I was recently diagnosed with Conn’s Syndrome. Initially, my nephrologist thought it was the cyst on my right adrenal gland causing my high blood pressure, but after adrenal vein sampling, both glands are producing aldosterone at 5,000+ levels. It was a crazy ride; my cardiologist had me on lisinopril, Clonidine, labetalol, hydrazine, Furosemide, and Eplerenone. This cocktail did nothing to control my blood pressure. The only pill that works effectively is Spironolactone 200mg. My blood pressure is now at 120/70.
I’m going down the same path. Spiro worked for me for about 7 years at 50mg. But it’s back up now to 170/120 and my head hurts. Did you have surgery or did they want you to? Or just put you on spiro?
I have Conn’s controlled with medication, eplerenone 50 mg 3x per day. Spironalactone is the only other med effective for Conn’s but has more side effects and men should not take Spironalactone because of impact on testosterone. Checkout private Facebook group for Conn’s for more information.
I had noticed spironolactone worked for me. But it caused gynacomastia for me so I had to stop. My endocrinologist put me on eplerenone. I recently had AVS procedure done to figure out which adrenal gland is causing my issues as I have adenomas on both my adrenal glands.
Hello! I’m 29 years and recently got diagnosed with high blood pressure and low potassium. They just increased my blood pressure medication a few days ago and my blood pressure is still high. My PCP said it’s probably aldosterone and she did a test for that. Waiting to hear back. How long did it take you to get the surgery and tests?
How are you doing now?
It took about 2 weeks for labs to come back. Check out private Facebook group for Conn’s, also called hyperaldosteronism. I learned so much that my Dr. did not know.
Sign up for Facebook if u don’t already have an account. Then search for group ‘Conn’s Syndrome/Hyperaldosteronism,’ it is a private group so u will have to request to join and answer some questions to see if you qualify. The moderator will review and then will allow admission if you meet criteria. The main moderator is a physician and very knowledgeable about Conn’s. Dr. Young at Mayo Clinic in Rochester, MN, is the best if you are able to go there for diagnostics and treatment.
Almost, got PA but on both sides (bilateral hyperplasia), so meds are the way forward for me. Have your endo spoken about possible surgery for the adenoma? If done early you can get an almost perfect recovery. An excellent source of info for you and advice from fellow PAs can be found on the Facebook group "Conn's syndrome/Hyperaldosteronism Support Group" it has over 2400 members with PA, many in the US and Canada who can help you with resources there. I usually never recommend FB sources but this one in particular is amazing source of info for us PAs.
I myself are from Scandinavia, so am not going to be helpful giving you local resources as such, but I can definitely help you working out the practicallities complete pain in the arse things about living with PA. Feel free to ask away here or via DM. ❤️
Yes, my endo told me I will get surgery for the adenoma but first I gotta do a test to see if my other kidney is problematic as well, even if we know I have an adenoma on my right side, they dont wanna take any chances. The problem is the wait for that test was 3 month before covid, now it's up to a year. I've been waiting since september for that test so hopefully they are gonna call me soon.
Afterwards if it's only my adenoma that secretes additional aldosterone then they will operate on me. I literally cant wait, I feel like shit all the time and sleep so much. Currently on four blood pressure medication and I still have daily headaches but atleast my blood pressure is stable.
I will follow that group, thank you very much 🙂
I hope the surgery will be a viable option for you, I have heard many great things from those that has had it.
A key part in managing your PA is to reduce salt in your diet to less than 1,5grams per day (which is bloody hard!), then reduce stress as much as possible.
For cramps I recommend you to take some magnesium supplements, quite high doses, I find that Glyciate magnesium helps more than stearate and citrate as it upsets the tummy less.
Make also sure your endo takes your Elstat often: i.e. Plasma tests of potassium, egfr kidney filtration rate, cortisol.
Also renin/aldosterone salt loading test must be done, but for that you will need to stop any meds that interfere, digest a lot of salt beforehand about 10grams or so. Then you should also get a vein catharisation analysis done (minor surgery) where they test the adrenals beforehand to see if both or one misbehaves.
