GRA primary Aldosteronism

[Guest guest]

Does anyone in the group have a confirmed genetic form of primary aldosteronism?

My endo is sending off my test kit today to rule out GRA. He tested due to a

negative CT Scan, and suppressed aldosterone to under 4 during a DST test at my

old endo. The other endo was ruling out Cushings, but had aldosterone measured

as well.

According to my endo, if aldosterone suppresses to under 4 during a DST

(dexamethasone suppression test), it is generally indicative of GRA. A study

online states a 96% sensitivity. My cortisol was suppressed to 0.06. Not sure

if that is significant.

How does the treatment of PA change if I am positive for GRA? Bottom line is I

want to know if I should be hoping for a positive or negative result. It can

take up to 10 weeks to get the test results. I think they have to send it away

to process. My paperwork mentioned something about Yale that I signed for the

testing.

My mom died at 59 of sudden cardiac death and had high blood pressure from the

age of 20. She was never tested for PA, and did not see an endocrinologist as

her primary care doctor treated her type II diabetes. She was on 5 blood

pressure meds when she died and her blood pressure at her last office visit 2

days before she died was 212/124. I remember her telling me this and begging

her to go to the hospital. I remember her telling me it sometimes gets that

high and the doctor knows about it.

Any way, to wrap this up I am still unsure of what a positive GRA test would

mean. So far 50mg of Spiro has been working very well! My blood pressure has

averaged 115/81 on my home readings! I have energy and I am starting to act

like a man in my 30s. I guess GRA would mean no surgery. However, I am still

thinking that I don't have GRA since Spiro is working well. However, I am not a

doctor and have no idea why I think that.

Anyone with GRA out there who wishes to share your experience with me?

Thanks,

34yo male. Diagnosed 04/11. 50mg Spiro (25mg twice per day). Negative CT

(although lumpiness left side). Currently being tested for GRA. AVS test

recommended next if GRA negative.