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Pots / elevated Aldosteron, please help


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Hello everybody, i hope you are all doing well. You have not heard from me in a few years now but i regularly came back to read the posts.

Today i want to share my current situation hoping that someone can help. In the past 7 years my Pots got better and better to a point in which i was able to lead an "almost normal life". Of course i had good and bad days but even the bad days were managable (nothing compared to the extreme symptoms years before.). I even was able to travel to India twice (in 2017 and 2019)and was able to visit the Himalayas, something which i never thought would be possible. But through the Grace of God it happened.

All my life my blood pressure was on the higher side (when i stand up it often drops 50 points) anyway, due to Pots i didnt agree with any blood pressure medication and so we stopped them years ago (exept 1 Betablocker which i have been taking for many years now). As soon as i was off the blood pressure medication, my health slowly improved over the years.

Then at the beginning of this year after my health has been so good. My doctor and i decited to try out some blood pressure treatment again to lower my blood pressure. I felt so good and up to it, that i agreed. I was sent to a nephrologist who did some more blood work and he found out, that my Aldosteron was too high and my pottasium too low (even though i had been taking in extra pottasium daily). Anyway, he suspected that it could be Conn Syndrom (Hyperaldosteronism) and so (in order to lower the Aldosteron) he subscribed me a medication called Spironolacton.

I usually never try out medication because i often have paradox reactions and a lot of severe side effects but since i felt so good and i knew that my blood pressure was too high i honestly thought that i could handle it and so i started with a little tiny dosis of Spironolacton. To cut the long story short after a few days all my "long forgotten" worsed Pots symptoms appeared. I thought i would die, i had extreme "fits" blood pressure Spikes up to 250/150, shakes, couldnt breath, extreme dizziness and so on... I could not stand up at all anymore.

I stopped taking Spirolacton after a few weeks (back in April) and even today iam not back to my old "good" normal. I still cant stand up, i still have severe symptoms every day.

The Pots specialist i saw years ago (i live in Germany) is not available anymore. My nephrologist keeps testing my Aldesteron which is still elevated and the only medication which can lower the Aldosteron is the medication i cant tolerate.

Does anyone here know about a connection between Pots and elevated Aldosteron levels ? I dont think that the elevated Aldosteron comes from a kidney Problem. Even my nephrologist doesnt think that (kidney MRI was perfect).

My blood work could point towards Conn Syndrom but as i said both my nephrologist and myself dont think that's the case. Has anybody ever heard about a connection between Pots and Aldosteron?

Are Renin and Aldosteron activated by standing up? Maybe my high number is the result of that? With a high Aldosteron patients are also adviced to reduce salt intake drastically (opposite to Pots). I have already reduced my salt intake which makes Pots worse... I have no doctor now who can bring these 2 cases together (Pots and elevated Aldosteron). My nephrologist can only look at the kidney stuff without taking Pots into Account. He could order some more Tests (in which i would have to take medication which i dont tolerate). I hope and pray that there is some kind of explanation why Aldosteron could be high in Pots patients.

In all these past years even decades no doctor ever told me that my Aldosteron was elevated.... Iam so afraid that if we just treat the elevated Aldosteron now (with those medications my body doesnt agree with) i will be back to how i was when i tried out the medication a few months ago. This is not possible. I can not have my family to go through this again.... (every day we were so close to call the ambulance, something was really off). Thank you all for your input.

PS: iam now 49 years old, maybe menopause (hormons) can also activate Pots and/or Aldosteron? 

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Dear @carinara - I found the following article about RAAS https://www.healthrising.org/blog/2020/09/28/paradox-chronic-fatigue-syndrome-pots-renin-aldosterone/

Quote: "First, renin stimulates angiotensin II, which increases blood pressure and stimulates sodium absorption. Angiotensin II then stimulates the production of aldosterone – the main factor – which regulates blood pressure, plasma sodium and potassium levels and blood volume. (Aldosterone secretion can also be stimulated by potassium, adrenocorticotropic hormone (ACTH), and low sodium levels in the blood (hyponatremia).)" End Quote

I know that the RAAS system can be a factor in dysautonomia. 

Also - Spironolactone is a powerful diuretic that will really lower you blood volume, which in turn can bring on really bad POTS symptoms. I am surprised someone would actually give that to someone with POTS! We are so very medication sensitive and no wonder that you went into such a tailspin!!! 