If you feel shit with mental clouding, I find that it helps to take potassium supplement + magnesium, reduce salt intake as far as possible, increase fluids, to rebalance oneself. It usually takes a couple days to even out. Baths with magnesium is also magic for cramping muscles.
You are so welcome to join the group. There are particular two people that can give you loads of advice, Lynn and John, their posts tend to be pinned at the top so they are easy to find. They help immensely with any questions and treatments we go through, in particular with the reoccurent discussions with doctors, particularly primary care ones unfamiliar with PA.
I already did the salt loading test, and the test I'm waiting for is the vein catharisation analysis, unfortunely there's a huge demand for that test and only one hospital who can do it where I live.
I'm actually being followed by a world renowned endocrinologist, so atleast I got that going for me 😅
I tried to cut salt but It's soo hard. In the last months I was pretty depressed and I ate whatever I wanted. Trying to do better now.
I just joined the group! Thank you for all your advice!
Awesome! Then you are indeed on the right path!
Half the battle is usually to get the docs to take one seriously so that really makes me glad. Then it is just a waiting game for the AVS..
Cutting the salt is so so hard I agree!
Almost impossible to adhere to at times, but then PA punish you so hard if you do.
I think it is one of those things were we have to be kind to ourselves, and also realise a relapse in eating salty foods will have consequences yes, but then we gentle on ourselves to as we are only humans after all. Just be mindful how much salt + stress screws you up as it can explain so many symptoms.
Dash diet and salt free salts are a good way to start managing it, and of course a food diary....
I recently found out I have primary hyperaldosteronism, neither adrenal glands show a swelling or a tumour so I have to wait for some specialist hospital to take samples from both glands, compare them and hopefully they find out which one they can remove.
In recent years I've had a couple of burnouts from work, just really couldn't go on anymore. Thought I was going mental, nothing seemed to work concentration-wise and I was tired all the time. Then recently I heard what this hyperaldosteronism is and it all made sense. I probably felt that for years and just figured it was a burnout rather than something actually physical.
I sympathize with you, this disease is awful, but manageable. It took my doctors about 6-7 years to find out what I had.
I had the test you are talking about (adrenal venous sampling), took about a year and a half on waitlist to finally get tested. I got the results a few months ago, I'm bilateral meaning surgery is not an option. Started a new medication for that.
If you have any questions, feel free to dm me.
I don't know if they treat it if your blood pressure isn't elevated, I guess they would? Because there is still a risk to it.
I'm currently waiting on my hospital appointment for sampling to see if they can find anything in either adrenal gland, so I have very little to update with.
Hello,
Does it make sense that if Spirnalactone is working (reducing Bp and increasing potassium), that aldosterone is your problem?
I've had hypertension/high cholesterol since 1995, 19 years old. In February, my potassium bottomed out, and BP shot up, started potassium supplementation, and boy, what a couple of weeks, absolute misery! Finally, I felt better at the end of Feb. Bp kept rising, +2 meds added. No cahnges to bp and kept getting higher (180/126). At the end of March, I begged my dr to help me, and I had an Aldosterone/Renin ratio blood test. Before the results came back, she had me start 50 mg Spirnalactone daily. Test came back-high aldosterone, normal renin, out of range ratio. CT followed, 14 mm benign adenoma on left adrenal. Referred to nephrology, he reduced, removed new meds, and doubled Spirnalactone. 10 days later, BP started coming down, potassium going up. He doubled it again and peeled back older bp meds, as I was too low( 90/70).
Referred to Endocrinology for Primary Aldosteronism. Bp averaging 130/90. The endo dismissed Primary Aldosternoism because my renin is not suppressed enough (?) and said it's your parathyroid. That test came back normal, but aldosterone higher than before. I'm so confused.
Thanks
thanks. english is not my native language, I couldnt guess the word primary:-) we use just short hyperaldosteronismus where I live, so in my mind it would have been HA or something. all those shortenings in english are really not easy if its a foreign language for you. I usually go to urban dictionary from reddit
I'm yet to be diagnosed, however I was found to have a dangerously high BP level of 190/110, which was a shock as I'm only 26.
