Low aldosterone URGENT ADVICE NEEDED

Hormones
1

hi new to forum, can anyone connect me with someone else with

...low aldosterone results..

(these are isolated i.e. no coresponding high renin , normal cortisone)..

...someone with hypOaldersterone ?

or someone with

...Cerebral Salt Wasting Syndrome ?

i have done research on line and found NO ONE ELSE with this ...

i need help as i am dealing with a dis believing GP  and a endocrynologist who has let my complex Nuerology history get in the way of prescribing Needed Flurinef for longer than two weeks  .  

2

sent you a email 

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The symptoms you describe sounds like  mine and I have been  diagnosed as  Conns syndrome. I have a benign growth on my adrenal gland and I take Spironolectone in tablet form.   Ask your doctor for a scan on your stomach.   Kind Regards

4

thank you will do

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thank you have done

6

i have opposite to this.... low aldosterone.... hypo not hyper aldosterone 

but thanks for reply 

good luck 

7

I'm definitely not a doctor, but I have a rare form of CAH and I'm not exactly sure what our cases have in common. Ask you doctor to check you DHEA and DHEAS levels. I just remember that years ago when I was diagnosed my doctor had to add these to the list because they are so rarely checked. The form of CAH that I have is called 3 beta hydroxy steroid dehydrogenese... Good luck! If you have anymore questions I can see if maybe I can answer them. I hope this will help with your situation.

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Jennifer

Thank.you for reply...it is reassuring someone's out there!

Did you test for just low aldosterone, with everything else normal?

I found your symptoms but they don't seem to match mine.

I am dealing with a very abrupt consultant who blames two sets of definite results on "your diet" "must be something else"... "no other tests I can do for you " when all I've had are basic bloods and these two "on ice" ones that showed isolated very low aldosterone.

If he does not help me with more tests (saliva are more accurate?) I will have to ask for a second opinion...

I am seriously ill daily but especially seriously.... after what should be routine neuro surgeries..

And have daily Extremely Low blood pressure 75 over 49! (half steroid dose hasn't even touched it)

Good luck with yours gives me hope that you are being helped.

Pj

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No problem... I know what it's like to feel like the alone weirdo. Lol

Ask for those tests because if your levels are crazy off then it will give them something to work with. Bring a notebook with symptoms and questions (I always forget 90% of what I wanted to talk about when I get put on the spot). And NEVER be afraid to stay and talk about whatever you think necessary. My boyfriend told me, "you're paying them, not the other way around." And it's sooooo true. If they act like they don't want to talk to you or you're wasting their time then f*** them and go to someone else.

I was sent from doctor to doctor and they would all say my levels were normal until we found a doctor that was passionate about his patients. When he finally tested the right chemicals it was like, "holy s***! We need to get this girl on meds before she gets older and has permanent damage!"

Rest assured that I am such a rare case that doctors are pumped up to study me, so they WILL figure out what is wrong with you. Don't lose hope and good luck!

P.S. I am now leading a completely normal life and I know you can get there too.

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Thanks Jennifer

I will take this good advice

Thank goodness you came through it all

And if only my Dr would think himself lucky to have rare results instead of dismissing them.

I said.... if it looks like a horse nieghs like a horse and tests prove it's a horse... Why aren't you seeing a f***ing horse? Ha haha

Thanks good luck

pj

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Haha! No problem... you got this!

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Hi!  I have low aldosterone as well; renin and cortisol normal on blood tests.  Nephrologist says it's fine, but I know it's not.  I wake almost every night with a headache that is relieved by drinking a glass or so of water.  Not conducive to going back to sleep!  I eat plenty of salt, but I know I still have a degree of dehydration.  I drink about 3/4 - 1 gallon of water per day.  I have tried to drink most of it before 5:00 or 6:00 p.m., so at least I won't have to get up in the middle of the night to go to the bathroom.  However, then I can't make it through the night without becoming dehydrated.  So I have started to eat a bowl of salty popcorn before I go to bed and make sure to have a glass of water with it.  It's a little early to tell, but I have been headache free for 3-4 nights out of 5-6.  I think I'm on the right track.  I'm not seriously ill, but definitely have some things going on that most M.D.'s are not well versed in.  I have not had time to look up Cerebral Salt Wasting Syndrome, but I will soon.  Write me back with more of your info, or let me know if you have any questions. 

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I have hypoaldosteronism and am a salt waster. How low is your aldosterone? What symptoms are you having?

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My son has this !!!!! We havnt found any one with this either I'm in shock

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My son has a salt wasting disease

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Hi, plj,

I have isolated hyporeninemic hypoaldosteronism.  It's nasty.  You can't take florinef for just 2 weeks and then stop it.  Your body can't even adjusst to it in 2 weeks.  I've been on it for a year and it took 6 weeks to 2 months for it to control my condition.  This is RARE.  Most endocrinologists or nephrologists see people with HYPER not Hypo aldosterone problems.  You need to start monitoring your urine output and fluid intake 24/7 to make sure you stay balanced.  If you pee too much and get dehydrated, that can cause other problems.  You lose sodium in your pee (salt wasting) and if you get out of balance your blood pressure and heart rate will get out of balance too!  Start monitoring your blood pressure and heart rate too. You need to establish a baseline.  Find a doc who will work with you and get the meds going.  Good luck.

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Get an endocrinologist and have him tested for cortisol and aldosterone.  Blood test panel to tell you his vitals including sodium.  Hypoaldosteronism can be accompanied with salt wasting.  You should start monitoring fluid intake and urine output 24/7 and keep the two balanced. Monitor blood pressure and heart rate to get a baseline.  Salt wasting can cause another type of dehydration called hypovolemia.  You need a baseline so that you can tell when this kicks in and react quickly to the symptoms.  It won't be easy.  I've been doing this for a year now.  Good luck!