Elevated Aldosterone

[DoozlyGirl]

Good evening all,

I could really use some help and would appreciate any thoughts, guidance and direction. I'm wondering if anyone with autonomic neuropathy also has elevated Aldosterone? I've read through past posts on Aldosterone and researched online, but not sure if/how my autonomic neuropathy(sudomotor and cadiovascular) is in play here. I've found information/posts regarding low aldosterone and Adrenal Insufficiency or POTS, but not high Aldo and AN. I've also seen posts with really high (>1000)aldosterone, who've later been diagnosed with adrenal tumor, but uncertain if my mildly elevated values are possible tumor/adrenal hyperplasia or just my ANS playing havoc again with my body chemistry. Would love to hear if anyone has had similar experience.

12/09 Aldosterone = 40.1 @baseline & 39.8 @30 min after ACTH stim (normal=1.0-16.0). Renin = 1.6 & Aldo/renin ratio = 25.5 @baseline and 24.8 @30 min post ACTH Stim

5/11 Aldosterone = 26 (not sure why no Renin)

6/11 Aldosterone = 11.4 + Renin = 0.4 for a 28.5 ald/renin ratio.

I struggle with wide swings in BP, which is definitely positional. Low normal BP(110/70)upon wakening while laying on back, high while sitting (140-150/90-100 or higher) and dropping BP upon standing, which has already been diagnosed as significant orthostatic hypotension on TTT. Last week, I figured out my BP also swings depending on which side I am laying on. Left side (low normal), same as laying on my back and right side is elevated (high) as if I were sitting. Have had negative blood and urine (catecholamines and metenephrines) workups for pheochromocytoma twice in the past, but previously never tested during episode.

I am seeeing an new endo who is working me up for several possibilities. I definitely have my own suspicians, and I hope someone here may have some thoughts. My new endo is starting with 21 different tests in blood, urine and saliva, including urine catacholamines and metenephrines that were collected during episodes.

I really appreciate your time and input. Thanks.

[HopeSprings]

I had one high aldosterone reading. It was 23.1 - the reference range was 1-16. When retested, it was normal. I don't know if it means anything. Let us know what you discover.

[sue1234]

Mine was low, but I learned something new--I did not know they could test aldosterone's response to an ACTH test!! That is a new one to me! What kind of doctor ordered that?

It sounds like you are going to have a very thorough work-up coming up. That's great! Just see if they can include a CT scan to check for an aldosterona. *aldosteronoma*

[sue1234]

Let me correct myself--aldosteronoma. When I incorrectly spelled it in my above post, the spelling kept nagging at me, like I kept thinking this doesn't look right. I figured it out.

[DoozlyGirl]

Just like many of you, I have taken a convoluted path to get my current ANS diagnoses, but some things just don't seem to line up.

Mid 2009, my primary and I both were very suspicious of pheo, but my urine and blood catecholamines and plasma metenepherines were normal. After a trip to the ED in November with very high BP, severe headache and typical signs of sympathetic overdrive, I was thrilled to find an endo who saw me the next day and begin a comprehensive biochemical work up, leading to the ACTH Stim with Aldo and Renin. Her work-up didn't provide any show-stopping results, and after a normal pituitary MRI, she ruled out Cushings, couldn't biochemically find the pheo, and determined my HPA was intact. By then, my BP/HR issues lead to my autonomic work-up, diagnosis of AN and referral to my neurologist. Since my BP issues are ongoing, I have circled back to HP issues, then found my elevated Aldo and Renin results from 2009. I was fortunate to find a recent Mayo-trained Endo in my network who is now ruling out endocrine/neuroendocrine cause of my BP issues.

Sue, for years, I've been suspicious of a hormone secreting tumor, but looks like we may have have focussed on the wrong hormones, huh? Hopefully, these 2 elevated Aldo/renin ratios will lead to an aldo supression test and CT. Fingers are crossed, and my printed research is ready for my follow up appointment in a few weeks. I have had an odd 'churning' on my right side near the kidneys for years, which even lead to a misdiagnosis of kidney infection in the past (treated with antibiotics before cultures came back normal), and haven't had an abdomenal CT in years.

I could really use a solid lead right now to at least mitigate some of my daily symptoms. Thanks for the responses, Naomi and Sue.

Lyn

[sue1234]

Lyn,

Your story sounds alot like mine. I keep swinging back into the endocrine loop, too, looking for that elusive pheo possibility, or at least SOMETHING going on with the adrenals. It could be cortisol issues, also, with me. Just waiting for the biochemical tests to show up. I have the symptoms and the growths.

[DoozlyGirl]

Sue,

I have definitely picked up on our similarities, read your posts with great interest. Even ran across some of your posts on a pheo support board. I'm on my way out the door now, but would love to hear more details about your journey. Look forward to learning more about your experiences.

Lyn

[sue1234]

Oh yea, I've been on the pheo support board probably a little longer than here! That was the second thing that I suspected when I became lightheaded. My first was Addisons. That's how I got my first CT scan, by asking the doctor about a possibility of a pheo. I had all the symptoms.

Now I am somewhat different than you in that I've had a low aldosterone, along with one normal.

All I know was I started out lightheaded AND full of adrenaline, even while sitting. Of course, it all gets way worse with standing.

Then, on the pheo board I learned that pheos cause lower blood volume. And, that really got me to thinking. It makes sense that as the b/p goes up, the body thinks it is too high then asks your adrenals to lower the aldosterone output to lower the volume. Then, you end up in a vicious circle--high b/p, lowered aldosterone, lowered blood volume, calling for higher b/p, etc....

The only symptom I do not have related to pheo is the headache. I get everything else but that. Tumors(small) and all.