@irvkay312 I thank you for all your help. I agree with you. Your knowledge is gold!!

I have a tumor in my adrenal gland which depletes my sodium and potassium. I would have bet a million dollars that was why I have so many horrible cramps. I went to the ER after I passed out, very weak, could hardle hold my head up, positive they would give me fluids increase my potassium & I'd be good again. However all levels normal. They can not figure out why. I see a specialist next week.

@dawn_giacabazi, perhaps my experience can be helpful to you. For treatment of my hypertension, I was referred to a nephrologist who works with unimaginable attention to detail and basic causes. She puzzled, as you have, about normal lab results yet episodes of potassium deficiency causing cramps and occasional fainting during heavy exercise. She enlisted the help of an endocrinologist to examine relevant hormones. Together, they figured out a lot of things.

A growth on my kidney was suspected of being a pheochromocytoma that manufactures excess adrenal hormones, but that couldn't be confirmed, partly because the growth wasn't located in my adrenal gland. Also, my problem was not excess adrenalin components, but appeared to be hyperaldosteronism, although the endocrinologist couldn't confirm that. The ultimate diagnosis was Liddle Syndrome, a genetic mutation of the kidney that fails to reclaim potassium being sloughed off with sodium during cleaning of my blood. A potassium-sparing diuretic (Amiloride) has alleviated my problems but has not resolved them completely. I found some basic information on pheochromocytoma at this address: http://www.mayoclinic.org/diseases-conditions/pheochromocytoma/basics/causes/con-20030435. This suggests what I obtained from the ranks of specialists -- a nephrologist working with an endocrinologist looking for a root cause (brainlesslessly called "secondary cause").

I hope you find something of relevance in my experience. I know from following you that you are relentless in searching for answers -- not only for yourself, but for all of us gathered here on the Mayo Connect to share information and experiences. Best wishes for success with your specialist next week.
Martin

@predictable A man after my own heart!! My diagnosis is secondary hyperaldosteronism. My levels of both Aldosterone & Renin are very high. My nephrologist started me on Aldactone in Sept and I finally hit therapeutic levels last month. Apparently I am a very slow metabolizer of aldactone. (Genetic testing).. Normally Aldactone drives up potassium but for some reason they are trying to figure out it does not in me. I currently take hydralazine, labetalol, nifedipine, chlorthalidone, & spironolactone to keep my blood pressures down. I was admited to St. Mary's Rochester Mayo's in Sept with blood pressures 300/208. Much better today but still break through's of 200/140's .

So sorry to hear of your issues. Hope you find answers and solutions soon! God's speed!

@dawn_giacabazi, we are indeed on similar paths, but different in two important respects: Your hypertension is more challenging than mine for sure (with 3 meds, I average around 148/90 right now -- never over 160 systolic or above 106 diastolic), and I wish I could show you how to come down to my level. In my case, my likely secondary cause is known -- the Liddle Syndrome genetic mutation. My potassium deficiency was assumed for a long time to have been connected to a sodium problem, which turned out to be a dead end alley (Lasix almost sent me away for good). I also have been through Aldactone (spironolactone), Trandate (labetalol), calcium channel blockers (at least three like nifedipine), diuretics (at least four like chlorthalidone), alpha blocker (Hytrin), brain isolation drug (Clonidine), vasodilators (Minoxidil), ARBs (like Losartan) -- all part of earlier trials by primary physician, cardiologist, and two prior nephrologists (doing SOMETHING when we didn't know what to do). All seemed necessary, despite moderately high BP, because of apparent hypertrophy of the walls of my left ventricle.

Today, my three medications -- all focused on hypertension with hypokalemia -- are Amiloride (potassium-sparing diuretic), Lisinopril (working against contraction of blood vessels and heart degeneration), and Carvedilol (a relatively new beta blocker that is more friendly with the kidneys than the Atenolol I was taking). Aldactone worked well, but had to be dropped because it could have triggered cancer through a separate genetic mutation I inherited from my father.

None of my doctors mentioned pharmacogenomics (PGx). My two genetic tests were not connected to medications in any way. But it's time to bring PGx into the diagnosis process, and I'll be pressing for that with my ingenious nephrologist (whom I'm visiting next week for the first time in three years).

All of the foregoing may not be of much help or comfort for you, but I'd do anything to smooth the way toward therapies that could bring your challenges under control. Is there anything you think I could do in this regard?
Martin