My Strange Afflictions, Part 2

Continued from Cause and Effect – My Strange Afflictions, Part 1

I was so disgusted with my family physician  (I’d been with her for 15 years) that I went to her when I made it home, got a year’s worth of refills for the beta-blocker and never saw her again. We moved down to Florida permanently in August 2004. A few weeks later, I got a job as a cashier at Cracker Barrel. I’d always wanted to work there (I’m a people person 🙂 ), but the stress on my back from standing on my feet for 8 or more hours a day was too much. (The back issue is from a birth defect – another bizarre, interesting story.) And I didn’t feel good at all. I was anxious all the time and couldn’t figure out why I always felt so bad. A co-worker suggested I go to her doctor so I made the appointment. The last day I worked at CB, my husband found me sitting in my van in the parking lot crying. I felt so so sick and anxious, and working at CB turned out to be a nightmare prison for its employees. Yeah, we all love to eat there, but I’d never want to be employed by them again.

So, the new doctor listened to my symptoms, took me off of the beta-blocker and went with an ace-inhibitor, along with Xanax as needed. We went through a variety of different bp meds over the next year and a half trying to find one that would keep it down. None ever really worked.

I began writing my first story in the Spring of 2005. I joined RWA and FCRW, met some of the most wonderful people and began to believe I was on my way to becoming a published author! I felt very anxious most of the time, but I was doing okay until the Fall of 2006. I had another major panic attack and started having severe chest pains. My doctor ordered almost every cardiac test imaginable, and of course, everything always came back normal. I asked him if it could be acid reflux causing the pain and he said yes. *rolling eyes here* He prescribed omeprazole and the chest pains disappeared, for the most part.

But I still didn’t feel good and the panic attacks started to become a daily occurrence. The worst was when they happened while I was driving. Being stuck in the left-turn lane at a red light while having a panic attack is insane. Getting in the van or even looking at it caused horrible panic after that. Dr. K explained that when I have an attack, I’m unconsciously holding my breath. This is what caused my fingers to curl up and vision to close in. It starts with tingling in the backs of my thighs and quickly encompasses my whole body. He advised me not to drive because I could pass out at the wheel. Great. Can you imagine how hard life became for my husband? 😦  I love that man beyond all reason and appreciate him more than he’ll ever know.

The fear of having a heart attack or a stroke wouldn’t leave me. Morning nausea had been my daily friend for years along with odd stomach pains here and there. I went from being super-active to a vegetable curled up on the couch watching HGTV all day long until my husband or any one of our three sons got home. It didn’t matter who walked through the door, I would no longer be scared to death and all alone in the house. (A haunted house at that! Very creepy, cool story for another day. 😉 )

In 2008, my insurance changed to one my doctor didn’t take, I found Dr. F of Internal Medicine at our local university hospital. He was a resident at the time and my attending was Dr. A. The moment Dr. F heard my symptoms he ordered a blood test and knew what the culprit was. I have a rare disorder known as Primary Aldosteronism which causes uncontrollable high blood pressure and anxiety/panic due to the overproduction of the hormone aldosterone in my adrenal glands. The excess of this hormone causes an overproduction of renin (a proteolytic enzyme secreted by the kidneys; catalyzes the formation of angiotensin and thus affects blood pressure). This combination depletes my potassium and hangs on to salt.

The only answer was to treat the symptoms with Losartan, Spironolactone, and Hydrochlorothiazide. He put me on Zoloft for the panic/anxiety and gave me prescriptions for both Xanax and Ativan, to be taken – one or the other, but not both! – as needed. Ativan takes forever to actually work, but Xanax puts me into a dead sleep within 15 minutes. I’d wake up 4-8 hours later feeling like I’d been hit by a Mac truck, depending on whether I took .25mg or .5. Apparently, I’m super-sensitive to downers. I kept up this routine/regimen for three years.