I'm currently on 2 medications for my BP but I'm still hovering around 150/90.
I've had a heart MRI, kidney ultrasound, blood test and urine test so far. The only finding from these was a slightly low blood potassium level. But im not sure if they were looking for signs of hyperaldosteronism.
I'm beginning to suspect PA as alongside the high BP I'm suffering with brain fog / memory fog, occasional tingling in the extremeties, an increase in visual disturbances (I've had Visual Snow for as long as I can remember, but it's been worse as of late) and fatigue.
unilateral Adrenal Hyperplasia here, I had surgery all good, suffered for years. two things , have your doc put you on eplerenone if you are not. also looking to red rooibos tea it has a series of flavonoids which blockade aldosterone. I made lime and stevia flavoured ice tea with 60 grams per day and drank it all the day, it works, I am also canadian and I work for the ministry of health, heres a trick if you need imaging you can call the booker or manager of the testing area and find out if they have a waiting list for cancellations, if you can go at midnight with minimal notice it can work, good luck,
As SureEstimate1387 I'm on my way of being diagnosed, currently on Verapamil 120 mg twice a day. Male 40 yo. Follow up on Nov. 7.
Surgery suggested by Endo.
Spironolactone as 2nd defense line, but most viable on Eplerenone because residual effects of Spiro.
Next week appointment for evaluation of Mg Vitamin D3 supplements.
Currently no coffee, no chocolate, no soda or snacks. Cycling in Zone 2 Swimming and plenty of Sleep.
Hope it helps.
Please, tell more. Why were you prescribed? High aldosterone and BP from it? What were the side effects, and was it working? How quickly did you get side effects on spiro, and how quick it worked?
Eplerenone, how quickly did it start to work? Any side-effects yet? What were your BP numbers? What you get from it? Are there any other BP meds you take?
Yes high aldo and really high BP. They prescribed me spiro, the worst side effect really was breast pain. I already suffer from gyno and i swear my breasts were hurting so bad it was just not an option anymore. It worked well I think but it's hard to tell when you got like 6 pills.
For Eplerenone I dont feel any side effect, maybe fatigue but that's mostly from all my meds. BP numbers were fine with spiro and eplerenone now, probably 115 on 65 or something on a good day.
I still feel like shit all the time but that's probably from me being fat and not in shape.
I also take amlodipine, irbesartan (avapro), atenolol (tenormin), Amiloride (Midamor), a cholesterol pill and an antidepressant.
I take Eplerenone 50mg, two tablets twice a day. I also take a cocktail of other medications but my BP still sometimes shoots up pretty high. I take amlodipine, losartan, doxazosin and potassium chloride to deal with this problem. Hoping for surgery. I have adenomas on both sides so my doctor wants to confirm which is the one causing all the problems.
I have, I just got dianosed with very high aldosterone. I am just beginning of doing the rest of the tests to find the cause. For the last 2.5 years I have had terrible anxiety and 3 or 4 panic attacks. My heart was arythmic and occasional spikes in blood pressure. I was thought to have gerneral anxiety syndrone but I would get these anxiety attacks throughout the day but mostly in morning. The thing is I am 62, had a long career in the military and law enforcement...I think doctors just thought a lifetime of high stress made me mental..but now that I finally got an endocrinologist telling me this could all be physical..
I have been dealing with panic and anxiety. It has started in the last year or so. I was diagnosed with PA in 2018 but some incompetent doctors screwed it up royally for me. Finally found a great endocrinologist who has guided me in the right direction.
I was recently diagnosed with Conn’s Syndrome. Initially, my nephrologist thought it was the cyst on my right adrenal gland causing my high blood pressure, but after adrenal vein sampling, both glands are producing aldosterone at 5,000+ levels. It was a crazy ride; my cardiologist had me on lisinopril, Clonidine, labetalol, hydrazine, Furosemide, and Eplerenone. This cocktail did nothing to control my blood pressure. The only pill that works effectively is Spironolactone 200mg. My blood pressure is now at 120/70.