I do not know why your aldosterone is high but I think it may be a reason for some of your POTS symptoms. Have you ever tried IV fluids for the flare? Weekly IV fluids are the only thing that stabilizes me at all, despite all of the meds I take. Renin, angiotensin and aldosterone have to do with regulation of your blood volume - and we all know how that ties into POTS! IV fluids improve the volume and therefore can regulate these hormones as well. When I am hypertensive and get an infusion my BP comes down immediately - when normally it should get higher with IV fluids! So you might want to suggest that to your doctor! 

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Thank you all for your input. I dont know what to do now. My nephrologist is a nice guy but never heard about POTS. My family doctor is also nice but she doesnt know much about POTS either. The POTS specialist who diagnosed me 13 years ago is not available anymore. If i go on with the nephrologist he will only treat the elevated Aldosteron with a diuretic which i cant tolerate. Should i look for another POTS specialist here in Germany and start all over again so that he can take into account every aspect? Back in 2007 when i was diagnosed with a tilt-table test, they never explored deeper. It was said that i might have hyper POTS but it was never confirmed. I was never allowed to have a high salt diet because of my high blood pressure. I have no idea if the elevated Aldosteron has something to do with POTS or not. Reading through some shared material it seems that Aldosteron is low in POTS patients. I hope and pray that i dont also have "Conn Syndrom" because the only cure there is, is the diuretic which my body cant handle. I have not monitored my blood pressure since April because it just stresses me out and there is nothing i can do about it right now anyway (My nephrologist and family doctor adviced me not to meassure my BP). 

Thank you all for your help. 

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On 10/24/2020 at 8:09 PM, Pistol said:

Dear @carinara - I found the following article about RAAS https://www.healthrising.org/blog/2020/09/28/paradox-chronic-fatigue-syndrome-pots-renin-aldosterone/

Quote: "First, renin stimulates angiotensin II, which increases blood pressure and stimulates sodium absorption. Angiotensin II then stimulates the production of aldosterone – the main factor – which regulates blood pressure, plasma sodium and potassium levels and blood volume. (Aldosterone secretion can also be stimulated by potassium, adrenocorticotropic hormone (ACTH), and low sodium levels in the blood (hyponatremia).)" End Quote

I know that the RAAS system can be a factor in dysautonomia. 

Also - Spironolactone is a powerful diuretic that will really lower you blood volume, which in turn can bring on really bad POTS symptoms. I am surprised someone would actually give that to someone with POTS! We are so very medication sensitive and no wonder that you went into such a tailspin!!! 

I do not know why your aldosterone is high but I think it may be a reason for some of your POTS symptoms. Have you ever tried IV fluids for the flare? Weekly IV fluids are the only thing that stabilizes me at all, despite all of the meds I take. Renin, angiotensin and aldosterone have to do with regulation of your blood volume - and we all know how that ties into POTS! IV fluids improve the volume and therefore can regulate these hormones as well. When I am hypertensive and get an infusion my BP comes down immediately - when normally it should get higher with IV fluids! So you might want to suggest that to your doctor! 

And the follow up to this, which I may have posted here somewhere already: 

Quote

Given the low blood volume regularly found in ME/CFS and POTS, all three factors of the RAAS system (renin, angiotensin and aldosterone) should be high.

https://www.healthrising.org/blog/2020/10/10/ras-bradykinin-covid-19-chronic-fatigue-syndrome/

I really hope a doctor who wasn't up to date on all this didn't unnecessarily screw you up. And if they did, I hope it can be easily reversed. 

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I'm just going to throw this out there -- perhaps they need to redo the aldosterone if they haven't. There are pretest requirements for an accurate reading. The values can vary depending on things like your salt intake before the test. Also, you don't say how high it is. Is it just over baseline, or really high?

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When my Aldosteron was tested for the first time back in March (blood test) it was a bit over baseline around 400. When it was tested in June it was also a bit over baseline (24 hour urine). When it was tested 2 weeks ago (blood test) it was over 1000 which is very high. The doctor even wondered if it might have been an error and so we repeated the test with a 24 hour urin again. I will have to wait until next week for the results. 

I started cut my salt intake back in March and since then, i eat less then 2g Salt a day. I thought it would help to reduce my blood pressure. I dont know if less salt increases or decreases Aldosteron levels. 

I also noticed that the Aldosteron was tested just 1 day before and 1 day after my period which might also affect Aldosteron levels. 

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