What better day than today, Thanksgiving Day, for me to post my gratitude to Dr. Harari and her team for giving me my life back. Six weeks ago today, Dr. Harari removed my left adrenal and the tumor that was causing hyperaldosteronism. Removal of the tumor caused a lengthy list of symptoms to disappear within a matter of days, and I am feeling better than I have in many years!

In February 2011 I was diagnosed with an adrenal tumor that was causing my body to produce too much aldosterone. This was causing secondary hypertension and low potassium. My road to diagnosis was very long – I had to fight for years to prove that something was amiss other than garden-variety essential hypertension. I did not fit the typical essential hypertension – I am not overweight, have never smoked, exercise and practice yoga regularly. I am not under any unusual stress. The conventional advice – take lots of prescription drugs, watch diet and exercise – had failed me.

I had been having symptoms since the summer of 1997, when while relaxing at home reading, my heart suddenly started racing and I had chest pains. My roommate drove me to the ER, where they gave me Ativan and dismissed it as a panic attack. This was the first of many so-called panic attacks that I had between 1997 and 2003.

Soon thereafter I developed numbness and tingling in my hands and feet, and severe back pain due to my left trapezius muscle going into spasm. Tests were run for multiple sclerosis, but were negative. Again, nothing was diagnosed. From 1997 to 2001 my blood pressure was always very low, 110s/60s at most.

In December of 2001 I ended up in the ER when I inexplicably could not stop throwing up. When I got there, my blood pressure measured 145/85! I had never had high blood pressure in my life and was quite worried. An EKG showed left ventricular hypertrophy. At the time I was unemployed and uninsured, and nothing much was done other than being given the usual “watch stress, diet and exercise” advice.

Finally employed and insured again, I went to a new primary care doctor. In addition to the moderately high blood pressure (still 140s/low 80s), I had begun to notice occasional racing pulse and palpitations, hair loss from my head and hair growth on my face, and increasingly irregular menstruation (a problem I’ve had my entire life). I mentioned the LVH to her, but she seemed unconcerned and did not do further testing beyond a BMP. My potassium came back low. The doctor put me on Yasmin, an oral contraceptive which she thought would help with both the potassium and menstrual problems. It did, but over time it had a negative affect on my emotional health, so I discontinued it. At this point I was put on 25mg Spironolactone, which helped the BP come back down to 120/70 or so, but after about three months I developed severe breast pain and had to discontinue it.

My insurance changed and with it, my primary care doctor changed. The new primary doc referred me to a cardiologist, who ordered a CT to check for renal artery stenosis. This was negative, so he concluded essential hypertension. This was the beginning of several years of experimentation with various antihypertensives and all of their miserable side effects – beta blockers made me tired and gave me headaches and shortness of breath; ACE inhibitors made me cough; just about everything made my ankles swell. Eventually it was determined that Diovan and HCTZ didn’t cause intolerable side effects, and I started with 80mg Diovan and 12.5mg HCTZ.

A move and a job change led to another primary care doctor change. At my first checkup, I mentioned that I was becoming increasingly concerned about the racing heart/palpitations that seemed to have no known cause. He responded by increasing the Diovan dosage to 160mg, then to 320 mg, then adding Bystolic, which gave me the worst shortness of breath I’ve ever experienced. He then added Cardizem 180mg. From the beginning, I told the doctor that I felt the Cardizem made things worse – I thought it triggered headaches and made the palpitations more frequent. He told me this was impossible.

My first BMP results with this doctor revealed low potassium, and he put me on 20MEQ of potassium daily. I also tested extremely low for Vitamin D, and he told me to take over the counter supplements. I found that this seemed to increase the frequency of palpitations; I also noticed that my blood pressure began running in the low 160s/high 90s while on the vitamin D. The doctor dismissed this as being medically impossible; he said the palpitations and increased BP were caused by anxiety, recommended an SSRI, and said these were “typical problems for a woman my age.” I decided to take my business elsewhere.
By now it was December 2010. Within 5 minutes of hearing my medical history, the new asked if I’d ever had my aldosterone levels checked. When I said no, he referred me to a local hypertension specialist, who took me off all meds in preparation for testing. Surprise – rather than my BP going up, it actually *decreased* off medication! Things moved fairly quickly after this – after being off all medications for two weeks, my aldosterone came back high, renin low, and potassium low. A CT scan showed a 1cm nodule in my left adrenal.
The next step was adrenal vein sampling (AVS) which determines if one, or both adrenals are overproducing aldosterone. I had to have this done twice – it’s a delicate and complicated procedure, and often results are inconclusive. The second time, done in August 2011, clearly showed that only my left adrenal, the one with the visible tumor, was bad, which meant that there was a very good chance that having it removed would cure the hypertension and low potassium.

Once I had the results, I immediately made an appointment with Dr. Harari. I was scheduled for surgery, and on October 13, 2011, my left adrenal and the tumor were removed via laparoscopic adrenalectomy. There were no complications and I was released the next day.
By November 4, my medical team – my internist, hypertension specialist, and Dr. Harari – had all pronounced me “cured.” My blood pressure averages 120s/70s, my potassium has stabilized on the high end of normal, and I am off all medications. I feel better than I have in years – funny how you have no idea how sick you were until you are no longer sick!

Dr. Harari and her wonderful team made the whole frightening experience of surgery (it was my first) as easy as I could imagine. My thanks goes out to all of them for the “second chance” I have been given.

I have kept a blog throughout my entire experience with hyperaldosteronism (also called primary aldosteronism, or Conn’s Syndrome). For anyone wishing to learn more about the diagnosis and treatment of this disease, it can be accessed at http://http://waywardbus.wordpress.com.