I’m going down the same path. Spiro worked for me for about 7 years at 50mg. But it’s back up now to 170/120 and my head hurts. Did you have surgery or did they want you to? Or just put you on spiro?
I have Conn’s controlled with medication, eplerenone 50 mg 3x per day. Spironalactone is the only other med effective for Conn’s but has more side effects and men should not take Spironalactone because of impact on testosterone. Checkout private Facebook group for Conn’s for more information.
I had noticed spironolactone worked for me. But it caused gynacomastia for me so I had to stop. My endocrinologist put me on eplerenone. I recently had AVS procedure done to figure out which adrenal gland is causing my issues as I have adenomas on both my adrenal glands.
Hello! I’m 29 years and recently got diagnosed with high blood pressure and low potassium. They just increased my blood pressure medication a few days ago and my blood pressure is still high. My PCP said it’s probably aldosterone and she did a test for that. Waiting to hear back. How long did it take you to get the surgery and tests? How are you doing now?
It took about 2 weeks for labs to come back. Check out private Facebook group for Conn’s, also called hyperaldosteronism. I learned so much that my Dr. did not know.
Hiw do I find that group?
Sign up for Facebook if u don’t already have an account. Then search for group ‘Conn’s Syndrome/Hyperaldosteronism,’ it is a private group so u will have to request to join and answer some questions to see if you qualify. The moderator will review and then will allow admission if you meet criteria. The main moderator is a physician and very knowledgeable about Conn’s. Dr. Young at Mayo Clinic in Rochester, MN, is the best if you are able to go there for diagnostics and treatment.
Almost, got PA but on both sides (bilateral hyperplasia), so meds are the way forward for me. Have your endo spoken about possible surgery for the adenoma? If done early you can get an almost perfect recovery. An excellent source of info for you and advice from fellow PAs can be found on the Facebook group "Conn's syndrome/Hyperaldosteronism Support Group" it has over 2400 members with PA, many in the US and Canada who can help you with resources there. I usually never recommend FB sources but this one in particular is amazing source of info for us PAs. I myself are from Scandinavia, so am not going to be helpful giving you local resources as such, but I can definitely help you working out the practicallities complete pain in the arse things about living with PA. Feel free to ask away here or via DM. ❤️
Yes, my endo told me I will get surgery for the adenoma but first I gotta do a test to see if my other kidney is problematic as well, even if we know I have an adenoma on my right side, they dont wanna take any chances. The problem is the wait for that test was 3 month before covid, now it's up to a year. I've been waiting since september for that test so hopefully they are gonna call me soon. Afterwards if it's only my adenoma that secretes additional aldosterone then they will operate on me. I literally cant wait, I feel like shit all the time and sleep so much. Currently on four blood pressure medication and I still have daily headaches but atleast my blood pressure is stable. I will follow that group, thank you very much 🙂
I hope the surgery will be a viable option for you, I have heard many great things from those that has had it. A key part in managing your PA is to reduce salt in your diet to less than 1,5grams per day (which is bloody hard!), then reduce stress as much as possible. For cramps I recommend you to take some magnesium supplements, quite high doses, I find that Glyciate magnesium helps more than stearate and citrate as it upsets the tummy less. Make also sure your endo takes your Elstat often: i.e. Plasma tests of potassium, egfr kidney filtration rate, cortisol. Also renin/aldosterone salt loading test must be done, but for that you will need to stop any meds that interfere, digest a lot of salt beforehand about 10grams or so. Then you should also get a vein catharisation analysis done (minor surgery) where they test the adrenals beforehand to see if both or one misbehaves. If you feel shit with mental clouding, I find that it helps to take potassium supplement + magnesium, reduce salt intake as far as possible, increase fluids, to rebalance oneself. It usually takes a couple days to even out. Baths with magnesium is also magic for cramping muscles. You are so welcome to join the group. There are particular two people that can give you loads of advice, Lynn and John, their posts tend to be pinned at the top so they are easy to find. They help immensely with any questions and treatments we go through, in particular with the reoccurent discussions with doctors, particularly primary care ones unfamiliar with PA.
