[samuraixp]

Wow, super happy for you. Just to add to this I will say that I was mis-diagnosed with an adrenal lesion which turned out to be incidentaloma. I had an adrenal gland removed however the treatment was non curative.

At the time I asked why they weren't suggesting adrenal venous sampling and was looked at like I was an idiot by the resident doctor. Turns out she was the idiot. A specialist later told me they were probably too unskilled to do the adrenal sampling.

Also the cyp11 b1/b2 PCR test has existed for ages and is in the literature. Years later I had some DNA testing and discovered I have an even rarer version of PA called Familial Type 1 caused by a non stop mutation on CYP11b1/b2, hence why the adrenalectomy did nothing.

While its rarer, the test is only a few hundred dollars. To others... a pro tip: get a pre-genetic screening test even if you aren't having kids, the cost is cheap and the result might be life changing to you TODAY.

I feel an order of magnitude better since silencing the over production of that hormone and my doctor tells me that anecdotally practitioners report patients coming out of curative surgery for nodules or on dexamethasone for type 1 often report feeling like a cloud is lifted from their mind.... I can confirm this is true.

Sadly you really do need to, push, research and be your own advocate to get the best outcomes.

[aantix]

What an amazing story - thank you for sharing.

Is there any specific type/brand of DNA testing you utilized?