At my next appointment, I found a new resident, Dr. L, had replaced Dr. F, but Dr. A was still my attending. Seeing that I wasn’t getting any better and actually getting worse in some aspects, Dr. L thought we should see if there was a tumor on either one of my adrenal glands. This would explain the overproduction of aldosterone. By this time, I had gained so much weight I could barely function due to the pain in my back. No matter how hard I tried to lose the pounds, five or ten would come off, but then go right back on. She scheduled me for an MRI and an appointment with a surgeon for possible lap-band surgery. I received a call from the physicians office that my insurance would no longer cover any tests ordered by Dr. L/Dr. A as they were no longer on the allowed list. What?! No one could give me a reason why.

I went without a doctor for the next year, but thankfully Dr. L had given me one year’s worth of refills for all my meds. At the beginning of 2012 I had to find a new doctor. Oh my goodness. What I found was a joke. He told me I didn’t have Aldosteronism and said I didn’t need the Spironolactone or Hydrochlorothiazide. And even though my bp was skyrocketing again, he said I didn’t have high blood pressure. I had to point out that 164/102 wasn’t “optimal.” He reluctantly prescribed the Lorsartan and the omeprazole. Oddly enough, he filled the Xanax and Ativan, but wouldn’t do the Zoloft. He only gave me three months of refills. When I went to make another appointment with him (I was too zombified to deal with finding another doctor at that time) his practice was gone.

I had no choice then, I had to find a real doctor. One who is proactive and willing to listen to me. I found Dr. J. He agreed to refill all the meds I wanted, but thought I needed to see a psychiatrist. 😐 He didn’t know if I had Aldosteronism or not and didn’t seem to care. I insisted he send me to an endocrinologist. Unfortunately, Dr. R, the endocrinologist he referred me to, was in the same medical group and all patient records are shared digitally. I went into Dr. R with him already predisposed to my needing to see a psychiatrist. Dr. J had put in my records that he didn’t think I needed to see an endocrinologist.

However, Dr. R did, without a doubt, conclude I have Primary Aldosteronism. He ordered an MRI of my adrenal glands and did a 24-hour urinalysis to see if I was also overproducing epinephrine or norepinephrine. I had to argue with this doctor at every visit, insist on an MRI of my adrenal glands, show him peer-study reports from Up To Date, a physicians’ website that supposedly only doctors could get information from. (The power of Google is a scary thing sometimes.) I had discovered that studies have found a correlation between overproduction of norepinephrine in people who have panic attacks. If my adrenal glands are overproducing aldosterone, why couldn’t they also be overproducing other hormones? And, doctors in Great Britain have successfully removed one adrenal gland in patients with PA, with a cure rate of 30-60%. Those percentages sound awesome to me and I’m more than willing to give it a shot. The risky procedure to discover which adrenal gland is overproducing is worth it to me. Dr. R seemed agreeable to this, but his concern was finding a surgeon in our area capable of removing an adrenal gland.

He was about to order the MRI be done at the university hospital, but I knew they had an MRI machine in this group’s medical plaza. Why wouldn’t he just send me there? He hesitated and said, “I guess “he’ll” do okay.” What??? Does this mean the radiologist isn’t very good? Since I have major issues with being in cars and the university hospital is across town, I was fine with going right there in my own Dr.’s facility to have the MRI done. The report came back negative – nothing seen on my adrenal glands. The urinalysis + blood test for the same hormones came back questionable to me. Dr. R was irritated that someone in his office had sent me the reports. He wouldn’t listen to me when I said some of the numbers came back near borderline high or low. And he said he didn’t know why my plasma renin activity is 3 times higher than it should be. The range is 0.25 – 5.82. Mine is 15.91. I insisted Dr. R refer me to Endocinology at the university hospital after I told him he needed to send me to someone who had time and cared enough to help me find a cure. I’m sure he couldn’t wait to kick me down the road.

To be continued.

7 thoughts on “My Strange Afflictions, Part 2

  1. Pingback: My Strange Afflictions, Part 1 |

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  3. Pingback: Cause and Effect – My Strange Afflictions, Part 3 |

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