but a little more on the low side for years before I was diagnosed.
But I had the high blood pressure all along and some symptoms like feeling tired much of the time. Because my potassium levels for all that time were normal they did not test me until my blood pressure was very high and my potassium level was very low.
What I would like for people to know is that if the doctors would have run the tests, especially the CAT scan that revealed the tumor, when I first experienced high blood pressure I would have been diagnosed many years before I actually was diagnosed. If I had known way back then, what I know now, I would have insisted on more extensive testing. I spent years with light but persistent symptoms and with high blood pressure. I am fortuneate that I didn't develop kidney problems or heart disease. So, I say, take a proactive approach for your own health and have them run more tests.
I also want to mention that I had no predisposition for developing high blood pressure. High blood pressure does not run in my family, I was not overweight and I usually watched what I ate. So I would have thought the doctors might think there was something suspicious about my high blood pressure and there might be something else causing it. But the doctors took no action until damage could have been done.
Since your brother has this condition I believe the doctors should run more tests. I am not a doctor but I have strong feelings about not waiting until symptoms are worse.
Well I have gone on & on. I hope I have been of some help to you.
Best wishes,
Jacque
thanks once again Jacque. My doctor has referred me to an internalist and I will try and insist those tests be done on me and that a CT is done. I am at a stage where I think I need something looked at quickly or damage could be done but I keep functioning and trying to remain positive. Sometimes, I think that does a person in. I am not overweight, I look healthy most of the time (face is puffy and I do look tired lots) and try to look professional - I don't think it helps. Anyway, I will try to be more insistent with my doctor. I will google Hereditary Hyperaldosteronism and see what I can find. Thanks
Thank you jerryjohn for the reference to the yahoo group. I would recommend it to everyone.
Hi Jacque - just wondering how your day is going. You have indicated that you want emotional support by the topic of your discussion. That is what I am looking for aw well. I live in Central Alberta, Canada so my day is just starting. It is starting with the usual dizzy/tingly sensation that I get. It makes me want to just go back to bed but I won't allow myself to do that. Anyway, have a good day.
Good morning! I have been wondering if you've seen the internalist yet and how everything is going. I can relate to your feeling when you rise in the morning and continue to feel the same symptoms day after day. I went through the same thing for so long. I hope that the doctor can shed some light on a diagnosis and treatment for you. Hang in there and I'm sure you will get some answers.
Best wishes,
Jacque
Hi Jacques,
I have been reading your dialogue with Elemsi and also have hyperaldosteronism/adrenal tumor. Everything you have described I have experienced and have been quite distraught on how little information my endocrinologists have. I am aware that is it rare...however, there MUST be more sysmptoms other than high blood pressure and low potassium. Before my potassium supplements, I suffered from the puffy face even when I wasn't overweight, still I have some exhaustion, I never seem to get enough sleep, I have arrythmia at night which makes sleep so difficult, and then there is the frequency with urination which is awkward. I'd love to hear if you and Elemsi have any other symptoms like me and have you all become discouraged with the health care you are getting? Best wishes for you both during this difficult journey...
Hello, and I am happy you have responded because you are the first person I have spoken with that has been diagnosed with Conn's with the adrenal tumor. You asked if I had any other symptoms and I did have heart palpitations especially at night after lying down for some years, but after being diagnosed and put on the med Spironolactone, I have not had the palpitations. Also before being diagnosed I had migranes every now and then and also felt bad especially after eating salty, spicy, or sweet foods. I have read that you become sensitive to foods like that if you have Conn's.
Did you have the tumor removed? I chose not to because I have done so well on the one med, that I have chosen not to at this time. I have felt so much better, but if I eat too many sweets,salty or spicy foods without eating alot of fruits & veggies I feel bad again.
And its difficult to describe. I just know that I when my diet consists of fruits, veggies, whole grains all with very little salt and sugar, I feel great. My blood pressure is very good, 117/24 and I only take one med instead of the two or three, like I was taking before. The potassium-saving dieuretic, Spironolactone, is all I have needed, to feel normal again.