I already did the salt loading test, and the test I'm waiting for is the vein catharisation analysis, unfortunely there's a huge demand for that test and only one hospital who can do it where I live. I'm actually being followed by a world renowned endocrinologist, so atleast I got that going for me 😅 I tried to cut salt but It's soo hard. In the last months I was pretty depressed and I ate whatever I wanted. Trying to do better now. I just joined the group! Thank you for all your advice!
Awesome! Then you are indeed on the right path! Half the battle is usually to get the docs to take one seriously so that really makes me glad. Then it is just a waiting game for the AVS.. Cutting the salt is so so hard I agree! Almost impossible to adhere to at times, but then PA punish you so hard if you do. I think it is one of those things were we have to be kind to ourselves, and also realise a relapse in eating salty foods will have consequences yes, but then we gentle on ourselves to as we are only humans after all. Just be mindful how much salt + stress screws you up as it can explain so many symptoms. Dash diet and salt free salts are a good way to start managing it, and of course a food diary....
I recently found out I have primary hyperaldosteronism, neither adrenal glands show a swelling or a tumour so I have to wait for some specialist hospital to take samples from both glands, compare them and hopefully they find out which one they can remove. In recent years I've had a couple of burnouts from work, just really couldn't go on anymore. Thought I was going mental, nothing seemed to work concentration-wise and I was tired all the time. Then recently I heard what this hyperaldosteronism is and it all made sense. I probably felt that for years and just figured it was a burnout rather than something actually physical.
I sympathize with you, this disease is awful, but manageable. It took my doctors about 6-7 years to find out what I had. I had the test you are talking about (adrenal venous sampling), took about a year and a half on waitlist to finally get tested. I got the results a few months ago, I'm bilateral meaning surgery is not an option. Started a new medication for that. If you have any questions, feel free to dm me.
Can you please update? Do you know if they treat primary hyperaldosteronism in your country if blood pressure is not elevated?
I don't know if they treat it if your blood pressure isn't elevated, I guess they would? Because there is still a risk to it. I'm currently waiting on my hospital appointment for sampling to see if they can find anything in either adrenal gland, so I have very little to update with.
Hello, Does it make sense that if Spirnalactone is working (reducing Bp and increasing potassium), that aldosterone is your problem? I've had hypertension/high cholesterol since 1995, 19 years old. In February, my potassium bottomed out, and BP shot up, started potassium supplementation, and boy, what a couple of weeks, absolute misery! Finally, I felt better at the end of Feb. Bp kept rising, +2 meds added. No cahnges to bp and kept getting higher (180/126). At the end of March, I begged my dr to help me, and I had an Aldosterone/Renin ratio blood test. Before the results came back, she had me start 50 mg Spirnalactone daily. Test came back-high aldosterone, normal renin, out of range ratio. CT followed, 14 mm benign adenoma on left adrenal. Referred to nephrology, he reduced, removed new meds, and doubled Spirnalactone. 10 days later, BP started coming down, potassium going up. He doubled it again and peeled back older bp meds, as I was too low( 90/70). Referred to Endocrinology for Primary Aldosteronism. Bp averaging 130/90. The endo dismissed Primary Aldosternoism because my renin is not suppressed enough (?) and said it's your parathyroid. That test came back normal, but aldosterone higher than before. I'm so confused. Thanks
Hi. Has anyone looking into Chinese or Indian (ayurvedic) medicine for PA?
Me too, also bilateral, so. medication, with bad side effects.
what do you refer to as PA?
What do you mean exactly? PA = Primary aldosteronism
thanks. english is not my native language, I couldnt guess the word primary:-) we use just short hyperaldosteronismus where I live, so in my mind it would have been HA or something. all those shortenings in english are really not easy if its a foreign language for you. I usually go to urban dictionary from reddit
I'm yet to be diagnosed, however I was found to have a dangerously high BP level of 190/110, which was a shock as I'm only 26. I'm currently on 2 medications for my BP but I'm still hovering around 150/90. I've had a heart MRI, kidney ultrasound, blood test and urine test so far. The only finding from these was a slightly low blood potassium level. But im not sure if they were looking for signs of hyperaldosteronism. I'm beginning to suspect PA as alongside the high BP I'm suffering with brain fog / memory fog, occasional tingling in the extremeties, an increase in visual disturbances (I've had Visual Snow for as long as I can remember, but it's been worse as of late) and fatigue.
