Before Diagnosis
After the birth of my second child (I am 33 years old), my blood pressure was an average read of 170/100 on a daily basis. I had never experienced hypertension before, including after my first child. My primary care doctor at the time prescribed me a beta blocker, and attributed my hypertension to my stressing job at a hedge fund. I tried to explain many times that I ate right and exercised, and that the numbers did not make sense. I wanted to figure out the problem instead of throwing medication at it, but my physician did not listen to my concerns, and insisted I take the medicine. I was hesitant, but after some time, I gave it a try to see if it would help. It did not lower my blood pressure, and my physician then prescribed a calcium channel blocker. Still nothing worked. A few years went by and we added some more medications. A potassium supplement and a water pill. My numbers were still reading 140/90s. All the while, I was feeling side effects from these medications, and many symptoms which at the time I did not know were caused by hyperaldosteronism. To name a few, they ranged from swelling in the legs to anxiety, mood swings, depression, insomnia, low sex drive, brain fog, fluttery heart, vision issues, and fatigue. I just continued to live and take the medicine.
Diagnosis
Fast forward to summer of 2022, one night I felt a pain in my lower left side. I knew something was not right and I needed to go to the hospital right away. I was debating the one I usually go to, Centrastate, or Hackensack. I chose Hackensack. After some scans, the images showed that I had a kidney stone. There were a number of things the scan showed, such as a growth above the kidney. At the hospital, I was also treated for high blood pressure and low potassium. These were all symptoms I was familiar with because I had the same episode happen several years earlier at Centrastate. Centrastate discharged me and told me to see my primary care doctor. Hackensack discharged me and told me to see a specialist and my primary care. That is when I received my first referral to an endocrinologist — Dr. Sulay Shah.
About a week later, I made my appointment, and I remember my meeting with Dr. Shah was pleasant, friendly and concise. He asked me a series of specific questions about my history with potassium and high blood pressure along with family health history. I felt he really listened to me. He immediately asked me why I took so many medications, said it was not right, and that we would get to the bottom of it. Wow! Did he just say that? By the end of our initial meeting, he suspected I had something called primary aldosteronism or Conn’s disease — something I had never heard of. He warned me that he needed lots of blood from me. Like a vampire. I laughed but I knew it was necessary in order to have a proper diagnosis.
I had never heard of primary aldosteronism but when I looked it up, I was shocked to see I had every symptom. Headaches, thirst, uncontrollable high blood pressure, low potassium, numbness, etc. It was textbook, and my previous endocrinologist and primary care doctor had missed it for all that time. I really could not believe how long I went undiagnosed, and upon meeting me, he already had a theory. The breadth of knowledge he had on this topic was vast. He explained to me fully so that I could easily understand. I also felt he listened and answered any and all questions I had. He outlined next steps such as a series of blood tests and adrenal vein sampling as well as the surgery itself. I really want to credit his expertise, persistence, professionalism, collaboration with other doctors, and mainly his humanity. He is so caring. I could not have asked for a better doctor.
Scheduling the AVS was a difficult time because as my endocrinologist would say it is not every radiologist’s cup of tea. He was right because it took me several months to obtain an appointment. I was willing to travel but unable to reach any doctors. My endocrinologist had to make a few phone calls for me to get me in. During this time, because I was off spironolactone, I ended up in the hospital because of low potassium twice in one summer. The AVS procedure itself took about 45 minutes. They made sure they got enough samples before I was discharged. I was in the hospital for several hours to recover. The most uncomfortable part was feeling fluttery heart and being poked and prodded. I reminded myself that I gave birth to two children. This should be nothing. It was mentally being awake during the procedure that really freaked me out. They played 80s music which was calming. The nurses and doctor sang, which gave me a sense of calm. They also checked in on me to tell me I may feel poking and prodding so that it would not come as a surprise.
Treatment
Surgery went well. I was discharged next day. I felt better within a week. Soreness and the gas from the surgery subsided. I was slowly weaned off the drugs I used to take. Spironolactone and potassium came off first, which was actually a mistake because of the saline drip I had was flushing out my potassium and causing it to drop. After blood testing at the hospital, I was told to take 2 potassium pills a day and reevaluate medications weekly. Each week I came off a drug, eventually not taking anything as of Feb 2023.
Since Treatment
I wanted to participate in this testimonial to raise awareness of the disease as well as highlight how much Dr. Shah and the hospital means to me and my family — essentially extending/saving my life. Today I am free of any pain, symptoms, and not taking any medications. A miracle really, and it is truly a second lease on life! I am thankful and very grateful. I had a blood test this week, and all numbers are good!
