- CASE FILE
I get flu-like episodes and fluid retention in my face and central body. They can last for hours, a day, weeks or months.
ABOUT THIS CASE FILE
DESCRIPTION OF SYMPTOMS: In my episodic periods, I feel like I have the flu or a hangover. I never know what a day will bring: feeling good, or weak and unwell. Symptoms can vary from nausea, intense fatigue, muscle weakness/shakiness, muscle aches, or it may start out with heart palpitations, shortness of breath, and muscle weakness walking across the room, and then bring on nausea, fatigue, etc. When symptoms don't break, they advance.
ADVANCED SYMPTOMS: I get swollen eyelids, swollen face, central body edema (not arms and legs unless extremely severe), brain fog, hives, acid reflux, indigestion, ravenous hunger, intense dry skin/rashes, trouble sleeping, and intense nocturia. Randomly and new, I will get a swollen abdomen in the late afternoon or evening where I look 6 to 9 months pregnant due to rapid fluid retention (4 pounds in 2 hours/10 pounds in a couple of days--pitting edema). When symptomatic, stress on my body causes symptoms to flare.
UNEXPLAINED SEASONAL VARIATION: Typically in winter, I feel lousy from November to March. Then by spring I feel better. In July to September, I feel my best (though still mildly symptomatic) only to decline in the fall again. If I go south to a warm climate in winter because I crave the sun, my symptoms get better. Vitamin D in tests is normal. Have rare mutation for periodic fever that causes cold sensitivity, but mutation is of unknown significance. No one else has been identified in literature with this mutation so far but me. I also don't always react to cold exposure consistently.
TWO SEVERE YEARS (1998 and 2018): I was very sick and went doctor to doctor without answers. In addition to my symptoms, I had brief spikes of high blood pressure both years. In 1998, age 30, it was 130/90. In 2018, age 50, I had several episodes at a doctors offices with the highest being 150/100, but it was not constantly elevated. Most readings were normal. In 2018, I gained 15-20 pounds in 6 weeks (March to May). I outgrew my clothes, shoes, jewelry. I was unable to walk a block at this time. I was weak, my heart would race with any activity, I was too exhausted to do much and depended a lot on my husband. I needed lots of rest. It took six to nine months both times to get back to being reasonably myself again.
CARDIAC ISSUES: I got a Fitbit in 2018 due to severe symptoms, and I saw my heart rate was soaring to 160 bpm just sweeping my driveway or going to 140 just watering plants in my yard. I saw three cardiologists. They all had different opinions.
DIAGNOSIS: Tachycardia, bi-ventricular diastolic dysfunction and mild hypertrophy. No cause identified. I took a VO2 stress test and I was not symptomatic that day. I scored above average for my age with a 31. I have a strong heart but something is taxing it and we don't know what.
LOW SODIUM DIET and MAGNESIUM: One doctor thought I had heart failure (before tests were taken) and put me on a low sodium diet in November 2018. I also started magnesium citrate the same day for my intense muscle aches. Those two things changed my life. My symptoms have dramatically decreased since, but have not gone away completely. When I try to stop either, I get more symptoms back.I could be in a low symptom cycle right now, too. I don't know.
SODIUM CONNECTION: (see photos) I charted my symptoms and sodium intake, and something appears to turn on and cause me to be sodium sensitive. Then it turns off and I'm not. I can eat high sodium on some days with no reaction. Other days I will get sick.
ENDOCRINOLOGIST: Identified I have elevated TPO antibodies, but my thyroid is normal. She also took a renin/aldosterone test when I was eating 1000 mg of sodium a day, and my aldosterone was 60 (normal is 0-30). My renin was normal. My ARR was 15.
RULED OUT: Celiac disease, food allergies. I've considered I could be sodium sensitive but why does it turn on and off?
MEDICINE TAKEN: None.