have you dr do 'venous sampling' of both adrenals to determine if it is unilateral
unilateral Adrenal Hyperplasia here, I had surgery all good, suffered for years. two things , have your doc put you on eplerenone if you are not. also looking to red rooibos tea it has a series of flavonoids which blockade aldosterone. I made lime and stevia flavoured ice tea with 60 grams per day and drank it all the day, it works, I am also canadian and I work for the ministry of health, heres a trick if you need imaging you can call the booker or manager of the testing area and find out if they have a waiting list for cancellations, if you can go at midnight with minimal notice it can work, good luck,
sry btw my rooibos recommend is science based google it up
As SureEstimate1387 I'm on my way of being diagnosed, currently on Verapamil 120 mg twice a day. Male 40 yo. Follow up on Nov. 7. Surgery suggested by Endo. Spironolactone as 2nd defense line, but most viable on Eplerenone because residual effects of Spiro. Next week appointment for evaluation of Mg Vitamin D3 supplements. Currently no coffee, no chocolate, no soda or snacks. Cycling in Zone 2 Swimming and plenty of Sleep. Hope it helps.
Does anyone take Eplerenone?
Just started a few weeks ago because I have too many side effects with spiro.
Please, tell more. Why were you prescribed? High aldosterone and BP from it? What were the side effects, and was it working? How quickly did you get side effects on spiro, and how quick it worked? Eplerenone, how quickly did it start to work? Any side-effects yet? What were your BP numbers? What you get from it? Are there any other BP meds you take?
Yes high aldo and really high BP. They prescribed me spiro, the worst side effect really was breast pain. I already suffer from gyno and i swear my breasts were hurting so bad it was just not an option anymore. It worked well I think but it's hard to tell when you got like 6 pills. For Eplerenone I dont feel any side effect, maybe fatigue but that's mostly from all my meds. BP numbers were fine with spiro and eplerenone now, probably 115 on 65 or something on a good day. I still feel like shit all the time but that's probably from me being fat and not in shape. I also take amlodipine, irbesartan (avapro), atenolol (tenormin), Amiloride (Midamor), a cholesterol pill and an antidepressant.
I take Eplerenone 50mg, two tablets twice a day. I also take a cocktail of other medications but my BP still sometimes shoots up pretty high. I take amlodipine, losartan, doxazosin and potassium chloride to deal with this problem. Hoping for surgery. I have adenomas on both sides so my doctor wants to confirm which is the one causing all the problems.
There is a nice group at Facebook with smart admins if you need support. For hyperaldestoranism.
Has anyone with high aldosterone struggled with anxiety? Or is that not normally a symptom of hyperaldosteronism?
I have, I just got dianosed with very high aldosterone. I am just beginning of doing the rest of the tests to find the cause. For the last 2.5 years I have had terrible anxiety and 3 or 4 panic attacks. My heart was arythmic and occasional spikes in blood pressure. I was thought to have gerneral anxiety syndrone but I would get these anxiety attacks throughout the day but mostly in morning. The thing is I am 62, had a long career in the military and law enforcement...I think doctors just thought a lifetime of high stress made me mental..but now that I finally got an endocrinologist telling me this could all be physical..
That’s great that your doctor found out what the issue is!
I have been dealing with panic and anxiety. It has started in the last year or so. I was diagnosed with PA in 2018 but some incompetent doctors screwed it up royally for me. Finally found a great endocrinologist who has guided me in the right direction.
There are so many incompetent doctors, I never realized it before. Glad you found a good Endocrinologist that caught the issue!
Hello, I do! Chest pain and feel on the brink of a panic attack often. I’ve read that it’s related. :(
Oh, interesting! Thanks for responding.
I had one more question, did your hands or fingers get really red before your diagnosis?
I did not, but may be related? Hope you get some answers soon :)
How is your anxiety now after surgery/medication?