I would like to know your story with Conn's and what you're doing right now for it.
Thanks, jacque
Hello everyone. I am still recovering from a left adrenalectomy to remove a tumor that was causing my Conn's syndrome. It took me 8 years to finally get a diagnosis, and to get the right tests done to show the tumor was indeed active. I had all the classic signs: I had super high (100's over 200's) blood pressure from age 32 that was still not controled with 5 meds (Norvasc, Lisinopril, HCTZ, Spironalactone and Cozaar, all at max doses) and severe potassium wasting (down to 1.4 at the lowest...Emergency room freaked out! Fastest service I have ever had at the ER). Finally I was refered to a nephrologist, then he sent me to an Endocrinologist (the second one I saw during all of this, the first just blew me off). After running tons of tests, he was getting frustrated when I finally did the research myself and told him they would have to pull me off of almost all my meds to see the correct Aldesterone/renin ratio. He finally agreed, and after a month off of everything we did an adrenal vein sampling, which showed the left adrenal (with tumor) was through the roof (5600 in a reference range of 1-16) for aldosterone, and finally provided the proof we were looking for. The surgery was laproscopic and the surgeon did great. I am still really fatigued (surgeons always say: it will just be a couple of weeks and you will be fine...yeah right!) but it is getting better. My potassium is normal and bloodpressure controlled with one med (and once I loose some weight that should go away too). It has been a crazy journey, I thought I was going insane, but I was right and now am on the road to recovery. If you do not advocate for your own health, no one else will, so do not let them blow you off if you have legitimate concerns.
Dear jsimons1968,
Very helpful and useful info that you have shared. I appreciate it very much. Aside from the discussions on this site I have never spoken with anyone who has experienced this condition. Gathering from your discussion, you had the tumor removed and not the entire adrenal gland. That would be my course of action if I ever decide to have it removed. Right now I am going to wait. I am doing fine on just the one med, Spironolactone (50mg 2xday).
I am 56 years old and I first had high bp when I was 45 or 46 and I was finally diagnosed at 53. I experienced borderline to high blood pressure for about 7 years and the doctors continued to adjust my blood pressure meds when my bp would not have a desireable reading. It was very frustrating because I knew there had to be something else going on. I was asking, why do I have high blood pressure when it doesn't run in my family, my weight is normal and I excercise on a regular basis. But the doctors just kept telling me that my body is just that way. Of course for most those 7 years I also experienced vague symptoms that I never mentioned because I thought they would think I was a hypocondriac sp?. And I thought these were just signs of getting older or PMS or something like that. My bloodwork always came back normal. Looking back I recall my potassium level being normal but low normal.
Three and a half years ago my symptoms became worse. My blood pressure became consisitently high even though I was on three meds. I was having more heart palpitations, dizziness, muscle spasms in my back, migranes, tiredness all the time. But not until my visit to an urgent care center, because I thought I was having a heart attack, blood pressure was 180 /110 and my potassium read 2.6 did my family doctor give me info on hyperaldosteronism and referred me to an endrocinologist. Later I asked my doctor, why he didn't consider this condition before, and he said that the tests are very extensive and costly and until the symptoms are very serious most doctors don't consider Conns. Well, I know that needs to change. Doctors do need to consider Conns and they need to become more informed about this condition.
I wish you a speedy recovery and I would like to hear of your progress as time goes on.
Thanks,
Jacque
How did the salty, spicy or sweet foods affect you?
Thanks for the question! The affect that these foods have on me (especially Chinese food and soups-because of the high sodium content) is difficult to describe and make any sense of it.
I usually feel a little bloated, difficulty sleeping, a pulsating sensation in my head and ears ( maybe because my blood pressure goes up but I'm not absolutely sure about that), waking up at night with numbness in my hands, and just an overall uncomfortable feeling (headache or fullness in my head) Well, I warned you that it may not sound like it makes sense.
I just know that when I eat less salty, spicy, or sweet foods (less of the bad carbs) I feel, I guess, normal.
Well, I hope that helps you.
Jacque
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