Self-diagnosis of PA using the Internet

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Dr. Grim,I'm not sure if you want this testimonial of my experience here or it I'm supposed to post it somewhere in the files, but here it is.Self-diagnosis of PA using the InternetI had had HTN for 23 years and low potassium for most, if not all, of that time. No doctor could ever give me a reason for the low k. Then a little over 2 years ago, after a prolonged period of extreme stress, my BP shot into the stratosphere reaching 226/106 and perhaps higher.My Nurse Practitioner had me on BP meds but sent me to the Kaiser Blood Pressure Clinic, which specializes in treating BP. Nothing they gave me did the least thing to bring the pressure down. Simultaneously they had me on Hydralazine 100mg, Doxazosin 4mg, Atenolol 25mg, Cozaar 100mg and Hydrochlorothiazide 12.5mg.Kaiser has electronic record keeping, so the information about me taking 80 mEq K and still only having a k reading of 3.8

was right there for them to see, but it meant nothing to them.The thing that sent me to the Internet, to try and find out what was wrong with me, was going to my NP with flank pain. She diagnosed a pulled muscle. I absolutely knew it wasn't a pulled muscle, so I went to the Internet and Googled what I saw as my main problem: causes of hypertension. That led me to reading all sorts of papers and one line, in one paper, said that if you have hypertension that is difficult to control with BP meds AND low potassium you must check the patients aldosterone level for Conn's Syndrome.That one line was the opening of the door for me. Googling Conn's led me to the NORD (National Organization of Rare Disorders), and in reading their letters from people who had Conn's I found they had all the symptoms I'd been having but didn't know were connected: High BP where medications didn't work, brain fog, tachycardia, headaches, flank pain, shortness of

breath (unrelated to exercise), leg cramps, periods of paralysis, tiredness, cold all the time, no sweating, night time adrenalin rushes (anxiety), muscular pain the the shoulders and chest and getting up many times a night to pee.I then knew that I probably had Conn's Syndrome and asked my NP for an aldosterone test. She absolutely didn't want to give me the test, but did relent and order it. However if I hadn't demanded the test it would not have happened. The test came back with a high aldosterone reading and she contritely sent me to an endocrinologist who ordered a renin test (came back very low) and a CT scan which confirmed bi-lateral adenomas (1.2cm left and 1.0 cm right).During this time I found Dr. Grim's group then got on Spironolactone and with Dr. Grim's urging I went on the DASH diet. Now it's about 1.5 years later and my BP was 126/69 this morning, I take 75mg of Spiro and 37.5mg of Atenolol. All those symptoms listed

above are gone now unless I don't meet my k requirements, in which case I will get leg/foot cramps to help me remember. To this day no doctor, with the exception of Dr. Grim, has ever talked to me about the importance of a low Na diet in controlling PA and it is a critical part of living with this syndrome.Dianne -F-69